PANDAS

[Sunshine]

Hi Kim!

 

I noticed that you were logged on tonight, and I want to thank you for your reply (and for all the other valuable information that I've read from your posts/references!).

 

I tried to search the forum under several different topics/key words. Unfortunately, I can't seem to uncover anyone else with related eye issues. My son was born with a genetically inherited muscular problem (very common), and had surgery at a young age. I have wondered for some time now if his many times under anaesthetic have contributed to his current health issues. Hmmm.....

 

I'd love to read that book which you referred to, or any other articles that you come across.

 

Many thanks,

Sunshine

[kim]

Hi Sunshine,

 

I read your post last night, and went back through the emails, and searched the old ones too, to make sure I hadn't missed where the person who said she would post the book title did, and I might had missed it.

 

I'm sure it was Karen B. from ASD solutions (group moderator and super Mom )

 

Maybe Carolyn can help us out here. I think Karen B. is on Dr. Neubranders site, where Carolyn was just saying she chat's once in a while. Carolyn, if your reading can you let me know if you have "seen" Karen there. I tried her email and it said in box full. I was booted from yahoo mail because of inactivity and it won't allow me to post on the site, so I can only post by email, and I have to bust in on someone elses thread. If Carolyn can't ask her, I will post the link so you can go to the site, and ask. It's live chat.

 

I know Dana has talked about an eye issue with one of her kids, I think it was her daughter. You might want to look around her site. http://www.danasview.net/index.htm

 

These are posts regarding eye problems from a serch of here site.

http://www.google.com/search?ie=UTF-8&oe=U...h=DanasView.net

 

Your welcome for the response and info. sharing! Please keep us posted on your progression with your son.

 

Kim

[JeepMom]

My son developed an eye tick when he was almost 13 1/2 yrs. old. It started with blinking quickly about 5 times in a row. That disappeared and then a new tic came -- his eyes roll up and to the left. Our ped. was wise enough to know this could be strep and brought us in. He had ABSOLUTELY NO symptoms of strep! Our 16 y/o daughter had a sore throat. Both of them were swabbed for strep... her's negative, his VERY POSITIVE. Our Ped. thought it was PANDAS and gave us a RX for Amoxocillian. 2 weeks later, no strep positive.. Again , never a single sore throat symptom. We assume he carries the strep virus but suffers no symptoms. When he was about 2 or 3, he developed a strep infection around his rectum. When he was in 1st grade, strep caused him to have scarletina and his entire body broke out in a rash -- including the palms of his hands.

We spent lots of time and lots of $$ with a neurologist and I finally stopped taking him because I don't think he had any idea what to do. Meds ( something similar to that given to epileptics) didn't help.

 

He's an A & B student except for the last 2 classes of the day where he gets fidgety and irritated. Both of those teachers are not very " good" for lack of a better word . . . and so his grades always suffer in there.

 

The tics were practically gone until a few weeks ago and now they come back when he is tired, in the car, or watching TV.

 

I read on here that is not uncommon among PANDAS kids. Why does the LCD screen make a difference ?

 

He also complains about bright lights and wears sunglasses and a hat to keep the light down. Is that familiar to anyone also , or do you think it's a light sensitive issue for an optomologist to explore ? ?

 

Will he outgrow PANDAS ? Since he is now 14, but still had yet to hit puberty, I'm wondering and worrying.

 

Also, since he has NO common SYMPTOMS of STREP such as fever, strep throat, etc; does anyone have any ideas of how we can tell if the strep virus is in him ? ? ??

 

Nice to know others are dealing with similar issues

[ad_ccl]

Hi Jeepsmom,

 

As Ronna says, I too am not a "PANDAS expert" but am an expert on my son with PANDAS. Thought I would try and answer some of your questions.

 

My son also never had any symptoms of strep. Swabs and blood tests would confirm the diagnosis.

At the early stages of his illness, after the sudden onset of symptoms along with a strep infection, my son's tics were always worse when tired, driving in a car or watching tv. Definite triggers. Through this journey we discovered he had photosensitivity - and he now watches an LCD tv which does not flicker. It is the flicker which causes the reaction. The same flicker that can happen with floresent lights and with light coming into the car through trees, houses, buildings etc. If you look into photosensitive epilepsy you will see many of the same triggers as your son is experiencing.

My son also had a lot of trouble with bright lights - he wore sunglasses and we used one's that have a blue lens which is supposed to be better - I think yellow and red are the worst. He no longer has the same issues with the sun - although today did say his eyes did not feel well in the bright sunlight. No tics though. I think B vitamins are supposed to be good for photosensitivity and we also found L taurine was good when he had eye tics.

 

I think a good way to test for strep in light of him having no symptoms is to do blood work and test strep titers - it shows if he has strep antibodies indicating he has had a recent strep infection.

We have just re-tested for this - my son's numbers have remained high for the last 18 months so I am interested to see what these results will be. My son has been on prophylactic antibiotics for over a year now and is doing really well, very minimal tics - most often he is tic free and when he does have tics no one would notice they are subtle and there is always a trigger - ie. allergies, viral infection.

I do think PANDAS is something that will be outgrown and I think there are ways to help minimize the symptoms. This is an auto-immune disorder so focus on what could be bugging his immune system. For my son every day foods were a cause of tics - through testing and then removing foods, tics decreased tremendously, also yeast became an issue due to on going antibiotic use. We are now addressing that as well and my son has been very stable. When tics emerge they are subtle and there is always a reason for it, something that has bugged his immune system.

 

Good Luck!

[kim]

Sunshine,

 

Here is the info. on the book. Did you get anything useful from Dana's site?

 

This is from a post from someone who was waiting for the name of the book too, and Karen B. posted the response:

 

Here is a link with testing from David Cook who wrote the book.

http://www.cookvisiontherapy.com/

Here is the book.

When your child struggles.

Here is the link to preview:

http://www.cookvisiontherapy.com/book_struggles.html

[Sunshine]

Kim,

 

Thanks for the info.... it looks awesome!

 

Just an interesting note for all readers:

 

My son has one eye that turns outward. It definitely got worse after the onset of tics, and reamained (for the most part) more off center than before.

 

We noticed a huge improvement when we pulled him off gluten and started enzymes!!

 

It's 'off' again now, but his tics are currently worse (not certain of cause, although we have some suspicions!).

 

The human body is such a complex mystery which most people take for granted!

[kim]

Sunshine,

 

That's great news about the gluten and enzymes. If you get a chance, I'd be really interested to hear what ones you're using. Did you have IgG testing for gluten?

 

Kim

[Sunshine]

Hi Kim!

 

Sorry that it has taken me so long to reply, but we have been very sick! We had a double whammie of strep (a five letter word that I have grown to detest!), and the flu. My son has lots of new tics, continuous throughout the day, although his spirits are good. He is such an amazing little boy!

 

To answer your question, we never had an IgG test done. My son's allergist told me "You are at risk of malnourishing your growing child by litmiting his food options. There is no scientific correlation between food allergies and tics." ....... We'll never see him again! My son's naturopath will run the IgG test, but she ran the Vega test first (85% accuracy). My son tested allergic to wheat, oats, and wheat bran. She therefore suspects that he is probably gluten intolerant, and possibly celiac. We pulled out gluten to see, and it has made a big difference. We can't test him for celiac unless we add gluten back into his diet, and we are not yet prepared to do so. In Canada, however, if a person has celiac, they can claim some food expenses (difference in cost between regular bread and specialty bread, for example) on their income tax return. Therefore, it may be beneficial, at some point, to run the celiac tests.

 

To answer your other question, my son is on two different types of enzymes. He takes UDOS complete digestive enzymes with every meal. He also takes KidZYME enzymes, a complete enzyme formula for children put out by Renew Life. I have seriously looked into Houston Nutraceuticals products, especially the No Phenol. However, I'm still uncertain if they can be sprinkled into food. My son has not yet mastered swallowing pills, so we sprinkle all of his supplements into 2-3 Tbsp of organic baby food. Thankfully, he is not insulted, but rather he sees it as a delicious way to take vitamins. He's a great kid!!

[kim]

Sunshine,

 

Yes, Houston enzymes can be sprinkled on foods, mixed in drinks etc. You can't put them in anything hot, warm to the touch if fine. I believe if you mix them in something, then refrigerate, they will be ok for about 2-4 hours (you would want to double check that). Some Mom's will melt chocolate, let it cool until just warm to touch, mix in the enzymes, put drops on wax paper and freeze, then they give their child a chocolate enzyme wafer. Houston also has chewables. They're more expensive though. If you mixed the powder from the capsule in food, you would want your son to kind of rinse his mouth with a drink. If the powder is in contact with the lips, or tissue in the mouth too long, you may get a little irritation.

 

Since you have just had a strep infection, you may want to carefully read this again. I have copied this and have been piecing things together, little by llittle. This has been an amazing "eye opener" to me. It fits so much of what has gone on with my boys. It even ties in my oldest son's osteochondroma (bony growth, looks like he has 2 ankle bones on inner ankle).

 

http://www.autismanswer.com/articles/yasko...citotoxins.html

 

from above link:

 

Consequently, the net results of streptococcal infection are depletion of Vitamin K levels, decreased glutathione levels, decreased sulfhydryl protein levels, over stimulation of the immune system, increased TNF alpha levels (which trigger OCD, facial tics, etc.), potential autoimmune responses and inflammatory reactions against the GAGs in the GI tract.

 

You can google TNF alpha (Tumor necrosis factor-alpha).

 

I am going to include a link describing an osteochondroma. Notice the GAGs and the disrupted heparin sulfate chains. Ties in pretty neatly with Amy Yaskows theorie on the autoimmune funtion in relation to strep. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum

 

I have always suspected sulfur problems were involved in my youngest sons eating patterns, along with

disrupted sugar metabolism. It's amazing to get a hold of so much info. in one place.

 

As far as you're allergist's remarks, these people need a good swift kick in the ***!!!!

 

Kim

[Sunshine]

Kim.

 

Thanks, as always, for your response!

 

I read the articles from your last post, and I even had my husband read them to aid in deciphering the details! I'm still trying to really understand the role of glutathione, glutamine, glutamate, glutamic acid... My interpretation is that the strep depletes glutathione, which is needed for successful immune/body functioning. I also believe that the other forms (glutamine/glutamate...) are not helpful, and, in fact, may be harmful (especially for ASD kids). Interestingly, my son's enzymes (kidZYME) contain L-Glutamine. I'm assuming that it may not be beneficial to him, as he is on a gluten free diet. Does that make sense?? Anyhow, I've stopped those enzymes, and will look again into the Houston products.

 

PS

 

I found it most interesting that my son is allergic to tomatoes and mushrooms (no other veggies), milk, and cheese. These foods are high in glutamate. Just another puzzle piece!

[kim]

Sunshine,

 

I have found these sites helpful, when trying to get a handle on the "gluts"

 

http://en.wikipedia.org/wiki/Glutamate

 

The box at the bottom has other amino acids info. This one was interesting too.

 

http://www.bris.ac.uk/Depts/Synaptic/info/glutamate.html

 

HTH

 

kim

[Sunshine]

Thanks, Kim.

 

Any thoughts/knowledge on rating the severity of tics. It seems so subjective, and I'm finding it hard to gauge my expectations for my son's progress. What constitutes mild tics? Likewise, what is severe? I'm curious to read any people's inputs on this. Thanks.

[kim]

Sunshine,

 

This is just from observation with my boys. For 9 yr. old... blinky, a shoulder shrug, a little hummm (vocal/soft) are mild tics. He may have one of these at a time. If he has one of these +plus a head shake, which is mostly tipping his head backwards gently, I start getting nervous, and up his supplements and start wrestling things out of his mouth. He will take frozen orange juice and eat it right out of the can. Just a little too high in sugar!

 

My older son (13)does not tic, unless its a big one, like when he had the staph infection around Christmas. He was head shaking very hard, and a tongue tooth tic. MISERABLE.

 

I know this probably is not real helpful, but that's the main tic history here. My older son had a few others when he was younger, humming songs, squeaking tennis shoes on floors, bruxism, 1 loud vocal for a couple of weeks only at home in evening - stopped/never returned probably 3 to 4 yrs. ago.

 

kim

[kim]

Michele,

 

Bumped this thread for you.

 

In response to the question about behavior issues (on the "testing thread), you might want to try epsom salt baths.

[michele]

Kim,

 

Thanks for the strand. This is one I had never read. As much as I read there is so much more. It seems like there was more people reading this forum at one time with kids having PANDAS symptoms. Not very many right now. It makes it hard when there is not parents to chat with going through similar situations. Do you have any ideas of other active message boards? Thanksagain for all your help and interest. God bless.

 

Michele