My PANDAS story (another new PANDAS Mom)

[CKJ]

I'm new here too and just read the other PANDAS topics -specifically regarding the use of antibiotics and how long they take to work. My 6 year old daughter was diagnosed with PANDAS a month ago after enrolling her in the PANDAS research study at the University of Florida. We have been dealing with this for two months now. She had a strep infection at the very beginning of August and a few days later "exploded"....came out of nowhere- she had no prior problems, was in the gifting program last year at school, a normal child. The first month and a half were mostly tic related.... mood problems, ADHD type stuff, rage attacks (yelling - kicking- screaming for no reason), severe tics (motor and vocal). The tics sometimes get a little better for a few days and then come back bad again, but the irritablity, moodiness, crying, rage attacks remain. The past two weeks the OCD has started - fear of ants, spiders, tapping everything a certain number of times and being obsessed with her writing (erasing things constantly and rewriting). She has been on antibiotics for almost the whole two months: 10 days of amoxicillian for the strep then diagnosed with a sinus infection 10 days later so back on antibiotics (Augmentin this time) for 10 days. Then three days after finishing that course the Dr. at the PANDAS research study recommended going back on the augmentin for 3 weeks, which we did, and she just started the prophylaxis three days ago (1/2 dose of Augmentin for 3 months). I have seen NO significant changes. The Dr. doing the research said last week that it still may be too early. I know how some of you feel because from everything I read (and I read EVERYTHING I could), I expected things to be pretty much resolved in 2-3 weeks. That didn't happen and I now don't foresee it happening anytime real soon.

 

I do know for sure that it is PANDAS as she was thoroughly tested (about 5 hours worth of motor, cognitive and medical tests) right at the source: the PANDAS Research Study at UF. I am told it is one of the few places in the country that does this level of research. The told me it was PANDAS and they enrolled her into the study. I feel very fortunate to have access to the Dr's there and their advice and information. Everyone there was WONDERFUL.

 

We are going back for our second research visit this coming Monday and Tuesday. I have a list of questions ready! We are also going to have a consult with the Dr. that does Cognitive Behavioral Therapy (for OCD) there.

 

To the others that have also questioned the antibiotics and if/when they will work, apparently it isn't as clear cut as one would hope. Wish it was! This is torture!

[evie]

Hi CKJ,

 

For us the trick was finding the right antibiotics. We went through many different ones until our son responded to the right one for him.

 

Many PANDAS kids have positive results with Zithromax (Generic: Azithromycin) although that didn't work well for my son. He had good results on Keflex and Clindamycin at one point, but that stopped working for him as well.

 

I would try a different antibiotic. If it is PANDAS, you should see results literally within the first few days of taking the correct antibiotic, if not switch to a third one. Remeber to have your daughter take a good probiotic (culturelle) while she's on all of this medication, as it can wreak havoc on her intestines.

 

Being on so much medicine casued my son to have chronic diarrhea which lasted over a year! We ultimately came to the conclusion that he has a severe gluten and casein intolerance, and have begun a strict elimination diet about three weeks ago. We already see a major improvement in the diarrhea, and a noticeable one with his tics.

 

Although the conventional doctor may not agree or support this route, you may want to consider testing for allergies, as that is a very common problem amongst PANDAS children. Many have found when eliminating the 'problem' foods, along with adding some supplements, the whole situation gets much better. Just keep on reading on this board and you'll see so many examples of this.

 

Good luck with your daughter. We've been down that road and it can be very frustrating and emotionally draining. You definitely came to the right place for support and info. The people here are amazing!

 

Evie

[CKJ]

Hi CKJ,

 

For us the trick was finding the right antibiotics. We went through many different ones until our son responded to the right one for him.

 

Many PANDAS kids have positive results with Zithromax (Generic: Azithromycin) although that didn't work well for my son. He had good results on Keflex and Clindamycin at one point, but that stopped working for him as well.

 

I would try a different antibiotic. If it is PANDAS, you should see results literally within the first few days of taking the correct antibiotic, if not switch to a third one. Remeber to have your daughter take a good probiotic (culturelle) while she's on all of this medication, as it can wreak havoc on her intestines.

 

Being on so much medicine casued my son to have chronic diarrhea which lasted over a year! We ultimately came to the conclusion that he has a severe gluten and casein intolerance, and have begun a strict elimination diet about three weeks ago. We already see a major improvement in the diarrhea, and a noticeable one with his tics.

 

Although the conventional doctor may not agree or support this route, you may want to consider testing for allergies, as that is a very common problem amongst PANDAS children. Many have found when eliminating the 'problem' foods, along with adding some supplements, the whole situation gets much better. Just keep on reading on this board and you'll see so many examples of this.

 

Good luck with your daughter. We've been down that road and it can be very frustrating and emotionally draining. You definitely came to the right place for support and info. The people here are amazing!

 

Evie

 

Thanks for your reply. My daughter was sick last year with stomach ulcers and had all the allergy testing, testing for Celiac, etc. and she didn't have any problems with this. She also took probiotics then due to severe diarrhea so I am planning to put her back on that now that she has been on the antibiotics so long. Surprisingly, she has not had any stomach problems - stools are loose but not diarrhea nor has she complained about stomach problems. I make her eat yogurt each day so that may be helping too. We are seeing Dr. Tanya Murphy at UF and she recommended the Augmentin. I will ask her if another antibiotic would help or not when I see her again next week. Currently she is also taking Coromega (2 packs per day) and melatonin to help with sleep. We are going to talk about adding clonidine or guanfacine to help with the rage attacks and moodiness, I was very against this at first but am beginning to realize that it may be necessary. This just kills me....

[Ronnas]

I am sorry for what you are going through with your daughter. With time most of this gets easier to deal with. The really good news is that your daughter is seeing Dr. Murphy. Seriously, a few years ago I would have given ANYTHING to be involved in the research at the University Of Florida. Finding a understanding doctor, who understands even a bit about PANDAS is a challenge for just about everyone dealing with PANDAS and to be seeing a doctor specializing in PANDAS and actively researching it is truly a blessing.

 

I think the University of Florida has 2 studies underway right now...not sure which one you are involved in. Is the study dealing with antibiotics at all or is it just tracking strep infections throughout the year?

 

In our own situation my son did not respond to Pen Vk but when he was on Keflex for a post op infection we noticed a DRAMATIC improvement very quickly. Over time we switched to Clinamycin with good results and he now is currently on azithromycin with really great results.

 

In the beginning doing a food elimination diet and eliminating milk, eggs, corn and chocolate was VERY helpful, we began supplementing with Bonnie's vitamins and the elimination of alot of TV and video game time was helpful. As a side I see that your daughter is on an omega 3...my son never did tolerate omega 3's but did well on a combination of omega 3's and 6's. He did tic more with just the fish oil and overall I don't think I personally react well to just omega 3's either so you may want to consider other factors as well outside of PANDAS,

 

I hope things improve in the next few weeks and that your doctor's appt goes well. Take Care! Ronna

[kim]

CKJ,

 

I wanted to mention that the celiac test that our reg. pediatrician did (blood work, oldest son), showed no problem as far as celiac, however his IgG testing showed a significant reaction to grains.

 

There is a lot of information on this forum regarding the differences in these test.

 

If you use the seach box at the bottom of the first page, and type in food sensitivity testing, or IgG testing, you will probably bring up many threads, if you are not already fimiliar.

 

Kim

[evie]

CKJ,

 

I agree with Kim. The celiac bloodwork that my pediatrician did six months ago also came back with a false negative. It was not until we used a stool test (a fairly new approach) from Entero Labs (www.enterolab.com) which came back with the positive results, that we felt we finally had our answer. you can order this test yourself, although it is quite expensive.

 

A gluten intolerance, aside from stomach issues, can also cause autoimmune diseases - which is what PANDAS is. We hope that by sticking to the diet (which is tough!) we should see improvement in our son shortly.

 

Good Luck!

[Chemar]

For those needing support and EXCELLENT info, recipes etc etc on Gluten intolerence and celiac there is a

GLUTEN/CELIAC BOARD at BT2