doctor advice

[evergreen]

hello all, I have probably talked to many of you at Dr. B's office as we have been there for over a year. I have 2 sons now in their 20's with PANDAS, CVID, Lyme and co-infections. It has been increasingly difficult to travel from NJ due to their schedules in college. Our insurance nurse case manager has suggested Dr. Jyanouchi in Newark NJ. She is supposed to be willing to do IVIG at home. My dd3's LLMD is of the opinion she may not give a high enough IVIG dose, which could make them worse. Does anyone have any information on this?

 

Appreciate any advice from those in the know. Even though we have been dealing with all of this for 10 years, I still don't feel very confidant in my decisions mostly because I also have Lyme and have considerable cognitive difficulties. Mostly, I am overwhelmed by all of this. Thanks in advance.

[Chemar]

welcome to the forum

 

sorry your post got held back a while before showing....I am bumping it up so others can reply

[Tamistwins]

Hi evergreen,

We too have seen Dr. B and due to travel difficulties decided to get treatment at home. Please pm me for further details. However I will say that Dr. Jyonucchi is the ordering doc for my sons Ivig and she gives him 1 g per kilo every 3 weeks. Dr. B said while it might not turn off autoimmune response he says it will keep infections at bay. He then continued to say it may just work. These doctors really don't know what works. Dr. Jyonucchi believes by giving it every 3 weeks it keeps things stabilized. Where in nj are you from? I'm in Essex county.

Good luck on your decision.

Tami

[minimaxwell]

Dr Trifiletti does HD in his new office in Ramsey,NJ.

[evergreen]

Thanks for your replies. It is really hard to make decisions about their care when there is disagreement among the docs. I am hoping to hear from any others with feedback about the dose issue. I had not paid attention to the dose given until now since my sons are so improved.

 

It is felt they should continue since it has helped and their condition is considered autoimmune.

DD3 has had longstanding Lyme and really lost his teenage years to the illness, not being able to go to school until recently and having little social contact. DD1 had mostly psychiatric symptoms including what was considered to be bipolar. Long after DD3 became ill, we came to find out his problems were in fact PANDAS and Lyme. Never would have known if not for his younger brothers illness. He is doing very well now after antibiotic treatment and IVIG. It is really quite amazing. I see people all the time and wonder if they also have this condition. Have tried to alert one family to it but hit a wall. I really wish I could help more people with what we've learned.

[mdmom]

Evergreen,

 

I am right where you are and have been. My son is 15 and was just diagnosed not quite 2 years ago with PANDAS, then Lyme and co-infections 15 months ago. Lyme treatment has done wonders for him, but it's clear the autoimmune process is relenting and he tells me that he spends 60-70% of his mental activity on OCD thoughts and behaviors. He's exhausted from dealing with OCD for so long.

 

Now he has clinical symptoms and labs of CVID.

 

We are trying to get insurance to pay for IVIG. But then I keep reading that Plasma Exchange is the treatment of choice, followed by IVIG.

 

It confuses me as well.....and I think it will be years before there is a standard practice of care for PANDAS/PANS.

 

If we do get IVIG, it would be administered at home, as my son is already getting home health services because he is on IV antiobiotics (has a central line).

 

If you would like the name of my doc in D.C. (we live North of Baltimore), let me know. our doc orders everything to be done at home.

 

I feel your pain.....

[evergreen]

Hi mdmom,

It sounds like we have been having the same problems. I feel for you too as I know first hand how difficult it is to see your kids suffer and also dealing with everything while you are sick. The OCD is terrible, it has been a while since ds was bad, really hard to live with when it is. It can be very isolating. My son actually was hospitalized at one point because he had lost 30+ lbs. (thought to have an eating disorder). I KNEW he did not have eating disorder but agreed to hosp only to get him intensive cognitive behavioral therapy. They took out his picc line and tried to tell him Lyme was all in his head, that he didn't really have it. I may write a book one day.

 

I would be interested in your LLMD's name. That is not really that far for me. Does he treat the pandas and cvid also? Is he "no insurance accepted" as usual? As far as plasma exchange, that was never suggested to us over all these years. He had one other course of IVIG about 4 years ago with Dr. katz in CT. given at home. It did not help with the OCD and at that time there were no tics. Are you seeking approval for IVIG under the cvid diagnosis? That is what they will approve it for (over PANDAS) as far as I know.

 

ps. I realized I was using the abbreviations incorrectly. I have 3 sons, and was using the birth order as the number after dd. It looks like people use the number for age? My lyme brain at work!

[Joan Pandas Mom]

Hi Evergreen,

If your sons reach the point of long-term therapy, the OCD Institute located at McLean Hospital in Belmont, MA is excellent. It has a 3 month wait list to get in and could be a 5-6 week program, but it works! Dr. Michael Jenike runs the program. Again, they are excellent.

[Wombat140]

Yep, number for age, also it's DS for son and DD for daughter, so what you've got there is a DS20something. Took me quite a while to get the hang of it

 

If I were you I'd write that book if only to embarrass the hospital!

Edited August 18, 2012 by Wombat140

[minimaxwell]

My DD did the program when she was 16,let me know if I can help in any way.