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[BeckyR]

My name is Becky, I live in North Dakota, just had a phone consult with Dr. Kovacevic on Wednesday 9-29 regarding my 6 yr dd. About a month ago, she had sudden onset of OCD. My 13 yds had sudden onset of OCD at age 8. Have always been told by psychiatrist that his OCD isn't PANDAS. When dd started a month ago, I started to re-think. Had her ASO titers, etc. done. All normal. Dr. K. still thinks she has it though based on her history, although he thinks it started a year ago. We are going to try the 5 days of prednisone as soon as I can get in touch with her pediatrician to prescribe it. If this works, he recommends IVIG. Ugggh. Don't know if anyone in North Dakota does IVIG and I'm sure its not covered. Interestingly, he was more concerned about 13 yr.old and I gave him a brief history. Son has not had ASO titers, etc. done. He wants them done, but I think they are a waste of time since her showed nothing...and he has been sick for 5 years already. He encouraged me to think about IVIG for him quickly because success goes down after puberty. DS already in puberty...so not sure $14,000 worth of treatments are worth the risk of not working.

 

Are there any longitudinal studies regarding this? Does it cure their OCD? I have so many questions, and so little time to figure this out (in the case of 13yr old anyway). Anyone know of any clinical trials we can enter to help pay for it?

 

Lots more questions than answers,

Becky in North Dakota

[T_Mom]

Hi Becky, and welcome. I am sorry you have had to find us here--but this forum has been a very real help for many of us here--and I hope it provides the same kind tone, incredible support, and information for you.

 

First, I assume you have found the info. on the forum under the Helpful Threads post on the Pandas forum page? A website that I find helpful is www.pandasnetwork.org

 

Many have seen or consulted with Dr K and would be happy to share their personal experiences. You can ask here or personal message the person, and this can help if you ask to speak with them by phone as well.

 

I know your feeling of "running out of time" -- Many times I have to force myself to take a deep breath, to hold steady my own thoughts, and to then plot the course, step by step. My only suggestions would be to actually talk to a few people who have been in your place and to read (as you have) in order to make the decisions the best you can--that is truly, what we all are trying to do--

 

re: possible clinical trials, check the NIH website to see if/when something may be posted--or call Dr P.Grant (at NIH) to ask.

Edited October 1, 2010 by T.Mom

[EAMom]

Here's the FAQ thread:

 

http://www.latitudes.org/forums/index.php?showtopic=6266

[EAMom]

By the way, you mentioned titers, but did you do throat cultures (do the 72 hour if the rapid is neg) on your PANDAS kids? I would also rec. culturing all other family members to check for carriers.

 

Also, there are some of us on this forum that were able to get IVIG covered by insurance.

 

You might also consider (if this hasn't been tried--but get the cultures first) putting your kids on 1-2 months of full-strength antibiotics (something like Augmentin or Azith., not amoxicillin) to see how that impacts their symptoms. But, I would tend to agree that esp. with the older child, you don't want to muck around for too long.

Edited October 1, 2010 by EAMom

[thereishope]

Is your child on any antibiotics? If not, I would have that child on antibiotics, especially if doing a steroid burst.

 

Finally, as for titers, swabs and such...those are not always reliable. And as for PANDAS, it is not a diagnostic test for PANDAS. PANDAS still remains a clinical diagnosis. There is research being done that is the closest thing we have to a diagnostic test, but again, it is till in the research phase.

Edited October 1, 2010 by Vickie