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Advice on treatment for PANDAS


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Hi Can anyone give me any help with my daughter? About 2 months ago she had a sore throat. Then about 5 weeks ago she overnight developed a facial tic. Blinking, eye rolling and (slight) facial grimace. We took her to the doctor and asked for a strep swab, however he thought she could have an allergy (because her eyes were itchy and sore) and gave her eye drops. These hurt her eyes, however we continued for a few days and then stopped using them. The tics continued and became quite close together, about every 10-30 seconds apart. My husband took her to the hospital. They swabbed her throat , did and EEG, MRI, and attempted 2 lumbar punctures(unsuccessful). After 2 days, diagnosis was PANDAS, neurological tic, exaggerated by Strep. (Prior to this, since young, we noticed that when she watched TV she would raise her eyebrows, and somtimes blink slowly). It seems as if the strep could have accentuated this mannerism. She was put on a Penicillin drip for 24 hours. After 12 hours the tic seemed noticeably improved, down to about 6 minutes apart. We were discharged from hospital with Penicillin V 500mg 2x daily for 10 days. Not sure if this worked (as we later found out, she should not have taken the capsules with jam(to make it easy to swallow)). 9 days after starting the Penicillin she got a fever, sore throat, stomach and vomited. The tics worsened. Back to the doctor who prescribed Amoxicillin Duo 400 2x daily for 6 days. She improved slightly on the first couple of days, then went on camp, where the medicine might not have been kept cold enough. Anyway after 2 days at camp the tic was bad again.She finished the medicine, but the tics remained. We took her to the doctor for a checkup 7 days later(her eyes were itchy and sore again): under advice from the hospital, she was put on Amoxycillin 400mg 3x daily. She has been on this for 2 days and has seemed slightly better at times during the day, but then worse in the sunlight and watching tv. Today the tics have been as far apart as 5 minutes, but then close as 15 secs as well. I am wondering if this may be a photosensitive thing not PANDAS. When they did the EEG in the hospital, every time the light went in her eyes, she blinked and rolled her eyes. In the bright sunlight, watching tv or in bright artificial light the tic gets worse(closer together). She has never been vaccinated, or needed to visit a doctor before, so feel she had a strong immune system. Should we keep her on the antibiotics. We feel maybe we should give her a chance to heal somehow without more antibiotics. Has anyone had any results with alternative therapies? Has anyone heard anything about light sensitivity? Can we get her swabbed and tested for strep while she is on the antibiotics?Any help/ideas would be greatly appreciated. Thanks.

 

 

 

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mrgu-

 

Welcome to the forum. It sounds like you have been through quite a bit in the past few weeks. PANDAS/PITAND exacerbations are triggered by some type of infection or inflammation (it does not always have to be strep). These infections or inflammation allow antibodies to cross into the brain and interfere with the functioning of the basal ganglia of the brain.

 

The first thing to try is antibiotics, but if/when these do not bring quick relief then you need to move on. I think I speak for many of us on this forum when I say that we needed to find a doctor who truly specialized in PANDAS before our children received proper treatment. The pinned threads at the top of the PANDAS forum contain information on doctors in various areas, or you could give an idea of the area in which you life (if you are comfortable doing that) and folks can send you a private message about their experiences with doctors in that area.

 

It is important to get a good assessment of your child's immune system an check for strep (ASO and Dnase B), mycoplasma, and lyme, and also get a good immune status panel including the 14 s. pneumonia titers, and IgG and IgA levels with sub classes.

 

This assessment can help you know if you are fighting something other than strep- and what antibiotic might work best.

 

There are other medications and supplements that can be tried beyond antibiotics, so don't give up!

 

Poke around on this forum and you will learn a great deal. The people on this forum have been a lifeline for me!

 

Best wishes -

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I would recommend that you try the spinal tap again and insist on sedation. If your child is sedated the spinal tap should be no problem. It is important to get that spinal tap to rule out different types of encephalitis, including NMDA encephalitis. PANDAS is a type of encephalitis but there are others that can only be found via a spinal tap. It is that facial grimace that has my red flag going up.

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