Try 2nd IVIG or long term Psychiatric meds ?

[eljomom]

Burnell---what do you mean "Nih is all done. Dr. M is all done."? ARe they unwilling to help? Or have you decided against seeing them any more?

 

 

Hi Burnell (posted this in a different thread and moving it here)-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure that she got the IVIG in the study???)

 

I would be curious as to what you are thinking about doing next?

 

Will NIH keep following you? -- would you mind sharing how NIH is following the kids post-infusion? Do they do weekly "check-ins" or are parents completing behavior rating scales, and for how long post-infusion? What constitutes "success" of IVIG ...changes at 6 month changes, one year?

 

Who would you say is treating/following your dd now? NIH, Dr. T, or Dr. M.?

I would guess it is not a Pandas treating doctor recommending the psych drugs at this time -- Have you decided Pandas is not the real issue?

 

My dd (almost 12) had IVIG in May too (not with NIH), and while we have had some ups and downs, the effects were almost immediately evident and there has been obvious progression and shedding of ODD and OCD behaviors (she was very severe.) I wonder too about the follow-up re: which abx. you are using.

 

My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, continuously, and she received some IV steroids the last day of the IVIG (Gammunex IVIG.) She is doing much, much better. Personally, we would do IVIG again if needed, as we are sticking with the Pandas treatment regime as we have seen results.

 

If the anxiety is inflammation, then I would really would want to see a Ps doc. for treatment of the issues your d is facing.

 

Nih is all done. Dr. M is all done. We saw Dr Smith a few weeks ago in NJ. Smith, M and NIH all think we should haev another ivig done.

we are having more testing done.

The IVIG in May knocked out 80% of her OCD in June. But is July it all cam back and much worse.

ABX we have tried are amoxacillan, augmentin, augmentin XR, zithromicin, and biaxin.

the psych meds haev helped but only maybe lowered the OCD by 20%, she is not having panic attacks but still has lots of OCD.

[kimballot]

Hi Burnell-

 

I am sorry to hear that that symptoms are returning, but I do want to put a slight positive spin on this - that you learned that IVIG did help quite a bit.

 

You can put us in the column of "multiple IVIGs help, but do not cure the problem". My son is 14 and has been battling PANDAS symptoms with every infection since he was a baby. Although my son has had his immune system checked MANY times since infancy, last year we discovered that he had developed some selective immune deficiencies and we went to an immunologist who specializes in PANDAS (actually - upon further investigation we found out he had these deficiencies 3 years prior but that doctor did not think it important to share this with us).

 

I don't know what has made my son's immune system become low in IgG and IgA, and I don't think science has an answer for us at this point. I do know that this IgG deficiency has made it possible for insurance to pay for IVIG every 8 weeks.

 

So far, my son has gone 7 months without a major acute infection- which is huge. We also work with a doctor who specializes in lyme disease and she helps us select his antibiotics. I don't know if he has "lyme" disease per-se, but he certainly has some type of infection that has attacked his immune system and makes it hard for him to stay healthy. He will need to be on antibiotics long-term (as recommended by Dr. B, Dr. M and the lyme doc)... so I figure I may as well have him on the antibiotics that make him most functional, and a combination of doxycycline and azithromycin are doing the trick right now.

 

My son is doing quite well overall. Six months ago we had to hospitalize him due to severe depression. Today he is attending school and has friends and is happy. He still has some problems with fatigue and anxiety but he is well enough along that CBT can help him. No meds for depression or anxiety, but I have Dr. M's recommended dosage on hand if we need to ask the local doc to order it.

 

I would encourage you to see if your daughter has ANY immune deficiencies that would allow for insurance coverage for IVIG. I would also encourage you to see a doctor who understands lyme disease as they can be very helpful in selecting antibiotics. Also, if you have a choice of insurance at work, check into the IVIG policies of each insurance company. We were able to switch from an HMO with no out of network benefits to a traditional plan with national doctors that are "in network" (including Dr.B and Dr. M), and out of network benefits that cover most of our visits to other docs.

 

Best wishes to you - keep us posted.

[nevergiveup]

Have another ivig.

[Burnell]

Burnell---what do you mean "Nih is all done. Dr. M is all done."? ARe they unwilling to help? Or have you decided against seeing them any more?

 

 

Well NIH study has a protocol that outlines the study limits. SO the did one ivig and its over.

Dr M is in Tampa and she wanted us to see a doc closer to home in PA.

 

We saw Dr Smith in Edison NJ last month. He recommended several ivig in a row. We are having testing done to see what else may turn up - yeast, bartonella, etc, I am switching insurance to United healthcare as they cover ivig from PANDAS. That switch begins Jan 1st.

 

Til then, we are trying psch meds. since mid sept, she is on lexapro and riperidol. We just added Anafranil in the last few days. She was doing better maybe a 5/10 on the complusions, but the past week has gone back up to an 8/10. On my scale each point = 30 minutes of complusions per day. So at at 8 she is spending 4 hours a day, with 1/2, so 2 hours last night, doing the compulsiosn at night before going to sleep.

[Burnell]

Hi Burnell-

 

I am sorry to hear that that symptoms are returning, but I do want to put a slight positive spin on this - that you learned that IVIG did help quite a bit.

 

My son is doing quite well overall. Six months ago we had to hospitalize him due to severe depression. Today he is attending school and has friends and is happy. He still has some problems with fatigue and anxiety but he is well enough along that CBT can help him. No meds for depression or anxiety, but I have Dr. M's recommended dosage on hand if we need to ask the local doc to order it.

 

I would encourage you to see if your daughter has ANY immune deficiencies that would allow for insurance coverage for IVIG. I would also encourage you to see a doctor who understands lyme disease as they can be very helpful in selecting antibiotics. Also, if you have a choice of insurance at work, check into the IVIG policies of each insurance company. We were able to switch from an HMO with no out of network benefits to a traditional plan with national doctors that are "in network" (including Dr.B and Dr. M), and out of network benefits that cover most of our visits to other docs.

 

Best wishes to you - keep us posted.

 

Who wrote your ivig script and where did you have it done? I know Dr M and Dr T would only give a script. We saw Dr Smith in edison NJ and he will oversee the admin. At the NIH our dd 12 had a bad fever from it the 1st day. Dr Smith thinks she needs several ivig in a row. I have to wait till JAn 1st when I go on united health care, cause I believe they cover ivig for pandas.

[eljomom]

burnelll-----sent you an e-mail...