ptcgirl

I just spoke to dr b about adults with Pandas. He is te one I woul turn too. I wonder if a lot of adults with OCD are really suffering from the effects of infection.

So sad that they don't even know about it. Frustrating!!! My daughter is weaning off Abilify. It really helped her but the side effects were far too intense.

Babesia is another co-infection that can cause issues too. Good luck on them testing. Most places will look at u like you've lost your mind. Has he had any abx lately? Any noticeable differences?

Most doctor want the diagnosing doctor to do the prescribing. I think legally it is protective for them to do so. This has been our experience as well. We've had more success having the pharmacy fax the doctors office to update the refill than by trying to hunt down the doctor ourselves. They respond better to them it appears.

I can so relate to that analogy. My child has Pandas and I was SO worried about treatment that we did everything else. Now, five years later we are finally getting to the bottom of it. Fear and lack of knowledge. Awful.

Just did it! Thanks for posting!

You too!!

Very helpful advice all around. I talked to dr b tonight and am feeling more confident about Ivig. I know I will likely be on here screaming a few weeks from now but if long term it cures.... That would be a wonderful gift from God.

Zoloft was effective for my daughter for a while. Now it doesn't seem to work well anymore. Added in abilify. Life saver and huge mistake all at the same time. It really helped her come back to us but the side effects are awful!!! Weaning off it now. Good luck.

I fax requests and they are great about faxing back lab work. At least so far....

We had a very similar story after my daughters t and a. She was great for nine months then BOOM! Came back but without strep. Lyme, sinus infections, etc. Augmentin is the biggest help for her as far as abx. We r about to start Ivig so I'll keep u posted on that.

Okay, maybe this is a stupid question, but why does IVIG sometimes make it worse for a while? Is it a herx? Has anyone asked one of the doctors about this? My daughter is having her first one on Monday and I'm pretty worried about what it is going to be like for her. She did have Lyme (along with Babesia and Bartonella) but went on 4 abx at once (along with a herbal supplement). She herxed BIG time. Couldn't get out of bed. Pain all the time. OCD/tics were worse. Awful. Afterwards, the pain and fatigue improved but never restored her mind to previous state. Last igenex showed no lyme bands at all or co-infections. Her immune system is worsening (according to tests) and both LLMD and Dr B think IVIG will work. I sure hope we don't regret doing it....

I'm waiting on my hubby to read it too. LOL!

I haven't read out of the fog into the light. I will find it today! It is so helpful to read other stories about this.

Thank you so much for sharing your story. My daughter is having Ivig on Monday and I'm so hopeful that it helps. I hope u find someone closer. Could she go to a cancer center and have it done under the prescription of dr k?

I just finished this book and really enjoyed it. I agree that it was much more like my child than Saving Sammy (although I am glad I read that one too). Thank you so much for recommending it. I also am recommending it to family members and friends.

My daughter's first IVIG is next Monday at Dr. B's office. I'm hoping that you will get lots of responses as I need the advice too. Good luck to you and your son!!!

I know how scary it can be when you first start your child on longer term antibiotics, but I really trust Dr B. Hang in there.

My daughter had 9 glorious months of completely 100% normal symptom-free and drug-free life after having T & A removed. Then it all came rushing back with Lyme and sinus infections. I'm thrilled she had this time to have a childhood again. I wish it were longer, but I would do it again. Absolutely. Good luck with your decision. : )

It is a blessing and a curse. Those nine months were great but I lived in fear that it would come back which it did eventually. I guess it does solidify Pans in my mind though. My pediatrician, after it came back,said it most not be pAndas since she didn't have strep. We've since moved on to a different doctor. I feel like I should send copies of all the latest reaearch that shows it isn't just from strep. Doubt she'd listen though. Some people can't stand to be proved wrong.

OCD does not cause people/kids to act upon their thoughts. This was taking from the OC Foundation site, fourth paragraph: http://www.ocfoundation.org/EO_Violent.aspx "It is important for sufferers to understand that the thoughts are just thoughts, and do not cause anxiety, but rather the anxiety is caused by the views sufferers take of the thoughts. They need to overcome the idea that, "If I think it, it must be real." It should be noted that people who suffer from these thoughts have no history of violence, nor do they ever act out on their ideas or urges. Although OCD can project extreme and bizarre thoughts into people's minds, it is not the thoughts or the anxiety, as much as people's solutions to having the thoughts that represents the real heart of the problem." It is very common for OCD/PANDAS kids to have these thoughts. In fact it is normal for ALL of us to have these thoughts. The difference with an OCD/PANDAS kid is the thought gets stuck which scares them. Please reassure your child that he will never hurt anyone.

I've had very few issues with his staff at all. I use my fax machine as a means of getting lab results. I fax over a signed request and they fax it back generally pretty fast. I had a phone consult with Jennifer this month which answered many questions. I have one set up with Dr. B next month. The nurses have an email which is very helpful to me too. The office gave it to me or maybe I found it on the website; I can't remember where I got it. I hesitate to give it out in case it is no longer being distributed. So far, very responsive on all accounts.

Yes, lots of stomach pains during a flare here. But diarrhea not constipation.

My daughter's tsh is roughly the same. She's now been to an endocrinologist who still doesn't see a problem. Just another puzzle piece....

My daughter had them out when she was 9 and went to school on the third week following. She had IV antibiotics. It was like a miraculous recovery. She no longer needed any meds (previously she was on zoloft) and had zero symptoms. She was completely normal. 100% .... for 9 months. Now we are back to square one. Lots of meds (zoloft, abilify, abx, etc) and very symptomatic. Having first IVIG done in May. Hope it is the magic bullet. Also, having CBT done in FL with Storch's group. We'll see. But, in answer to your question. It was great to have the t & a removed but only for 9 months (but the were a WONDERFUL 9 months). Hope this helps.