Closdtridia or PANDAS

[Wilma Jenks]

Pdoc. has my child on seroquel to get her to sleep. The stuff is getting her depressed. A bit worrisome. Anyway... I was trying to figure out why this kid never falls asleep at night. Weather its the clostridia or PANDAS. When I treated with Vanco. for clostridia, I saw her get much less psychotic (but not tired), and the OCD got severe at night. So I am thinking that the OCD is what is keeping her up and its related to the PANDAS. In which case, until I get some IVIG, I may not see any improvement with this severe OCD and NOT sleeping. My problem is, is that I have read on some posts... that the one thing IVIG DOES NOT help with is the OCD. Is this true in most cases? I am getting a second opinion from Dr. B on the PANDAS thing and we are moving towards the IVIG, but not completely sure that is what we are going to do.

[laure]

Pdoc. has my child on seroquel to get her to sleep. The stuff is getting her depressed. A bit worrisome. Anyway... I was trying to figure out why this kid never falls asleep at night. Weather its the clostridia or PANDAS. When I treated with Vanco. for clostridia, I saw her get much less psychotic (but not tired), and the OCD got severe at night. So I am thinking that the OCD is what is keeping her up and its related to the PANDAS. In which case, until I get some IVIG, I may not see any improvement with this severe OCD and NOT sleeping. My problem is, is that I have read on some posts... that the one thing IVIG DOES NOT help with is the OCD. Is this true in most cases? I am getting a second opinion from Dr. B on the PANDAS thing and we are moving towards the IVIG, but not completely sure that is what we are going to do.

 

 

Hi Wilma,

I am wondering if you received your Igenex results and what those interpretations were?

[Worried_Dad]

My problem is, is that I have read on some posts... that the one thing IVIG DOES NOT help with is the OCD. Is this true in most cases?

 

Huh - this wasn't our experience, Wilma, or what many other parents / clinical experts have reported. Dr. K always told us that IVIG was generally more effective for PANDAS kids where OCD was their major symptom, while PEX was generally more effective for kids where tics were the major symptom. Our son had severe, debilitating OCD (and constant all-nighters, terrible sleep problems) before his 1st IVIG. We saw dramatic improvement in both OCD and sleep within the 1st 2 weeks following the procedure.

 

So - certainly every child and every experience is unique - but I believe there is lots of evidence that IVIG can help significantly with PANDAS-related OCD. Don't give up hope!

[Wilma Jenks]

Thanks so much. Yes, Ingenex is due in the week. I am CAN'T WAIT!!! I will let you know right away what I find. Thanks!!!

[mkur]

Have you checked her B12 levels? This can cause mania. Something else to rule out.

Seratonin is involved with sleep regulation. IVIG has helped my son with sleep patterns.

 

see http://en.wikipedia.org/wiki/Mania to get you started on more research

 

He was born a long sleeper - 12 hours and still is. Has anyone read anything about this?

[Phasmid]

Wilma, we saw improvement in my son's ocd (which was really mild) with even low dose ivig.

[trggirl]

I second the B12 suggestion. Definitely something to rule out.

[Wilma Jenks]

Dr. T. checked the B6 and other things. I am pretty sure the B12 was on there. All looked normal...as usual. The only thing not normal was Cunningham test 166....Oat test showed Clostridia and an abnormal EEG. No seizures though. We are headed towards the IVIG, after a second opinion with Dr. B, and hopefully he can get it covered by insurance too.