New Jersey Mom Needs Encouragement

[Dara]

Hi Everyone,

 

It's been awhile since I've written. I don't know if any of you remember me or my son Karl Henry who just turned 5. We also have a 3 1/2 year old son, Graham. I first found this website last November. I first must compliment many of you on your dedication to reading and posting on this website. I'm so amazed that some of you write several times a day. Since finding this website, my intentions were to at least read the forum everyday. Unfortunately, during these last 3 1/2 months I've been so emotionally and physically exhausted that I barely have had the strength to read the posts. Anyway, I'm sure many of you can relate to what we've gone through/or are going through.

 

Alison, I really have enjoyed reading the daily accounts of what you've been going through with your son. I find them extremely uplifting. And I'm so glad to hear that he is doing better. You and I joined onto this forum right around the same time. I also noticed, that in one of your posts you remembered reading a post from me about my Thanksgiving day ######. What a day that was. My sons tics were so bad that day, I felt so miserable and helpless. I basically sat at the other end of the table, watched every tic my son made and and drank my way through dinner.

 

I must first say that things have gotten better since that time. I won't recap Karl's entire history since it's all documented in earleir posts. But just to give you a little background, he woke up one day last April with full facial and vocal tics. Prior to that he just had eye blinking that lasted five months. As of April, we ran to every doctor we could possibly think of and with the help of a back issue of Latitudes, found an environmental physcian here in New Jersey that was willing to help us. Since our first meeting in November, Dr. Ali determined that Karl had food sensitivites (as a result of a IgE blood test) to sugar, eggs, milk and oranges. Was allergic to white oak trees and sycamore trees in addition to fungus, yeast and mold inhalents. Our son has had a first morning urine test, which showed a yeast problem in the gut. We recently completed a 24 hour heavy metal test which we will have the results back this coming Thursday. Dr. Ali put Karl on an all organic diet, no colors or preservatives in addition to no sugar, eggs, milk or oranges. He prescribed sub-lingual drops for the inhalent allergies and also precribed a supplement program.

 

It took us the entire month of November and December to get on the diet and supplement program. As of January, we noticed a BIG improvement in his tics. No abdominal tic, no head jerking side to side or back to front, minimized vocal tics such as coughing, clearing his throat, and grunting (this grunting one is a hard one to describe, it's not really grunting but almost like a noise that you would make of you were trying to clear mucus from the back of your throat).

 

We we're of course so excited to see real results. During these last couple of weeks we've noticed the grunting coming back a bit in addition to some eye rolling once in a while and we also noticed a new tic. Karl plays with his lips and saliva and makes a sound with it - it's very hard to explain. It started on January 19th while watching TV and he's still doing it today, mostly when riding in the car or watching TV. We've limited TV to about 1 hour a day, usually in the morning. I've been very frustrated lately because I believe we're doing everything that we should be doing with the diet, supplements, limited tv etc and then a new tic appears. I thought it seemed that Karl had more saliva in his mouth lately and that's what triggered the new tic, but I'm not sure. We were on vacation in Florida last week staying with my mother-in-law. I stuck to the diet about 80% but his tics we're not great about half the time. We thought they definatley increased after swimming in the pool.

 

Karl's supplement schedule includes taking vit C, multi vit, cal/mag, taurine, acidophilus, aloe water, Q-10 melt, nystatin, glutathione and children's DHA. I think we're definately on the right track but are possibly missing something. Encouraging words would be greatly appreciated.

 

I sometimes wish that we all lived close together so that we could see each other face to face and talk about our situations.

 

Thanks as always for listening.

 

Dara

[Chemar]

Hello Dara and welcome back

 

I am just popping in while cooking dinner so cant post long, but I did want to draw your attention to the fact that chlorinated pools can be tic triggers. Chlorine is such a major trigger for my son that he gave up swimming in chlorinated pools and only swims in the ocean or in brominated water now.

 

we even have filters for our showers etc to prevent any chlorinated water

 

other than that, it sure sounds like you are doing all the right things.

 

have you done a pyroluria test yet? so many people have been helped by the simple supplementation that is needed when tics are a result of pyroluria.

 

ok gotta run

 

Just do take care of yourself too! It is VERY stressful to deal with all this, and you need to keep up your own health and strength

 

[Dara]

Hi Cheri,

 

Thanks for writing back. I do agree with you about the chlorine. This is something I'll have to keep in mind over the next couple of months. Can you tell me what pyroluria is? I keep seeing this come up over and over again??

 

Dara

[Chemar]

Hi Dara

 

best way to tell you about pyroluria is to let you hear it from the "expert" on it....FJ* on BrainTalk

 

here is her thread there explaining much about it

 

http://brain.hastypastry.net/forums/showth...ead.php?t=10944

 

[ad_ccl]

Hi there Dara,

 

I am so glad you posted an update - sounds like you have come a long way - I do remember your post about the heartbreak of seeing your son in such a bad state and I completely related to it. It is horrific.

Was your son diagnosed with PANDAS? It sounds like he had a similar experience as my son in terms of just waking up one morning with tons of tics - like your son my son also had some minor tics leading up to the explosion. We now think those were related to the food allergies. I just wonder if your son is maybe coming down with an illness which could explain the increase in tics. Has he complained of a sore throat? Not that they always do. We also noticed initially that my son would tic more when those around him had any illness, and he would show no other symptoms. It is only in the last few weeks that he has actually started showing real signs of illness which seems like a step in the right direction - his immune system is responding normally rather than attacking his basal ganglia with any illness.

 

The tv and driving in the car were ALWAYS triggers for my son. They were the only obvious one's to us - later we have discovered the florescent lights are also a problem.

 

Sounds like you are doing everything right. I know how hard it is changing diet etc. We are working on that here too. The chlorine could definitely explain some of the increase. It is so hard when you have taken so many steps forward to feel like you are falling backwards again. I think the reality of this is that no one just goes forward without a few set backs and the key is to try and learn from the set backs. It is a puzzle - but I believe we will all figure it out and our children will benefit more than we will ever know.

 

Good Luck,

[Dara]

Cheri,

 

Thanks for that link to 'braintalk'. I read the information about 'pyroluria'. Still having trouble pronouncing it. I went ahead and ordered my test kit. I spoke to the woman at the lab and asked her about being on vitamins and supplements while taking the test. She didn't have much of an answer. I need to do a little more reading about it I guess. I'd hate to take Karl off his supplements. I'm afraid of what would happen.

 

Today has been a really bad day for me. Karl's tics seem to have worsen. He keeps making awful sound with his lips and saliva. Sucking the lips in and then puckering them. He's also had some head jerking along with minor other facial tics. I feel like pulling my hair out. I just had a playdate come over to the house for a couple of hours to keep my boys occupied so that I can get on line and research.

 

Karl and his brother Graham both have had snotty noses since being in Florida last week. Karl especially looks under the weather and is very grumpy. The grumpiness could be a result of his tics.

 

Can you tell me about the spit test and what it tests???

 

Thanks a bunch.

 

Dara

[ad_ccl]

Sounds like your boys are both fighting a cold which could explain the increase in tics in Karl Henry - or at least be a piece of the puzzle. The emotional liability is big with PANDAS - as is the grumpiness. We also find other personality changes can occur, mainly lack of empathy. At school the teacher noted last week our son was not concentrating as well and not getting as much work done, and was far more distracted than he has been over the last few weeks. All signs that he was coming down with something.

[Dara]

Hi Alison,

 

It's so good to hear from you to. My son was tested for strep last May and it was negative. I have the results of his bloodwork in front of me. Does the strep test show up as 'ASO AB'? under the test name category????? I'm having trouble finding it on my paperwork. As far as being under the weather, Karl and my younger son Graham both have runny noses and don't look great. Karl has especially been grumpy these last two days. I thought it might be because of his increased tics and the cold.

 

As far as Karl's diet is concerned, he's been such a champ. Even before this started, he always ate tons of fruits and vegetables. Not that he's a big eater, but a good eater. He's 43 inches tall and 42 pounds. Always has been in the 50% percentile. We've always liked good food. When Dr. Ali put Karl on an all organic, no sugar, no dairy, no eggs and no oranges, the hardest one was the sugar. Can you imagine a 5 year old with a cane sugar intolerance???? It's so tough. He didn't test positive for wheat, but I try to keep him away from it if possible. Actually I think I'll been a little relaxed on this one lately so I think I'll try to keep all wheat/gluten away from him. I also keep him away from soy products and of course food coloring and preservatives. Did you ever join the feingold group? I might have the names mixed up. It's a group that will send you a listing of brand name foods to buy. It might be the 'feed up with food preservaties' people/web site. I really need to do this.

 

I was speaking to Cheri earlier who told me about the pyroluria test. Did you do this for your son??? She sent me a link and I was able to call the lab (I believe it was in Kansas) and order the test. I'm really anxious to do this one.

 

So far since November of 2004 we've changed his diet, started supplement and sublingual drops, cut down on TV, put air purifiers in our home, started using all natural cleaning products and covered both boys mattresses with 100% cotton allergy free covers. He's been tested for food sensitivities, inhalent allergies, had a first morning urine test and a 24 hour toxic metal urine test (we get the results back this Thursday).

 

Karl's tics have definately gotten better since being on Dr. Ali's program but they're still waxing and waning and haven't been totally eliminated. Last September he started a horrific abdominal tic that affected his walking. Many times I felt so sorry for him that I would carry him or just not bring him to the stores.

 

I'm not an overly religious person but I now pray every day that I'll find a solution to Karl's condition. I'm or should I say we, my husband is extremely supportive but works so much and is goine 13 hours a day. Unfortunately, the responsibility of fixing Karl is mine. Sometimes I feel like it's almost too much for me to bear. As you probably know, somedays are great and then when the tics come back it's your worst nightmare. I see a light at the end of the tunnel. My son is so beautiful and such a sweet boy, I would and will go to the end of the earth to figure this whole thing out.

 

Just one note on how Karl was before his tics began explosively last April. As an infant his cried from three weeks on, was grumpy, moody, angry, didn't get along with other children well, was shy and always at odds with me. Difficult is the word I'm looking for. I look back now and see that he had allergies. My husband Karl also had terrible allergies as a child and was finally diagnosed as having a food sensitivity to corn syrup at age 4. But who knows, that was 37 years ago and I can't say much for how accurate the tests were back then. We also have a history of ADD/ADHD, panic, depression and anxiety in our family and alcoholism. No history of tic disorders. Some family, HUH.....ha, ha.

 

Write soon.

 

Dara

[ad_ccl]

Hi Dara,

 

The test for strep is the ASO titer and there is an AntiDnase test as well. I have had both done, most recently we did the ASO one again - there are some posts from a few weeks back (probably mid Jan) with info on these tests. If the same levels are tested in each lab - which I do not know - the normal range for ASO is under 200 I think - it tests the antibody levels - so will show if the body has been fighting a strep infection over the last few weeks - the levels can stay high for up to 6 months after an infection. If you want more info Ronna had posted a reply to one of my questions about ASO levels that was on a different thread than my new here one. I think it was titled ASO titer levels - or something like that.

 

I did not join Feingold and know very little about it. It sounds like some have had great success following his diet.

 

I did not do the pyroloria test. We did the spit test early on and there were no signs of yeast. We did do heavy metal testing - hair strand - and it was normal - did show low level of aluminium and lead - but in normal range - also showed he needed more calcium and magnesium ( I think) which seemed strange as he used to drink so much milk etc. and had been on a calcium supplement since December.

 

There is also the PITANDS - which is the same as PANDAS but is not just strep related but illness triggered. We think my son has this as he reacts to any illness not just strep - although as his body gets stronger through vitamins/supplements and being off offending food he seems more and more able to manage illness is a normal way.

 

A lot of the behaviours you describe of Karl Henry are one's I have seen linked to food allergies. My son was always challenging although I could never put my finger on exactly what it was. He was a spirited child. I still cannot put my finger on what was so challenging about him but I would not at all define him in the same way now - the change since being off the milk/gluten is unreal - he is a joy to parent. He is not difficult, demanding, emotional, impatient, as rambuntious, etc. I used to worry about his behaviour at school - now I don't even think twice about whether he might have had a time out at school. He has not had a time out since going off the milk. The teacher is amazed by the change she has seen. He is still a 6 year old with normal 6 year old complaints - but he has changed in such a positive way. He was a very happy baby but from about 1 on he became more challenging. Interesting it is also when he would have switched to homo milk!!!!! My middle child cried from the day he was born and was very challenging - he was very ill as a 2 week old and it is a miracle he is with us now. He would not settle with anyone but me, and would not even go to his dad until he was about 1 - He did not sleep through the night until he was almost 2 - now I think much of his crying etc was due to food allergies. I feel like I have learned so much - so baby #3 only had to endure 2 weeks of being miserable and up many times a night before I figured out that he started to have trouble sleeping when we switched him to milk.

I continue to be amazed at what food can do to our children. And, how hard it is to figure out what is causing these behaviours, as it is usually the foods the kids are having daily and the one's that they enjoy.

 

I know how hard it is to go through what you are going through, the good days are so good but then the minute you see a new tic, or a tic return, or a more severe tic your heart drops. I also find I watch my son so much that he could be scratching him head and I will immediately be worried it is a new tic, when he only had an itch. It is all consuming!!!!!!!! I think it is also WAY harder on the mom ( or whoever is the primary caregiver at home with the kids) as we see the tics all day long. I would wake up worrying about how he would be, then watch him eat breakfast, then watch in the rear view mirror and count how many eye rolls he did not the way to school to figure out if things had improved since the last drive to school. Then the waiting at lunch to see how he is when he comes out of the school - he also had some odd tics that would effect his walk. These were horrible to watch. I could go on an on and on... but you get the picture. IT IS ALL CONSUMING. I remember saying to my mother that I felt I had lost all objectivity, I had been keeping a journal since that last week in August when this all started - and trying to write on a scale of 1-10 how he was - it was getting too hard to be objective - I just felt I needed a break from his tics, but there was no break.

 

I too became more spiritual during this - it is the hardest thing I have ever gone through in my life - I also think what I have done for my son over the last 6 months is the best thing I will ever do for him. I really believe I have changed his life path. If I had not found this forum and these answers he would have been on Chlonidine for the tics, he would have continued to be a difficult kid, a challenging student, etc. He would continue to drink tons of milk and other foods that were harming him. I realize I am rambling on a bit here, not sure if I have actually answered any of your questions. Just know you are not alone in this - and be very proud of how far you have come already - and know that the future is full of promise.

[Guest Jeff]

I can speak about the Feingold program. We've been following it for several years - specifically for tics - and it has been a real life-saver for us. There is a membership fee, but it's well worth the money. First year is about $75, then it's about $45 per year after that. Membership buys you a manual of info, the updated annual food guide, regular updates to the food guide, and access to the members' bulletin board. The manual gives you a lot of general info, the food guide is a list of thousands of "approved" products, the updates add or delete items from the list based on new research, and the bulletin board is a very active forum of folks sharing ideas, recipes, experiences, etc. - much like this one.

Once we started eliminating artificial colors, flavors, and preservatives, our tics went from terrible to "not an issue". It can be difficult at times, and when we deviate we tic, but we know we can clean out again and get back on track.

Jeff

[Dara]

Hi Jeff,

 

Thanks for all the info on the Feingold program. Our son is also off all food colorings and preservatives in addition to dairy, eggs, sugar and oranges. It makes shopping and cooking tough. Can you please tell me how to join the Feingold program?

 

Thanks,

 

Dara

[Guest Jeff]

Dara, Go to Feingold.org

Their website will give membership instructions.

It can be tough at first, but gets easier.

Good luck. Jeff

[ad_ccl]

Hi Dara,

 

I was just re-reading your post and it struck me again how your son's tics are worse when watching tv and when in the car - the two clear triggers we also saw. We too limited tv watching for a 1/2 hour a day, mainly to keep a routine of a show and snack before bed - we thought limiting was enough and then when I found this site and all of Claire's info on screens it made so much such just to eliminate the tv completely - what an obvious thing to do, but sometimes the obvious has to be pointed out. I somehow felt we were being unfair to eliminate tv altogether and that limiting to 1/2 hour was fine, yet I could not bear to even sit in the room while he watched tv - causing me more upset, stress, worry. The weeks we removed tv the whole family functioned in a much healthier way. We spent so much time together playing, talking, relaxing. No wasted tv time, no moments of heartbreak watching him tic while watching tv. My middle son would know to turn the tv off if we were all downstairs, it just became part of the routine. We then purchased an LCD tv and have found great success with that. I know you are trying so many things, but this may be one of the missing links. It sounds like you do not have the tv on a lot so it should not be too hard to eliminate the morning tv watching. As I said before having the tv 'break' may be your best bet - we initially did it for a week then decided to add another week, in the end he was probably with no screens for about 3 weeks then on to very limited LCD for a few weeks. As I have said recently, he has probably been watching up to 5 hours of tv a day the last few days, as he has been sick, and yesterday the baby was very sick so I had no choice but to implement the electronic babysitter. He has had NO INCREASE in tics due to this increased LCD watching or his strep infection. Fingers crossed it continues.

 

Good Luck,

[Dara]

Alison,

 

Thanks for pointing out the obvious. Claire pointed it out to me three months ago and for some reason, I have not gone through with it. I guess deep down inside, I feel like I've taken so much away from him already - all his favorite foods, subjected him to tons of doctors and tests and have made him take supplements and vitamins that he can't stand. The reality of it is that I feel so sorry for him and it kills me to take away the one last enjoyable thing that he has.

 

I've decided that first thing tomorrow morning, the TV will be eliminated. Both my boys already watched an hour this morning before preschool and that's all I usually allow for the day. I'm in such a down mood this morning. Have been crying all last night and started again this morning. Helpless sums it up in one word. I don't know if you read my post last night about how Karl started 'humming' when I put him to bed last night. As you know, he's had other vocal tics on and off like coughing, clearing his throat and doing that mucus clearing sound but never has done this 'humming' sound. What's strange about it is that the other minor tics that he's had during the last two or three weeks, such as playing with his saliva and puckering his lips, in addition to the mucus clearing sound have seem to lessen, and now the humming. Of course I barely slept last night anticipating Karl waking up this morning to see if he was still humming. It started about 1/2 hour after he woke up while watching Hi-5 on TV.

 

I have a doctors appointment for him today, which I'm supposed to be getting back the results of his toxic metals test. The doctor I'm seeing is an environmental phycian who treats neurological disorders (ADD/ADHD, TS, OCD) and many other different conditions through diet, supplements and identifing allergies. He's been pretty good, but of course I feel like I have to do all the leg work and ask questions based on what I read on this forum. I wish there was a doctor out there that had a lot of experience with childhood tic disorders and knew exactly how to treat my son. I'm dreaming huh?

 

Anyway, thanks for listening. One last thing that I want to say about the TV. I guess I haven't taken it way yet because I haven't noticed Karl's tics change that much while watching it. Back during the summer when he was having the severe eye rolling I did think it increased when watching TV, but he doesn't have the eye rolling anymore. He tics seem to be pretty consisent, no matter what he's doing, but definately increase in the car or when he is anxious, mad or sick.

 

Any thoughts on what I can do for this new 'humming' tic????

 

Dara

[ad_ccl]

Hi Dara,

 

I am so glad you are trying the no screens - I hope it went well this morning. As Claire has said many times the reaction for many is cumulative - so although you do not see a direct correlation the way I did - with hope you will see a decrease in tics once you remove this trigger.

I agree with you that although you have found a good doctor that much of the leg work is up to you - thank goodness for the access to the internet information. The work you are doing will pay off. What were the result of the metal testing? Anything significant?

With respect to the humming, my son has done this as well, I am not sure there has been a correlation with milk with him as he has done it since being off the milk, it is one of the milder tics in that it seems to only occur when he is eating and I have heard him a few times as he is falling asleep. It has not happened too often and has not lasted any length of time. Last week when he was having some subtle tics this was one of them that I heard when he was eating maybe twice - no one else would have noticed it.

I have no suggestions about the humming tic, I am guessing it may be a bit louder or more obvious in some way than my sons for it to be upsetting you so much. Although admittedly any tic upsets me as well. With hope it will pass soon and you will continue to find answers and see improvements.

 

Good Luck,