My little boy diagnosed with TS - help!

[lola]

My 7 year old son got diagnosed with TS 3 weeks ago, I have been reading this forum ever since and have made changes based on all of your suggestions, i keep thinking things are getting better and then he starts ticcing again. I noticed him making a nose clearing noise when he was 5, the docs reckoned it was just a habit, that then changed to him pulling his tummy in and out, that changed to fidgeting with his privates, that changed to him licking his fingers, that changed to a throat noise and on a recent family holiday to Florida his tics went crazy. he started making a loud growling noise alongside his throat noise, by the end of the 2 weeks he was stopping in his tracks to tic and his body was doubling over. the lastnight of our holiday we were at disney and he started complaining about his "habits" next thing i could see the whites of his eyes as his eyes flickered all over the place, it was terrifying. he was awful on the plane home too, the air hostesses were asking me what condition he had. we got him to the doctor straight away when we came home and got an emergency appt with a pediatrician who diagnosed him with TS. that was 3 weeks ago and we havent had any further appointments to see anybody, if it wasnt for ths forum i wouldnt know anything about it.

 

We have cut sugar and dairy from his diet, only let him watch tv at the weekends, the same for xbox. started him on magnesium, pro-biotic with multi vitamin, candida clear (somebody recommended it on this forum), he is taking a jan de vries essence too. I am trying to get him allergy tested but am failing miserably, we have a National Health Service here in the UK so its not easy to get appointments for things like that especially with a TS diagnosis. I took him for a VEGA food sensitivity test today which showed oranges, tomatos, sugar, caffeine, dust, chocolate, tatrazine. I dont know how accurate these tests are?

 

I keep reading about PANDAS and wondering if it could be this, there is no family history of TS but we all have suffered from strep. my son had tonsilitis the week before we went to florida, he has had throat and ear infections every year for the past 4 or 5 years. I feel totally out of my depth, myself and my partner feel that we have nobody to turn to who will help us investigate all the things you guys suggest. our NHS wouldnt carry out all the different blood tests for heavy metals, minerals, deficiencies etc. We are devasted that our little boy has this condition and I am terrified where it is going, how bad it will get. To the people on this forum who have their kids tics under control, do your kids not tic at all now or are they just mild? Also are there any UK members who can recommend a specialist who can help us?

 

any help or advice would be most appreciated, we are desperate to help him.

[faith]

Hello Lola, welcome to the forum,

I think you should go back to the doctor who handles his tonsilitis, was it a ear, nose, throat doctor or just your regular pediatrician? if you say he had tonsilitis, was he checked for the strep at that time? Did you discusss his tics with that doctor? kids with tics sometimes get a worse symptoms with illness or a few weeks after. with his history of ear infections I think you need to go back to the doctor and ask them to test him for strep and get blood tests done to measure his ASO and anti Dnase titiers, the doc should know what that is. if he doesn,t, find someone who does. An ENT who specializes in tonsils should have heard of PANDAS. Was your son on antibiotics for the tonsilitis? if not, ask the doctor to prescribe an antibiotic and see what happens. If he has an infection still, the antibiotic may help. If you have any other questions re PANDAS, you might want to go on the PANDAS forum on top of the tics/tourrettes one.

 

good luck,

Faith

[CSP]

Welcome,

 

My heart went out to knowing you traveled across the Atlantic while your son was having a hard time with this. God Bless you, I almost feel the panic attack myself.

 

I would have in hand the info on PANDAS and see if you can get antibiotics even if to just try for a while.

 

God Bless,

CP

[CarolynN]

Hello and welcome,

 

I am so sorry for what you and your son are going through. But I think I might be able to help shed some light on what might be going on with him. When I read your list of foods boy did it set off some red flags for me.

 

The things you listed have one thing in common. They are all considered high histamine foods. Here is a websites you can read and see what I am talking about http://sun1.awardspace.com/Conditions/Sola...tamine_diet.htm .

 

Histamine is found naturally in certain foods and also your body produces histamine in response to an allergy to a certain food or an environmental allergy. So when your body can not keep up with the amount of histamine that is being either created due to an allergenic response to something or cannot keep up with the histamine levels in foods we eat then you are going to get reactions. The next part of the picture is histamine is also happens to be a neurotransmitter of the brain. When you have too much histamine as a neurotransmitter in the brain then it throws off your other neurotransmitters such as dopamine. The dopamine transmitter is what ultimately is thought to cause the tics.

 

The key to helping out this histamine problem actually lies in the liver. I actually did a whole post about it and here it is http://www.latitudes.org/forums/index.php?showtopic=2946 . Here are some follow up posts to that posting http://www.latitudes.org/forums/index.php?...Carolyn+N\ and http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

After you read the above postings you will see that Benadryl, or what would be considered an anti-histamine, may be really helpful to your son. I know I and many others on this forum notice a reduction in tics when taking Benadryl. The only thing I would tell you is there is a very slight chance you could see more tics. I know Chemar, who is the forum leader on this website, her son had an increase in tics with Benadryl. For some people, not many, the body can actually have what is called a paradoxial response. Meaning when the anti-histamine (Benadryl) is given the person's body says "wait a minute here we need that histamine" and the body produces A LOT of histamine to respond to the anti-histamine. But this is not the normal response of most people. Most people can take it with no problem. Some anti-histamines make a person tired so you may want to try it on a weekend to see how he responds. I also think they sell some anti-histamines that are suppose to not make a person tired.

 

But more then likely you will not want to keep him on an anti-histamine for too long. So here are the things I have done for my son.

One of the things that works really well for my son is the vitamin B6. My son (he is 60 pounds and 9 years old) As I go through all these things you will want to take your son's weight into consideration for doseages. But my son takes 50 mgs a day of B6 and when his tics really get going we up it to 100 mg's for up to 5 days. I have given him as much as 150 mg's for a few days too. Also increasing the vitamin C levels, my son takes about 750 mg's a day, to help his body. This will help his body process out some of that extra histamine and other neurotransmitters that have built up.

 

Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). This one I would highly suggest you look into. It really helps aid the liver in getting out the extra histamine. I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 750 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But agaub tge primary reason to take it is to lower histamine levels. There are certain people who should not take it and I believe it is people who have kidney issues or who are diabetic.

 

I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.

 

Also I give my son something called glycine. Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row (my doctor said I could do this for up to eight days). I use Carlson brand glycine. The glycine really seems to help.

 

The magnesium taurate has been very, very helpful too. The magnesium helps calm the nervous system. It is essential for a person with tics to get magnesium going in them. There are different forms of magnesium. You want to buy one that ends in "ate". For example magneiusm taurate, magnesium citrate, magnesium glycinate. The ones that end in "ate" absorb much better in the body. The other ones do not absorb very well at all.

 

Another thing you could easily do is do epsom salts baths. That will also help get out the extra histamine. You would put him in a tub of warm water with 2 cups of epsom salts for at least 20 minutes.

 

Another easy thing to do is have him drink a nice lot of water. That will help flush out the extra neurotransmitters.

 

The last thing I wanted to mention is I can pretty much guarantee if your son is having problems, with the foods you mentioned, he also will have trouble processing MSG in his body. People who are high histamine tend to also have issues with MSG. Unfortunately MSG is in many, many products and is hidden under various names. Here is the posting I did about this several years ago http://www.latitudes.org/forums/index.php?...d&pid=17225 . Here is a list of foods I put together that are MSG free that I have found http://www.latitudes.org/forums/index.php?showtopic=2976 .

 

The good news for you is I really think you have REALLY big clues with his food sensitivity list. It is classic high histamine foods.

 

I know I gave you a lot of information. If I were you I would start with giving him 50 mg's of B6 a day. I gave this amount to my son when he was 5 years old and around 49 pounds. I also would consider getting him some NAC that I mentioned. Keep up the magnesium and also give him some vitamin C around 750 mg's. I would break out his vitamins morning and night so you are not giving it to him all at once. Also I would study which foods are high in histamine, and at least for the time being, I would AVOID them. When you see his body starting to improve you can introduce them back into his diet. But I would ALWAYS avoid the MSG foods. Also we have found my son to be sensitive to high fructose corn syrup and other food dyes. So avoiding those foods with those items in them would be important. The food list I gave you earlier does not have the food dyes or high fructose corn syrup in them either.

 

The good news is my son is doing GREAT! I use to be so scared of his tics and now I realize exactly what is going on and we now know what to do for him. I am confident if you do enough research you will get at a comfortable spot too.

 

One last thing that might be helpful is I did food journals to track what my son ate when I was trying to figure out what was going on. I would then track in those food journals how his tics were doing. After some time I could start seeing the patterns of what was going on. I would, for example, do a scale of 1 to 10, 10 being the worse, and mark in the food journals how his tics were doing those days with what he ate. With my son I would notice an increase in tics within about 1 hour after he would take something in that was bothering him. For some I know it is a longer response time then that.

 

I hope this helps and I will be praying for you to find the right direction. Let me know if you have any questions.

 

Carolyn

[EAMom]

I keep reading about PANDAS and wondering if it could be this, there is no family history of TS but we all have suffered from strep. my son had tonsilitis the week before we went to florida, he has had throat and ear infections every year for the past 4 or 5 years. I feel totally out of my depth, myself and my partner feel that we have nobody to turn to who will help us investigate all the things you guys suggest. our NHS wouldnt carry out all the different blood tests for heavy metals, minerals, deficiencies etc. We are devasted that our little boy has this condition and I am terrified where it is going, how bad it will get. To the people on this forum who have their kids tics under control, do your kids not tic at all now or are they just mild? Also are there any UK members who can recommend a specialist who can help us?

 

any help or advice would be most appreciated, we are desperate to help him.

Hi Lola,

 

It definitely could be PANDAS! If you re-post (just copy and paste, what you wrote is fine) on the PANDAS forum lots of parents will help you out (most of the PANDAS parents don't check the Tourette forum all that often).

 

RE PANDAS (briefly while you are waiting...)

 

To start, I would rec. getting throat cultures (do the 72 hour culture if the rapid is neg) on everyone in the household. You want to see if your son is currently positive for strep and also make sure there aren't any carriers in the family. A throat culture isn't 100% (esp. since strep can hide out in other areas, like the sinuses), but is a good/easy place to start. Some docs (at least in the US) are leary/not well-informed re PANDAS, so you might need to tell a little white lie, and say "strep has been going around" and that your kid has been complaining of a sore throat to get them to run the tests.

 

Another easy/safe thing to try...many PANDAS parents find some symptoms (mood, tics, sleep) improve somewhat with Advil (motrin, ibuprofen)....so giving him a few doses would be an interesting experiment.

[lola]

Hello Lola, welcome to the forum,

I think you should go back to the doctor who handles his tonsilitis, was it a ear, nose, throat doctor or just your regular pediatrician? if you say he had tonsilitis, was he checked for the strep at that time? Did you discusss his tics with that doctor? kids with tics sometimes get a worse symptoms with illness or a few weeks after. with his history of ear infections I think you need to go back to the doctor and ask them to test him for strep and get blood tests done to measure his ASO and anti Dnase titiers, the doc should know what that is. if he doesn,t, find someone who does. An ENT who specializes in tonsils should have heard of PANDAS. Was your son on antibiotics for the tonsilitis? if not, ask the doctor to prescribe an antibiotic and see what happens. If he has an infection still, the antibiotic may help. If you have any other questions re PANDAS, you might want to go on the PANDAS forum on top of the tics/tourrettes one.

 

good luck,

Faith

Hi Faith thank you for responding. The doctor who he sees is his GP (General Practicioner), the way our NHS service works is you see your GP and if the GP feels the patient needs to see a specialist then a referral would be made to the relevant specialist, this can take months. He has never seen an ENT consultant yet. when he has tonsilitis or ear infections the doctors dont usally take a throat swab they usually know because his tonsilts are all white spots and he runs a high temperature. with the ear infections they just look inside his ear. usually he gets prescribed penicillin and the infections clear up over the following week. when we returned from florida the doctor took a throat swab to test for strep and it came back clear, he had just finished a course of penicillin when we were on holiday so that probably cleared any infection. I have an appointment on Thursday to see his GP so I will ask about ASO and anti Dnase titiers, i dont have a clue what that means but maybe his doctor will. Our doctor wouldnt prescribe anti biotics unless there was an infection present but I'll certainly ask her again. Thanks again for your help.

 

Lola x

[lola]

Welcome,

 

My heart went out to knowing you traveled across the Atlantic while your son was having a hard time with this. God Bless you, I almost feel the panic attack myself.

 

I would have in hand the info on PANDAS and see if you can get antibiotics even if to just try for a while.

 

God Bless,

CP

Thank you,

 

It was the longest 9 hours of my life, the fact that we didnt know what was wrong with him made it worse. I suppose now that we have a diagnosis we at least know what we are dealing with. Although I dont think I have quite accepted that he has TS, I cant accept it until I have ruled everything else out. I will speak to his GP this week and see if she would prescribe some anti-biotic, although I doubt it as he isnt showing any symptoms of throat infections etc.

 

Thanks again, Lola x

[lola]

Hello and welcome,

 

I am so sorry for what you and your son are going through. But I think I might be able to help shed some light on what might be going on with him. When I read your list of foods boy did it set off some red flags for me.

 

The things you listed have one thing in common. They are all considered high histamine foods. Here is a websites you can read and see what I am talking about http://sun1.awardspace.com/Conditions/Sola...tamine_diet.htm .

 

 

I hope this helps and I will be praying for you to find the right direction. Let me know if you have any questions.

 

Carolyn

 

Hi Carolyn

 

Thank you so much for all the information you have provided, I will certainly start him on the B6 and will ask his GP about the NAC. I was worred that maybe the VEGA test wasnt very accurate but from what you are saying these foods are all high in histamine, that would certainly make sense. Although he doesnt neccessarily eat an abundance of the foods he tested sensitive too, she also said to avoid anything red in colour, he eats a lot of raspberries and strawberries so I will certainly cut those out and see if i notice a difference. I have been keeping a diary of his food and tics for 3 weeks since he was diagnosed and so far I cant see any real patterns. some days he wakes up and his tics are worse than the day before and we dont know if it is something he ate the day before or if its because we let him play his xbox for an hour the day before, I feel as if we are looking for a needle in a haystack. maybe over time we will see more of a pattern emerging. the only thing I can see is that his tics have reduced since our holiday, when I ask him if anything makes his "habits" (as he calls them) worse, the only thing he says is "the sun". I dont know if this could be the case or if he is just associating his tics with the florida holiday. bearing in mind we live in scotland where we dont get a lot of sunshine.

 

I will go and read all of your links now.

 

Thanks again for spending so much time responding to my post.

 

Lola x

[lola]

IHi Lola,

 

It definitely could be PANDAS! If you re-post (just copy and paste, what you wrote is fine) on the PANDAS forum lots of parents will help you out (most of the PANDAS parents don't check the Tourette forum all that often).

 

RE PANDAS (briefly while you are waiting...)

 

To start, I would rec. getting throat cultures (do the 72 hour culture if the rapid is neg) on everyone in the household. You want to see if your son is currently positive for strep and also make sure there aren't any carriers in the family. A throat culture isn't 100% (esp. since strep can hide out in other areas, like the sinuses), but is a good/easy place to start. Some docs (at least in the US) are leary/not well-informed re PANDAS, so you might need to tell a little white lie, and say "strep has been going around" and that your kid has been complaining of a sore throat to get them to run the tests.

 

Another easy/safe thing to try...many PANDAS parents find some symptoms (mood, tics, sleep) improve somewhat with Advil (motrin, ibuprofen)....so giving him a few doses would be an interesting experiment.

Hi EAMom

 

I think the doctors here know even less about PANDAS than in the US, the only place that seems to test for it is the US. We found a place in the UK but is about a 7 hour drive from where we live in Scotland, that didnt matter we would still have done it. I found out yesterday that the stopped testing for it because the company they used in the US stopped carrying out the test, so it looks like the US is the only place testing for it.

 

I will certainly ask the doc about testing all of us for strep, im not sure what the 72 hour culture is but Im sure our GP will.

 

Thanks for all your help.

 

Lola x

[faith]

I also believe that certain foods (in excess) may contribute to tics that kids have no matter what the origin. certain foods are inflammatory and that may be a factor. so I would definitely still try to do an avoidance of those foods on the food sensitivity testing and see if it helps. don't know how much of it he normally consumes, but the ones high in salicylates like orange, might be a good idea to eliminate.

 

Recently I have been allowing more corn products, which normally try to avoid, but my son is underweight, so I struggle between letting him have foods and foods I know will aggravate his system if he gets too much. When I allow too much corn/corn syrup products, I definitely see a vamp up in his neck tics. this is happening now, as I've allowed breakfast ceareals like Life cereal and Raisin Bran Crunch, he's been having this for a coule weeks now and I'm definitely seeing his neck tics increase. I had the same problem in beginning of summer, and when we backed down, so did the neck tics, so I've experimented several times on this. I'm going to post more on another thread.

 

Faith

[ilovedogs]

I also believe that certain foods (in excess) may contribute to tics that kids have no matter what the origin. certain foods are inflammatory and that may be a factor. so I would definitely still try to do an avoidance of those foods on the food sensitivity testing and see if it helps. don't know how much of it he normally consumes, but the ones high in salicylates like orange, might be a good idea to eliminate.

 

Recently I have been allowing more corn products, which normally try to avoid, but my son is underweight, so I struggle between letting him have foods and foods I know will aggravate his system if he gets too much. When I allow too much corn/corn syrup products, I definitely see a vamp up in his neck tics. this is happening now, as I've allowed breakfast ceareals like Life cereal and Raisin Bran Crunch, he's been having this for a coule weeks now and I'm definitely seeing his neck tics increase. I had the same problem in beginning of summer, and when we backed down, so did the neck tics, so I've experimented several times on this. I'm going to post more on another thread.

 

Faith

Faith, I'm sorry you're seeing an increase again. Sounds like you're onto something with the corn.

 

To the OP: I have been where you are, just 2 years ago. We ruled out PANDAs, then I start thinking about it again, then I rule it out again. Sigh, it's been a tough 2 years. You've gotten great information from Carolyn and the others and I just want to add 1 thing. When you start trying supplements, try 1 at a time. Let his body get used to it, observe the results, and keep it in your journal. So, starting with B6, magnesium, or mag taurate are all good places to start. My son's biggest problem is anxiety and stress. So, the tics increase for him in stressful(both good and bad) situations. So, he'll tic more near the end of the day as he gets tired, or when he's getting in trouble for something, or when he has a tennis tournament that day, etc. You may want to keep these things noted in your journal, as well.

 

Good luck! Just know that you're not alone. This place has given me hope and I've made some great friends along the way. I've even been lucky enough to meet with Carolyn and CSP in real life!

 

Bonnie

[lola]

I also believe that certain foods (in excess) may contribute to tics that kids have no matter what the origin. certain foods are inflammatory and that may be a factor. so I would definitely still try to do an avoidance of those foods on the food sensitivity testing and see if it helps. don't know how much of it he normally consumes, but the ones high in salicylates like orange, might be a good idea to eliminate.

 

Recently I have been allowing more corn products, which normally try to avoid, but my son is underweight, so I struggle between letting him have foods and foods I know will aggravate his system if he gets too much. When I allow too much corn/corn syrup products, I definitely see a vamp up in his neck tics. this is happening now, as I've allowed breakfast ceareals like Life cereal and Raisin Bran Crunch, he's been having this for a coule weeks now and I'm definitely seeing his neck tics increase. I had the same problem in beginning of summer, and when we backed down, so did the neck tics, so I've experimented several times on this. I'm going to post more on another thread.

 

Faith

Faith, I'm sorry you're seeing an increase again. Sounds like you're onto something with the corn.

 

To the OP: I have been where you are, just 2 years ago. We ruled out PANDAs, then I start thinking about it again, then I rule it out again. Sigh, it's been a tough 2 years. You've gotten great information from Carolyn and the others and I just want to add 1 thing. When you start trying supplements, try 1 at a time. Let his body get used to it, observe the results, and keep it in your journal. So, starting with B6, magnesium, or mag taurate are all good places to start. My son's biggest problem is anxiety and stress. So, the tics increase for him in stressful(both good and bad) situations. So, he'll tic more near the end of the day as he gets tired, or when he's getting in trouble for something, or when he has a tennis tournament that day, etc. You may want to keep these things noted in your journal, as well.

 

Good luck! Just know that you're not alone. This place has given me hope and I've made some great friends along the way. I've even been lucky enough to meet with Carolyn and CSP in real life!

 

Bonnie

 

Hi Bonnie, i think i feel the same way you did, i cant quite accept he has tourettes until the PANDAS route has been ruled out but its very difficult here in the UK to find people who even know wht it is. This forum is where I have been getting all my information from. It is so tempting to give him loads of supplements and have him on a vegetable and water diet,lol! i just want the tics to go away overnight. I think my sons tics sound similar to your sons, when he is trying to tell me something exciting he starts with the vocal tic, its like he cant get the words out quick enough. everytime he talks about our recent holiday to florida he starts to tic, he is so excited talking about the rides. i thought that only bad stress would make him tic. the strange thing is if he is upset or crying his tics stop, he was being naughty the other night and the whole time I was angry at him he didnt tic at all, then when he was crying afterwards he didnt tic. i find this strange.

 

My partner keeps reminding me of all the success stories on this forum, this gives us hope. Compared to 4 weeks ago our son has improved so much its unbelievable, when we came back our holiday he couldnt string a sentence together without ticcing constantly, now his tics have calmed right down. I had a meeting with the school to tell them about his diagnosis and the teacher said she hasn't noticed a thing. she said nothing has changed, she hasnt heard him tic and his school work is just the same. Again, I found this very strange, either they are not paying attention to him or he only does it when he leaves school. trying to do homework with him at night is hard work!!

 

thanks again.

 

Lola x