Do PANDAS kids ever get treated with Autiimmune Drugs ?

[rjayne]

Oh, where to begin. Side effects. Every drug as I'm sure you all know has it's side effects and risks. My daughter's quality of life has been so severely affected over the past five years that the risks involved in all of the drugs I listed above were outweighed by the potential benefits.

Here are the side effects that my daughter experienced....

Steroids: rapid weight gain, her growth was stunted (but she has caught up since steroids were discontinued), precocious puberty, extreme agitation/steroid induced psychosis, and dependency. It took five years to taper off the stuff without inducing relapse.

Cytoxan: we did 1 infusion per month for 6 months at a low dose. There were no noticeable side effects (although hair loss and infertility are frequently issues), there was also no noticeable benefit.

Rituxan: many positive changes have come with each course of Rituxan. When we do it, we do one infusion 375mg per week for four weeks. The main side effect is death due to anaphylaxis upon the first infusion. This risk decreases with each subsequent infusion. I know, so scary. After rituxan infusions my daughter's oms related behaviors go away. Her motor skills improve. Her cognitive function improves. She is a totally different kid.

Ivig: We have been doing IvIG since my daughter was diagnosed in the fall of 2005. Until the fall of this year she had infusions every four weeks at a dose of 1g/kg. Due to relapse this summer, the dose was increased to 2g/kg every three weeks. Side effects have generally been migraine headaches for a couple of days post infusion. As of recently, the IvIG has caused an igA deficiency and we are now switching from Gammunex to Gammaguard. Risks with IvIG are minimal as I understand. Ivig is a blood product so there is always a small chance of contracting a blood born illness.

Cellcept: It took close to 6 months for cellcept to reach thereputic levels and start doing it's job. My daughter had two weeks of gi issues while her body adjusted. She gets 2 doses of 600mg 12 hours apart. It's a pain to give because it has to be given one hour before or two hours after eating. But it has been soooooo worth it.

Psych meds: My daughter has been on; Prozac, abilify, clonidine, buspar, lexapro, trileptal, and risperdal. All have made her symptoms of opposition, ocd, and extreme anxiety worse. imunosupressants are the only thing that have made a noticeable impact on these behaviors.

I hope this answers your questions. Feel free to email me with any more.

Best of luck to you all.

Rebecca

[Stephanie2]

Can you describe the steroid induced psychosis? I think that's what we have been dealing with here, so much so that I have had to start risperdal for the first time. Taper ends in 6 days, had to speed up the taper due to psychosis.

[Stephanie2]

After reading this thread, I would think that most of us would not want to use immunosupressants as a permanent fix for pandas. But I wonder if maybe they should be used as a "tool" in crisis moments, ie while lining up IVIG or when the family is close to "cracking" (which can be a dangerous situatioin in and of itself, we have been there multiple times, ya know when everything starts to spiral and you can't seem to pull anyone in the family together? or is that just us)

[rjayne]

I can only speak from experience in dealing with oms, I have no experience in dealing w/ pandas. In oms, immunosuppressants are used to achieve remission and then if all goes well, immunosuppressants are weaned in an attempt to "reset" the immune system. With oms it is thought that if a child can be off of immunosuppressants without any oms symptoms for two years, they are considered "disease free". I believe that this is the methos used for other autoimmune diseases (lupus, RA) as well. There really isn't much info out there about adults still battling oms who became sick as children.

We are just now achieving remission after 5 years of trying to get oms under control.

Hope this helps.

[rjayne]

Steroid psychosis for my daughter mainly consisted of her screaming and raging for most of the time she was awake. Everything and anything made her furious. Giving her a bagel instead of a bowl of cereal, dressing her in the "wrong" clothing....

At the time I found it helpful to google "steroid psychosis". I had found a case study of a few college students admitted to the ER because of steroid induced psychosis and read the descriptions of their behavior.

In the end, my daughter's reaction to steroids has been so bad that we avoid it like any drug one would have an allergy to.

One thing I forgot to include in one of my entries about treatments is that cellcept is considered a "steroid sparer". Cellcept and other anti-rejection drugs are also used to get people off of steroids if they become intolerable, while still supressing the immune system.

Hope this is helpful!

Rebecca

[nevergiveup]

Rebecca, Thx for a lot of good info. My dd is treated at a BMT center, they have treated oms at this center also. You are so kind to come on line here and tell us about these drugs. I know rituxan has been mentioned to me, only as a last resort and only if my dd is officially diagnosed with lupus, right now she has pandas and other immune problems that appear to be lupus. You and ur dd have been through so much and I am glad u r seeing some results finally. Thx again for coming on here and sharing. Autoimmune drugs for pandas seems like the next rational step of investigation. Lots of hope!

[rockytop]

Qur LLMD (a rhuematologist) and PANDAS doc both expresed interest in Enbrel for my child who had lyme and babesia, when after treatment for those- she was still very sick. (psych sick- physical sickness was gone)

It was never done, maybe for lots of reasons- but I suppose the biggest is that my child generally will note even go to the doctors. She has not seen the LLMD in almost a year due to her uncooperativeness.

My sister with AS took Enbrel and now Humira. My mom took Remicade for several years for Crohn's. These drugs do have major potential for serious side effects- but in our case- if it was offered and was successful- I have a clear risk vs benefit case here. I actually will be discussing this with our PANDAS doc when we go back in a few weeks. If the recent pex turns out to be successful for my other PANDAS child (not the one who had lyme)I may ask about these to maintain the "switched off" immune response.

My mother just had a colonoscopy and her doctor said that her Crohn's was in remission- which is not something that has ever been seen on her before. Definitely due to Remicade (and she stopped it almost 2 years ago!)

so I just wanted to say that some docs ARE thinking about this.