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Updated March 19, 2010
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Updated March 19, 2010
Thanks for the suggestions. We live in IL - because of son's resistance to movement we are afraid to travel - to get him to hospital we had to tie him in - very difficult with a 16 year old. Someone asked about abx - he took Augmentin 875 mg for a month and Azithromycin 500mg for 2 weeks. Asked Dr. K about using higher dose as in Saving Sammy but he says he hasn't found it to be effective. Have had regular blood test for Lyme and also checked in spinal fluid. Have not done IGeneX but I assume because of recent IVIG we need to wait - how long? Someone asked about dose of IVIG - I think it was 1.5g. I had heard of Awakenings but didn't know there was link to PANDAS. MRI and spinal tap showed no signs of encephalitis but doesn't totally rule out. 5 day steroid burst (50 mg prednisone) didn't help. While we wait to see if IVIG is effective, does son need to be on prophylactic antibiotics? Does anyone know if treating zinc deficiency helps or hurts? I read somewhere that supplements that boost immune system can aggravate auto immune response? Has anyone dealt with low ceruplasmin? Read on Wilson disease forum that it is sometimes seen in PANDAS. Son doesn't seem to have Wilson's Disease (24 hour urine test ok and no KF rings in eyes) but don't know for sure without doing liver biopsy which is quite invasive. Trying to decide whether to follow low copper diet. Its hard enough to get food in son without restrictions but will try if important. Tried gluten free, dairy free for month but saw no improvement. I appreciate all the caring comments - it gives me hope.
16yo ds has been catatonic for over a year. In 2009 had periods of being "stuck in thoughts" - couldn't describe thoughts but couldn't concentrate to do schoolwork or participate in social activities. Counseling and SSRIs didn't help. Went to Pfeiffer Center (nutritional treatment). Blood test showed zinc deficiency and low ceruplasmin (but 24 hour urine test and eye exam showed no KF rings so Wilson's disease ruled out). After about a month of high zinc supplements, ds developed a movement disorder (looked like Parkinson's for about a week, then one neurologist thought it was complex motor tics and other chorea). CT scan, MRI and EEG normal. I asked for ASO test even though we couldn't recall a strep illness because ds admitted some previous OCD rituals and "stuck in thoughts" symptoms happened for about a week out of every month. Result was borderline high but neurologist said that didn't prove anything. End of 2009 was good; then Jan. 2010 ds became much worse - had trouble talking and eating. Went to Dr. K - DNASE B very high and mycoplasma also elevated. Tried prednisone, augmentin and zith - no improvement. While considering IVIG (Dr. K unsure whether it would help because of son's age and lack of response to steroid burst), tried some herbal and homeopathic remedies. Ds got worse - lost bowel and bladder control; eventually couldn't eat (had to be syringe fed), couldn't talk or move. When we tried to make him move, he fought us. Eventually he wouldn't be syringe fed. Took him to ER - diagnosed as catatonic, a rare condition of unresponsiveness - spent a month in psychiatric hospital. Ativan helped but Risperdal given too because Catatonia is tied to Schizophrenia in DSM - newer thinking is its more often associated with mood disorder or physical condition. wWent to another doctor and found out atypical antipsychotics can worsen catatonia - ds weaned off Risperdal but had developed tolerance to Ativan, losing effectiveness. Ds hospitalized again - Electroconvulsive Therapy was recommended - had to go to court because of state law. Ds almost got better with ECT but then relapsed. DNASE B and mycoplasma titers have stayed high although came down a little (ASO normal). Since then many tests have been done including spinal tap. Consulted DAN doctor -ruebela titer slightly high at 69; otherwise everything has been normal. Haven't done IGENEX. Finally last month Dr. Cunningham tests came back (abnormal CaM level, normal antibodies) and now IgG level is low - doctor decided to try IVIG - did it for 2 days about 10 days ago. So far ds is somewhat worse but we know it can take weeks for IVIG to help. Doctor wants to do another psychiatric drug - Bromocriptine because concerned catatonia is getting worse and court order for ECT will run out in a few weeks; ds is already on 8mg Ativan (we're very worried about that high a dose) as well as Tegretol (mood stabilizer) but going off can worsen catatonia. We're trying to walk balance between DAN doctor who is recommending various supplements but has no experience with catatonia and neuropsychiatrist with experience with catatonia but not with PANDAS and is suspicious of anything alternative. Have read on forum of some severe PANDAS patients with a catatonic like encephalitis who respond to high dose steroids - don't know if thats the same thing we see - imaging is normal and steroid burst didn't help; if anything made it worse. Does anyone have experience with PANDAS and Catatonia?