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help for my son please


Guest Finrussak
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Guest Finrussak

Hi

Just returned from peds cardiologist...well-known...my son with chronic Lyme, bad for last 18 months (unable to go to school etc) has recently developed symptoms suspiciously like my OI ( when he sits or stands he get sparkles and feels faint...his BP can drop to 95/54, and sometimes his heart rate goes up but not quite to the "limit" of 30 bps for POTS...)

ok the cardiologist took ekg and echo...thank God not arrythmia or other Lyme possible cardiac stuff...BUT when I asked him for tilt table...he said " everyone gets sparkles and Tilts are useless...I can make anyone faint" When we pointed out that fainting is not the be all or end all...what matters is what happens to the heart rate and BP...he shrugged.

I spoke with office of Dr Axelrad ( she was helpful in finding Dr Grubb for me) she does peds but really only familial dysauto...inherited which my son more than likely not has.-

Anyway they really had no good suggestions other than dragging him to Ohio to Dr Grubb...honestly I am way too ill and his dad started a new job and cannot get off ( even when his own father nearly died last week they gave him a hard time and docked his hours)...IF I really have to (like if my kid gest worse) Id get him to Grubb.But Im hoping for a Dr closer...

Can anyone tell me if there are good pediatric/adolescent dysauto doctors in NJ or penna ( I live about an hr from Phila, 45 min north of Trenton), or even NYC...but NOT the one from Mount Sinai Hospital NYC ( 2 years ago he told me to go home and prepare to die but its not POTS or dysautonomia becasue I didnt faint with TTT!!!)I was in hysterics...they had to carry me out of his office to the car...his demeanor is what nearly killed me!!!

thank you for all of your help...I know with meds he can feel better enough top start moving and this will help his Lyme recovery!!!

Finette (Finrussak@aol.com)

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Hi Finette - There is a Dr.Julian Stewart in Valhalla NY that deals with pediatric patients and is one of the leading specialists and researchers on dysautonomia - I have not seen him personally - my doctor is Dr. Louis Weimer at Columbia Presbyterian Neurological Institute and I do not think that he sees pediatric patients but I had contacted Dr. Robertson at Vanderbilt a few years ago and he had suggested that I get in touch with this Dr. Stewart in Valhalla - You may want to google him to find out more info - Hope this helps you. Beth

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