Long Term PANS and IVIG treatment

[bhenry]

My dd 14 has had PANS since age 6. Was misdiagnosed until age 11 when she started antibiotic therapy which we saw a great improvement. She continues to have flares with every illness, even when she is around someone who is sick. Prednisone works great for those flares, but symptoms return when she is triggered again. Last winter she had 5 prednisone bursts.We decided to seek out IVIG for her but am getting conflicting veiws as to whether IVIG will work to stop the autoimmune process. Has anyone had success with HD long term ( 1X month for 6 months) IVIG to stop the autoimmune process? I spoke to a different doctor who said IVIG would be useless since she has had it for so long. She is perfectly healthy in between flares. We have even considered plasma exchange. The winter months are for her. Has anyone had sucess with this after their child has been ill for so long?

[peglem]

We do HD IVIG every 3 weeks (for 3 years now!)- it helps to keep her from getting sick=more stable. She still does have flares, but less often/less severe and the next round of IVIG pulls her out of it. We've recently been treating her for MTHFR mutations, which has really helped and I'm hoping to eventually get her off IVIG.

[qannie47]

If you can afford it I say go for it. Pandas is not understood well enough by ANYONE to say that IVIG would be ineffective.

[pr40]

see if dr K would respond to your question. he sometimes answers his e-mails, esp when they are very precise as your question is.

 

thinking seems to be that if the immune system is strong, IVIG will not help. If, on the other hand, titers are high, that would be a reason to believe that IVIG would be helpful.

 

we try with total attack: abx, methylation supplements, anti-inflammatories, restricted diet, lots of outside and exercise, some therapy. this because our kids immune systems seem to be fine.

[mdmom]

I will share my DS16's history and maybe you will find something useful in here.

 

Dx with PANDAS at age 13 but symptomatic from age 4. We consulted 4 doctors well-versed in PANDAS and all of them independently told me that my son would need IVIG to recover because his case was so chronic. However, our insurance company would not pay and we could not afford the treatment. The 5th doc we consulted is an LLMD (lyme-literate medical doctor) and this doc dug deeper and found infections beyond strep - Lyme, Babesia, Mycoplasma, Bartonella, viruses. Some of these infections were diagnosed clinically (labs showed negative on many infection panels) but I trusted the doc to treat based on clinical symptoms. It was 2.5 yrs ago that we started treating aggressively for infections. We also addressed diet (low sugar, gluten and casein free, organic), methylation, ERP therapy at Rothman, lots of supplements including probiotics. My son has slowly made progress. This doc also found an immune deficiency - his total IGG levels are low with 2 out of 4 subclasses of IGG being low.

 

While we treated infections, I appealed our insurance company multiple times to get IVIG covered for my son's immune deficiency dx. They eventually approved it and he started on monthly IVIG this past January.

 

After the 5th IVIG (1.7g/kg), he tested positive for some of the suspected infections and he started responding with more physical symptoms - seems physically sicker and psychiatrically better. The IVIG treatments seem to be giving his immune system a fighting chance and I believe he is finally on his way to clearing the deep-seated infections that were lingering for so long.

 

Every child's story is different. We are one of the unfortunate cases where my son went very long without being properly diagnosed.

 

Even though we had to wait 2 years from first PANDAS diagnosis to first IVIG treatment, I have not regrets. Knocking down the infection load was a key part of my son's treatment as well as treating other issues mentioned above.

 

Have you completely addressed infections? tested immune function?

[bhenry]

Yes, she has been tested for all viruses and has been on antibiotics for three years for infections. Her Igg levels are low and her responce to viruses are strange because she doesnt show physical symptoms of illnesses but instead has psychiatric symptoms and a low body temperature. Her Dr said she has clear markers for autoimmune disease and that IVIG every two weeks for 20 minimum would stop the autoimmune response and put it in remission. We have been working towards IVIG for a long time with her Dr always stalling, so we finally went to an out of state Dr specializing in autoimmune encephilitis and believes she can successfully be treated. Then a family member contacted a doctor who treats PANDAS at New York prespiterian Hosp who told her it wouldnt work and was very dangerous and doesnt work if it has been long term. So im dealing with a medling sister who is probably trying to help, but isnt in the least. My motherly gut instinct is to go with the IVIG. My dd is so sick of living with this it sems worth the risk.

[PowPow]

My daughter also has markers for autoimmune disease and just passed her 5 year anniversary of severe PANS onset. I am happy to report that after a few consistently spaced IVIG infusions and cellcept (has this been considered with the autoimmune encephalitis diagnosis? ) she is really doing well. She is scheduled for monthly ivig for at least 6 months. She has had infusion s before but never consistent ly. Also, plasmapheresis helped immensely, but just did not hold.

What markers does your child have? Mine is 15 years old with high sed rate, post RNP antibodies and cardiolipin antibodies. This is all consistent with autoimmune encephalitis, which is the diagnosis our out of state docs gave her! I think you are on the right track, bhenry!!

Edited September 16, 2013 by PowPow

[peglem]

Yes, she has been tested for all viruses and has been on antibiotics for three years for infections. Her Igg levels are low and her responce to viruses are strange because she doesnt show physical symptoms of illnesses but instead has psychiatric symptoms and a low body temperature.

Yes, that's like my daughter, but it wasn't always that way-she got sick a lot when she was younger and showed real symptoms. We are also using a low dose of methotrexate once a week to keep flares in check.

[rowingmom]

Yes, she has been tested for all viruses and has been on antibiotics for three years for infections.

 

My motherly gut instinct is to go with the IVIG. My dd is so sick of living with this it sems worth the risk.

Edited September 16, 2013 by rowingmom

[rowingmom]

Sorry, I messed that reply up.

 

When you say tested for all viruses, does that also include other bacterial infections (esp bartonella)? Which infections were you treating with antibiotics?

 

I have found that my gut instinct is a wonderful thing. You sound well versed with your daughter's situation, probably more so than any doctor or sister (I have one of those too ).

[Hrosenkrantz]

MDmom -- i haad a question for you but your in box is full, fyi

[bhenry]

She gets striggered even by cold viruses, but flu'e really affect her and she is really suseptible to mycoplasa.

[mdmom]

Hrosenkrantz,

 

I cleaned out my inbox.

 

[qannie47]

I am lucky to have a resource at Childrens Memorial in Chicago. She is high up...very cautious, and probably one of the smartest doc's I have ever met. When I asked her about IVIG and risk, she said low risk. She said go for it, for my ds. If she says it is low risk, it is low risk.

[croatianmum]

dear bhenry,

 

we are in a very simmilyr situation. (I'm just gonna write a new post with some more questions here)..

My son is 13 now. he had symptoms since he was 6.Missdiagnosed untill 11,5. he recived 2 IVIG's allready (high dose, 2 mg per kg), he's on abx for 1,5 year now..and still no relief.

Before our first IVIG But, we had an appointment with dr. K, and he told us that no matter how long a child is having the symptoms,one month or one year or even years, if it's pandas IVIG will be helpful.

so, Your chances are pretty good I if I were You I would definitly give it a try

best of luck