aggressive IVIG treatment

[pathfinder]

My ds17 just had 2gm/kg ( total of 150gm of IVIG) 3days of last week with no side effect so far. he was approved for 9 treatments at this dose monthly.

I think it might be a bit too aggressive as pandas treatment but we are going to do it as my son is already 17 and missed chance of treating pandas for last 8-9 yrs. ( we were after wrong treatment) I would say my son is at 70 -80% since we started antibiotic and this is not acceptable for us. We will continue to pursue until we have the son we used to have but having said that I am very very please with his progress.

His OCD and anxiety are almost completely gone and only occasional angry outburst remains ( He would ask same thing over and over and used to get very angry over little things) He is doing well at school (11th grade) and working on SAT that he will be taking come this November.---all those time and money we spent on his tutor did not go waste as it is definitely feasible for him to make it into 4 yrs college.

I would say probiotic+IVIG are working for us and we will continue with it for now.

Pathfinder from Diamond Bar, California.

[norcalmom]

why 2? I asked Dr K. while we were in Chicago, why he does 1.5 - and he said that one would think that 2 would work better, but in his experience that was not the case - couldn't explain why - just that from years of trying different doses, 1.5 worked the best for him.

 

Are u seeing a doc in California? Glad you are having improvement.

[EAMom]

Yup...the whole 1.5 vs. 2 is a little confusing. Dr. K. (in an e-mail, we haven't seen him, got tx'd locally) actually recommended 2gm/kg (vs. 1.5gm/kg) for our dd b/c of her age (9 at the time of IVIG) and her history of PANDAS anorexia.

 

This was about 1.5 years ago...I don't know if he would have a different recommendation if we asked him now.

Edited September 28, 2010 by EAMom

[norcalmom]

Did you use 2 both times?

[pathfinder]

Yes we are seeing a dr. in Irvine, Ca. (dr.L)

We did 40gm total IVIG (0.6gm/km) first time through different dr. (his skin allergy he was living with for several years cleared up in few days afterward )but instead of waiting out and continuing with that dose I took my son to see Dr L in Irvine and jumped right into high dose IVIG ( he tends to go for 2/kg ) It is to early to call but my son has been doing so well last 3 months since we started augmentin 1000x2, I know we are at the right place. He is not slave to his ocd and anxiety anymore which used to make him a miserable and angry boy. (Prozac and sisters or abilify and familys did not help him to this extend and they would bring out whole new sets of problems) We just have to figure out how to tame his yeast behavior under control and it is very difficult at this point as nothing seems to work. ( he craves for sugar and salty food and when he gets sugar, he acts as if he is high on something (hyper active-laughing-drunk like) no probiotic is working because he would have diarrhea on some of strong ones.

[EAMom]

Did you use 2 both times?

 

Yup. When I originally asked Dr. K. he said the drawback to the higher (2gm/kg) dose would be 1) higher cost (b/c more IVIG) and 2) more potential for side effects (nausea, headache, etc.)

 

Both times dd handled the dose well. The first time there were flu-like symptoms for a couple of days after wards (MAJOR headache if she missed a tylenol or advil dose). The second time, symptoms were not quite so bad...but we took it easy for a couple of days after wards and did give advil/tylenol/benedryl to ward off flu symptoms. The "turning back the pages" wasn't quite so bad the 2nd time around either.

[Joan Pandas Mom]

This morning I asked for the higher dose for my 16 year old son and was told no 1.5g is what they use. Should I keep asking for 2? Did I read Dr. Swedo used 2 per Kilo?

[danddd]

eamom-

 

your dd had 2 ivigs, how far apart were they? and how much improvement did you get from the first?

my dd9 had one ivig, and i am wondering how to know if another would help.

also, how long did she "turn back the pages" with the first?

when i did the math to figure out the dosage she had (with dr.k), it was about 1.8.

[EAMom]

eamom-

 

your dd had 2 ivigs, how far apart were they? and how much improvement did you get from the first?

my dd9 had one ivig, and i am wondering how to know if another would help.

also, how long did she "turn back the pages" with the first?

when i did the math to figure out the dosage she had (with dr.k), it was about 1.8.

 

The first one was in Aug. 09. I would consider it very sucessful. Her mood, margin issues, OCD, "movements" (not sure if tics or compulsions) all went away. Then she relapsed (still on 250mg/day Azith.) after a 1 day fever (prob. viral) in Feb. 2010 (so 6mo. later). We were unable to get back to "baseline" with doubling her antibiotics, and then a course of pred..so we opted for a 2nd IVIG in May 2010.

 

So far (4mo. out) I would consider IVIG #2 to be a success. She still has some learning issues (math facts, spelling, semi-bad handwriting...but better than b-4 treatment) which may not be entirely PANDAS. The one remaining Pandas symptom that didn't go away with the 2nd IVIG (but did with the first) is a couple of "movements" (not a big deal in the big scheme of things) which may be tics or compulsions.

 

With the first IVIG, turning back the pages (where she seemed worse not better) lasted about a week or two, and then week by week she improved.

[norcalmom]

does anyone know what dose they will use in the upcoming study?

 

man how I wish I could get into swedo's and Dr K's files to see what dose has highest sucess rate.

[momaine]

Yes we are seeing a dr. in Irvine, Ca. (dr.L)

We did 40gm total IVIG (0.6gm/km) first time through different dr. (his skin allergy he was living with for several years cleared up in few days afterward )but instead of waiting out and continuing with that dose I took my son to see Dr L in Irvine and jumped right into high dose IVIG ( he tends to go for 2/kg ) It is to early to call but my son has been doing so well last 3 months since we started augmentin 1000x2, I know we are at the right place. He is not slave to his ocd and anxiety anymore which used to make him a miserable and angry boy. (Prozac and sisters or abilify and familys did not help him to this extend and they would bring out whole new sets of problems) We just have to figure out how to tame his yeast behavior under control and it is very difficult at this point as nothing seems to work. ( he craves for sugar and salty food and when he gets sugar, he acts as if he is high on something (hyper active-laughing-drunk like) no probiotic is working because he would have diarrhea on some of strong ones.

Have you tried Diflucan for yeast? It has made all the difference for my dd.