IVIG made symptoms worse…will PEX help?

[KLJ]

My ds11 was diagnosed with PANDAS last december by dr.L. He has had anxiety and learning disabilities since 3. And when we started SSRI (at 5) we saw ADHD. We did IVIG this november when he started hurting himself in school (academics and social situations-a trigger). Since IVIG he is not able to go to school and its very hard for him to leave the house (raging, crying, getting "stuck"). Dr. L recommends PEX (she did not order cunningham test at time of diagnosis, his Lyme is negative, but high mycoplasma). We will be paying out of pocket ($27,000). Does anyone have a similar story where PEX worked (alleviated the most egregious behaviors)?

[Chemar]

Hi and welcome

I am just bumping your first post up so others can reply.

 

Hope you find the info you seek here.

[beeskneesmommy]

I do not have any advice regarding treatment, but I wanted to let you know that Dr. Josephine Elia at Dupont Nemours Children's in DE is one of the pioneers of PEX for PANS. Given that she is in a hospital setting, you may have luck with insurance. Perhaps you could ask Dr. L to communicate with her on your behalf. It is worth a shot. Good luck!

[anonymous0121]

my 13 year old son with ASD/lyme/PANS/tourettes/tics/severe severe rages is getting worse with IVIG also. we just finished third HD IVIG and I have to say the last three months have been the worst for him, it is heartbreaking and we don't know what to do either. He is absolutely miserable in pain, wondering if it is causing a immune suppression and making the chronic infections make his dysautonomia worse , was hoping it would turn around the autoimmune issue (may have cause he actually got cold symptoms a few weeks ago when my husband brought home a cold virus, he hasn't had fever or cold symptoms since 2007)...

[PowPow]

PEX did help my very sick daughter, 3-4 months after her first IVIG seemed to do nothing. However, the relief it offered lasted only a few months. She repeated pex 3-4 months after the first pex.

Unless your child has lab "proof" (I know it roils people when I write about "proof") of an autoimmune process- of which the Cunningham test is one of many, many possibilites- I would not pay the $27K.

However, perhaps, $27 K is very doable for you. if it , go for it.

 

As far as "proof"- sed rate, ANA, antibodies, SOMETHING showing this is an autoimmune process- if it is an infection, pex is not going to help. If it is something else, pex will not help.

I am not negative on PEX at all-- I just know too many people who were not helped by it at all.

 

Both of my daughters had it (and one had it twice). it was restorative for one child and a step in the right direction for another. We had highly positive Cunningham Tests, positive Sed Rate and positive ANA (anti-nuclear antibodies) . We had some clues (including a very strong positive reaction to high dose oral steroids) pointing out to us that autoimmunity was the causative factor in my daughters' severe symptoms.

 

Has Dr L tried oral steroids? If so, did they help?

 

The daughter who is now symptom free (Pex in Jan 2011) has very high IGM and IGG myco P. Our current treating doctors (who are treating my other daughter for autoimmune encephalitis- she is doing very well now) feel that the high myco p is a "ringer" for something else affecting these kids with neuro-psych issues- not necessarily an infection.

 

feel free to PM me for anything else I can share

[KLJ]

Thanks for replying. Powpow, was interested in who is treating your daughters. Dr. L is convinced its pandas and only pandas based on my son's clinical presentation. She poo poo'd the cunningham and re testing his initial labs to check on titers(High)and mycoplasma levels (high) and Iga (low). After reading so many posts and doing my own research I am starting to think pandas is not the whole story. I am not sure where to go to find out what else might be going on (lyme, candida, vitamin deficiencies, other gut issues) his issues are all neuropsychiatric.

[croatianmum]

our sory is the same as dgfindley. he is 13 yo, 2 IVIG's behind us - no help at all. he is in a big flare right now, having A LOT of tics all day long. Also thinking about pex so I would like to follow this topic

[croatianmum]

PEX did help my very sick daughter, 3-4 months after her first IVIG seemed to do nothing. However, the relief it offered lasted only a few months. She repeated pex 3-4 months after the first pex.

Unless your child has lab "proof" (I know it roils people when I write about "proof") of an autoimmune process- of which the Cunningham test is one of many, many possibilites- I would not pay the $27K.

However, perhaps, $27 K is very doable for you. if it , go for it.

 

As far as "proof"- sed rate, ANA, antibodies, SOMETHING showing this is an autoimmune process- if it is an infection, pex is not going to help. If it is something else, pex will not help.

I am not negative on PEX at all-- I just know too many people who were not helped by it at all.

 

Both of my daughters had it (and one had it twice). it was restorative for one child and a step in the right direction for another. We had highly positive Cunningham Tests, positive Sed Rate and positive ANA (anti-nuclear antibodies) . We had some clues (including a very strong positive reaction to high dose oral steroids) pointing out to us that autoimmunity was the causative factor in my daughters' severe symptoms.

 

Has Dr L tried oral steroids? If so, did they help?

 

The daughter who is now symptom free (Pex in Jan 2011) has very high IGM and IGG myco P. Our current treating doctors (who are treating my other daughter for autoimmune encephalitis- she is doing very well now) feel that the high myco p is a "ringer" for something else affecting these kids with neuro-psych issues- not necessarily an infection.

 

feel free to PM me for anything else I can share

oh, soory - I reported Your post instead of writing an answer to You ..I apologize for that.

 

My question was : I don't speak english so good to understeand everything - so can You maybe explein this bit better to me? My son had his ANA negative, IgG, and IgM levels are fine, but after 2 IVIG's he is not doing better at all so I'm thinking about pex. Is is worth doing it if his autoimmune tests are all negative? And when we tried steroids last year he had a terrible reakction to them - ticcing worse than ever.. So confused about all of this...

[LNN]

Thanks for replying. Powpow, was interested in who is treating your daughters. Dr. L is convinced its pandas and only pandas based on my son's clinical presentation. She poo poo'd the cunningham and re testing his initial labs to check on titers(High)and mycoplasma levels (high) and Iga (low). After reading so many posts and doing my own research I am starting to think pandas is not the whole story. I am not sure where to go to find out what else might be going on (lyme, candida, vitamin deficiencies, other gut issues) his issues are all neuropsychiatric.

 

We did Pex w/Dr L 5 yrs ago. I admire her a lot and am very grateful for her help when no one else would take us seriously. We did Pex and at first I thought it was awesome, but the improvements didn't last. 6 weeks later he regressed. We did IVIG and he got even worse. It turns out my son had undiagnosed lyme. We spent 2.5 yrs treating lyme and other issues with an LLMD and my son is now in a great place. I respect Dr L but the test she uses for lyme is the standard western blot, which is unreliable. I have no idea if your son has lyme or not. But you can't rule it out using the standard WB. Under the pinned threads at the top of the forum page, you'll see "helpful discussions for lyme" - under that heading you'll find articles explaining the various tests.

 

Before parting with $27,000 of my own money I'd rule other things out. The list of conditions that can trigger neuropsych issues is a long one - Pandas, lyme, myco, mold, pyroluria, methylation, heavy metals, nutritional deficiencies (particularly the Bs and zinc), excess copper, .....$27,000 pays for a lot of doctor's appts and treatments.

 

I know two families who were really helped by Pex and their daughters were severe. But I also know families that didn't see lasting improvements. If your son still has high myco, I'd be sure that was gone first, at the very least. otherwise, the trigger is still there and you can remove auto-antibodies, but what would stop the body from making more if the myco is still there? What are you doing to treat the myco?

[PowPow]

PM'd you klj

[PowPow]

 

PEX did help my very sick daughter, 3-4 months after her first IVIG seemed to do nothing. However, the relief it offered lasted only a few months. She repeated pex 3-4 months after the first pex.

Unless your child has lab "proof" (I know it roils people when I write about "proof") of an autoimmune process- of which the Cunningham test is one of many, many possibilites- I would not pay the $27K.

However, perhaps, $27 K is very doable for you. if it , go for it.

 

As far as "proof"- sed rate, ANA, antibodies, SOMETHING showing this is an autoimmune process- if it is an infection, pex is not going to help. If it is something else, pex will not help.

I am not negative on PEX at all-- I just know too many people who were not helped by it at all.

 

Both of my daughters had it (and one had it twice). it was restorative for one child and a step in the right direction for another. We had highly positive Cunningham Tests, positive Sed Rate and positive ANA (anti-nuclear antibodies) . We had some clues (including a very strong positive reaction to high dose oral steroids) pointing out to us that autoimmunity was the causative factor in my daughters' severe symptoms.

 

Has Dr L tried oral steroids? If so, did they help?

 

The daughter who is now symptom free (Pex in Jan 2011) has very high IGM and IGG myco P. Our current treating doctors (who are treating my other daughter for autoimmune encephalitis- she is doing very well now) feel that the high myco p is a "ringer" for something else affecting these kids with neuro-psych issues- not necessarily an infection.

 

feel free to PM me for anything else I can share

oh, soory - I reported Your post instead of writing an answer to You ..I apologize for that.

 

My question was : I don't speak english so good to understeand everything - so can You maybe explein this bit better to me? My son had his ANA negative, IgG, and IgM levels are fine, but after 2 IVIG's he is not doing better at all so I'm thinking about pex. Is is worth doing it if his autoimmune tests are all negative? And when we tried steroids last year he had a terrible reakction to them - ticcing worse than ever.. So confused about all of this...

 

CroatianMum,

do you have a rheumatologist you can go to?

Autoimmune testing is so much more than ANA and it is not just IGG, IGM levels-- those could be negative and there still be an identifiable problem. I really do not know if pex would be worth doing without definitive knowledge or at least an educated guess (for example, positive reaction to steroids) that an autoimmune process is at play.

 

This may not help, since you or may not be able to understand the language well-enough-- but maybe watch this video and pause it and write down the tests it lists (there are written lists that will show up on screen)- Maybe some of these could be checked on your son?

https://aealliance.org/clinical-care/grand-rounds/

 

I do not know how to advise you. What does Dr K say- after all the IVIG you have done?

[PowPow]

one more thing, croatianmum,

Have you tried advil (ibuprofen) for him? regularly, consistently for a few days? any change?

[rowingmom]

 

 

 

I respect Dr L but the test she uses for lyme is the standard western blot, which is unreliable. I have no idea if your son has lyme or not. But you can't rule it out using the standard WB. Under the pinned threads at the top of the forum page, you'll see "helpful discussions for lyme" - under that heading you'll find articles explaining the various tests.

 

 

And you can't rule out coinfections (bartonella, babesia, ehrlichia, mycoplasma, RMSF) even if lyme is negative.

 

Buhner believes that autoimmune reactions are not the immune system mistakenly attacking the body, but the immune system attacking undiagnosed intracellular infections and the resulting concomitant fire.

[T_Mom]

Great information in the posts above.

 

My youngest d had IVIG and the first time it had a VERY positive effect, then two years later she had IVIG again and this time her symptoms became worse. She then had pex and it helped a great deal. She is much, much better 6 months later.

 

I think asking Dr Elia is a great idea, and/or pursuing additional autoimmune testing to rule out any other identifiable autoimmune issues.

 

I appreciate especially the "Grand Rounds" video posted by PowPow. As parents really need to ask the treating docs to run the tests which might shed light on whether or not there is an identifiable autoimmune basis for the neuropsych issues experienced by our kids.

 

The response to immune modulating treatments is key. Dr. K recommended the "trial" of steroids -- and if there was a reaction THEN IVIG...that made sense 5 years ago to me, and it still makes sense...

 

Our experience has been that both daughters had pex and yes, in our situation it did help.

Edited February 4, 2014 by t_mom

[T_Anna]

My DS15 had PEX in August. It was after two IVIGs didn't seem to help very much (eliminated dilated pupils and some rage). The PEX didn't seem to do much either, but now we think maybe it was helpful, we have had another 4 HD IVIGs and he's in a much better place (sleeping, eating, walking around the house), but he is still homebound and still struggling with many OCD issues. We did do well on high dose oral steroids and with IV steroids. We ran Cunnigham Panel and tested his ACE levels (neuro sarcoidosis), SED rate, Thyroid Antibodies, etc. All the above came back positive/elevated. DS tests positive for Hashimoto's Encepholopathy as well as Neurosarcoidosis.

 

Also, he is taking a bunch of antibiotics that are helping (we think). Augmentin, Valtrex, FLAGYL, minocycline, nystatin, Japanese knotweed, olive leaf extract, thyroid support, synthroid.

 

I agree with PowPow. Find someone who will test these things as well.

 

T.Anna

DS tests positive for Strep, MycoP, EBV, Coxsackie. He's negative on WB Lyme but I won't be surprised if + on Igenex. His immune system is "broken" he was symptomatic since the age of 2, we had No idea : (

Edited February 4, 2014 by t_anna