To change or not to change doctors

[cobbiemommy]

DS, 15, is maintaining at this point, going to school, getting pretty good grades with the help of a study hall session during the day. He competed in two sports this year and while he was on the team, I would not say he was part of the team. He has trouble focusing and remembering math concepts. He can't put names with faces and he can't figure out the bigger picture (strategy, field positions, etc) in his chosen sports that he practices really hard at. He does not want to go anywhere after school or practice, he just wants to play video games, etc. He makes facial gestures and it looks like he is giving you the "death stare", but he seems genuinely surprised when you call him on it. He also has vocal tics and some echolalia.

 

All of those would be minor things, but his personality is mean, crabby, irritable, snappish, etc. Soooo, if anyone tries to help him, he bites their head off. He thinks everyone is a jerk and out to get him. Needless to say, he has no friends.

 

His dad is a funny guy but extremely driven and hardworking. Those traits do not mesh with my son's current personality. I feel like we are all having to change our personalities and actions, so as not to provoke a response from my son.

 

Our current Dr understands PANDAs and treats with IVIg or steroids and prophylactic antibiotics. He has prescribed oral steroid tapers for DS, but the steroid dose has never started above 40 mg and the benefits quickly wear off. Under a previous doctor's care, he received IVIg and IV steroids with very good effects. Dr. says he is doing well in school, doings sports, that this might just be a residual thing.

 

My mother's intuition says there is still something wrong. He flares after any illness, had a horrible response to Intuniv, and quite honestly he is not doing as well as I know he has in the past (which this doctor has never seen). Also, he still has loads of anxiety.

 

Thanks for letting me rant/vent. I know the parents here will give me a reality check.

 

 

 

[riffleshell]

Are you using any supplements? I personally find supplements to be helpful with behavioral stuff like you are describing.

[bigmighty]

Are you doing round-the-clock ibuprofen when not on steroids? Even NIH gave us permission to do that w/DS for a full month, and it really helped. But if it were my kid and I knew IV steroids would bring him back, I'd be out seeking someone willing to administer, and who would let you fill prescrips for antibiotics and steroids that you can start at will if you see symptoms re-emerge.

[rowingmom]

You've treated bartonella, right? With all those psych symptoms I would suggest that bart may be involved.

[MaryAW]

I agree with Riffleshell about supplements. Getting my DD's vitamin D level to between 50 and 80 ng/ml gave us huge benefits. Then adding the Omega 3s gave us even bigger benefits. We also have her on Zyrtec which seems to help a lot, as allergens can cause a flare too.

 

 

We made the trek to Florida this past December to have an appointment with Dr. Murphy at USF. Wow! She is amazing - so intelligent. It cost a lot of time and money, but we learned a lot. I would definitely recommend seeking another doctor's advice. Especially a highly regarded PANS doc.

 

I would also recommend going to any PANS/PANDAS conference you can. There always seems to be time to talk with top docs during breaks. I went to the one at Brown last weekend and was able to ask both Dr. Swedo and Dr. Murphy questions. they were very gracious with their time and expertise.

[cobbiemommy]

DS, 15, had a major meltdown in math class today at school. It was bad enough that the school counselor called me and the teacher emailed me (what joy). He just finished a round of Augmentin XR for a sinus infection. Sound familiar??? He previously flared about a month ago after a viral infection, which is what later led to the bacterial sinus infection...

 

Anyway, DS, was treated for two years for Bartonella. He received three months of IV abx for Lyme. He is currently on rotating prophylactic abx of Ceftin and Amoxicillin. Like many other children here, he got an infection while on preventative abx. He has very few antibodies for strep, despite receiving the Pneumovax. He has some, just enough to be denied by insurance for IVIg.

 

We are doing round the clock Advil and headed back to the immunologist on Monday.

Edited March 27, 2015 by cobbiemommy