Milk Allergy

[Helpmyson78]

Hi everyone!

 

Well it's been a long road for my son and our family, and this website has been a blessing to say the least. My son has had motor and vocal tics since he was 1.5 yrs old and they have gotten way worse. Upon reading the Sheila Rogers book, and a lot of posts on this wesbsite I have learned so much on how to help my son. He saw a neurologist a year ago who told us he had a tic disorder and that was it. Great right ?

 

I have currently made my sons room dust free, air purifier, dust mite pillow covers, humidifier (winter here) hypoallergenic bedding...etc etc.

 

He eats very healthy already no dyes, food colorings, high fructose corn syrup.

 

I got rid of all candles in the house, use dye free scent free detergent.

 

We don't use perfumes or cologne anymore.

 

(can you tell I'm going full speed trying to help my son)

 

Questions!

 

1. All his tics come out at night, leaving him incapable of sleeping, why is this? He started melatonin 4 weeks ago, Godsend! But why all at night.

 

2. why does he tic at the table? Dinner, breakfast...when he is sitting eating he tics

 

3. He was on soy milk till 1.5 years old because he was puking all day, and the doctors told me it was normal, so I took it upon myself to try soy milk, and it made him healthy and happy!!! But then the doctors said to try whole milk again..when he was 1.5 years old...and that is when his tics started. How long should I eliminate milk? A few weeks? A months? Before I might see possible changes?

 

4. He tested positive for strep two weeks ago and isoniazid cefdinir,for possible PANDAS.... Seeing Dr.Kaplan here in MN next Tuesday ... I'm reading he is a critic of pandas, but we shall see... My son has shown OCD symtpoms the past two months, like I said he has gotten worse with everything, I know pandas kids have a hard time at night...I'm open minded about him having it or not. The antibiotics really haven't made the tics worse, but if he has been strep ridden for two years I'm assuming it's not going to go sway in ten days!

 

As all of you know helping a child with all this going on is a full-time job that takes toll on every aspent of your life....I'm basically proud of myself at this point for advocating for my son and not letting doctors discourage me. My son is happy and well adjusted most of the time for being 4 , he gets very mad at night because the tics wont stop and it breaks my heart.

 

Thanks for any input and help on this!!

Edited February 21, 2012 by Helpmyson78

[Helpmyson78]

I should add he is going to an allergist soon as well... An has had EEG's ...sleep studies.... Etc

 

Please excuse all the typos!! Tired mommy!

[Familyof5]

My kids (all 3) of them have had tic disorders. Their immune systems were badly damaged from toxic mold since birth. I didn't see that you have taken gluten out of your son's diet. Gluten, lactose, and corn (including high fructose corn syrup) all will cause each of my children to tic in different ways. If I am successful at keeping their diets clean they stay very healthy and almost completely tic free.

 

In regards specifically to lactose....I'd definately take lactose out. My daughter's OCD, impulsiveness, ear popping, vocal tics and more all disappeared when i took lactose out. I noticed a difference in her school work within a week. But, within a month there was no doubt that keeping lactose out of her diet was hugely successful. It has now been about four months and I still see her getting better in so many ways from not wetting her pants, to neat handwriting, to the vocal tics ceasing, as well as the hair sucking, finger licking tics.....all gone!

 

Check for mold in your home also. Do you have a forced hot air ventilation system? In our old toxic home, my daughter would tic very badly whenever she laid down in her bed. I came to realize that the vent blowing the air was directly above her bed. When I closed the vent and stopped blowing the air in her room, her tics began to minimize. It may be a reason why your son tics more at night...just something to look for.

[Cj60]

Hi,

 

Just wanted to compliment you on all you're doing for your son. The dividends of investing so much care aren't always noticeable, especially right away. But when you leave no stone unturned, you find things that you wouldn't have found if you did nothing. I hope your visit with the dr. regarding the pandas goes well.

 

I can comment on a couple of things in your post. We eliminated dairy (not just lactose) from the get-go, and allowed none of it for close to 6 months, by which time we had identified some other dietary changes and supplements that seemed to help along with the dairy elimination. We eventually started letting him have pizza once in a while, and now he has it somewhat regularly (no more than once a week, but typically not even that much), but that's the only dairy he gets, and I don't ever plan on providing it to him in any greater measure than we do currently.

 

I've seen it posted here, and experienced with my son, that an increase in ticcing at the end of the day is par for the course. I know it's getting close to bed time if I see an increase in tics.

 

I think the table can be similar. Kids are less focused and I can see how the transition from being active and engaged in something to sitting down in a chair for 30 minutes results in some tic release. It could also simply be that we have them directly in front of us for an extended time and actually witness the ticcing directly. And/or it could simply be that at the table with their family they can just be who they are.

 

Good luck, and let us know how things progress.

 

Chris

[Helpmyson78]

Thank you both for your input ! I suspected the dust,vent idea, and also figured it was just that with bedtime and mealtime....relaxing, sitting and focusiing on relaxing etc.

 

My son has been on cefdinir for 12 days today and this morning woke up tic free, he tics every morning....it's like my alarm clock. He has had morning tics for years and it's amazing for he first time hearing him sing ....in the morning ...yes I was sobbing I was going to give up on the pandas deal, but now I have to wait and see what the meds might do. Since he did test positive for strep with no symtpoms, which urgent care thought I was crazy for requesting the strep test.

 

Thank you for encouraging words, if I didn't have my faith to hold onto and to keep me strong I would be lost. My husband and I have worked so hard to look outside the box with everything and will regardless of a pandas diagnosis or not, will continue to help our son thru this!

 

Thanks again !!

[JensOfSweden]

Weird, milk and casein tends to make me calmer and tic less usually. Almost to the point that the tics aren't an issue, weirdly enough

[Chemar]

Discussion on Milk reactivity from PANDAS forum http://www.latitudes.org/forums/index.php?showtopic=16771

[MomOf3Boys]

Similar story, Heres what has worked for me (and my oldest son). I spent a year doing everything...and i started seeing a positive impact after putting epson salts in his bath. That got me thinking, he might have a mineral deficiency. When I gave him Floradix liquid magnesium (1 capful in am, quickly increased to 1 more capful before dinner). At the same time I removed milk (not due to diagnosed allergy but because calcium needs magnesium to absorb in the body, and I suspected he was lacking magnesium!). Game changer. What I give is double the recommended for his age (7), but it has changed his life and ours. His tics, aggression, insomnia, eating habits, have all slowly disappeared. He now asks for it and knows it helps him. When he does not get the magnesium, it's awful, so we travel with a cooler bc it has to be refrig. They also have liquid products with zinc and calcium, so you may want to see what works best for him. I just use the plain magnesium one. I used to put in OJ and now he drinks it straight. I buy my bottles at Whole Foods but I'm sure you can find elsewhere (it's avail online too). I hope it helps!!