NIH PANDAS study

[_Misty_]

I've been on the phone with NIH quite a bit the last 2 days discussing the current PANDAS study using IVIG. I'm not sure what to do. DD7 is in her first flare after her initial episode last May. We don't know yet if she'll be accepted for the study, but it seems promising. My thought is if the IVIG isn't a permanent fix, is it worth it? Her current flare is not as severe as the first episode, but it is bad enough that we don't want her to live this way. Is there any hope that having an IVIG within the first year of PANDAS would be more beneficial than waiting and trying other things for a while? We could start her on an SSRI right away if we don't participate in the study. (She's been on antibiotics/probiotics/fish oil/inositol from the first few weeks of her first episode and was at 95-100% for a few months).

[ptcgirl]

Absolutely one Ivig can make a huge difference. After the first one there was an enormous change in my dd. It is like hitting a reset button. Keeping her from getting sick again is the real challenge. The abx should help with that. Was she on the abx when she started the second flare

[_Misty_]

Yes. She was still on antibiotics, but had been at a reduced dose for a few weeks and was exposed to someone with strep.

She didn't get it, but that may have triggered this flare. Our main concern about the study is that she would have to have two spinal taps.

[dcmom]

Hey Misty-

 

tough decision. My kids haven't had IVIG- so I cannot comment personally. However you should expect that IVIG is not a cure for pandas, but rather (hopefully) for the current episode. IMHO the best route is to treat with the least invasive treatment first- so something like abx and advil, followed by steroids, then IVIG or PEX. However- I think the steroids would make you ineligible- so it is a tough choice.

 

SSRI is not an easy decision either. First of all pandas kids need to start at a really, really low dose and need to titer up very slowly. Maybe one increase every 3 weeks? Most non pandas docs don't understand this- so be careful- get some advice on dosing here or look for a paper by Dr Tanya Murphy, USF. This means it will take months to get to full dose, and then more time to judge effectiveness. VERY hard to do with a disorder that changes weekly. I am NOT against SSRI's, I just don't think that for many pandas kids they make sense. Most of our kids have a disorder that is triggered by illness. They have months of being totally fine, flare ups, and remissions. If you put her on an SSRI- how will you really know it is working. I hate the thought of a kid getting stuck on the meds if they really don't need them.

[Dedee]

You're asking for opinions right? If it were me, I would do it. This is my opinion based on the information I have gathered from others who have been through the study and from discussions I have had from other specialists when my daughter first got sick. We tried to get my daughter in the study but she was turned down. My concern would be exactly what you are saying as well. I would worry about having to have the spinal tap. But I have heard from others that they are so experienced there that this is not as traumatic as we (parents) expect it to be. I believe it's much harder for the parent than the child. As for the SSRI, (again, JMHO), I would rather hold off on that if you have the opportunity for the IVIG. You will have access to valuable information and access top notch specialist that you would not otherwise be able to in other situations. These are the things that I would consider if I were in your shoes. I know it is a very difficult decision to make. You want to do what is right for your child and in the end your will. Either way you go, you know your child best and you will make the right decision. Just trust your instincts, make your decision and don't look back. Best of luck.

 

Dedee

[_Misty_]

That's how we feel about the SSRIs. From the very beginning every doctor has pushed them at us and we've refused. Our pediatric neurologist has yet to admit that this is PANDAS...we see her again Monday and I'm curious how she'll respond to the NIH researcher (MD) saying it sounds like classic PANDAS to him. I questioned her about a Zoloft dose and she said 25mg to start - which I think is way too high. Our pediatrician is understanding about our hesitation, at least. We told him it's just a band-aid for OCD and not a cure for an autoimmune problem.

 

As far as the IVIG, it is very hard to put your incredibly anxious child through all that, especially if it may not work or will only work temporarily. Now, she's not as incredibly severe as the first time. If she was as out of control as before it would be an easier decision to make. They won't force treatment, either, so if we go out there and dd says no she's out of the study. Now, she's 7...she says no to every medical thing that may hurt. I would be very nervous to have a spinal tap - how can a 7 yr old with an anxiety disorder cope with that? It's a lot of hoops to jump through to get out there and she won't let them do anything.

[mpsloan]

I just had interview with NIH few weeks ago, Dr. L, thought he would be a good candidate but we were not approved for the study based on onset of syptoms was prior to 6 months ago. The main reason I wanted to get son in study was because of all the tests he would have done and the care he would recieve, not to mention all would be at no charge.

 

Dr. L. wants ds6 to have IVIG, starting the battle now with insurance company. In the mean time, I just took son to Dr. Beals he is a LLMD in MD, I liked him . I want to make sure we don't have any underlying conditions. Dr. L put son on 6 days of zithromax, then LLMD will start him on long term antibiotic of Amoxicillin 250 mg one in am and two in pm + probiotics.

 

I wish we could have gotten into the study, however, it is such a personal decicion on what is right for your child. I am new to this forum and have found it very helpful in looking into several different areas and what has worked for different folks. We will most likely still go ahead with IVIG out of pocket but I am glad to try the antibiotics first and see if we see any inprovement.

 

 

As far as SSRI, we first tried my son almost 7 on Lexapro- it "activated" him, he was worse, switched to Zoloft 12.5 mg then tried to bump it up to 25mg and it "activated him as well"

dropped it back to 12.5 o.k, tried once more to increase it to 25 and he was off the walls. Point being, start slow - 25mg may be to strong if you decide to use it see if they recomend less first, every kid is different and reacts different to meds, that was just how it was with my little guy.

Edited February 8, 2013 by mpsloan

[_Misty_]

Deedee- I was posting at the same time as you and didn't see your post earlier. You've made some good points and given my and my hubby some things to think about.

 

mpsloan-Interesting that you were turned down because of onset. That may be the same for us. I spoke with Dr. Grant and he felt like we might be eligible. I guess it's up to the whole panel. How long did you stay at 12.5 mg of zoloft? I wonder if staying at that dose could be beneficial.

[T_Mom]

Misty, my personal opinion would be to go and at least see if he qualifies and get the testing done.

It is free, it may tell you something. If neuro-psych issues are due to a CNS infection or inflammation that is important to know.

 

 

Perhaps if you get to speak with the NIH group it would help clarify your decision to ask them some questions --

 

1. What do they think re: "the possibility that one IVIG would be enough?" Can they estimate the number of kids for whom they believe one will be enough?...for 40%, 50% of the kids? 90% ?

 

2. Do they believe that early treatment will prove to be more effective then treatment after more than one, two, or three episodes?

 

3. others?

[kimballot]

Misty -

 

I want to put the word "temporary" into perspective. My son has had PANS symptoms from a young age. He had his tonsils removed at age 7 in the midst of a horrific exacerbation - before we knew enough to call this PANDAS or PITAND or PANS. That calmed things down for him, and put a "temporary" halt to his PANS. He continued to have symptoms once or twice a year when he had sinus infections, and those symptoms were manageable with antibiotics and CBT and lasted for 5 years, until he contracted several infections while harboring a sinus cyst. That was 5 years of near-typical development, tae kwon do belt tests, spelling tests, birthday parties, sleeping at night, summer sleep-away camp, wearing clothes without pain, and going to the skate park with friends. Had we known about PANS we would have been much more careful when he first started showing signs of another infection and may not be in the situation we are in now.

 

I am, admittedly, biased as my son is now immune deficient and gets IVIG every 6 weeks or so, so I am not as frightened of IVIG as I once was. My son clearly is not at all in the same category as your daughter. If I could find a way to get 5 years of relative remission again I would do it. Even if I could get 1 year of remission, I would do it. I truly believe the key to this is getting treatment early on.

[Kimiejoe]

Also consider that the NIH study does a lot if tests. This provides a baseline for your DD for years to come. And if something else is going on you will know with the blood work and tests. The spinal tap is scary, even for adults. NIH can give your child a calming Rx before to help with her anxiety.

 

We faced the very same issues: do we or don't we? In the end we were glad we went through with it for several reasons. The care at NIH is wonderful. You really feel like these folks understand what you're going through instead of looking at you like you're crazy. The IVIG itself can be helpful and that's what you're trying to do - help your child.

[mpsloan]

I've been on the phone with NIH quite a bit the last 2 days discussing the current PANDAS study using IVIG. I'm not sure what to do. DD7 is in her first flare after her initial episode last May. We don't know yet if she'll be accepted for the study, but it seems promising. My thought is if the IVIG isn't a permanent fix, is it worth it? Her current flare is not as severe as the first episode, but it is bad enough that we don't want her to live this way. Is there any hope that having an IVIG within the first year of PANDAS would be more beneficial than waiting and trying other things for a while? We could start her on an SSRI right away if we don't participate in the study. (She's been on antibiotics/probiotics/fish oil/inositol from the first few weeks of her first episode and was at 95-100% for a few months).

 

Just wondering if you were accepted into the NIMH program?

I also just realized that you asked me about the zoloft dose. We have stayed at the 12.5 for almost 6 months I guess, when we have tried to increase it he was worse. New Ped. wanted us to try Ativan . I tried the ativan and it REALLY activated him. I put him back on the 12.5 of Zoloft and he was better. He has only been on ABX about 3 weeks now, as well as high vit. d3 (5000ui), he is more symtomatic but I read that can be a "herx" effect from the lyme ? Too early to tell.

[michiganpandas]

I am at work so only read some replies...but, just wanted to mention that w had activation with zoloft at 20mg...and again when they upped it a little it got worse....

but, I decreased it slowly on my own decision based on what I read here....she did better with the decrease

 

HOWEVER, when we got to the point where she was completely off she sadly got worse again, so I put her back up drop by drop and she actually was BEST at only 4 small drops....there is not going to be any doctor or neurologist that will ever start you this low and all will say it's a placebo (it's not because I put it in sierra mist (which is required to mix) and my daughter has never been told if I have gone up or down

 

So, my opinion to anyone getting on zoloft or any psych drug is to allow the prescription to be written for any amount (the higher the better because then you get more of the prescription)...but, then only give a VERY small amount....you can tell them later for the follow up that you started lower and if it worked

 

4 drops is only .3 ml......it's probably about 4mg

 

As for the study....I had the knowledge of it and I declined at the time when we were in that 6 month period for the same reason you mentioned...spinal tap and also my daughter was SOOOOOO bad with anxiety that we could barely leave the house let alone travel or get all of those tests down

 

BUT, I'll admit...I could kick myself for not doing it....I think it would have helped a lot and it would have been beyond nice to have doctors who are knowledgeable about all of this!

good luck in your decision!

[JPdad]

As someone above mentioned, as soon as you go the steroids rout one time, you are ineligible for this study.

 

Also, I seem to recall from my conversations with them that they require you to stay there for a number of days and come back for repeat IVIG numerous times. Even though there wasn't an expense involved with it, the whole thing seemed like a massive time commitment to me that would have been impossible to meet with 2 working parents in the house.

[tpotter]

My opinion...go for it if they approve you. I had the exact same issue come up about 3 years ago...we had just found out that we were dealing with lyme and co-infections when 1 year worth of fighting insurance company resulted in approval. OK...I knew I had to get the infections dealt with, but I didn't know if I wanted to turn down IVIG at that point.

 

 

Fast forward. I agree that IVIG and PEX can help reset and calm things down tremendously. That being said, unless you find out what all the infections are (and I truly no longer believe there is just one infection or trigger for it to become PANS), the problems will not completely go away.

 

So, if it was me...I would definitely participate in the study, AND I would also find a good LLMD and immunologist to look into what other infections, environmental and/or metabolic disorders exist. LLMD's typically look at more than just lyme and co-infections. Ours, for instance, treats also for mold, which we found out we had been exposed to, heavy metals, etc, because they affect the lyme. Also LLMD's can look past the inaccurate test that may or may not exist. If I could do it all over again with what I know now...I would do it all...and that also goes for dealing with the immune system.

 

PM me, and I can give you more information about all that.

 

For the record, we have done PEX and IVIG, abx, vitamins, homeopathy, acupuncture, ART, and chiropractics. For us...it was all needed.