New patient, abx but no change

[tpotter]

Thanks guys. Dr L stated that we would likely see some improvement "in a few days". (I really wish I could have spent more time at her office asking questions etc, the traffic was awful in NoVa and she was late and running behind. ) I am impatient. And more than that I am worried that its something other than Pandas, perhaps bipolar, or oppositional defiant etc. While my daughters initial symptoms were very Pandas-like, she has more of the hyperactivity and volatility now than the OCD, Tourettes, so that makes me question things. Plus I never get much sleep with the constant wakings and request to sleep with her.

 

Again thanks for the information and advice!

Do you have a followup appt. scheduled with her. I would highly suggest that, at least in the beginning, you schedule one every month, because it will also be the only way she can assess what is working and what isn't. My DS appeared to have bipolar...was tried on several different bipolar meds, and ended up with PANS. We did find, though, that azithromycin and augmentin XR (not together...just 2 separate times) were what worked for him. Clindomycin was another good one. My younger DS and I take rifampin, but along with other abx, as well, since we are treating bartonella and lyme. I would certainly rule out that there aren't other infections and triggers, though, such as lyme, bartonella, babesia, viruses, mold, etc. Many of us have found that it is crticial to find what else may be going on, because remember, as an autoimmune disorder, the child is going to be susceptible to more than one thing, and may have difficulty detoxing...getting the infections and other triggers out of his/her body. Also, if you aren't already, make sure that you are really, really protecting the gut with proper probiotics. This is critical, as about 80 - 90% of the immune system is now believed to be through the gut. The last thing you want is to have problems with the gut. PM me if you want more detailed info, and suggestions as to where to go from here. BTW...we see a good LLMD in Maryland...not too far from northern VA. PM me if you want more details.

[TinyTreasures]

Yes, the cream is called EMLA! My 3.5 year old had to have blood drawn 4 times over the past several months. The first 2 times he just sat there happily and ate a candy bar - the cream works wonders.The 3rd time the nurse said "just a little poke" which freaked him out a little even though he couldn't feel anything, but he still did great. But the next day we had to come back for the last draw (a lot of tests and they couldn't take all the blood in the same day) and he was VERY upset because he remembered what the lady had said about him getting a poke. We had sat 1.5 hours in the waiting room, and by that time the EMLA had worn off so he definitely felt it. It was heartbreaking but I knew it was his last draw and he got through it.

 

Ps - we are on day 18 of abx and just today finally saw major improvement! 13 days of Azythromicin, now day 5 of a 90 day prescription of Keflex.