Its been a very long year and I know I have not updated anyone on how my son is faring but tonight I have the time and the need to share his progress.
Ever since his diagnosis of PANDAS/PANS in Nov 2013 we have been trying to figure out how to reduce the tics because they became a pretty constant staple in our daily lives. We put him on daily antibiotics for 7 months to kill the strep infection that he acquired in Nov 2013 but his tics did not go away. They reduced in severity but they were still very present all day long. The daily antibiotics (as I now realize) were not the right decision. But I was in a state of panic and needed relief so I did what I thought was best.
In the end, the 2 supplements that I will talk about now have been the catalyst for real change in my son's condition. First: BRAVO Probiotic. Because of all the antibiotics, my son's gut was a mess. He had yeast again and lots of bad bacteria. He even had clostridia. Once I started him on the BRAVO all his vocal tics resolved. I almost didn't believe it could be real because I had been living with them for so long but by the middle of the summer 2014 I knew that his gut must have healed. We did a follow up OAT test and knew for sure that the yeast was gone and so was the clostridia along with the vocal tics! What an obvious connection. You can read more about BRAVO here.
What we were left with was a whole mess of motor tics. Head nods, knee knocks, eye blinks, lip pouts, arm flaps, etc. I noticed that these would increase after exercise, being outside, exposed to pollen, temperature changes or offending foods. One night I was reading all about mast cell activation disorder and it seemed that my son fit the description to a T.
Mast cells are the body's first line of defense when it comes to allergens. Once they sense an allergen is present, they release histamine which then causes an inflammatory response.The inflammation is what was allowing his basal ganglia to be constantly attacked. In normal functioning bodies, the excess histamine is processed by an enzyme called DAO (diamine oxidase). In Cole's situation his mast cells were over acting and releasing histamine all the time. He needed a way to reduce this load and I started supplementing him with DAO under the brand name HISTAME. You can buy it here .
Within one week of supplementing with the HISTAME almost all of his motor tics resolved! We are now 4 and a half months virtually tic free. I haven't seen anything like this in 2 years. I can't even believe it. I am so afraid to believe it. But I know I have to share this because so many others out there are searching for answers and the medical community is just not up to speed with these types of disorders in children. In fact, the majority of pediatricians have never heard of or do not believe in PANDAS/PANS at all. Thus, parent's like me must seek out doctors that specialize in this and in most cases do not take insurance and charge $450+ an hour.
Where PANDAS/PANS is concerned, no two children are a like. But there are common denominators in many cases and if any of these symptoms mirror your child, please seek care from an integrative MD that believes in PANDAS/PANS. Do the research and get on latitudes.org. There is a wealth of information out there but most don't even know where to begin.
Right now, we are reclaiming our lives! Cole is amazing. He is in 1st grade, gifted and athletic. He has many friends and is learning a 2nd language. I can not be more proud of who he is. Throughout this entire journey, he and his brother have exemplified the true meaning of poise and grace. Me, on the other hand was a wreck and did not know how to handle anything. What I did do right was to take all my negative energy and focus it on finding healing for my son. I do think we are finally on that path. I don't think we are completely out of the woods but I think we have uncovered the key to his healing and with the help of some very amazing integrative physicians and homeopaths and we inch closer every day.
Showing posts with label healing. Show all posts
Showing posts with label healing. Show all posts
Tuesday, March 10, 2015
Tuesday, October 8, 2013
How I Healed My Son's Tourette's Syndrome (Part VI) State of Mind is Everything
By now I hope you have read these posts in chronological order because that is how I am telling the story. With that said, let me take a step back for a minute. Up until this point, I had a sense of dread in the pit of my stomach every waking minute of every day since I clued into the fact that Cole had Tourette's Syndrome. I was constantly on edge, expending so much energy listening for tics and watching my son and worrying about the future that I was exhausted every night by 8pm and then awake in panic attack mode by 2am. It was a horrible existence and I was unhealthy physically but most importantly, mentally. My mind was filled with negative thoughts and a lot of people surrounding me (with the exception of my always supportive husband) did not believe that the holistic approach would yield any results for my son. They thought I was wasting my time and in some instances, putting Cole's life at risk with all the supplements and diet changes I was forcing on him. It was a lonely place to be. I didn't want to leave the house or socialize with friends. I just wanted to sit inside and watch Cole to see how often he ticced. I know this sounds insane and I agree, it was.
That all changed once I connected with Shannon. Shannon is a mother of two boys in SC and her oldest son (a couple of years older than Cole) also has Tourette's! She was posting her story on Latitudes (the forum where people treat neurological disorders holistically) and it seemed like she was a couple of months ahead of me and was having success! She reached out to me and we chatted on the phone for a while. She had been through everything I was currently experiencing, including all the nasty emotional stuff but was seeing the light at the end of the tunnel and had a very positive out look. She was a life preserver in the perfect storm. I latched on to her positivity and it helped me navigate through the treacherous and pitch black waters.
It was the end of July and we were back from our two weeks in NY and Cole's tics were ramping up again. He was in a week of summer camp and I would ask the counselor each day how he was doing and each day she said the tics were getting worse. He was clearing his throat loudly now and flapping his arms forcefully. One day I broke down and just cried on the playground for what seemed like an hour. A couple of the moms of Jake and Cole's camp mates gave me hugs as they could sympathize with me but they really did not get it 100%. I was just a mess and Kindergarten was 2 weeks away.
Shannon and I started texting on a regular basis that week and I told her what was going on. She convinced me that I needed to pull dairy from Cole's diet. On his food sensitivity panel, dairy came up as a mild intolerance and even Dr. Bhatia said I didn't have to pull it. I was holding on to it because Cole loved his grilled cheeses and we just got adjusted to the gluten/corn free bread and I was afraid to change up the cheese on him. Dairy free cheese is terrible. Other than that, Cole didn't drink milk and he wasn't too keen on yogurt so it was really just the cheese that was holding me back. I decided that I had to take this chance so that Friday I stopped giving him dairy from the time he came home from camp.
By the next afternoon the miraculous happened! Cole's tics all but went away. Not only that but his behavior was incredible. He was calm, focused and content. He became considerate and started doing thoughtful things for me and his brother like coming inside the house to get ice cold water for the both of us and bringing it outside!! This kid couldn't think past his right hand less than 24 hours ago and now he was a completely different child. I was in shock. Even his OCD tendencies dissipated. No more counting things, no more having to start from the beginning, less frustration and no more whining!!!
I was afraid to believe that what was happening was real. We had seen improvement in the past (although not as significant as this) and the tics eventually had come back. So I told Shannon what i was experiencing and she just filled me with positivity so much so that I was able to BELIEVE that healing was occurring. She told me it could take up to 2 years to see complete healing and that there will be bumps in the road but we should be at a new baseline for tics and the general trend should be towards healing. Knowing that I was following in her footsteps helped tremendously. She talked me off the ledge dozens of times. She also shared some great recipes for grain free muffins and cookies that I put in their lunch boxes everyday and they are a hit!
With one week to go before Kindergarten, Cole's tics had reduced dramatically to the point where an uninformed person would not really know he had any tics at all. The true test as to whether he was healing or just "waning" would be when school started. Tourette's Syndrome is characterized by periods of "waxing" and "waning". This means that sometimes the tics become more intense and more frequent and other times they tend to lessen and almost disappear (but never really going away completely) until they start to wax again. A neurologist would have told me that what I was currently experiencing with Cole was just a typical waning period and that his tics would come back just as intense as they had been in the past. But what most parents of kids with TS know is that school tends to be a huge trigger for tics. School is associated with stress and anxiety, both which stimulate tics and Shannon confirmed this with me as well. Thinking back to the previous year, I do remember Cole's grunts becoming more apparent right around when school started and then dissipating sometime in late October. It completely made sense and I would know for sure once Kindergarten started if this new diet change was just a fluke. Jake and Cole were not only going into a new class but Kindergarten was a new school as well. Big changes were just a week away and I tried to stay positive.
That all changed once I connected with Shannon. Shannon is a mother of two boys in SC and her oldest son (a couple of years older than Cole) also has Tourette's! She was posting her story on Latitudes (the forum where people treat neurological disorders holistically) and it seemed like she was a couple of months ahead of me and was having success! She reached out to me and we chatted on the phone for a while. She had been through everything I was currently experiencing, including all the nasty emotional stuff but was seeing the light at the end of the tunnel and had a very positive out look. She was a life preserver in the perfect storm. I latched on to her positivity and it helped me navigate through the treacherous and pitch black waters.
It was the end of July and we were back from our two weeks in NY and Cole's tics were ramping up again. He was in a week of summer camp and I would ask the counselor each day how he was doing and each day she said the tics were getting worse. He was clearing his throat loudly now and flapping his arms forcefully. One day I broke down and just cried on the playground for what seemed like an hour. A couple of the moms of Jake and Cole's camp mates gave me hugs as they could sympathize with me but they really did not get it 100%. I was just a mess and Kindergarten was 2 weeks away.
Shannon and I started texting on a regular basis that week and I told her what was going on. She convinced me that I needed to pull dairy from Cole's diet. On his food sensitivity panel, dairy came up as a mild intolerance and even Dr. Bhatia said I didn't have to pull it. I was holding on to it because Cole loved his grilled cheeses and we just got adjusted to the gluten/corn free bread and I was afraid to change up the cheese on him. Dairy free cheese is terrible. Other than that, Cole didn't drink milk and he wasn't too keen on yogurt so it was really just the cheese that was holding me back. I decided that I had to take this chance so that Friday I stopped giving him dairy from the time he came home from camp.
By the next afternoon the miraculous happened! Cole's tics all but went away. Not only that but his behavior was incredible. He was calm, focused and content. He became considerate and started doing thoughtful things for me and his brother like coming inside the house to get ice cold water for the both of us and bringing it outside!! This kid couldn't think past his right hand less than 24 hours ago and now he was a completely different child. I was in shock. Even his OCD tendencies dissipated. No more counting things, no more having to start from the beginning, less frustration and no more whining!!!
I was afraid to believe that what was happening was real. We had seen improvement in the past (although not as significant as this) and the tics eventually had come back. So I told Shannon what i was experiencing and she just filled me with positivity so much so that I was able to BELIEVE that healing was occurring. She told me it could take up to 2 years to see complete healing and that there will be bumps in the road but we should be at a new baseline for tics and the general trend should be towards healing. Knowing that I was following in her footsteps helped tremendously. She talked me off the ledge dozens of times. She also shared some great recipes for grain free muffins and cookies that I put in their lunch boxes everyday and they are a hit!
With one week to go before Kindergarten, Cole's tics had reduced dramatically to the point where an uninformed person would not really know he had any tics at all. The true test as to whether he was healing or just "waning" would be when school started. Tourette's Syndrome is characterized by periods of "waxing" and "waning". This means that sometimes the tics become more intense and more frequent and other times they tend to lessen and almost disappear (but never really going away completely) until they start to wax again. A neurologist would have told me that what I was currently experiencing with Cole was just a typical waning period and that his tics would come back just as intense as they had been in the past. But what most parents of kids with TS know is that school tends to be a huge trigger for tics. School is associated with stress and anxiety, both which stimulate tics and Shannon confirmed this with me as well. Thinking back to the previous year, I do remember Cole's grunts becoming more apparent right around when school started and then dissipating sometime in late October. It completely made sense and I would know for sure once Kindergarten started if this new diet change was just a fluke. Jake and Cole were not only going into a new class but Kindergarten was a new school as well. Big changes were just a week away and I tried to stay positive.
Monday, October 7, 2013
How I Healed My Son's Tourette's Syndrome (Part V) Yeast
At the end of Part III I mention the mother of all blood tests - the NutraEval. This test measures levels of vitamins, amino acids, neurotransmitters (indirectly), toxins, heavy metals, yeast albicans (indirectly), and various other things that I am sure I'm not mentioning. The big "take-away" for us with Cole what that 1) he was not detoxing 2) He was not methylating 3) he was deficient in all his B vitamins and 4) he most likely had candida (yeast overgrowth). This was a lot to digest but also very important pieces to the puzzle.
If you aren't sure what methylation is, join the club because I had no idea either. Methylation (and this is just my interpretation of it - for a real definition, google it please) is the process of the body absorbing the vitamins and nutrients from food and transferring that energy to the brain. I could be off in my interpretation but I do know that if a person is not methylating, they are not getting enough energy to the brain and the brain is not producing important amino acids like glutathione which is a detoxer. Hence the reason why Cole was a poor detoxer. One was probably related to the other. I have read that up to 20% of the population has genetic mutations on the MTHFR gene (the gene that controls methylation). These mutations can cause issues in the methylation process which is illustrated like cogs or gears in a system. So when one gear stops turning, the entire system doesn't work. Many children on the autistic spectrum have issues methylating and most likely have mutations on their MTHFR gene. I did not order any genetic testing for Cole YET but its something I may look into down the road.
We went home that day from Dr. Taz's office with a new list of things to add to our current regimen. it was becoming a full time job to take care of my son and at this point I had to take a leave of absence from my actual paying job. It was a very hard decision to make but in the end it was the right one and I have no regrets. In addition, I happen to have the best boss in the world and he completely understood what I was dealing with and was incredibly supportive of my decision to focus 100% on my son.
So the next step in the process was to deal with the candida. From what I have read and hear first hand, killing yeast in the body is one of the most difficult things to do because it keeps growing back if you keep feeding it. The reason why its so bad is because it kills all the good bacteria in the gut and weakens the immune system. It also releases toxins that cross over an already permeable gut and cause neurological damage. Yeast feeds off of carbs, sugar, acidic foods, vinegar (not apple cider) and many other things, the list is long. If you plan on killing yeast you MUST go on an anti-yeast promoting diet such as the Specific Carbohydrate Diet or SCD. This was too much for Cole to handle so I modified it. I was terrified but I knew I had to battle through this. I knew the rewards at the end would be well worth it.
But let's answer one question first. You may be asking yourself, how the heck did Cole get yeast to begin with? I mean, he is only 5! I believe that it started at birth. He was a C-section baby so he did not get the good bacteria from the birth canal. He started life at a disadvantage but like I said there was nothing I could do about that. He took many doses of antibiotics from age 2 - 5 for recurrent ear infections and a diet high in sugar and processed food (even though the processed food was considered "organic"). All these factors probably created a nice environment for the yeast to grow and take hold, weakening his immune system and slowly causing neurological damage. It just took 5 and a half years to get to the point where it was glaring and "screaming" for my attention.
Dr. Taz wanted me to put Cole on Nystatin. Its a presciption anti fungal that does a pretty good job at killing off the yeast, especially in kids that have a hard time accepting an SCD diet. I was afraid to put him on this so I chose Grapefruit Seed Extract instead. Its an all natural anti fungal and some say it kills the yeast while leaving the good bacteria alone. I put 3 drops in his NAC (the amino acid) tincture in the AM and 3 drops in the PM, titrating up to 8 drops a day.
They warned me about yeast die off and to be prepared for it. Yeast die off is when massive amounts of yeast die at the same time releasing a deluge of toxins into the body (more so than when the yeast is alive). The body becomes overwhelmed and can't detox fast enough so "die off" symptoms will occur. These symptoms can mimic the flu. After one week of Grapefruit Seed Extract, Cole woke up and said he felt hot but had no fever. After he drank some water he began to vomit uncontrollably. He could keep nothing down and I had to take him to urgent care. I felt terrible but they gave him a zofran to stop vomiting and they could not tell me what was wrong. There was no fever, no infection, no sore throat, no nothing. I told them about yeast die off and my hypothesis and they looked at me like I was a crazy lady. So I just took the zofran and went on my way. By 3pm that day, Cole was playing on our play structure doing flips off the slide. I can not explain what happened to him that day. Dr. Taz thinks it was a stomach virus, I believe it was die off. The reason being, that the next day Cole's tics went from a 7 out of ten (in intensity and frequency) to a 2 out of 10. My husband and I were in shock. We hadn't seen Cole like this in months. He could actually go 30 minutes with out ticcing. It was huge!!! I felt like I could breathe!!! We had bits and pieces of actual silence in our house and my anxiety level went way down. There was definitely a connection between Cole's die off symptoms and this new level of ticcing. Whatever it was, I was accepting it with open arms.
As I mentioned before, we had to modify Cole's diet as we were killing off the yeast. I removed almost all sugar. The only sugar he got was 4oz of organic OJ, berries and a low sugar, gluten/corn free cookie (which he loves by the way). All in all it was less than 20 grams of sugar a day. After about a week on this diet some amazing things happened. My picky eater suddenly was opening up to different foods and he actually ate a vegetable!!! For the first time in his life he picked up a piece of broccoli and ate it. Before this, his sensory issues prevented him from allowing any vegetable to even touch his plate or come with in a 2 ft radius of his body. Now he was picking it up, putting it in his mouth, chewing and swallowing! Hallelujah!!!!! He started eating grilled chicken, turkey, brown rice and wait for it.....salmon! I was making him bacon and eggs for breakfast, almond butter on gluten free bread for lunch with berries and grilled chicken with brown rice and broccoli for dinner. Water with every meal. It was astonishing to witness. My Cole was now eating better than his brother and I attribute this to cutting out all the sugar.
What was interesting to see was the yeast cravings that he had. As the yeast was being killed off, it was trying so hard to regrow in his body. It would cause him to have sugar cravings. Intense needs for sugar where if not met, he would go into a full blown temper tantrum. My son never had tantrums as a child and I certainly didn't believe he was starting them up now at 5 and a half. This was something biological. All he wanted was sugar and he begged for it like his life was ending. Trust me, it was hard not to give in. I felt terrible but I stayed focused. I withheld. I battled through. Cravings are now gone.
So this whole die off, new diet renaissance thing happened 4 days prior to our annual trip to NY. I was elated. All my worries about how my family was going to perceive Cole disappeared. He was still ticcing but at a much lower level and we could go to NY and enjoy our time there. For two weeks we went to the beach, met up with my best friends and their kids, hung with family and just enjoyed our summer! Cole ate so well in NY too! We were able to maintain his diet and supplements consistently even though we were on a relaxed summer schedule.
What I came to realize now that Cole was eating such a wider variety of foods was that I could finally eliminate the processed crap. So out went the cookies, crackers and chips and in with the berries, almond butters and homemade grain free muffins. That's right! I was baking from scratch all of his snacks now. I will share these recipes with you in another post but for now just know that its possible to remove the processed food from your pantry. Its a crutch, its convenient but its hurting our health!
We got back from NY and things were still good but I noticed Cole's tics slowly increasing again. Now those long periods of time without any tics were getting shorter and shorter until we were back with constant ticcing. My anxiety level increased again. Every time I heard a tic it was like a sharp knife was stabbing me in the stomach. Call it dramatic but its true. That is how I was feeling. It HURT me physically to hear these noises and see these forceful movements that my son was making. Plus, it was 3 weeks till Kindergarten and I was not sure what to do.
I called the principal and the special ed coordinator. I told them what was going on and how I wanted to get an IEP started right away. We had the diagnosis and I wanted the full support of the school. They were completely willing to work with me but encouraged me to wait and see how Cole did in Kindergarten before starting the IEP process. I was terrified. If things kept on like this, it would be very difficult for a teacher to teach around all his noises, some of which were very loud and explosive. Things were heading in the wrong direction for us and even though I still had Cole on the anti fungal regimen (5 weeks at this point) and plenty of other options awaited me, I was still discouraged.
That was when I connected with Shannon from SC. God sent her to me and she truly helped me change the course of this entire journey. She is my angel.......
If you aren't sure what methylation is, join the club because I had no idea either. Methylation (and this is just my interpretation of it - for a real definition, google it please) is the process of the body absorbing the vitamins and nutrients from food and transferring that energy to the brain. I could be off in my interpretation but I do know that if a person is not methylating, they are not getting enough energy to the brain and the brain is not producing important amino acids like glutathione which is a detoxer. Hence the reason why Cole was a poor detoxer. One was probably related to the other. I have read that up to 20% of the population has genetic mutations on the MTHFR gene (the gene that controls methylation). These mutations can cause issues in the methylation process which is illustrated like cogs or gears in a system. So when one gear stops turning, the entire system doesn't work. Many children on the autistic spectrum have issues methylating and most likely have mutations on their MTHFR gene. I did not order any genetic testing for Cole YET but its something I may look into down the road.
We went home that day from Dr. Taz's office with a new list of things to add to our current regimen. it was becoming a full time job to take care of my son and at this point I had to take a leave of absence from my actual paying job. It was a very hard decision to make but in the end it was the right one and I have no regrets. In addition, I happen to have the best boss in the world and he completely understood what I was dealing with and was incredibly supportive of my decision to focus 100% on my son.
So the next step in the process was to deal with the candida. From what I have read and hear first hand, killing yeast in the body is one of the most difficult things to do because it keeps growing back if you keep feeding it. The reason why its so bad is because it kills all the good bacteria in the gut and weakens the immune system. It also releases toxins that cross over an already permeable gut and cause neurological damage. Yeast feeds off of carbs, sugar, acidic foods, vinegar (not apple cider) and many other things, the list is long. If you plan on killing yeast you MUST go on an anti-yeast promoting diet such as the Specific Carbohydrate Diet or SCD. This was too much for Cole to handle so I modified it. I was terrified but I knew I had to battle through this. I knew the rewards at the end would be well worth it.
But let's answer one question first. You may be asking yourself, how the heck did Cole get yeast to begin with? I mean, he is only 5! I believe that it started at birth. He was a C-section baby so he did not get the good bacteria from the birth canal. He started life at a disadvantage but like I said there was nothing I could do about that. He took many doses of antibiotics from age 2 - 5 for recurrent ear infections and a diet high in sugar and processed food (even though the processed food was considered "organic"). All these factors probably created a nice environment for the yeast to grow and take hold, weakening his immune system and slowly causing neurological damage. It just took 5 and a half years to get to the point where it was glaring and "screaming" for my attention.
Dr. Taz wanted me to put Cole on Nystatin. Its a presciption anti fungal that does a pretty good job at killing off the yeast, especially in kids that have a hard time accepting an SCD diet. I was afraid to put him on this so I chose Grapefruit Seed Extract instead. Its an all natural anti fungal and some say it kills the yeast while leaving the good bacteria alone. I put 3 drops in his NAC (the amino acid) tincture in the AM and 3 drops in the PM, titrating up to 8 drops a day.
They warned me about yeast die off and to be prepared for it. Yeast die off is when massive amounts of yeast die at the same time releasing a deluge of toxins into the body (more so than when the yeast is alive). The body becomes overwhelmed and can't detox fast enough so "die off" symptoms will occur. These symptoms can mimic the flu. After one week of Grapefruit Seed Extract, Cole woke up and said he felt hot but had no fever. After he drank some water he began to vomit uncontrollably. He could keep nothing down and I had to take him to urgent care. I felt terrible but they gave him a zofran to stop vomiting and they could not tell me what was wrong. There was no fever, no infection, no sore throat, no nothing. I told them about yeast die off and my hypothesis and they looked at me like I was a crazy lady. So I just took the zofran and went on my way. By 3pm that day, Cole was playing on our play structure doing flips off the slide. I can not explain what happened to him that day. Dr. Taz thinks it was a stomach virus, I believe it was die off. The reason being, that the next day Cole's tics went from a 7 out of ten (in intensity and frequency) to a 2 out of 10. My husband and I were in shock. We hadn't seen Cole like this in months. He could actually go 30 minutes with out ticcing. It was huge!!! I felt like I could breathe!!! We had bits and pieces of actual silence in our house and my anxiety level went way down. There was definitely a connection between Cole's die off symptoms and this new level of ticcing. Whatever it was, I was accepting it with open arms.
As I mentioned before, we had to modify Cole's diet as we were killing off the yeast. I removed almost all sugar. The only sugar he got was 4oz of organic OJ, berries and a low sugar, gluten/corn free cookie (which he loves by the way). All in all it was less than 20 grams of sugar a day. After about a week on this diet some amazing things happened. My picky eater suddenly was opening up to different foods and he actually ate a vegetable!!! For the first time in his life he picked up a piece of broccoli and ate it. Before this, his sensory issues prevented him from allowing any vegetable to even touch his plate or come with in a 2 ft radius of his body. Now he was picking it up, putting it in his mouth, chewing and swallowing! Hallelujah!!!!! He started eating grilled chicken, turkey, brown rice and wait for it.....salmon! I was making him bacon and eggs for breakfast, almond butter on gluten free bread for lunch with berries and grilled chicken with brown rice and broccoli for dinner. Water with every meal. It was astonishing to witness. My Cole was now eating better than his brother and I attribute this to cutting out all the sugar.
What was interesting to see was the yeast cravings that he had. As the yeast was being killed off, it was trying so hard to regrow in his body. It would cause him to have sugar cravings. Intense needs for sugar where if not met, he would go into a full blown temper tantrum. My son never had tantrums as a child and I certainly didn't believe he was starting them up now at 5 and a half. This was something biological. All he wanted was sugar and he begged for it like his life was ending. Trust me, it was hard not to give in. I felt terrible but I stayed focused. I withheld. I battled through. Cravings are now gone.
So this whole die off, new diet renaissance thing happened 4 days prior to our annual trip to NY. I was elated. All my worries about how my family was going to perceive Cole disappeared. He was still ticcing but at a much lower level and we could go to NY and enjoy our time there. For two weeks we went to the beach, met up with my best friends and their kids, hung with family and just enjoyed our summer! Cole ate so well in NY too! We were able to maintain his diet and supplements consistently even though we were on a relaxed summer schedule.
What I came to realize now that Cole was eating such a wider variety of foods was that I could finally eliminate the processed crap. So out went the cookies, crackers and chips and in with the berries, almond butters and homemade grain free muffins. That's right! I was baking from scratch all of his snacks now. I will share these recipes with you in another post but for now just know that its possible to remove the processed food from your pantry. Its a crutch, its convenient but its hurting our health!
We got back from NY and things were still good but I noticed Cole's tics slowly increasing again. Now those long periods of time without any tics were getting shorter and shorter until we were back with constant ticcing. My anxiety level increased again. Every time I heard a tic it was like a sharp knife was stabbing me in the stomach. Call it dramatic but its true. That is how I was feeling. It HURT me physically to hear these noises and see these forceful movements that my son was making. Plus, it was 3 weeks till Kindergarten and I was not sure what to do.
I called the principal and the special ed coordinator. I told them what was going on and how I wanted to get an IEP started right away. We had the diagnosis and I wanted the full support of the school. They were completely willing to work with me but encouraged me to wait and see how Cole did in Kindergarten before starting the IEP process. I was terrified. If things kept on like this, it would be very difficult for a teacher to teach around all his noises, some of which were very loud and explosive. Things were heading in the wrong direction for us and even though I still had Cole on the anti fungal regimen (5 weeks at this point) and plenty of other options awaited me, I was still discouraged.
That was when I connected with Shannon from SC. God sent her to me and she truly helped me change the course of this entire journey. She is my angel.......
How I Healed My Son's Tourette's Syndrome (Part IV) Handle Therapy
In conjunction with the diet changes and supplements, I also sought out a HANDLE Practitioner. You may be asking yourself 2 things: What the heck is HANDLE and why is this crazy lady doing so much at one time to her kid? Well, I was grasping at straws and was a little unfocused in the beginning. This was certainly a journey and I was learning as I went and to be honest, things got worse before they got better probably because I threw so much at my kid at once. But HANDLE is an integral part to the puzzle and I really need to mention it and give it the credit it deserves.
HANDLE is a practice where you perform certain types of neurological exercises designed to strengthen the vestibular system and integrate reflexes. It does many other things as well that I am not able to articulate but go to the website and read up on it for yourself. Many parents of children with neurological issues have seen fabulous results by learning these exercises and performing them consistently on their children. I read a positive testimony on the Latitudes forum and looked into it in my area and luckily I found 2 practitioners to choose from.
In our first session Sarah Anderson (Handle Practitioner) evaluated Cole by just watching him and asking him to do some simple gross and fine motor exercises. He was all over the place and non complaint for many of her requests but she got a good idea of what his needs were. She told me that since he was a twin and I was bedridden for most of my pregnancy that he did not get vital in utero movement that would have helped to develop his vestibular system. He suffered more than Jake because of his position in utero. He was transverse and tucked up under my ribs. He was barely able to move and this caused major trauma. The C-section that I had did not help matters either because he missed out on the very important experience of going through the birth canal. There was nothing I could have done differently to avoid the C-section so I am not even going there. It is what it is and now we just need to keep moving forward.
Sarah chose about 10-12 exercises to do with Cole. She had me come back and she taught me how to do them one by one. She told me to practice on myself before showing them to Cole and once I do show them to Cole, I need to watch to see if he gets agitated by them. Because if he does, I would need to stop immediately. The exercises were very simple but yet had profound effects on the nervous system and if a child is in a state of stress and the exercise is still preformed, his nervous system can become more disorganized. So there was a lot of stuff to be aware of and most of all I had to take my time and go slow. This was not part of my plan because as you all know, the countdown to Kindergarten was in full swing!
To further complicate things, Sarah had me drive to Macon, GA in June to see a woman named Janet Oliver, a reflex specialist that practices HANDLE techniques but goes even deeper. On June 7th, Cole and I took the 2 hour drive to Macon and we saw Janet. Cole was awful. He told Janet he wanted her to die and would not cooperate with her at all! I have never heard those words come out of my angels mouth, ever! I thought my trip down there was going to be a big waste. He actually seemed possessed that day but I guess it was good that Janet saw this because she was able to get a good handle (no pun intended) on what his body needed. She saw that many of his infantile reflexes had not integrated and that his body was not organized in its movement. She gave us 10 more exercises to do at home and sent us on our way. She videoed the entire session so I could go back and look at what she did. It was amazing. I was to do these exercises for 5 months and I should start to see resolution with his issues. I wish I could share these exercises with you all right here on my blog but it wouldn't help because each child is different and no two sets of exercises will ever be the same. Each child will need their own unique regimen to address the neurological issues they are dealing with.
Over this past summer, Cole and I got comfortable with our exercises. I made them a night time routine and he looked forward to them. I did notice that a couple of the ones that dealt with the vestibular system were too hard on him and actually increased his tics so I had to back off. There were many setbacks this summer. Some days I felt like we were getting somewhere and others were just a night mare. But it was important that I mentioned HANDLE because without these 2 women we would not be where we are today.
If anyone who has a child with special needs related to neurological disorders and is interested in learning more about HANDLE, please visit www.HANDLE.org or contact me. I can help you locate a practitioner in your area. In my opinion, this was the most affordable part of our healing protocol. For $400, I was able to learn these exercises for indefinite use with my son. Its like teaching a person to fish!! There are other centers out there that claim to do the same thing (i.e. Brain Balance) but charge thousands of dollars for a 12 month program and they never teach you anything. You just bring your child to their center 2x a week or more and they do the exercises for you. Maybe that is appealing to some people but I enjoyed the freedom of doing the exercises on my son at any time of the day, any day of the week. It also served as a bonding experience for us. We are so incredibly close (not that we weren't before) but there is an internal connection between that I can't describe in words. I have learned so much about my child and its taught me patience, the one thing I have been struggling with my entire life. Its really beautiful.
HANDLE is a practice where you perform certain types of neurological exercises designed to strengthen the vestibular system and integrate reflexes. It does many other things as well that I am not able to articulate but go to the website and read up on it for yourself. Many parents of children with neurological issues have seen fabulous results by learning these exercises and performing them consistently on their children. I read a positive testimony on the Latitudes forum and looked into it in my area and luckily I found 2 practitioners to choose from.
In our first session Sarah Anderson (Handle Practitioner) evaluated Cole by just watching him and asking him to do some simple gross and fine motor exercises. He was all over the place and non complaint for many of her requests but she got a good idea of what his needs were. She told me that since he was a twin and I was bedridden for most of my pregnancy that he did not get vital in utero movement that would have helped to develop his vestibular system. He suffered more than Jake because of his position in utero. He was transverse and tucked up under my ribs. He was barely able to move and this caused major trauma. The C-section that I had did not help matters either because he missed out on the very important experience of going through the birth canal. There was nothing I could have done differently to avoid the C-section so I am not even going there. It is what it is and now we just need to keep moving forward.
Sarah chose about 10-12 exercises to do with Cole. She had me come back and she taught me how to do them one by one. She told me to practice on myself before showing them to Cole and once I do show them to Cole, I need to watch to see if he gets agitated by them. Because if he does, I would need to stop immediately. The exercises were very simple but yet had profound effects on the nervous system and if a child is in a state of stress and the exercise is still preformed, his nervous system can become more disorganized. So there was a lot of stuff to be aware of and most of all I had to take my time and go slow. This was not part of my plan because as you all know, the countdown to Kindergarten was in full swing!
To further complicate things, Sarah had me drive to Macon, GA in June to see a woman named Janet Oliver, a reflex specialist that practices HANDLE techniques but goes even deeper. On June 7th, Cole and I took the 2 hour drive to Macon and we saw Janet. Cole was awful. He told Janet he wanted her to die and would not cooperate with her at all! I have never heard those words come out of my angels mouth, ever! I thought my trip down there was going to be a big waste. He actually seemed possessed that day but I guess it was good that Janet saw this because she was able to get a good handle (no pun intended) on what his body needed. She saw that many of his infantile reflexes had not integrated and that his body was not organized in its movement. She gave us 10 more exercises to do at home and sent us on our way. She videoed the entire session so I could go back and look at what she did. It was amazing. I was to do these exercises for 5 months and I should start to see resolution with his issues. I wish I could share these exercises with you all right here on my blog but it wouldn't help because each child is different and no two sets of exercises will ever be the same. Each child will need their own unique regimen to address the neurological issues they are dealing with.
Over this past summer, Cole and I got comfortable with our exercises. I made them a night time routine and he looked forward to them. I did notice that a couple of the ones that dealt with the vestibular system were too hard on him and actually increased his tics so I had to back off. There were many setbacks this summer. Some days I felt like we were getting somewhere and others were just a night mare. But it was important that I mentioned HANDLE because without these 2 women we would not be where we are today.
If anyone who has a child with special needs related to neurological disorders and is interested in learning more about HANDLE, please visit www.HANDLE.org or contact me. I can help you locate a practitioner in your area. In my opinion, this was the most affordable part of our healing protocol. For $400, I was able to learn these exercises for indefinite use with my son. Its like teaching a person to fish!! There are other centers out there that claim to do the same thing (i.e. Brain Balance) but charge thousands of dollars for a 12 month program and they never teach you anything. You just bring your child to their center 2x a week or more and they do the exercises for you. Maybe that is appealing to some people but I enjoyed the freedom of doing the exercises on my son at any time of the day, any day of the week. It also served as a bonding experience for us. We are so incredibly close (not that we weren't before) but there is an internal connection between that I can't describe in words. I have learned so much about my child and its taught me patience, the one thing I have been struggling with my entire life. Its really beautiful.
Sunday, October 6, 2013
How I Healed My Son's Tourette's Syndrome (Part III) Going Gluten and Corn Free
Hopefully you have read parts I and II of my series, if not please go back and read them. My first attempt at pulling foods out of my son's picky diet was a total disaster. I must have spent $5,000 on food the first week trying to figure out what would work. My initial idea was to try and replace everything he ate with a corn and gluten free alternative. Hahahahaha!! Its kind of funny now that I think about it. Gluten/corn free bread, pasta, cookies, graham crackers, cheese crackers, chicken nuggets, pizza, fish sticks etc. It made me realize how terrible my son's diet had been and how little nutrients he was getting from his food. But I did what I set out to do and found gluten/corn free alternatives to the favorite foods he eats. I must say, he was pretty accepting once I got the correct brands that worked and tasted good!
The only issue is that I did not put his twin brother on this diet because I was afraid of more rejection. So there were times that Cole wanted to know why he couldn't eat what his brother was eating. It certainly wasn't fair at all and probably the wrong strategy completely but I explained the situation to Cole with full body diagrams and demonstrations. I wanted him to understand exactly what was going on in his body (or as much as a 5 years old could comprehend). I told him he was allergic to gluten and corn and that it gave him tummy aches and that we needed to heal his tummy and make it stronger. Cole was absolutely amazing with understanding and explaining his allergies to others! He became an active participant in his healing and I am forever thankful. However, there were still days where he was not happy with what he was eating and things got tense. My panic attacks at 2 am were still in full swing.
During this time, I also found out about an amino acid called N-Acetyl Cystiene. In high doses it cures people from acetaminophen poisoning by increasing the glutathione (a powerful detoxifier) in the body. I had learned that Yale was doing a study on the use of N-Acetyl Cystiene or NAC on children ages 7-17 that were diagnosed with TS. They were giving them 2400mgs a day (a much lower dosage than whats used to treat the acetaminophen poisoning). The study was just completed this past July and from what I have heard already, there have been positive results on tics. I ran out to my health supplement store and bought a bottle of NAC and immediately started giving this to Cole in conjunction with the diet changes.
I should also mention that Dr. Taz had us start on glutamine and a heavy duty probiotic (25 billion CFU multi specie). These 2 supplements were to add in good bacteria to his gut while also helping to repair the lining of his gut.
I will be honest, we thought we saw improvement quickly but that improvement was fleeting. Cole's screaming had calmed down a little but he was still yelping and doing like 15 other motor and vocal tics thousands of times a day. Thank goodness we joined a pool this summer. It was a wonderful outlet for Cole and his brother. They both learned how to swim and when Cole was in the water, some of the tics subsided. Some days were worse than others and the lifeguards were amazing and accepting and just loved both of my boys to pieces. Plus, there was a mushroom waterfall that was pretty loud so a lot of Cole's vocal tics were drowned out by the waterfall. The pool also had a tiki bar that opened at 4pm on weekdays and 11am on weekends and let me tell you, that was a life saver! Besides losing 15lbs and getting down to 95lbs from anxiety, all those pina coladas helped keep my weight up! I'm half joking......
You may be thinking that I am not an accepting Mom. Maybe I just should have said, OK this is my son now. I love him no matter what and I shouldn't try to change him. Well, of course!!! But if you knew in your heart that there was a way to help your child, wouldn't you do anything to find that way? Hell, I heard that medical marijuana was a promising antidote for tics. I was ready to fly out to CO, pick up a tincture and drive back to Atlanta!! Thankfully, some rational minded folks (including my loving husband) talked me out of this but I am telling you, I was checking airfare.
Plus, as I had mentioned in my previous posts, this was ALL NEW to me. Two months ago, I had a pretty neuro typical kid with the occasional tic that I chalked up to some anxiety. Common stuff that would work itself out, they told me. Now I had a VERY sensory stimulated child that could not focus, sit still, be quit or stop moving. His tics were so disruptive to everyday life that I really feared for his future. Most frightening were the tics that would eventually hurt him. The neck jerks, head punching, and screaming. Sooner or later he was going to pop a vocal chord or slip a disc in his neck and then "they" would force me to medicate him. I needed a solution quickly as time was running out to Kindergarten.
That is when we took the mother of all blood tests - the NutraEval. It cost $1,000 and was not covered by insurance. Actually, I really need to mention that none of Dr. Taz's tests or visits were covered by our insurance. So between the tests and food, I was dropping some serious dough on Cole. Looking back, I would do it all over again if I had to. That is how much I believe in the holistic approach.
The only issue is that I did not put his twin brother on this diet because I was afraid of more rejection. So there were times that Cole wanted to know why he couldn't eat what his brother was eating. It certainly wasn't fair at all and probably the wrong strategy completely but I explained the situation to Cole with full body diagrams and demonstrations. I wanted him to understand exactly what was going on in his body (or as much as a 5 years old could comprehend). I told him he was allergic to gluten and corn and that it gave him tummy aches and that we needed to heal his tummy and make it stronger. Cole was absolutely amazing with understanding and explaining his allergies to others! He became an active participant in his healing and I am forever thankful. However, there were still days where he was not happy with what he was eating and things got tense. My panic attacks at 2 am were still in full swing.
During this time, I also found out about an amino acid called N-Acetyl Cystiene. In high doses it cures people from acetaminophen poisoning by increasing the glutathione (a powerful detoxifier) in the body. I had learned that Yale was doing a study on the use of N-Acetyl Cystiene or NAC on children ages 7-17 that were diagnosed with TS. They were giving them 2400mgs a day (a much lower dosage than whats used to treat the acetaminophen poisoning). The study was just completed this past July and from what I have heard already, there have been positive results on tics. I ran out to my health supplement store and bought a bottle of NAC and immediately started giving this to Cole in conjunction with the diet changes.
I should also mention that Dr. Taz had us start on glutamine and a heavy duty probiotic (25 billion CFU multi specie). These 2 supplements were to add in good bacteria to his gut while also helping to repair the lining of his gut.
I will be honest, we thought we saw improvement quickly but that improvement was fleeting. Cole's screaming had calmed down a little but he was still yelping and doing like 15 other motor and vocal tics thousands of times a day. Thank goodness we joined a pool this summer. It was a wonderful outlet for Cole and his brother. They both learned how to swim and when Cole was in the water, some of the tics subsided. Some days were worse than others and the lifeguards were amazing and accepting and just loved both of my boys to pieces. Plus, there was a mushroom waterfall that was pretty loud so a lot of Cole's vocal tics were drowned out by the waterfall. The pool also had a tiki bar that opened at 4pm on weekdays and 11am on weekends and let me tell you, that was a life saver! Besides losing 15lbs and getting down to 95lbs from anxiety, all those pina coladas helped keep my weight up! I'm half joking......
You may be thinking that I am not an accepting Mom. Maybe I just should have said, OK this is my son now. I love him no matter what and I shouldn't try to change him. Well, of course!!! But if you knew in your heart that there was a way to help your child, wouldn't you do anything to find that way? Hell, I heard that medical marijuana was a promising antidote for tics. I was ready to fly out to CO, pick up a tincture and drive back to Atlanta!! Thankfully, some rational minded folks (including my loving husband) talked me out of this but I am telling you, I was checking airfare.
Plus, as I had mentioned in my previous posts, this was ALL NEW to me. Two months ago, I had a pretty neuro typical kid with the occasional tic that I chalked up to some anxiety. Common stuff that would work itself out, they told me. Now I had a VERY sensory stimulated child that could not focus, sit still, be quit or stop moving. His tics were so disruptive to everyday life that I really feared for his future. Most frightening were the tics that would eventually hurt him. The neck jerks, head punching, and screaming. Sooner or later he was going to pop a vocal chord or slip a disc in his neck and then "they" would force me to medicate him. I needed a solution quickly as time was running out to Kindergarten.
That is when we took the mother of all blood tests - the NutraEval. It cost $1,000 and was not covered by insurance. Actually, I really need to mention that none of Dr. Taz's tests or visits were covered by our insurance. So between the tests and food, I was dropping some serious dough on Cole. Looking back, I would do it all over again if I had to. That is how much I believe in the holistic approach.
How I Healed My Son's Tourette's Syndrome (Part II)
It was May 2013 and I joined an on-line forum where people were healing their children from TS and all sorts of other neurological issues. The forum is called Latitudes www.latitudes.org and has been a source of invaluable information for me. After reading many of the threads on that site for hours on end I realized I needed to take Cole to a holistic physician. Thankfully his pediatrician was well aware of one in our area and passed her information on to me.
In early May we visited Dr. Tasneem Bhatia. She has written a pretty famous book called What Doctors Eat and has appeared on the Dr. Oz show many times. According to her she has seen what Cole was experiencing in many children and has been able to heal them. She knows there is a connection and something bigger going on in our environment and its just a matter of time before we figure it out and are able to prevent TS from happening in the first place.
The big concept that I was able to wrap my head around (and many may not agree with me) is that there really is no such thing as Tourette's Syndrome, per see. TS is just the body's way of saying, "Hey something is not right in here and I am going to let you know about it!".
Dr. Taz (as we affectionately call her) saw Cole and did some testing using Chinese medicine techniques that showed a major weakness in Cole's immune system. She suspected (but did not know for sure) that Cole had something called leaky gut.
You may have heard of leaky gut. I know I did and was actually fearing a diagnosis like this because with leaky gut comes major diet changes and since Cole was a dreadful eater, just the thought of removing his favorites gave me anxiety. Leaky gut is a term they use when someones immune system (their gut or small intestines) become permeable and toxins can cross over into the body and actually cause damage to other systems most likely the nervous system since it has such close ties to the gut. In fact, I have heard the gut referred to as the "second brain" because of massive amount of nerves that are located in and around it.
So Cole at this point maybe had leaky gut but why? Dr. Taz's first thoughts were food allergies and she had a food intolerance and sensitivity panel taken on Cole at our 2nd appointment. I want to be clear that there is a difference between a full blown food allergy and an intolerance. Cole had no signs of food allergies at all. His poops were beautiful, he never broke out in hives or had any signs of anaphylaxis, however, he did have eczema and the occasional stomach ache after eating.
The tests came back with some very surprising results. Cole has a severe intolerance to CORN, a moderate intolerance to gluten and a mild intolerance to dairy. I was floored. I knew that I could not remove all these things at once and I had to do it in stages but corn is in EVERYTHING. Corn is hidden in ingredients under such names as citric acid, ascorbic acid, maltodextrin, dextrin, baking powder, HFCS, corn syrup solids, corn startch, fructose, natural colors, vanilla extract (alcholic), and about 50 other names. To put it lightly, corn is really in every single processed food on the shelf of the average grocery store. But why did he have an intolerance to it? How did this happen? I suspect GMOs because 100% of all the corn that goes into making these "processed ingredients" is GMO. Seeds engineered from Monsanto. Now, this is just my opinion, but I am sticking with it.
Now that I was armed with some new information and was told that there was definitely a lot of things going on in Cole's body, I felt a sense of empowerment. There were changes that could be made to help him, I just needed to start implementing them and it was certainly not going to be easy.
In early May we visited Dr. Tasneem Bhatia. She has written a pretty famous book called What Doctors Eat and has appeared on the Dr. Oz show many times. According to her she has seen what Cole was experiencing in many children and has been able to heal them. She knows there is a connection and something bigger going on in our environment and its just a matter of time before we figure it out and are able to prevent TS from happening in the first place.
The big concept that I was able to wrap my head around (and many may not agree with me) is that there really is no such thing as Tourette's Syndrome, per see. TS is just the body's way of saying, "Hey something is not right in here and I am going to let you know about it!".
Dr. Taz (as we affectionately call her) saw Cole and did some testing using Chinese medicine techniques that showed a major weakness in Cole's immune system. She suspected (but did not know for sure) that Cole had something called leaky gut.
You may have heard of leaky gut. I know I did and was actually fearing a diagnosis like this because with leaky gut comes major diet changes and since Cole was a dreadful eater, just the thought of removing his favorites gave me anxiety. Leaky gut is a term they use when someones immune system (their gut or small intestines) become permeable and toxins can cross over into the body and actually cause damage to other systems most likely the nervous system since it has such close ties to the gut. In fact, I have heard the gut referred to as the "second brain" because of massive amount of nerves that are located in and around it.
So Cole at this point maybe had leaky gut but why? Dr. Taz's first thoughts were food allergies and she had a food intolerance and sensitivity panel taken on Cole at our 2nd appointment. I want to be clear that there is a difference between a full blown food allergy and an intolerance. Cole had no signs of food allergies at all. His poops were beautiful, he never broke out in hives or had any signs of anaphylaxis, however, he did have eczema and the occasional stomach ache after eating.
The tests came back with some very surprising results. Cole has a severe intolerance to CORN, a moderate intolerance to gluten and a mild intolerance to dairy. I was floored. I knew that I could not remove all these things at once and I had to do it in stages but corn is in EVERYTHING. Corn is hidden in ingredients under such names as citric acid, ascorbic acid, maltodextrin, dextrin, baking powder, HFCS, corn syrup solids, corn startch, fructose, natural colors, vanilla extract (alcholic), and about 50 other names. To put it lightly, corn is really in every single processed food on the shelf of the average grocery store. But why did he have an intolerance to it? How did this happen? I suspect GMOs because 100% of all the corn that goes into making these "processed ingredients" is GMO. Seeds engineered from Monsanto. Now, this is just my opinion, but I am sticking with it.
Now that I was armed with some new information and was told that there was definitely a lot of things going on in Cole's body, I felt a sense of empowerment. There were changes that could be made to help him, I just needed to start implementing them and it was certainly not going to be easy.
How I Healed My Son's Tourettes Syndrome
Getting up the courage to write this blog (which will come in parts) was no easy task. I have been writing sporadically about "green" eating and living but the journey I just went through makes every single previous blog post pale in comparison. Let me start from the beginning. My son Cole has always been a terrible eater. You may have read some old posts about how I struggled with him as a baby and as a toddler and child his eating habits never improved. Sadly, I must admit that I gave in to his desires just to make sure he was getting enough calories. I was constantly worried that he would lose weight or even shrink! (I know that is not a rational thought but I still had it nonetheless). So his diet eventually morphed into one high in carbs sugar and dairy. I still kept it "organic" as much as I could. We stayed away from HFCS, dyes and fast food but it wasn't enough to keep him healthy.
Around 3 years of age, Cole started making some little grunting noises when he ate. I noticed them right away and promptly asked his pediatrician what they were about. She reassured me that they were nothing and probably just anxiety related and would eventually go away. Eventually, they did but only to return months later as a different sounding grunt. They weren't very frequent so I chalked up to anxiety like the doctor mentioned and assumed they would just go away on their own.
Before he turned 5, Cole developed a "movement" that really had me concerned. It was a head jerk. He would nod his head down sharply and touch his chin to his chest. Again, it was infrequent but it was enough for me to ask the pediatrician about what I should do. Again she assured me it was a transient thing and that it would surely go away. Well, it did. Only to be replaced by knocking knees a couple of months later. Cole would be walking, stop and then knock his knees together 2x and then keep walking. It was actually kind of cute to see but I knew deep down that something was wrong.
I didn't really clue in until the spring after he was 5. It was March and Cole started making a weird noise that involved rolling his tongue. If I could write the noise down it would look like this "brrrreeeeeet". He started making this noise frequently and then almost non-stop. It was then that a friend posted on Facebook about Tourette's Syndrome (her son has it) that I finally looked it up and read the definition. Yep, that is exactly what Cole had and I was devastated.
Tourette's Syndrome is a clinical diagnosis as there is no test that can be done to confirm it. You just go to a neurologist, tell him the symptoms, he will observe and then you get the diagnosis. In order for Tourette's to be diagnosed, the child must have continuous motor ticks and at least one vocal tic present for over a year. Cole fit this description and as soon as I realized it all hell broke loose.
Its like he knew that I knew and suddenly he had 4 motor tics and 3 vocal tics going on at once and their intensity increased as well. His noises were louder, his movements were more jerky, more fierce and it actually looked like he was going to hurt himself. One of his tics was self gagging. He would stick his fingers in his mouth until he gagged. He was punching himself in the head, jerking his head forward and back, knocking knees, doing back bends, flapping his arms, repeating the TV, me and himself and finally SCREAMING on the top of his lungs.
I remember (and will never forget) Mother's Day of 2013. For the entire day, Cole screamed on the top of his lungs 60 times a minute. That is once every second - I counted. I could not interact with him, he was mostly non functional because all he could do was scream. I spiralled into a deep despair because I had no idea what was going to happen to my son.
Everything I read told me that there is no cure. TS was genetic (even though we have none of it in our family) and all the available medications work at best by reducing the tics by 30% with horrid side effects. Some of the antipsychotics reduce the tics more effectively but can leave the child with a permanent movement disorder. This was not something I would ever consider. The most common progression of this syndrome is that the tics would likely get worse as he passed through adolescence with a 60% chance of them subsiding by adulthood. Even then, the co-morbid diagnoses of ADHD and OCD (which are extremely common in kids with TS) may be even harder to deal with than the tics and they would never subside even as he got older. My son was 5 and a half and that was WAY TOO FAR in the future for me to even think about. He was supposed to be starting Kindergarten this coming August and with the way things were, I really didn't think that was going to be possible. I felt like I had no options and how could God deal me such a horrible hand of cards.
So I did what I was supposed to do and took Cole to a neurologist and a psychiatrist and since I have a very solid background in science and biology as well as a voracious appetite for research, nothing they told me surprised me. Cole had Tourette's Syndrome, ADHD, OCD and anxiety. His behavior during those appointments was horrific. He was screaming and not focusing and being a totally different child then the one I had known for the past 5 years. I could understand it and accept it more if Cole was born this way but for the majority of his life, he was a "normal" child (I hate the word normal by the way but for lack of a better word...) and now he had done a complete 180 within a matter of weeks and was this non-functioning child that could not stop making loud noises or forceful movements. At least now I had some answers but really what did that change?
The only thing those diagnoses did for me was to send me into a deeper depression. I was waking up at 2am every night with full blown panic attacks. I mean I would be on the kitchen floor, heart beating through my chest knowing for sure that I was going to die right there in my house. Thankfully, I did not but if any of you have ever had a true panic attack, it feels like the real deal. NOT FUN, I tell you, not fun at all.
The opinion of both these western medicine doctors was to put my 5 year old son on Clonidine. Its a blood pressure medication that has an off label use of reducing tics. Its their first level go-to medication along with another called Tenex but both of the specialists I saw agreed that Clonidine would be the best start for him. I did not agree.
I knew there had to be an answer, something deeper so I drew upon my holistic beliefs and went in search of the solution. It had to be out there and nothing was going to stop me until I found it......
Around 3 years of age, Cole started making some little grunting noises when he ate. I noticed them right away and promptly asked his pediatrician what they were about. She reassured me that they were nothing and probably just anxiety related and would eventually go away. Eventually, they did but only to return months later as a different sounding grunt. They weren't very frequent so I chalked up to anxiety like the doctor mentioned and assumed they would just go away on their own.
Before he turned 5, Cole developed a "movement" that really had me concerned. It was a head jerk. He would nod his head down sharply and touch his chin to his chest. Again, it was infrequent but it was enough for me to ask the pediatrician about what I should do. Again she assured me it was a transient thing and that it would surely go away. Well, it did. Only to be replaced by knocking knees a couple of months later. Cole would be walking, stop and then knock his knees together 2x and then keep walking. It was actually kind of cute to see but I knew deep down that something was wrong.
I didn't really clue in until the spring after he was 5. It was March and Cole started making a weird noise that involved rolling his tongue. If I could write the noise down it would look like this "brrrreeeeeet". He started making this noise frequently and then almost non-stop. It was then that a friend posted on Facebook about Tourette's Syndrome (her son has it) that I finally looked it up and read the definition. Yep, that is exactly what Cole had and I was devastated.
Tourette's Syndrome is a clinical diagnosis as there is no test that can be done to confirm it. You just go to a neurologist, tell him the symptoms, he will observe and then you get the diagnosis. In order for Tourette's to be diagnosed, the child must have continuous motor ticks and at least one vocal tic present for over a year. Cole fit this description and as soon as I realized it all hell broke loose.
Its like he knew that I knew and suddenly he had 4 motor tics and 3 vocal tics going on at once and their intensity increased as well. His noises were louder, his movements were more jerky, more fierce and it actually looked like he was going to hurt himself. One of his tics was self gagging. He would stick his fingers in his mouth until he gagged. He was punching himself in the head, jerking his head forward and back, knocking knees, doing back bends, flapping his arms, repeating the TV, me and himself and finally SCREAMING on the top of his lungs.
I remember (and will never forget) Mother's Day of 2013. For the entire day, Cole screamed on the top of his lungs 60 times a minute. That is once every second - I counted. I could not interact with him, he was mostly non functional because all he could do was scream. I spiralled into a deep despair because I had no idea what was going to happen to my son.
Everything I read told me that there is no cure. TS was genetic (even though we have none of it in our family) and all the available medications work at best by reducing the tics by 30% with horrid side effects. Some of the antipsychotics reduce the tics more effectively but can leave the child with a permanent movement disorder. This was not something I would ever consider. The most common progression of this syndrome is that the tics would likely get worse as he passed through adolescence with a 60% chance of them subsiding by adulthood. Even then, the co-morbid diagnoses of ADHD and OCD (which are extremely common in kids with TS) may be even harder to deal with than the tics and they would never subside even as he got older. My son was 5 and a half and that was WAY TOO FAR in the future for me to even think about. He was supposed to be starting Kindergarten this coming August and with the way things were, I really didn't think that was going to be possible. I felt like I had no options and how could God deal me such a horrible hand of cards.
So I did what I was supposed to do and took Cole to a neurologist and a psychiatrist and since I have a very solid background in science and biology as well as a voracious appetite for research, nothing they told me surprised me. Cole had Tourette's Syndrome, ADHD, OCD and anxiety. His behavior during those appointments was horrific. He was screaming and not focusing and being a totally different child then the one I had known for the past 5 years. I could understand it and accept it more if Cole was born this way but for the majority of his life, he was a "normal" child (I hate the word normal by the way but for lack of a better word...) and now he had done a complete 180 within a matter of weeks and was this non-functioning child that could not stop making loud noises or forceful movements. At least now I had some answers but really what did that change?
The only thing those diagnoses did for me was to send me into a deeper depression. I was waking up at 2am every night with full blown panic attacks. I mean I would be on the kitchen floor, heart beating through my chest knowing for sure that I was going to die right there in my house. Thankfully, I did not but if any of you have ever had a true panic attack, it feels like the real deal. NOT FUN, I tell you, not fun at all.
The opinion of both these western medicine doctors was to put my 5 year old son on Clonidine. Its a blood pressure medication that has an off label use of reducing tics. Its their first level go-to medication along with another called Tenex but both of the specialists I saw agreed that Clonidine would be the best start for him. I did not agree.
I knew there had to be an answer, something deeper so I drew upon my holistic beliefs and went in search of the solution. It had to be out there and nothing was going to stop me until I found it......
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