update on 's recent dr. appts/CST

[Guest guest]

I just wanted to give a quick update on 's dr. visits this week. He saw

Dr. Pearse, his Dallas cardio, on Monday. He saw Dr. Sperry, his Dallas

neurologist, on Wed. I also collected copies of hospital records from Medical

City and from each dr he sees, including Dr. Grubb in Toledo (who was kind

enough to take the time to write a letter for SS about and how his POTS

impairs him and sign it personally) for 's Social Security Disability

Review scheduled this afternoon. He is up for review simply because he turned

18, so now he is legally a disabled adult rather than a disabled minor child

even though he is still living at home and still a student and still has all the

same drs. and illnesses. Wish me luck! I literally filled out and copied a REAM

of papers for their viewing pleasure! It was really hard for me to read some

of his medical records that I hadn't seen, and I admit that I cried loudly and

with big tears (when was not present), and then I did sit down with

and tell him EVERYTHING honestly. He has the right to know so that he

can better cope with the reality of his multiple problems.

As many of you already know, had some type of serious episode at school

in October which was witnessed by many people (included unresponsiveness,

amnesia, chest pain, numbness down his left arm, nausea, convulsions, etc.)

which resulted in a 911 ambulance ride to the local hospital....and a stay at

Medical City Hospital in Dallas where he underwent a sleep deprived EEG and a

new Tilt Table Test with simultaneous EEG, etc. I read all of those drs' notes

and hospital records for the first time yesterday, and it made my guts clench.

I saw things there to describe my son's multiple medical issues like.... " tonic

clonic seizure activity " ; " sinus node bradycardia " ; " hypotension " ; " severe

narcolepsy " ; " cataplexy " ; " tachycardia " ; " documented history of Ehlers-Danlos

Syndrome " ; " full cardiac and seizure precautions are to be employed by medical

staff and followed up at home and school " , etc.

Just as I was finishing up my reading/sobbing, the phone rang. It was none

other that Dr. Pearse. That good lady said that she had called Dr. Grubb AGAIN

yesterday, waited on hold 45 minutes, and thoroughly enjoyed talking to Dr.

Grubb himself for about an hour and 1/2 concerning , me, and Isaac and our

medical scenarios regarding EDS and Dysautonomia! Dr. Pearse said, " I can

easily see why you have told me repeatedly that Blair Grubb is a very special

man and that your office visits are always an hour or more long.....I could feel

his compassion for people, his deep concern for his patients, his awesome

knowledge of cardiac and autonomic nervous system etiology, and his charisma

just over the phone!...I hated to hang up!....I could easily spend an entire

talking to him and learning from him....I learned more about Dysautonomia and

EDS and your gene pool specifically in that conversation than I learned in

medical school!.....I never told you until now, but since I started treating you

and your sons, I have bought several of Blair Grubb's books on syncope and read

them....I can't wait to read more. " Dr. Pearse also told me that Dr. Grubb did

want to interrogate 's loop recorder one more time in Feb, and then it can

be surgically removed at Medical City in Dallas (battery is running down--it's

been in about 20 months now), and that she told Dr. Grubb I would be hand

carrying the disc with the downloaded interrogation from this past Mon. which

showed 5 SVT's. Interestingly, though both Dr. Sperry and Dr. Pearse both

considered the Oct. incident to be a true seizure, Dr. Grubb told Dr. Pearse

that he was more inclined to think it was hypotension followed by tachycardia

followed by becoming disoriented and getting " lost " trying to make his

way to the nurse'e office, followed by him having convulsions as he finally

passed out, followed by amnesia and confusion.....accompanied by chest pain,

etc. Dr. Grubb further told Dr. Pearse that CranioSacral Therapy (CST) is a

useful tool when done by a properly trained person. He recommended Dr. Fryer in

Dallas. It can do no harm to try it. Dr. Sperry also wants a " fresh " sleep

latency study done on after we see Dr. Grubb in Feb. The loop recorder

can possibly be removed during that same hospital stay.

Love,

~LoneStarRose~

(~~)