dd7 update & another inositol question

[KaraM]

HI,

 

In the middle of March, before I got our Cunningham tests back and was confident about a PANDAS diagnosis and before starting Zithromax, I started giving my daughter inositol. By the end of March, it did seem her symptoms were starting to improve (or we could have coincidentally having a couple of relatively good days). At the end of the month, her Cam Kinase II came back at 189. March 30th, we started her on .75ml of Zithromax for 5 days and are now doing .375 prophylactially until we have an appointment with Dr. Fuhlbrigge to determine next steps. Since starting the Zithromax, her symptoms have definitely improved, although they are not gone altogether. She seems to have stabilized. We rank her days 0 - 5 (0 would, if it ever happened, be no fear). She's been hovering around a 1.5 - 2.5 She's been able to overcome some major obstacles and achieve some big milestones without any new fears taking their place. If she does start to have some sort of panic, it usually subsides much more quickly than in the past.

 

My questions are: Are the same serotonin issues present in PANDAS OCD as in genetic OCD or are the OCD behaviors in PANDAS children caused by the inflammation? Does it make sense to give the inositol to PANDAS OCD children? Should I discontinue it and see where things go from there? Would it make more sense to replace the inositol with fish oil or something else to help the inflammation?

 

I appreciate your thoughts.

 

Thanks,

Kara

[LNN]

Glad to hear you're seeing improvements!

 

Only you and your daughter can decide if it's right to stay on inositol. But if you do decide to stop, be sure to taper down, don't stop abruptly.

 

Our experience is that inositol helped regulate the amount of seratonin, which is also the problem with traditional OCD. The difference is more that once PANDAS goes into remission, the body is able to regulate the seratonin on its own and you don't need the inositol.

 

Not sure if you've been doing any ERP, but if not, now would be a good time to work on things. Now that your daughter's fears aren't crippling, she may be able to face her fears and get some success under her belt. It's a good confidence builder for both of you if you can know she can learn how to be the boss of her own feelings and not let OCD be in control.

 

For us, the inositol helped us thru the worst, but the ERP has helped with long lasting results.

 

Laura

[momaine]

If I understood our doctor correctly, I believe he was saying: PANDAS kids' dopamine is unregulated. It goes up, it goes down. Those changes cause things like the shuffle my dd does when she walks. (And I'm assuming all the repeating she does in other areas) People with Parkinson's disease have too low dopamine. That causes their shaking.

 

The SSRI's increase seratonin which can make the dopamine issues seem less severe(OCD less severe) but it doesn't treat the real problem of unregulated dopamine.

 

Hope that helps.

 

Angela

[parents4eyes]

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Edited September 9, 2010 by parents4eyes

[KaraM]

She was already on the fish oil along with many other anti-inflammatory supplements for another inflammatory condition. He commented that she was on a very good anti-inflammatory regimen. So I would conclude that fish oil would be in addition to not a replacement of inositol.

May

 

Thanks May, Angela and Laura.

 

May, if you don't mind my asking, how old is your daughter and how much does she weigh? How much fish oil do you give her? it sounds like your daughter has some other issues beyond the PANDAS, did your doctor say he would have suggested less for PANDAS alone? If you'd rather not post this info, please PM me.

 

And questions for anyone, does fish oil come in a powder or liquid form or only capsules (that's all I've ever seen)? Can you suggest other anti-inflammatory supplements I should investigate, consider?, Right now, I do give her some ibuprofen but would love to replace that with a more natural, less toxic, more healthful alternative.

 

Thanks again,

Kara

[KaraM]

Just saw the fish oil post and that it does come liquid...

[momaine]

Something to look into might be MSM. I take it for its anti inflammatory properites to help me with arthritis and back issues. I've thought about using it with my dd for inflammation but didn't want to add one more thing that I wasn't sure of. might be worth asking your pandas doc about.

 

Angela

Edited April 20, 2010 by momaine