Need Help

[lulu4]

If you are worried about the ibuprofen, an alternative is turmeric, as one person mentioned above.

I buy turmeric capsules. Then I take off the top part of the capsule, tap out the turmeric that's in that small cap, and refill it with ground black pepper. Then I put the pepper filled cap back on the turmeric capsule. Black pepper with the turmeric has been found to make the turmeric many times more effective at fighting inflammation. If your son would take this, I would give it 1-2x/day. Also, giving during a meal that also includes some olive oil can increase the digestibility, I believe.

My dd improved so much after IVIg, but she still takes an SSRI. We tried to wean her off of it. I finally came to the conclusion that if she is on that for years straight, if it helps her, then so be it.

I wish you the best in getting relief for the inflammation, behaviors, and I really hope you can find a doctor, first of all to get the right combo of abx( and steroids, if needed) and then who will help set up IVIg if that is warranted, which to this mom, sounds like it is.

All the best--

[Newfie]

Hi Mary Angela,

   Thank you for your response.How is your son doing now?I was just wondering what dose of augmentin did he take that was effective and also was it augmentin xr or just the regular one.My sons psychiatrist gave me a 30 day prescription of azithromycin to try ,after 17 days I did see a decline in his tics,no change in ocd then he got a cold and tics returned .His pediatrician and psychiatrist refuse to give him anything else other than Prozac which he currently takes 40 mg.I am waiting for a referral to see an infection control specialist and a neurologist but I’m not hopeful they will do anything for him.My husband wants to take him to the states and see a specialist there but I want to hold off and see if we can get some sort of treatment closer to home and less expensive.

[MaryAngela]

The first time he was put on antibiotics for PANDAS, he had a liquid, and I’m not positive of the dose, but remember it was 3x daily...I believe the equivalent of 500 mg 3x daily. It was not the XR. The following 18 months, we had some success on & off with antibiotics...Augmentin (875 mg 2x daily) and Clarithmycin.  He started monthly HD IVIG recently.  So far he’s been getting about 90% better after IVIG, but starts tapering off after 24 days.  He has another IVIG this Sunday / Monday.  Hoping the results are lasting this time...at least until the following one.  Again, he was almost symptom free for over 3 weeks immediately following the last IVIG.