saidie10 Posted May 13, 2010 Report Posted May 13, 2010 mom here in panic and crisis mode. my ds5 will be seeing somebody before the end of this week. in don't care where i have to go or what i have to do. ds7 whom all of this started with is ticcing more, seeing some different OCD coming out with him. oh but doctors who don't believe, i guess this is all just a coincidence that ds5 tested positive for strep a week ago.
kimballot Posted May 13, 2010 Report Posted May 13, 2010 It is good that you are on top of things and know what to do. The earlier you get a diagnosis and help the better. Hang in there!
saidie10 Posted May 13, 2010 Author Report Posted May 13, 2010 Trying to be on top of it. Thanks for the support. Immunologist in Houston at TX Children's first available appointment of new patients is 4/11/11...yes, that is 4/11/11. So, I have Pediatrician, and two Neurologists we have seen calling in referrals hopefully in order to expedite things. It is good that you are on top of things and know what to do. The earlier you get a diagnosis and help the better. Hang in there!
Stephanie2 Posted May 13, 2010 Report Posted May 13, 2010 (edited) Our doctor said that he caught his second son early at the age of 5. He started an antibiotic and a steroid at the first sign of pandas. He said that is what kept his son from progressing to the point of not needing IVIG, etc. I know you may have to fight for this, but be really proactive and you may be able to keep his pandas to a minimum... BTW, I know what it is like when they are both exacerbating at the same time. Pure h###! I panic and become completely paralyzed when they do that!! I am so sorry! Stephanie Trying to be on top of it. Thanks for the support. Immunologist in Houston at TX Children's first available appointment of new patients is 4/11/11...yes, that is 4/11/11. So, I have Pediatrician, and two Neurologists we have seen calling in referrals hopefully in order to expedite things. It is good that you are on top of things and know what to do. The earlier you get a diagnosis and help the better. Hang in there! Edited May 13, 2010 by Stephanie2
thereishope Posted May 13, 2010 Report Posted May 13, 2010 (edited) The title of this thread caught my attention. Is he having bad dreans? My son had scary ones and then his brain "ran with it" and he would think he was seeing things, convinced the dreams were real. It would take him quite awhile to fall asleep at night. Edited May 13, 2010 by Vickie
Chemar Posted May 13, 2010 Report Posted May 13, 2010 The title of this thread caught my attention. Is he having bad dreans? My son had scary ones and then his brain "ran with it" and he would think he was seeing things, convinced the dreams were real. It would take him quite awhile to fall asleep at night. I posted this on another thread but for those of you using Tagamet, do be aware that strange pre-sleep hallucinatory type "dreams" can be a side effect in some people my son had this some years ago and it was very alarming, till a pharmacist friend told me of this tagemaet side effect. he was on Tagamet at the time to help Crohn's symptoms stopped the tagamet and the ick "dreams" ceased immediately
saidie10 Posted May 13, 2010 Author Report Posted May 13, 2010 thanks for the responses. he is not on any medication. i believe we are in our first onset of PANDAS with him since his positive strep infection last Tuesday. the last two nights he has awoken with bad dreams and been able to go right back to sleep once Mommy goes in. however i definitely worry it will get worse quickly as new things are showing up every day. spent all day on phone and sending faxes...trying to get into an Immunologist in Houston ASAP. The title of this thread caught my attention. Is he having bad dreans? My son had scary ones and then his brain "ran with it" and he would think he was seeing things, convinced the dreams were real. It would take him quite awhile to fall asleep at night. I posted this on another thread but for those of you using Tagamet, do be aware that strange pre-sleep hallucinatory type "dreams" can be a side effect in some people my son had this some years ago and it was very alarming, till a pharmacist friend told me of this tagemaet side effect. he was on Tagamet at the time to help Crohn's symptoms stopped the tagamet and the ick "dreams" ceased immediately
dut Posted May 13, 2010 Report Posted May 13, 2010 hi - could you phone consult with one of the experts such as Dr Bouboulis or Dr Trifiletti?
dut Posted May 13, 2010 Report Posted May 13, 2010 Hi - my dd6 gets a lot of night terrors when in episodes. I find ibuprofen really helps (unless she is in the middle of a real bad episode and then nothing but treating and waiting for the episode to lessen will help).
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