Confused about treatment

[FallingApart]

Hello,

 

My 3 yo daughter has had PANDAS since Jan of this year. Our pediatrician has been fabulous in working with us on this. She was already educated on PANDAS and was willing to investigate further to provide the right treatment for my daughter. Until our diagnosis and antibiotic prescription, every day was worse than the day before regarding behavior and anxiety. Once we got on the antibiotics, her behavior stabilized. The anxiety continues to worsen, but her behavior has stabilized.

 

The part I am confused on is how the treatment(s) work. I've been reading through this forum for about a month now and am familiar with most of the concepts. What exactly is the role of the antibiotics? Are they supposed to improve our children? Or just prevent them from getting strep again in the future and thus another bout of PANDAS? Because I feel that we have seen no improvement since we have been on the antibiotics. We are still on our first and only bout of PANDAS and we have seen no improvement in over 2 months on antibiotics - only stabilization. Is the only real treatment for this IVIG?

 

We have our MRI this Thursday and as long as that is clear we are planning to move forward with the steroid blast. Our family is at our wits end with our situation as I know you all must be as well. I think I was expecting that the antibiotics would make some improvement in our daughter but now am wondering if I was wrong to have such expectations? Can you tell me at what point I should realistically start to see some improvement in her?

 

Also, we did the Celiac Disease blood test and everything came back negative except for eggs. This would indicate that we don't need to change her diet much. Has anyone else done this test and had normal results but still had any successful results when changing your child's diet or supplements?

 

Thanks so much!

[peglem]

Yes, this is all very confusing. My understanding of the prophylactic antibiotics is that the main purpose is to prevent future exacerbations by preventing strep infections....But, my experience (coming from the chronic strep perspective) is that most antibiotics did not work for my daughter and she kept getting reinfections anyway. However, when we put her on azithromycin, there were immediate (within hours) improvements in behavior, anxiety and function. It keeps the strep at bay, and the improvements are maintained, but she has never gone back to as good and healthy as she was prePANDAS. I've never done IVIG because I can't afford to go outside of insurance and haven't found a specialist who will prescribe that course of treatment, and my daughter is a teenager, so possibly would not benefit as much from it as she would have at a younger age. If I can get it approved in the future, I'll still try it though, even if improvement is minimal, my child is so severely impaired that even a little help would make a big difference.

[thereishope]

You said your daughter was last diagnosed with a strep infection in Jan. Did you see ANY improvement from the antibiotics? At least a plateau in symptoms? Meaning it didn't worsen over a sapn of weeks and months? Have you gotten a negative strep test at some point after the strepw as believed to be killed?

 

As others will mention, you can always try a steroid and see if that helps improvement. It should bring down some inflammation. When my son was getting worse instead of better, he received a 5 day course of prednisone. It didn't solve all the problems, but by the end of the course of steroids, I saw him at least plataeu and being improvement.

 

To be honest, I think the average in "getting your child back" (meaning your child is more themself than not themself) averages around 2-3 months, at least with a first episode.

 

What are her symptoms/behavior changes?

[Suzan]

Also, we did the Celiac Disease blood test and everything came back negative except for eggs. This would indicate that we don't need to change her diet much. Has anyone else done this test and had normal results but still had any successful results when changing your child's diet or supplements?

 

Thanks so much!

 

Hi, we are new to all this too and have only started our antibiotic treatment 2 weeks ago. I did want to ask you about your celiac panel though. Which test as abnormal? Was it the anti-gladian IgG results? If so, this does mean gluten intolerant at the very least. Celiac tests have a very common false negative rate, especially in children. If it was the IgG test that was positive, I have a wonderful presentation that helped us regarding non-celiac gluten intolerance. I can send it to you if you are interested.

 

We are a gluten free household. My 6 yr old is the one who had the positive IgG test and she now can't eat even a speck of gluten without getting sick. She is much improved on this diet. My 7 yr old had negative test all around but I took her off gluten anyway and she was also much improved (her bad, itchy, rashy, eczema skin totally cleared up and her behavior got much better). I am allergic to wheat so I don't eat it either which makes things much easier.

 

Susan

[FallingApart]

Hi there,

 

We have been diagnosed with PANDAS without ever having been diagnosed with strep. All the cultures and the titers have been negative. We now have her blood in for I believe the IGG test. Her behavior changed on Dec 29, 2009 from a child with no sensory issues, fabulous sleeper, normal personality, no separation anxiety or anxiety of any kind, no out of the norm tantrums to us having a super anxious child who doesn't sleep, has 5 hour meltdowns and has severe SPD. This all happened almost literally overnight. The only symptom we don't overtly have is ticcing. We also have some OCD behaviors and reverting to more childlike behaviors. My daughter has lost most of her motor skills that would be available to a 3 yo and the list goes on and on. So, even though we don't have a positive test yet to confirm the PANDAS, we have almost every other symptom.

 

I was hopeful that the antibiotics would show an improvement in our daughter but am now thinking I might have been wrong to expect that. Should I expect an improvement in her when we start the steroids?

 

Thanks so much!

[greeneyes48072]

What I have learned from the other parents that have dealth with this and Diana in CA who has seen pretty much all case by case history, there are some kids who respond to the antibiotics and have resolution of symtpoms each time they take them, and then there are some who never find a reduction with antibiotics and only use it to keep infections away. We were the unlucky ones who saw zero improvement with the antibiotics. He has had symptoms since nov last year, with no stopping. There have been worse days than others, but never a symptom free day, except just a couple after the steroid burst. Also, just so you know, the steroid burst is mainly for diagnostic uses. It's effects are usually only temporary and short lived. Some kids have a longer reprieve than others, so it may be worth it to make sure its PANDAS, or just to give your child a temporary break, but it will most likely only be a short while. For us the effects started 5 days into the burst, and lasted less than a week once we were done with it...

[EAMom]

Hi fallingapart,

 

what antibiotic is your dd on and what dose?

 

Azith. (possibly other abs?) has immune modulating properties which can help PANDAS kids even if they are not infected with strep.

 

Also, Amoxicillin and Pen have a pretty high failure rate (with strep and PANDAS) so you may need to try something stronger if that is what your dd is on.

[FallingApart]

We started with Augmentin and then moved to Zithromax. After our ped talked with Dr. K and he wanted to check the IGG labs, we moved to Erythromycin. We have been on that for 4 1/2 days even though we are still waiting for the lab results.

[thereishope]

Did she have a vaccine or any virus/bacterial infection shortly prior to her behavior changes? Even a month prior?

 

A high amount of kids see improvement with a steroid. It bring the inflamation down on the basal ganglia.Did someone metion Ibruprofen. Sometimes you can see a slight improvement with that as well since it is a NSAID. When my son had a cold, his behaviors returned slightly, and Ibruprofen really helped.

 

As for improving her anxiety, have you adjusted her diet? In terms of watching how much high fructose corn syrup is in her diet, limiting how much food dye is in her diet, etc? I ask because that may make her hyper and, in turn, if she doesn't sleep, that will obviously add to everything and make it worse. One more question about her sleeping, does she snore a lot?

 

My one suggestion to you is to specifically related to the OCD. Really try not eliminate any if you can and work on it. That can become so ingrained in them that it ultimately can stay.

 

My son also had sensory problems, separation anxiety, OCD, and ADHD surface w/ PANDAS.

[dcmom]

Falling apart- I am so sorry for what you are going through. Your daughter sounds alot like mine. My dd (almost 6) started pandas behavoirs mid January. She worsened for 4 weeks, until we figured out what it was. Overnight, ocd, sensory, urination issues, temper tantrums, difficulty sleeping and food aversion. We tried cephalosporin and amoxicillin. These somewhat improved her, but not much. We changed her to zithromax. I was so hopeful for a big change. It took 20 days on full strength zithromax, and we finally had a breakthrough. At that pt we switched to a prophylactic dose. She continued to improve every day(with one small 4 day setback), and was back to about 98%!

 

We are now in a relapse, after a tonsillectimy

 

Give the zithromax time. I do think (unfortunately) time is part of the equation. I would try the steroid burst (we haven't yet) if you don't see improvement in a week or so, it can help "jumpstart" improvement.

 

There are many parents on the forum who haven't had a positive strep (or titer) test, as well. We haven't done it yet, but there is a new blood test by a Dr Cunningham that is more of a direct test for pandas. There is a thread on that, and if you email one of the parents, I am sure they will give you the info.

 

We did see a psychologist for a while, and although it didn't really solve anything, it was a great help and comfort to me. As a mother who has always felt confident in my parenting skills, these issues have completely thrown me. It was great to have someone to brainstorm with about how to approach her issues, and coax her. Ultimately, though, it was the zithromax that improved her.

[ShaesMom]

My dd7 was born with an anaphylatic allergy to dairy. She has been tested for celiac's three times. The first time at age 2 she came back positive on her Glidian Igg. the GI doc told us that it was not enough for a dx of Celiac and didn't recommend further testing. At the time we were stupid and just took her advice. Now I've been reading that this may mean she has an intolerance to gluten even though she does not have full blown celiacs. We had her tested last winter and again this winter. Both times her Glidian Igg came back normal. So, I'm now more confused than ever. I'm still seriously thinking about removing all gluten from her diet but because she has had food avoidance issues with her Pandas, I'm hesitate to restrict her diet even further right now.

 

Sam

[peglem]

My dd7 was born with an anaphylatic allergy to dairy. She has been tested for celiac's three times. The first time at age 2 she came back positive on her Glidian Igg. the GI doc told us that it was not enough for a dx of Celiac and didn't recommend further testing. At the time we were stupid and just took her advice. Now I've been reading that this may mean she has an intolerance to gluten even though she does not have full blown celiacs. We had her tested last winter and again this winter. Both times her Glidian Igg came back normal. So, I'm now more confused than ever. I'm still seriously thinking about removing all gluten from her diet but because she has had food avoidance issues with her Pandas, I'm hesitate to restrict her diet even further right now.

 

Sam

 

I read somewhere, (sorry don't remember where) that low IgA can cause false negatives on celiacs test.

[Suzan]

My dd7 was born with an anaphylatic allergy to dairy. She has been tested for celiac's three times. The first time at age 2 she came back positive on her Glidian Igg. the GI doc told us that it was not enough for a dx of Celiac and didn't recommend further testing. At the time we were stupid and just took her advice. Now I've been reading that this may mean she has an intolerance to gluten even though she does not have full blown celiacs. We had her tested last winter and again this winter. Both times her Glidian Igg came back normal. So, I'm now more confused than ever. I'm still seriously thinking about removing all gluten from her diet but because she has had food avoidance issues with her Pandas, I'm hesitate to restrict her diet even further right now.

 

Sam

 

I read somewhere, (sorry don't remember where) that low IgA can cause false negatives on celiacs test.

 

Sam, our gluten free experience has been amazing. It was hard at first but now it's second nature and we all feel better for it! It is true, low IgA does mess with the results. My dd had a low normal IgA result and I've always wondered if it was low enough to give us a false negative. Even without a low IgA, celiac tests are very commonly false negative especially in children.

 

Susan

[ShaesMom]

Sam, our gluten free experience has been amazing. It was hard at first but now it's second nature and we all feel better for it! It is true, low IgA does mess with the results. My dd had a low normal IgA result and I've always wondered if it was low enough to give us a false negative. Even without a low IgA, celiac tests are very commonly false negative especially in children.

 

Susan

 

Are you the same Susan I sent a personal email to yesterday?

 

I was dx with fibromyalgia a year ago and I have read that wheat & sugar are big contributors to my symptoms. I have really tried to cut back on bread the last few weeks but it's not easy. I have tried replacing it with lots of fruit and veges but I'm still hungry. Maybe it has something to do with all the stress from everything we are going through with Shae.

 

I take a lot of things on faith and for some reason I have never been able to shake the thought that she has problem with gluten. I just need to act on it. you may have to share your tips with me someday.

 

Sam