New here and I feel like so frustrated!

[ccc]

I have been reading for awhile but I have not posted. My ds has had tics for about 2 years but got really bad about 6 months ago. Before they were very few and would last about a week or two and go away for a few months. Now they are all the time. We first started our route with a neruo. He put him on chloindine and said if that did not work he would start him on orap. Thanks to all of your post I knew to run the other way from orap. We did start the chloindine. We saw no improvement and decided to go the natural way. He has been allergey tested, hair test, stool test and urine. He has major food allergies. Main ones are wheat, dairy, casein, eggs, soy and peanuts. Also had major diffenciences in amino acids. He had some bacteria levels that were high. They said he has leaky gut and feel like because of the amino acids that he is low in, they feel this is a big part of the puzzle with the tics. So all of this was encouraging except right now his tics are so bad and almost non stop I feel like I am losing my mind. I had a break down today. He is doing a sniff-snort-grunt thing that is very loud and does not stop. I have been reading some of your post about your success with topamax and part of me wants to run out and get a prescription. I know that is just putting a baid aide on the problem but I feel so desprate for a break. Please any advice or support would be very appreicated!!!

[tryinmybest]

Hi,

 

I am sorry for all of your worries. I can't offer any advice since I am new at this also but I can understand your frustration. My son is also doing a cough snort type tic that is non stop and loud. Sometimes I just want to take him with me and run away from it all. I just don't know what to do. I have learned to be suspicious of medications and wonder if I am doing the right thing since it is so constant. Does your son seem to be bothered by this? I can't believe my son has never complained about it. Allergies are high right now in Kentucky and I think that can be a trigger. I just wish I could help him. Did your regular doc do the hair, urine , allergy tests? My son is going to be 10 next week. How old is your son?

[tryinmybest]

Hi,

 

I am sorry for all of your worries. I can't offer any advice since I am new at this also but I can understand your frustration. My son is also doing a cough snort type tic that is non stop and loud. Sometimes I just want to take him with me and run away from it all. I just don't know what to do. I have learned to be suspicious of medications and wonder if I am doing the right thing since it is so constant. Does your son seem to be bothered by this? I can't believe my son has never complained about it. Allergies are high right now in Kentucky and I think that can be a trigger. I just wish I could help him. Did your regular doc do the hair, urine , allergy tests? My son is going to be 10 next week. How old is your son?

[ccc]

Hi,

 

I am sorry for all of your worries. I can't offer any advice since I am new at this also but I can understand your frustration. My son is also doing a cough snort type tic that is non stop and loud. Sometimes I just want to take him with me and run away from it all. I just don't know what to do. I have learned to be suspicious of medications and wonder if I am doing the right thing since it is so constant. Does your son seem to be bothered by this? I can't believe my son has never complained about it. Allergies are high right now in Kentucky and I think that can be a trigger. I just wish I could help him. Did your regular doc do the hair, urine , allergy tests? My son is going to be 10 next week. How old is your son?

 

My son is 9 and they do bother him. I guess that is one reason that I am so sad. The test are being done through group of doctors that work toghter. On is an MD and the other in an ND.

It is great to have them work together as a team.

[CarolynN]

Hello,

 

After reading your post I was wondering if you have tried giving him Benedrayl or some other anti-histamine. Some on this forum have seen preety dramatic results in using the anti-histamine.

 

In a quick recap, what happens is when your body is struck with an allergen then your body produces histamine. Histamine also happens to be a neurotransmitter that affects other neurotransmitters. Neurotransmitters are part of what helps the brain function. Someone who is predisposed to tics when there neurotransmitters get out of order will then start to tic.

 

One thing you could easily do is try taking some allergy medicine, like benadryl, to see if the tics calm down. Like I stated many people on this forum have noticed a reduction in tics by taking an allergy medicine of some sort. Now with that said, I know some people actually get an increase in tics after taking allergy medicine. I know I remember reading Chemar's son had a really bad reaction to the allergy medicine. My naturopathic doctor told me, it is uncommon but certainly can happen, that in some people there body will send a rush of histamine out to counteract the allergy medicine. But most people do not so it is certainly worth the try and it will give you a bigger understanding of what is going on if you see a big reduction in tics after taking it.

 

I know some allergy medicine, like Bendadry, can make you sleepy. So you might want to talk to a pharmacist about your choices.

 

I really think your son would GREATLY benefit from being on some really good digestive enzymes. There is a great book by a woman named Karen DeFelice. The book is called "Enzymes for Autism and Other Neurological Disorders". I think this could greatly help you understand what to do for him. Digestive enzymes would help with the allergy reaction to the foods and also heal the leaky gut. The key is getting on the right digestive enzyme. I have been using Dr. Houston's enzymes. They are real good quality. Here is their website http://www.houston-enzymes.com/ .

 

I had put together my theory as to what was ultimately going on with him and why I thought Daniel was reacting with these food chemicals a while back. Here is the link http://www.latitudes.org/forums/index.php?...mp;hl=sulfation and also some follow up links to this post http://www.latitudes.org/forums/index.php?...Carolyn+N\ and also http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

Hang in there and I will be praying for you. There are answers and it looks like you are on the right track in getting it sorted out.

 

God Bless,

 

Carolyn

[Caryn]

We use benadryl. I just want to add that benadryl dye free capsules is probably the safest bet as it avoids artificial colors and they are pretty much a universal trigger.

[ccc]

Thanks for you respone. He takes a prescription for his allergies but last night I had to give him benadryl because he could not sleep. His tics were so bad he thought he was going to throw up from them. The benadryl helped him to finally fall asleep. Hoping today is better.

[san70]

Carolyn,

 

I read your post on MSG and the hidden foods. Thanks. That's quite comprehensive and extremely helpful. I never knew how many foods have MSG. Did you find that as a result of ingesting MSG that your son ticced the same or do the type of tics vary? Has anyone noticed this?

 

San

[mommyof2]

Welcome...and sorry to hear of your frustration, been there and hated it. My son is 11, had tics when he was little but we thought they were just habits... The past two years were our worse. He had a hard 5th grade this year, with a new, bigger school. His elementary school he was with the same kids for 5 years and they were all so nice to him. This year he came home so many days crying because of the teasing we knew we had to do something. We tried vitamins and herbs and at one point we thought we had it and then it started again. We are one with success with topamax. He takes 50 mg and is doing wonderfully. Don't see any major side effects. I still see little things here and there but nothing like it was. He would constantly be shaking his head, making arm motions, sounds, just so jerky. Now he is so much stiller. I never expected to put him on medicine and really hope someday soon to be able to stop, but I am happy I have done it, he is so happy to not have the tics and he gets so worried if they will come back again someday.

 

Good luck and know you are not alone!!!!

Mary

[faith]

Did you find that as a result of ingesting MSG that your son ticced the same or do the type of tics vary? Has anyone noticed this

 

good question. I'd be interested to know that too. does msg make the same type of tic? or various?

 

 

 

thanks

Faith

[CarolynN]

Hello again,

 

With my son MSG brings out different tics and also high anxiety levels. There has never been one particular tic that occurs because of the MSG. But MSG is certainly his biggest tic trigger!

 

Carolyn

[ccc]

Went to the doctor today for some advice. We asked him about topmax and he was not against trying it. He was affraid that because of all the gut issues and amino acids diffenciences that we might not got the full benefits of the drug. Simply because his body would not absorb it and processe it if his gut was not healed. He did put him on some new supplements that acted the same way benadryl does. We are going off of this other supplements for about a week. If feels like the reason they might be so bad right now is because of a die off. We are still waiting for the hair and stool test. He also want to try the allergy neutraliation on hime to see if specific items make him tic. He just said this is not a quick fix but when he is having such bad days it is so hard not to try a drug like topamx. Last night I had to put a bandana around hid eyes to help him sleep because he keep having to blink.

 

One other thing we did was accupuncture. That was cool it did seem like they my have subcided some.

[Chemar]

Hi

 

acupuncture always brings remarkable tic relief for my son

 

do be careful with medications when there are GIT etc things going on. we learned from bitter experience that sometimes kids can show the extremes of the side effects from the drugs, especially when they have other issues/illness.

[EAMom]

Hi ccc,

it wouldn't hurt to do a throat culture to check for strep. Do the 72hour if the rapid is negative. Some kids (carriers) can be culture positive strep for months or years. Many PANDAS kids have tics (or behavior changes) as their only symptom (no sore throat/no fever).

 

There are lots of folks on the PANDAS forum that will help you out if you have more questions (or if the culture is positive).

 

You might also consider culturing family members (to check for carriers)...my PANDAS dd will react when a family member has strep as well.