getting to the end of our rope

[Guest Guest_mommy007]

Hello,

 

I am the mother of an 11 year old boy about to enter middle school (6th grade). My son was diagnosed after 1st grade with ADHD. After much pressure from the school we medicated him, the medication went on for years, he focused, but his movements increased, and lots of other horrible side effects (it's a LONG history). My son was evaluated by a behavioral ped, school psychologist, behavioral school specialist, school psychiatrist, independent psychologist, and recently a Neurologist at A.I. Dupont for children.

 

My son had the Flu last December, he started picking at his face, stammering, scratching, hyper, frequent urination (for years) and having night terrors.

The doctor at A.I.Dupont diagnosed him with PANDAS, I myself have a history of Rheumatic fever and Syndhams Corea, and was bed ridden for 3 years as a child.

The doctor put him on a low dosage Antibiotic (since February 04) I have since added a Multi-vitamin, probiotic and just started ginga biloba.

 

His ASO titer in Feb was 577, his AntiDNase B was 480 -

in June his ASO went down to 474 and ADN to 340 we were thrilled, he no longer had night terrors, he did not have to go to the bathroom constantly, he even had no problems with allergies ( which he has for 6 years ). He was calmer, more focused, things were looking good!

 

Then . . . three weeks ago he started getting hyper, loud and just unbearable. We went on vacation the next week and by thursday that week his throat hurt and he was congested - that made sense - I gave him Echinacea for three days and the cold symptoms were gone.

 

He just had additional blood work done, I know his ASO is up to 480 - I expected that - I should know the results of the AntiDNase B today. I also had them check his Copper, Lead and Murcury levels.

 

My concern is, he was making progress and he had a total regression, I am just finding it difficult, with school starting in 3 weeks, and the lack of understanding.

 

I did meet with the elementary and middle school teachers/administrators last year, 18 in all!!

 

What else should I be doing??? I don't know what my son is like with normal titers!!! I do now when they decreased he had great improvements, and even with the decreased titers, they are still very high.

 

I want to see my son with normal titers - how do I get there?????

[Guest Jeff]

007, Sorry to hear that things have gotten worse for your son. I can't tell you anything about reducing the titer levels; I can only share what I have learned over the years regarding tics, behaviors, etc, and how they are affected by foods we eat. If you read any of my other posts, you will see that we have had great success in reducing tics by eliminating artificial colors and flavors from our diet. We've also learned that corn syrup has a nasty effect on behavior for many children. Corn syrup has many other names such as, fructose, high fructose corn syrup, maltodextrin, dextrose.

Is there any chance that your son might be reacting to something he's been eating?

If you want more information, check out feingold.org, or post questions to this board. There are several here who know the effects that these additives can have on our children.

Good luck.

Jeff

[Chemar]

hi mommy007,

 

so sorry to hear things are in a rough patch.

 

I know very little about PANDAs, but I do know that Ronna has stressed that certain anibiotics just are NOT effective in bringing down the titres, and that only specific antibiotics will do the job.

 

Hopefully she will pop in here to advise, or you could email her thru the members list info here.