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Do PANDAS kids ever get treated with Autiimmune Drugs ?

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I recently traveled with a friend of mine who has RA. She tlaked about her symptoms and told me about her frequent Embrel shots that control them. All i kept thinking was "Wow I wish I could cure my ds9 's tics with a shot that a give at home" !

 

We have gone the abx and IVIG route like so many here. Has any child gotten treated with drugs that control other autoimmune processes ?

 

Thanks for your input !

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I have been thinking about this lately, and am pursuing this line of thought with a lupus doc. He seems to think there are meds which could help avoid major flareups.

 

Of course, most autoimmune drugs have a heavy list of side effects or risks- so I am not sure we will go this route- but I do think our kids should have a doc with major autoimmune experience on their case. If pandas is as defined- an autoimmune disorder- we shouldn't have to completely reinvent the wheel- we should be learning from the treatment of these other illnesses.

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Radical nutrition changes should be tried.

Paleo diet is severe for autoimmune disorders. No eggs, tomatoes, eggplant, potatoes, peppers, nuts.

Then of course no legumes, grains and dairy.

 

That leaves you with coconut milk products, meat, fruit, veggies.

 

No, my kids haven't tried it yet either. I'm able to do the diet but I can have eggs, etc because I don't have an autoimmune disorder.

 

More later.

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I dunno much about these drugs except for the fact that we have close family friends and the son (14yrs) has RA. I do know that the drugs he takes makes him catch every possible virus that floats through his environment. He's always got a cold. Also, I've read on-line that IVIG is not recommneded for RA because in studies it only made very short term (if any) impact on this disease. He gets a shot in his stomache every week (forget name of med...I know there are different types of RA in peds, and different meds) I think methltrexate.

 

I think our kids have very different mechanisms of autoimmune issues. But, I know very little about he whole B-cell, T- cell, helper cell. here is short Q And A I jsut found on methltrexate when I was trying to rememebr the name of the drug he was on - it has some info on how there druf works compared to others. It maily focuses on tissue damage.

 

 

Also - allergy is another "autoimmne" things - what about allergy meds - I don't think these work for our kids (I'm pretty sure a bunch of pandas kids have allergies). And I've never seen anyone giving their kids benedryl (or other) in an exacerbation. I've never tried.

 

 

http://www.upi.com/Health_News/2006/12/29/Street-Pulse-New-way-to-fight-RA-Rigel/UPI-35521167368715/

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I recently traveled with a friend of mine who has RA. She tlaked about her symptoms and told me about her frequent Embrel shots that control them. All i kept thinking was "Wow I wish I could cure my ds9 's tics with a shot that a give at home" !

 

We have gone the abx and IVIG route like so many here. Has any child gotten treated with drugs that control other autoimmune processes ?

 

Thanks for your input !

 

 

I know this isn't exactly what you're talking about but we're about to start LDN.....it's an immune modulator. It helped my grandmother with Parkinson's tremendously. I have heard of several people using it for PANDAS with good results.

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I have RA. In order to take the injectible drugs for RA, a patient must have had trials on the less expensive, older, milder, less side effect drugs and found them to be ineffective. My insurance requires this and most rheumotologists won't start you out right away on the injectibles.

 

The injectibles, like Enbrel, have some serious potential side effects. They lower your immunity, so that you more easily catch all sorts of virus and bacteria. You should not be around anyone who has had a live virus vax while on them. They also have an increased risk of lymphoma.

 

Cindy

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I take Humira for Ankylosing Spondylitis (a genetic form of arthritis that can present similarly to RA but also severely affects the back, neck and hips) I didn't have to go through the trials of other drugs that nickelmama described, I was on my second round (mobic) when they found the AS gene/connection - so I got to skip right to the big dogs (lucky me!)

 

I've spoken with my Rheumy about my son's PANDAS, and asked even if the genetic marker I carry taht causes my AS could be possibly related (she doesn't think so, but there was a study somewhere linking increased strep infections in folks with RA).

 

The way I understand how AS works, and the Humira treats it is this: My antibodies begin attacking the connective tissue in my joints (causing the inflamation). Antiinflamatories help with the pain and symptoms, but without arresting the immune response, degenerative damage will continue. The Humira (and I blieve most of the other RA injectibles are similar) is an immune suppressant (it was originally developed as some sort of cancer drug). It basically shuts down/slows down the immune systems response - not just the problematic response, but ALL of them.

 

My kids haven't been able to have any live vaccines since I started it (not that I would allow that with PANDAS now anyway). And if I catch even a slight cold - I'm on my butt for weeks where others would be over it in a day or so. Knowing how easily, and severely I get sick on these types of drugs I would be absolutely TERRIFIED to give them to my son -who already has a very sensitive reaction to just exposure to strep, let alone when he actually catches it!

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I recently traveled with a friend of mine who has RA. She tlaked about her symptoms and told me about her frequent Embrel shots that control them. All i kept thinking was "Wow I wish I could cure my ds9 's tics with a shot that a give at home" !

 

We have gone the abx and IVIG route like so many here. Has any child gotten treated with drugs that control other autoimmune processes ?

 

Thanks for your input !

 

 

The immunosuppressants are hardcore. But, I have wondered about the antimalarial drug, hydroxychloroquine (also has side effects)? It has helped me for lupus symptoms.

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I take hydroxychloroquine (Plaquenil) for RA. I've been taking it for 13 years now. No side effects for me. Milder than the other RA drugs. The drawback is its not very effective for those w/ more than a mild case of RA. Its a thought. I have an appt to see my rheumatologist next month. I plan to ask her some things. My DS was diagnosed w/ PANDAS after my last appt.

 

Cindy

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My boys are treated with spironolactone and LDN (low dose naltrexone) which have immune-modulating properties. I think this is not a standard practice amongst the "pandas specialists" but our biomed docs got us involved with this. It has helped with the day to day flares, but they still flare with they get strep. Not sure if anything, even IVIG, is a match for strep.

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I have a daughter who has a neuropsychiatric autoimmune disease called Opsoclonus Myoclonus Syndrome that is similar in many ways to PANDAS. I stumbled across this topic and thought I could share the treatments that we use to keep her illness in check.We worked with neurologists for many years but have recently switched to a rheumatologist and have had much better luck treating her disease. I am not a doctor. I have no idea if any of these drugs can be used to treat PANDAS, but I do know that both diseases are autoimmune, and effect the brain in very similar ways. OMS can be caused by a tumor (neuroblastoma), virus, strep, lime disease, or Epstein-Barr. It not only effects emotion, and cognitive function but also both gross and fine motor skills.

B and T cell levels largly determine which treatment will be used. A blood draw for a "B+T cell subset" lab will determine levels.

IvIG: currently using 2g/kg every 3 weeks.

Steroids: we used ACTH for five years as an immunosuppressant. Steroids were initially very helpful in terms of getting her disease in check. Side effects are aweful and tapering was very difficult. Prednisone is very similar and often used instead of ACTH.

Cytoxan: Chemotherapy used to decrease or eliminate defective T cell population. Risks are low to moderate. Has induced remission in some kids with OMS, but not mine.

Rituxan: Chemotherapy used to decrease/eliminate B cell population. Can also "reset" the immune system and make autoimmunity disappear. This has worked well for my daughter, though we have had to use it 3 times in a five year span. Risks and side effects are low, but scary.

Cellcept: an immunosuppresant used in transplant patients to prevent organ rejection. It also works for people with autoimmune disease. Side effects are minimal after the body adjusts to it. We have had great success with this drug and it has become an essential part of keeping my daughter's autoimmunity in check.

That's pretty much it. Hope that this can give you some ideas and maybe give your docs some ideas of how else to treat.

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Rjayne

 

I am sorry about your daughter :(

 

thank you for sharing. I do think finding an autoimmune doc to help manage pandas is important, and I am working on it. I did meet with an adult autoimmune doc who suggested that low dose cellcept would be something to consider. Can you discuss (from a mom's point of view) the risks or side effects, and the effectiveness?

Thanks!

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rjayne,

 

Thank you so much for sharing what you have found helpful. I am going to take your information to our doctor. We have found IVIG to be helpful, but have needed to repeat it a few times and I am concerned about potentially needing it repetitively over the long term.

 

Have you been told of any short or long term risks associated with repetitive high dose IVIG?

 

dcmom - please keep us posted on your progress with the autoimmune doc. Was the dr initially familiar with pandas or did you need to educate him/her?

 

I saw a local rheumatologist at one point who was not helpful. Does anyone know of rheumatologists who are pandas friendly?

 

Thanks.

Edited by Debbie1

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