IVIG - really worth it?

[searching_for_help]

Yes, she has tried steroids. I didn't see her responding any better to those than to her abx (Augmentin). Abx is the only thing that keeps the severe depression and extreme OCD away. (She had an exacerbation the summer of 2012 - kept testing positive for strep but her symptoms were more like mono...) She always has intrusive thoughts, but without the abx she would sometimes fall to the floor and scream and beg me to make the "thoughts" go away. On abx she is able to read and enjoy life somewhat - but she says the OCD thoughts are always there. She still isn't able to function normally - but much better with the abx. Her gut is in bad shape with no good gut bacteria - so a few weeks ago I tried to wean her off the abx - but within a few days she started talking about wanting to die again. So she's back on abx - and of course we do probiotics, inulin fiber, and FOS, and treat the "bad bugs" (2 citrobacter varieties) in the gut with Candacid Forte, Uva Ursi and Tanalbit. We'll retest the gut again in a few weeks to see what is going on there.

 

Can't help wonder if the gut is what started this whole mess. She had terrible colic as an infant, and tummy troubles thoughout preschool.

[pr40]

lipoic acid may be something to try. we haven't done it ourselves but I did some research and it may help in some cases. there was a recent thread, LLM had a note of caution.

[SSS]

Yes, she has tried steroids. I didn't see her responding any better to those than to her abx (Augmentin). Abx is the only thing that keeps the severe depression and extreme OCD away. (She had an exacerbation the summer of 2012 - kept testing positive for strep but her symptoms were more like mono...) She always has intrusive thoughts, but without the abx she would sometimes fall to the floor and scream and beg me to make the "thoughts" go away. On abx she is able to read and enjoy life somewhat - but she says the OCD thoughts are always there. She still isn't able to function normally - but much better with the abx. Her gut is in bad shape with no good gut bacteria - so a few weeks ago I tried to wean her off the abx - but within a few days she started talking about wanting to die again. So she's back on abx - and of course we do probiotics, inulin fiber, and FOS, and treat the "bad bugs" (2 citrobacter varieties) in the gut with Candacid Forte, Uva Ursi and Tanalbit. We'll retest the gut again in a few weeks to see what is going on there.

 

Can't help wonder if the gut is what started this whole mess. She had terrible colic as an infant, and tummy troubles thoughout preschool.

** Is she gluten and dairy free 100% ?

Has she tried this?

Personally, I recently went 'Paleo' diet for my gut issues (no grains, no dairy, no legumes) it's meat, veggies, fruit, nuts (except peanuts)

And I cannot believe how much better I feel, my mood has been lifted,

sleeping better, and hungry (eating.) I was 100% gluten free, but it wasn't enough- I found myself just eating gluten free bread products,

and not getting enough fat in my diet. I added teaspoons of coconut oil in my hot drinks too.

With a history of eating disorders for your daughter, tho, not sure how food changes go over.

[JuliaFaith]

We where looking at IVIG when I decided it was time to look at lyme first. In my son's case, I was glad we did not do IVIG. My son's immune system would have picked up anything that the IVIG would have had to offer in terms of bacteria and viruses etc (which our doctor confirmed). He was also initially not a responder to abx or steriods.

 

With that said, we are using a blood product now that has been carefully cleansed per the company that makes it. So we do have a chance that something else could be contracted but now he has been through 3 years of treatment and building up the immune system so we are hopeful that he could handle it now.

 

Also, it seems, in extreme cases, IVIG's have been really helpful to get a child to a better place so that they are able to handle other treatment.

 

I always go with my gut when looking at all choices and it has paid off very well for my son.

[LNN]

Searching - you might be interested in this book on eating disorders - http://jamesgreenblattmd.com/ Greenblatt is a professor at Tufts and supports biomed/nutrient support for eating disorders. His Answers to Anorexia tells you how to do a zinc test to see if you're deficient in zinc. Adding zinc made an enormous difference for my son, cognition-wise and health-wise.

[Hopeny]

What I've learned from talking to immunologists about my kids immune complement disorders is that ivig would be monthly for two years. I have started to wonder of most of these pans kids have some type of immune disorder, why do strep and Lyme go so bad in some and not others?? It seems like it would take multiple ivigs if there is an underlying issue. I also do believe if Lyme and co are in the picture it seems like that must be treated, ivig alone does not seem to work for Lyme

[JuliaFaith]

You make some goods points Hopeny. It could be that a 'mold' component of neurotoxins was a big player in my son's PANS (in addition to vaccinations/genetics etc.). To me the lyme and coinfections are always there but the immune system has to be able to keep them deactivated, just like viruses, which is the difficult part. This is why our focus has been on supporting the immune system and now trying to train it to work well again.

[3bmom]

My son had the eating disorder along with OCD and lost 30lbs in 2 months. He had been diagnosed with PANDAS but I had difficulty getting proper blood work since the hospital that originally diagnosed him "No longer Believes". He ended up having 3 infections and life threatening allergies. I think ALL ED should have an infection blood panel draw.

 

I also wonder is IVIG used to help dilute the child's own antibodies from attacking? That would make sense then if the infection(s) hasn't been addressed it will just ramp up again.

 

Another thought is after IVIG if you don't change the diet you will just start adding another layer of inflammation.

[Hrosenkrantz]

3bmom -- how should the diet change?

[3bmom]

Almost 90% of corn grown in the US and soy is genetically modified. The corn has the DNA of a bacteria put in every cell so when the bug bites into a corn kernel it's stomach will explode. Makes you wonder what does it do to our gut? They are finding this toxin in a majority of placentas showing it doesn't disappear. It also exposes us to more toxins than has been tested along with high levels of formaldehyde. Pigs fed this corn are irritable according to farmers. I posted a link under GMO's and also "genetic roulette".

 

When we gave up corn and did Paleo diet like S and S our allergy titers plummeted. our Dr now tells everyone to do this. My DS gained back his 30lbs in all muscle and sleeps well too. Sometimes I would think we were having a flare only to find out he ate something he shouldn't have and it takes a week at least to clear.

[anonymous0121]

Yes, she has tried steroids. I didn't see her responding any better to those than to her abx (Augmentin). Abx is the only thing that keeps the severe depression and extreme OCD away. (She had an exacerbation the summer of 2012 - kept testing positive for strep but her symptoms were more like mono...) She always has intrusive thoughts, but without the abx she would sometimes fall to the floor and scream and beg me to make the "thoughts" go away. On abx she is able to read and enjoy life somewhat - but she says the OCD thoughts are always there. She still isn't able to function normally - but much better with the abx. Her gut is in bad shape with no good gut bacteria - so a few weeks ago I tried to wean her off the abx - but within a few days she started talking about wanting to die again. So she's back on abx - and of course we do probiotics, inulin fiber, and FOS, and treat the "bad bugs" (2 citrobacter varieties) in the gut with Candacid Forte, Uva Ursi and Tanalbit. We'll retest the gut again in a few weeks to see what is going on there. Can't help wonder if the gut is what started this whole mess. She had terrible colic as an infant, and tummy troubles thoughout preschool.

my son has citrobacter 4+ on great plains and nothing is getting rid of it and I am wondering if it is responsible for this 10 month flair that has us in the darkest days ever, the tics, ocd and severe violent rages non stop are unbearable and I don't know what to do else, what have you found to help, we did colloidal silver and it seemed to get rid of the strep, staph and some others but not the citro...

deborah

[Cleopatra]

My dd is acute onset strep PANDAS with zero co infections. She has had 6 HD IVIg's (plus 3 intervening LD ivig's). She has done amazingly well on it and it is the only treatment that has helped. Abx are useless here except as a prophy against additional strep infection. This has been over a period of a year. Her 1st HD ivig produced STELLAR results. Dd had been psych hospital worthy at the time. Since then, her improvements have not been as epic because each time she has less distance to go to get to 100%. Each treatment now produces slower and more subtle results. We are now doing it monthly. I can't say enough good things about it. I think it's worth every penny if you need to pay OOP and can lay your hands on that type of $$. That being said, every child responds differently to everything, but, if you have tried multiple abx, antivirals and cleared all current infections and still have more symptoms than are tolerable, it's certainly worth a try, IMO. It does stick. It does work. In order to help increase your possibility of it sticking I do recommend staying on HD abx during and after.

It's not hype.

[Joan Pandas Mom]

My son had 7 IVIG's total. Back in 2010 & 2011 he was incapacitated with PANDAS. He couldn't attend school, couldn't talk, barely ate,Lost 40 lbs in 3 months, took hours to get out of the house, etc. It took a long time for the IVIG's to work. He did get ALOT worse before he got better. I'm so grateful for all the Dr.'s that treat PANDAS and PANS. They are all truly amazing. When Dr. L prescribed HD IVIG every 4 weeks is when we started to see really good results. He also did 5 weeks at the OCD Institute at McLean's--great, great place. Dr. Jenike and his staff are amazing. He is 100% back and graduating from High School this May. He got High Honors last year. He is going to college in the Fall.

 

Hang in there. IVIG's do work.

[qannie47]

Just re-read thru entire thread. I wanted to share that we are 9 months post IVIG. My ds is doing great. He has had One big flare this past Sept. Since then, he has had two mini flares. Lasted only 24 hours because I did not wait around to see if it went away on its own. Started full abx asap. He responded beautifully. All symptoms gone 100% in 24 hours and stayed that way. I also want to add that The 2 mini flare were not at all what they had been in the past. Only saw motoric movements and a little emotional regression. Never saw the BIG changes. I was told to expect flares after IVIG, but the upside should be less intense, and shorter in duration. We have experienced that.

 

I wish all kids responded as well to IVIG. I don't understand except I can see why an underlying infection is the culprit, as stated by others in this forum. I know Dr. Swedo groups kids as "responders" & "non responders". With great hope more will be understood on this....

 

I am a big advocate of IVIG, of course because we had such great results. But I can see why one would be weary. High price ticket and no promises.

 

Many autoimmune disorders receive IVIG as much lower costs....hopefully this will be a reality for Pandas in the near future.

[Hrosenkrantz]

joan pandas mom -- out of curiousity, were your 7 monthly ivigs covered by insurance?