rhyanen Posted January 12, 2012 Report Posted January 12, 2012 So it looks like we're at a dead end. No hope or diagnosis in sight. Son is still having tics, sexually inappropriate behavior, and ocd. DAN! doctor won't treat because it doesn't jump off the page as pandas. Anti-dnase positive, ASO negative. Don't know what to do or where to go from here :-( Cannot get into a neurologist soon enough...the waiting list is really long.
PowPow Posted January 12, 2012 Report Posted January 12, 2012 can you see a PANDAS doc? i know the wait & cost is dreadful..
Ozimum Posted January 12, 2012 Report Posted January 12, 2012 Did the DAN propose any treatment at all? If not I'd be looking for a new DAN! or integrative dr. Like most things there are good ones and not so good ones... I'd also be trying to get in to see one of the PANDAS drs asap. Hang in there!
SSS Posted January 12, 2012 Report Posted January 12, 2012 I agree about your DAN Dr. So many DAN Dr.'s know about PANDAS. I used to have a DAN Dr., I made a presentation (long list) about why my dd6 fit PANDAS to a 'T'! He agreed, so to start and 'see' we did a 1 month trial of Azithromycin daily, and ibuprofen daily, with me taking copious notes. Your DAN sounds disappointing- I'm sorry :-(.
rhyanen Posted January 13, 2012 Author Report Posted January 13, 2012 I think I'm going to try motrin and see if there is any improvement. What is the recommended dosage? Btw, we're in NM, so not much here in the way of other DAN doctors or integrative medicine. Seems NM is a little delayed in the way of medicine.
T_Mom Posted January 13, 2012 Report Posted January 13, 2012 rhyanen--so many of us have begged our pediatricians to just "TRY" a 30 day trial of full strength azithromycin or amoxicillan, or 10 days of one and then beg for a switch if there is no 'glimmer' of hope. 30 days is a VERY benign trial -- and IF then your child responds that speaks volumes more then any blood test can. I would go to the "helpful" threads post at the top of the forum, or to Pandasnetwork.org and print up as many articles as I could carry in a folder to the doctor when you ask for this, along with the phone numbers of Ps knowledgeable doctors -- Have you had a consult with anyone that has ever treated Ps? Again, if this is Ps, and you treat--there should be a response.
EAMom Posted January 13, 2012 Report Posted January 13, 2012 (edited) I think I'm going to try motrin and see if there is any improvement. What is the recommended dosage? Btw, we're in NM, so not much here in the way of other DAN doctors or integrative medicine. Seems NM is a little delayed in the way of medicine. Why don't you send Peglem a pm? She's in Arizona, 1 state over and I think she might be able to give you some info on docs. Also try Tapiash, she's in NM too http://www.latitudes.org/forums/index.php?showtopic=8279 Edited January 13, 2012 by EAMom
norcalmom Posted January 13, 2012 Report Posted January 13, 2012 Is this the first or second time your child has had a really bad spell (and exacerbation?) I'm asking because you may be able to get into the study with Dr Swedo if they are still recruiting - and get the best possible care for your son free of charge, from the top pandas reaserchers in the country. You should at the very least call them, see if you qualify. They pay travel. D-nase positive tells you he had/has a strep infection. You have to be willing to do the IVIG, and they can help you decide if things are bad off enough for that to be the best option at the point you're at.
tpotter Posted January 13, 2012 Report Posted January 13, 2012 (edited) I agree with Norcalmom about the IVIG study. They will do all the testing for free. If that doesn't work out, can you get an appointment with Dr. L (in MD.) She is a pediatric neurologist and PANDAS specialist. Sexually inappropriate behavior can be caused by temporal lobe seizures, so I would want to rule that out, but my guess is that most neurologists are going to blow you off and/or even if it does turn out to be a seizure, may not be epileptic, and then they don't know what to do. My DS has this exact situation, and since Dr. L. started treating him appropriately, the latter is no longer a problem. She does think it may be due to PANDAS, though. Edited January 13, 2012 by tpotter
hugs2day Posted January 13, 2012 Report Posted January 13, 2012 My son's DAN is licensed in NM. PM for contact information.
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