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Hi Sue,
Thank you so much for the reassurance. I'm sure you know how much that means!
From the archives & in general, I am seeing that this is an extremely slow process concerning scheduling, testing, examinations, finding a knowledgeable physician etc. How frustrating for everyone involved, in particular the patient. My heart goes out to everyone.
Although Phillip had a sleep study on last Friday, (10/29) & we were suppose to meet with the only certified Dr. in the area to go over the results today, his office called late yesterday to rescedule his appointment to next week. Initially, I was led to believe that he was being tested for numerous sleep disorders, but found out Monday (11/1), that this particular Dr. only reviews for 1, sleep apnea. That was a dissappointment in itself being that I feel we are back to square one.... again!
I don't know how much weight the opinions of the sleep lab technicians hold, being it is their specific job & yet they are not physicians. I would guess that they are familiar with certain signs etc. pertaining to specific disorders though, at least somewhat. He told us that Phillip did not stop breathing during the night, he did not feel that Phillip had sleep apnea, but certain symptoms did correspond with narcolepsy. Based on symptoms etc. I tend to agree.
I was able to find a neurologist, 2 hours from us, who is the medical director of the state university sleep disorder center for the northern portion of our state. He is also a past president of the American Academy of Sleep Medicine. My hope is that with his expertise, Phillip will get thorough testing, diagnosis & begin treatment as soon as possible & not waste further time on physicians who are not knowledgeable in the subject matter. Now, it's just a matter of getting scheduled in with his office. I was told yesterday that they, "would call me back this week for scheduling & since you have private insurance it should not take too long to get Phillip an appointment to be seen". It's unfortunate that "insurance" should even matter &/or make a difference concerning to medical care & scheduling, but on the other hand, I want my son seen as soon as possible so I'll take whatever advantage I can get!
Has anyone else had an issue with this?
Also, has anyone used the vibrating alarm clocks? There are so many on the market, I am unsure which to order.... also, what about the vibrating alarm wrist watches..... has anyone ever used either of these & if so have they actually helped?
Ultimately, Phillip's health is of the utmost importance, however, this slow process may make it impossible for him to continue at the school he currently attends. Everything is just so uncertain at this point, although they are being supportive & patient. He is an 11th grader at a residential high school for gifted students within our state, housed on a college campus 1 hour away from us. I am concerned how this will affect him (emotionally), if in this slow process he is forced to withdraw &/or is advised that he is not able to continue. As a parent, my instincts are to have him home with me so I can take care of him, but I am torn because I know how badly he wants to continue at his current school as well.
I feel confident that eventually we will get Phillip on track with medication etc. once diagnosed, (not soon enough for me of course, I would like it taken care of... yesterday!). I am very concerned about him emotionally, pertaining to depression & anxiety. As I said, he's 16, quiet, doesn't complain..... right now I just feel he is so vulnerable.
It is comforting & yet sad to know that there are others out there who've experienced the same situation..... the frustrations, the uncertainty, the waiting...... how do you do it?
Shelley
smd <merrymom1013@...> wrote:
Hi Rochelle,
We figured out that my 11 yo daughter has narcolepsy last spring - after 35
days absent from school last year, hospitalization, & being written off as
nuts by numerous pediatricians & specialists at three "outstanding"
children's hospitals. So you have certainly found people here who know what
you are going through. The good news for us, and hopefully for you & your
son, is that diagnosis & medication changed our lives dramatically within a
day or so. I felt like I had my daughter back & she "reclaimed" her life..
It has been 6 months now- 6 months of pretty good functioning. Learning to
live with a chronic condition & sometimes feeling lousy isn't always fun,
but we are in a much better place then we were. Having to occasionally go
to the nurse to take a nap beats never getting to school.
With the symptoms under control, she doesn't act so scattered (she asked me
if she had developed ADHD- no, just narcolepsy) and the depression &
anxiety that she had while "sick" lifted like a cloud. Read through the
archives- the folks here have offered some great advice & insights. Once he
is diagnosed and they find some symptom relief & control, you will need to
help him with accommodations at school, etc. In fact, he should already be
eligible because of health problems.
Read the archives, ask questions, research & educate yourself, feel free to
email me off list.
Sue
(wow- we are getting a Mom's club here!)
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