saw tooth recovery

[dcmom]

mommd-

 

That is very interesting. I was wondering, is your new doctor thinking of monthly low dose ivig, or periodic high dose ivig? How long? Forever? through childhood?

[Fixit]

We are still doing pretty well. I still see bumps though and we are 6 weeks after the second IVIG. Out bumps only last very briefly, sometimes even minutes and seem to be more along the lines of mood swings or anger outbursts. Call it a mother's instinct but I know it is related to the disease and not normal.

We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting.

I keep trying to look at the big picture and not the details to some extent. We are MUCH better than one year ago. Excelling in school and now with some minor impulse issues. I still walk on eggshells because I know it can turn on a dime though. At least I know we are doing something right. He has only hada few REALLY bad days in the last year compared to before when they were all bad. I am afriad though that this new doctor is right. This may be more autoimmune and chronic. I hope she is wrong.I do think this healing though is very sawtooth. Five steps forward and two back. Very nerve wracking to watch. Hang in there.

 

hi mom ,

thanks for posting this update....

the underline parts Finally make sense!!!!!! that's why i'm here always reading. and hearing it and hearing it and now the way you worded it....to get that light bulb moment...

those statements are exactly what doc k and doc t said, in that order....

and thats why doc k says..do not pass go...go directly to ivig......i get it!!!!

ds does show myco p igg still but less i think.....no current test that man has, shows any sign of strep but we are having some good signs,,,,,but even if not....the system is in going 100mph, no brakes......and you need a tractor trailer to get infront of you to slow down and apply its brakes slowly as you roll into, and the tractor trailer is slowing down the system.........

and it doesn't matter if there is a current infection(foot on the gas peddle)its going and can't be stopped on its own(no brakes)

i think hearing another doctor say it only gives it more credence for me...

my concern as doc t says it is chronic.....but to what degree

like dc mom asked.....does she think ivig is needed 5 times, or monthly or forever???/

[Fixit]

I was just visiting Dr t's site and he was discussing pex vs ivig.....

and he mentioned pex in a positive light......

so if i can ask again why you chose ivig over pex the second time if pex worked so well the first time...

 

 

Hi Claire, as you may remember, my son also did PEX and then IVIG, and the first IVIG made him worse. I think after you've seen the PEX and its immediate direct dramatic results, the IVIG is harder to watch... but I am quite sure you are doing the right thing!

[mom md]

I think she is thinking periodic high dose IVIG (1gm/kg x 2 days) every 3-6 months. She wants to talk to the immunologist and see. I think they want to wait till we flare again and make sure it is needed. My guess is that will be in the fall (if history tends to repeat itself). Tess Nelson (first name Tesita I think) is a pediatric neurologist in Charlotte. It took me 9 months to get in! There is a new doctor who just moved here (Dr. Patel at Carolina Medical Center) who is board certified in pediatric infectious disease and immunology. I am thinking of getting my second child into see him (his ASO is 384 and his antiDNase B is pending) but my guess is he has early signs. I think the more we get these doctors talking and working together the better. The good news is I can name 7 doctors quickly in Charlotte who all believe in PANDAS and are willing to treat!!!!! Pediatricians,neurologist, infectious disease, and immunologist.

We did IVIG after PEX even though it was an immediate cure because I was worried we needed to "reset" the immune system and IVIG might do a better job in doing that. We had 4 months of no symptoms but when his immune system was challenged he flared. Kind of like re-booting your computer. I have not taken PEX off the table though and would definitely do it again if the doctors thought it was needed.

Heard today that BCBS is retroactively dening our IVIG. The battle begins!!!!!

[mom md]

To be honest I do not know how many IVIGs will be needed. My hope is that after puberty his immune system will be stronger and flares will be rare if not at all. Kathy Alvarez who works in Cunningham's lab thinks this may be true but there is no research yet to support this just stories.

I do think IVIG is the "sledge hammer" that stops the runaway immune system. Great analogy by the way. I think there is an immune issue and the strep infection is the perfect storm. I think the IVIG stops it dead in its tracks. PEX does too but does not always erase the "memory". My hope is that IVIG will. I think like other autoimmune diseases, each affected person is different some may be harder to cure. I have no regrets though with either PEX or IVIG except that I only wish I had known earlier.

We are still doing pretty well. I still see bumps though and we are 6 weeks after the second IVIG. Out bumps only last very briefly, sometimes even minutes and seem to be more along the lines of mood swings or anger outbursts. Call it a mother's instinct but I know it is related to the disease and not normal.

We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting.

I keep trying to look at the big picture and not the details to some extent. We are MUCH better than one year ago. Excelling in school and now with some minor impulse issues. I still walk on eggshells because I know it can turn on a dime though. At least I know we are doing something right. He has only hada few REALLY bad days in the last year compared to before when they were all bad. I am afriad though that this new doctor is right. This may be more autoimmune and chronic. I hope she is wrong.I do think this healing though is very sawtooth. Five steps forward and two back. Very nerve wracking to watch. Hang in there.

 

hi mom ,

thanks for posting this update....

the underline parts Finally make sense!!!!!! that's why i'm here always reading. and hearing it and hearing it and now the way you worded it....to get that light bulb moment...

those statements are exactly what doc k and doc t said, in that order....

and thats why doc k says..do not pass go...go directly to ivig......i get it!!!!

ds does show myco p igg still but less i think.....no current test that man has, shows any sign of strep but we are having some good signs,,,,,but even if not....the system is in going 100mph, no brakes......and you need a tractor trailer to get infront of you to slow down and apply its brakes slowly as you roll into, and the tractor trailer is slowing down the system.........

and it doesn't matter if there is a current infection(foot on the gas peddle)its going and can't be stopped on its own(no brakes)

i think hearing another doctor say it only gives it more credence for me...

my concern as doc t says it is chronic.....but to what degree

like dc mom asked.....does she think ivig is needed 5 times, or monthly or forever???/