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IVIG - did it help your child?


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LOL, no I actually work for lululemon athletica! It is all the yoga that keeps me sane. My parents always told me I should have went to medical school. I am just an angry mom who started learning about PANDAS and got pissed off. I made it my mission to make treatment available to all children (not just the ones that can afford to travel and pay out of pocket) then I found out my DD had it too. So now I spend time trying to advocate and educate other docs . My daughter was a patient of dr. Geller and Dr. Jenike. I have circled back with them as well as the laundry list of other docs now that we know what we are dealing with.

Yes, thank you so much!! I have tyremedous respect for Dr. Geller and Dr. Jenike ,they are doing amazing work for the PANDAS cause. I also sent out the PSA's to every school in my district. PM me if you want a copy of what I send.

You seem to have a lot of ties to many doctors. Do you work in the medical field?

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DD16 had first HD IVIg infusion in 2008. Her symptoms at the time were the worst ever (initial overnight onset of symptoms at age 2 following impetigo). These included violent rages, severe tics, anxiety/OCD, sensory issues, sleep problems, etc.). Her strep titers were in the 3000 range. We saw no changes until week 9 or 10. Immediately saw a 70-80% reduction in tics, 100% reduction in rages, and she started sleeping in her own bed through the entire night for the first time since she was 2. It took up to a year for 100% reduction in tics. She went from Cs and Ds to As and Bs and her social skills improved enormously. IVIg did NOT help to improve her anxiety/OCD. In fact, it got worse as everything else improved. Her remission lasted one year. We also tried monthly LD infusions but they only made her worse.

 

In 2009 we tried another HD infusion and she went back into remission for another year. The tics never came back but the violent rages did. Once again, it took 9-10 weeks to see any changes.

 

In 2010 DD started getting one infection after another (mostly skin infections). She had another HD infusion and shortly after she became extremely violent with self-mutilating behaviors. She was hospitalized at CHB for 2 weeks. Strep titers were normal, standard WB normal, D levels were catastrophically low. We did month-long tapered prednisone and it seemed to kick in 2 weeks later. 'Course, it could have been the IVIg infusion that finally kicked in. She remained in remission for another year.

 

Again, during this time, tics never came back but anxiety/OCD was getting progressively worse.

 

DD started getting brain fog, fatigue, and migrating joint stiffness and pain in 2010. We tested for Lyme at IGeneX this time and she came out positive for multiple Lyme-specific bands. CD57 was 24. She came out high for MycoP IgG and negative for other TBIs although after treating for Bartonella she did break out in a Bartonella rash.

 

After a few months of treatment for Lyme and Bartonella we tried 2 more HD IVIg infusions to try and eradicate the anxiety/OCD. DD had some serious herxing from the infusions but we never saw any benefits from those last 2 infusions.

 

I too was diagnosed with Lyme/Bartonella/MycoP and although I have no proof, I believe I gave it to my DD congenitally. It explains my years of joint pain/stiffness and foot pain, which went away after treatment.

 

Do I regret having done IVIg? Only the LD infusions. Not the HD infusions. The HD infusions gave us a few year-long remissions, which we desperately needed.

 

However, having said this, if I had to do it all over again, I wish we could have tested for TBIs through IGeneX years ago and treated the other underlying infections for a few months before trying IVIg. This way DD might have stayed in remission. PANDAS has been in remission now for 2 years. We are still trying to get to the bottom of her anxiety/OCD. I am thinking it may be due to homozygous c677t MTHFR, which we have been treating for the past year with methylfolate, B1, B3, B6, B12. Now we are testing anti-cerebral folate antibodies and will tweak MTHFR treatment.

 

In hindsight I wish we had tested MTHFR and KPU years ago. DD also has very low zinc levels and is supplementing with zinc picconlinate.

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Yes, thank you to everyone willing to share. It's very helpful to hear both sides of the coin and your personal experiences.

 

Nancy, thanks so much for the very informative reply. We have a lot of similar symptoms here -- both in your daughter/my son and in yours/mine. I believe I have had Lyme for longer than my son has been alive and if he has it I believe he contracted it congenitally as well. We are doing our labs on Monday and I'll post the results when we get them. For right now, I am positive for Lyme, have clinical dx and rash for bartonella and high mycoP titers (my husband's mycoP is extremely high, both IgM and IgG -- I think he needs to be tested for Lyme, too at this point -- and that opens a whole other set of suspicions as he was healthy as a horse until about a year ago and I can't help but wonder if he contracted lyme from me).

 

Please continue posting if there is more to add. Thanks again to all of you.

 

P.S.

Is Dr. B's IVIG protocol HD or LD? If I remembering correctly it used to be LD, but has he changed it?

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Dr. B uses HD IVIg --typically 1.5 g/kg. The last dose we did with him in Feb 2010, which did not help DD, he went to 2 g/kg. I agree that your DH should also be tested. You could have given it to him.

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My son received seven IVIG during 2011 and YES it was Very helpful.

No more tics, no more Tourette and I guess no more brain inflammation .

He also was in the residential program of Rogers Memorial Hospital and in his case that was the special ingredient for him.....NO MORE OCD or anxiety.

 

He returned home two months ago and he is doing great!!! He's going to,school and he is recovering the last two years that he was so sick...now my son is living like any "normal teen" thanks God.

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