question about azithromycin/steroids

[julie_2girls]

My daughter was diagnosed with dysautonomia last Sept. She has been showing symptoms of PANDAS but I have not been given a diagnosis. I wrote dr. K and he said based on the history it is very likely. Probably will end up doing a phone consult. I am spending time/money traveling to Virginia to see dysautnomia specialist - we return in February. Most of my energy has been on learning about dysautonomia - she fits this dx perfectly. All testing tilt, valsalva and breath test confirm dysautonomia. MRI and EEG normal.

 

well my daughter's ocd behaviors have been on the rise. She is 15. She has intrusive thoughts, separation anxiety, mild age regression at times, anxiety, fears and mild tics (just a coulpe like hair twirling/pulling and lip biting), anger with outbursts. All these symptoms come and go. Much worse at night.

 

The biggest most consistent symptom is largely dilated pupils and it is always when she feels bad. this symptom is also part of dysautonomia. She also has significant brain fog. she is moody for no reason. She is aware that her behaviors are not rationale. it really bothers her. many symptoms fit both PANDAS and dysautonomia.

 

My daughter went from being in 5 honor classes last August to now homebound keeping up with just 1-2 classes. She has poor tolerance to being upright due to the drop in blood pressure.

 

She has psoriasis, hashimotos, probable mast cell activation disorder, sig allergies with IgE over 2000, mitral valve prolapse and hx of strep infection in May 2010. Anxiety increased after that time.

 

Okay to my question. Our naturopath believes my daughter's problems stem from strep. She has had some neuroscience testing which pointed to strep too. her titers were normal the two times we checked last time last Sept 2011. Her streptozyme was just barely elevated - not sure what that means.

 

So i have been reading and decided to try azithromycin and steroids to see effect.her naturopath is not an expert but knows enough to try treatment. she also knows my daughter well and her sensitivities. My dgtr does not tolerate penicillin, my husband is allergic.

 

So we started azithromycin last Wed 250 mg 2x day first day and now 1x day planned for 10 days (with assumption we will go longer but just want to see what happens with 10 days). We added in medrol dose pack last Friday with taper due to believing all of this is an inflammatory response esp with her hx and our family hx of autoimmune disease.

 

Does this sounds appropriate? So far she is having worsening unreal feelings. Not much change yet. today is day 5 of steroid and day 7 of antibiotics. We are trying to hang in there with the side effects.

 

The is more to her history...biggest part is LDA immunotherapy last August triggered a worsening of all her symptoms which landed her in ER 6 wks later stuck in tachycardia. Dr had added in strep as part of the immunotherapy which probably was a bad idea. I was not knowledgable and was told it would help train her T cells and slow the molecular mimicry issues which was probable cause of psoriasis. The symptoms got so much worse after immunotherapy that it was easy to determine dysautonomia (POTS).

 

Sorry so long. It is hard to ask questions without giving history.

 

Also how much advil? I think it may help her she has always felt better taking it.

 

Thanks

[PowPow]

what is neuroscience testing?

[julie_2girls]

It is a lab test that measures cytokines, neurotransmitters, hormones to assist in determining what is happening. I do not understand it all. Your prescribing dr can discuss the finding with the doctor who interprets the results. That dr came back in Dec 2010 and said strep is suspicious in my daughter. She had all kinds of inflammatory markers that i can't begin to explain like IL-1B, IL-12, etc...all foreign to me. The point is we have been trying to do detective work for some time. I think appropriate to treat and see how she responds. we will most likely need to consult an expert with PANDAS. I am trying to learn what i can to share with our very open and willing to help naturopath.

 

My daughter most likely has MTHFR issues too. I have compound heterozygous for both MTHFR. She takes metagenics folate, b12 injections, and reduced form of b6.

[oivay]

In my daughter's case, we used clindamycin and a prednisone burst when she had a second bout of severe ticking/chorea and was unable to walk. She also had the wide "terror stricken" eyes, but this is consistent with Sydenham's. Within 48 hours, there was a noticeable improvement and she started using her walker and she just looked better. By 72 hours, she was almost walking normally without the walker. Within about 5 days, you'd never know she'd been so sick except for the hand/arm tremors. We also used a little valium. Within 7 days, she was boogie boarding in the ocean.

 

The prednisone did make her kind of "speedy" though....She started cleaning everything and alphabetizing all the bookcases.

 

It's my understanding that you can't go by the "absolute value" of the strep titres, but should instead be looking at the trends.....whether it is increasing or decreasing.