Question for Pandas kids

[kimwal]

Those of you that are doing antibiotics for your PANDAS kids, do you also have your children on meds??

My son is on meds , in fact doing pretty well on them. I would like to try the antibiotic route, however, I'm afraid to take him off the meds, in case all the tics come back and he gets all messed up again...any suggestions???

[ad_ccl]

Hi there,

 

We have never used meds for our son. He has been on antibiotics for the last 2 years. We had a very dramatic overnight onset of symptoms when he had just turned 6. Going off them this summer was a disaster. With PANDAS the root cause is the infection, if you figure that out then the symptoms should get better. I think the immune system is just soooo complicated. I think the meds just get to the symptom, not the root cause. That is my opinion anyway.

I think there is still so much to learn about this.

 

We are currently on azithromycin and I would say he is 99% symptom free - and the 1% is only noticed by me! 2 weeks ago we did not think he would be able to start school.

 

Good Luck with whatever you decide to do. I imagine the age of your child would also factor in - as they get older they want to be more "normal" - whatever that is!

 

When was he diagnosed with PANDAS. What are his titers like now? Did antibiotics clear things up initially?

[evie]

My son was also only on antibiotics - no meds. The trick is finding the right one that will work on your child. We found that what may have worked once, doesn't necessarily work a second time. I actually am trying Zithromax (Azithromicin) right now - out of desperation, being that we had one week of Augmentin, and a second week of Ceclor with no results. I just wanted him to start the school year smoothly. Today is day 3 and I don't really see results.

 

ad_ccl - did you ever test your son for a gluten/casein intolerance? We just got positive results and I am hoping that eliminating the offending foods will clear up the PANDAS, as gluten intolerance causes autoimmune diseases like Pandas.

 

We used Entero Lab for the 'Gluten Sensitivity Stool and Gene Panel Complete' test. You can order it yourself. (www.enterolab.com) It is quite expensive ($369) but I was told by my doctor that it is the most accurate test out there.

 

Good Luck!

[ad_ccl]

Hi Evie,

 

We did do the ELISA testing and he was sensitive to gluten, dairy, soy and eggs - so removed all of that from his diet. We then started to re-introduce gluten - he is still 100% dairy free and soy free but not 100 gluten free, he has bread for school lunches ( although just 1/2 a sandwhich) I still do all the baking of muffins, granola bars etc -with rice flour. We did see a real improvement when we removed the foods and did gradually re-introduce with no problem - we are still trying to be mindful of his gluten consumption. Going dairy free is easy, the gluten free is a challenge - we did it 100% for about 6 months.

 

Hope the azithromyicn kicks in - we did notice a difference pretty immediately, by day 3 it was significant. Have you seen an immunologist?

[evie]

No major improvement on the antibiotic, however I plan to begin the GFCF diet early next week, and hope to see an improvement from that.

 

How long did it take for you to see results once you began your son's diet?

 

Another question. Even by being gluten, casein, soy and egg free - your son still needs the antibiotics to stay symptom free? I was under the impression that by eliminating these foods, symptoms should be under control... at least that's what I'm hoping for...

 

It's encouraging to hear that you were able to reintroduce the gluten after 6 months. Maybe there is some hope...

[kimwal]

WE never tried long term anitbiotics for the PANDAS. We did the titers testing and it was high. HIs neuro at the time never mentioned doing antibiotics. We tried other things, steriods to boost the immune systme, different diets, no sugar, wheat, milk etc. But none of that worked.

WHat is a good company to get strep titers testing??? Can I order the test myself???

[Chemar]

kimwal

i am astonished that your neuro gave STEROIDS?!

 

steroids are amongst the biggest tic triggers around! (see this article, near bottom re steroids http://au.geocities.com/jones_kacm/chem.htm )

PLUS

steroids DAMP DOWN the immune system,(ie they are immunosuppressive) and so they do not boost it!!

 

also, why on earth would he not have treated the strep with the only thing that truly eradicates it, an antibiotic?

 

 

 

I am not sure but I think only a doctor can authorize the strep blood test needed to diagnose PANDAS

[kimwal]

what exactly is the name of the test I should ask for. We did it several years ago, but I do not know the name and we are not using the same doctor that got it for us.

Thanks!

Also what are some natural things to take to boost the immune system??

[Chemar]

Hi Kimwal

 

this is what needs to be tested...I dont know what the "official" name for the test is other than blood test for strep antibody titres

 

a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)

Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

 

there are many ways to boost the immune system via diet and supplements

 

top immune boosters are

Vitamin C and vit E, Carotenoids, Bioflavenoids, Zinc, Garlic, Selenium, Omega 3 fatty acids

 

good supps include echinacea, golden seal, grapeseed extract =pycnogenol, olive leaf extract and bilberry

 

HTH

[Pandamom]

My daughter is on several meds and antibiotics. We intially saw alot of improvement and now she is regressing quite a bit. Our doctor keeps playing around with her meds but when we reduce them we see an immediate drop in her condition. We are using Pexeva, valium, zyprexa and penicillin at the moment. What meds are you using that work for your son?

 

Thanks

[kimwal]

Hi!\

My son is currently on Haldol, tenax, and Lexapro.

The Haldol is for the tics. He can have very severe tics, ( everything from cursing to having "urges" as he calls them to bite on his teeth to where they have chipped) to just shouting out.

Haldol has been the only med to help, and believe me we have tried them all.

Tenex is for the ADHD. And the Lexapro is for the OCd.

[deagar]

kimwal

i am astonished that your neuro gave STEROIDS?!

 

steroids are amongst the biggest tic triggers around! (see this article, near bottom re steroids http://au.geocities.com/jones_kacm/chem.htm )

PLUS

steroids DAMP DOWN the immune system,(ie they are immunosuppressive) and so they do not boost it!!

 

also, why on earth would he not have treated the strep with the only thing that truly eradicates it, an antibiotic?

 

 

 

I am not sure but I think only a doctor can authorize the strep blood test needed to diagnose PANDAS

 

Chemer:

My sons was on Nasonex for his allergies, which I believe is a steroid. I took him off of it before we had the delayed food sensitivity test and never put him back on it since he appeared to be fine (although he still is on Zyrtec). So could that have been effecting his tics???

[CKJ]

kimwal

i am astonished that your neuro gave STEROIDS?!

 

steroids are amongst the biggest tic triggers around! (see this article, near bottom re steroids http://au.geocities.com/jones_kacm/chem.htm )

PLUS

steroids DAMP DOWN the immune system,(ie they are immunosuppressive) and so they do not boost it!!

 

also, why on earth would he not have treated the strep with the only thing that truly eradicates it, an antibiotic?

 

 

 

I am not sure but I think only a doctor can authorize the strep blood test needed to diagnose PANDAS

 

Chemer:

My sons was on Nasonex for his allergies, which I believe is a steroid. I took him off of it before we had the delayed food sensitivity test and never put him back on it since he appeared to be fine (although he still is on Zyrtec). So could that have been effecting his tics???

 

My daughter was on Rhinocourt (same kind of steroid as Nasonex) and Dr. Murphy (does the PANDAS research at UF) said this wouldn't be a problem - she said she had lots of kids on nasal steroids and it didn't effect the tics or PANDAS.

[Chemar]

Hi CFK and welcome

 

yes, there is a BIG difference between steroids inhaled and steroids injested, which is what I initially thought kimwahl was referring to...ie that her chilld was taking steroids orally.

[kim]

The Pediatric allergist (Integrative Physician) that I took the boys to, said not to use nasonex. If I remember right, his reason was that the steroid would aggrevate yeast or gut flora imbalances.?