My Name is the annicial "L" too. and I'm 15...and i know what this girl is going through I have the heartburn and the "Mommy I dont feel good." episodes. I have fainted so many times I have blacked out and i shake really hard in my wrists and i get cramps in my chest...and my heart beats so fast. After every test they found it is the heart...and back in February I started out seeing a spot and went through so many tests yet they found nothing wrong. long story sort 1 yr later they have discovered all of my symptoms go together. I went for a year crying and breaking down ...still do cuz i had such hard attacks..and id fall to to the floor.i shake still at night and i get chills. I find that its so scary for me...and nobody understands how bad i feel...Yet Godsent I met a lady who went through everything that i did..and the doctor agrees..and its treatable and im so happy...and if this is it. Then everything is going to be okay. Um...just out of curiousty when you were pregnant with your baby did you take any kind of depression medicane? Cause thats what caused my heart problems.Mommy was on a depression medication.  I cant sleep at night i get uncomfortable laying down too. But im going in for a 24 hour urine test. now...and they are pretty sure they found it in the heart. And they can fix it. WilliBear if you could email me..this would help me alot..cuz i have been through alot including 3 MRI's and songrams of my heart...and i had those same symptoms. I would advise you to see a cardioligist..because of the tired spells your daughter is having...after the ER Doctor,pediatrition,eye doctor,neroligist,gynocoligist,thyroid doctor and cardioligist...its been a helk of a year. hope that you will email me. well pretty please email me...your daughter is the first girl i have heard of who feels somewhat the same as i do.  Thankyou "L"

L Welcome!!

Williebear posted that a long time ago.  Since you are both registered, you could PM her and maybe she has notifications set so that she will see she has a privite message.  Maybe too, some other moms or patients will see your thread.  Just know that you are not alone.

I just read her response and will PM her as well.  What is wrong with your heart and what are they going to do to fix it?

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Hi Vikki,
its good to know im not alone.
At first they told me it was Cardiovascular Syndrome associated with cardio Vascular Syncope...I was tested for everything..and they didn't find it till last month. Now they are saying its Mitral Valve prolapse. It makes more sense..So there testing me over night and ill know by maybe next week. But the lady i met had it treated with simple medication..she had to take 2 perscriptions. a heart one and another for hyper something. to keep the heart from beating to fast. Im not sure how they are going to treat it. But its so bad. I refuse to go out in town anymore cuz i just faint.

Hi, everyone - I have not been back to the forum for a long time.  Thanks for all your comments.  I am amazed that so many people have read our story.  

My daughter is now 17, almost 18, and continues to live with her apnea.  She is not on CPAP or any other treatments.  She is actually doing better now that we are not so focused on finding a "cure."  She still snores, still sleeps poorly, still feels tired/low energy a lot of the time.  Her immunity is often low and she catches colds and other bugs very easily.  But she also has a much more cheerful attitude these days and is enjoying her senior year.  She is not naturally a complaining person. so she chooses not to dwell on how tired she feels.  This was a direct result of our last doctor visit, the one in which we were told there was nothing more that could be done.  She just wants to live the best life she can, even though she is not over her problem with sleep.

The strongest emotion I have heard expressed was this summer when my husband and I had been snorkeling on a vacation and I said, Someday we should all go snorkeling together!  and L almost screamed -- There is no way I will EVER put one of those things in my mouth!  It's too much like a CPAP mask! -- So I know the sense of claustrophobia is still in her memory.  

The Sonapillow is not a bad product; if L sleeps with it faithfully, she does think it helps her.  But she often starts the night with it and ends up on another pillow, which she must be grabbing from beside her bed in her sleep.

What else can we do or say?  I really applaud everyone on this forum who is continuing to struggle with the problems of sleep apnea.  I sometimes wistfully wonder what things would be like now she could have adapted to the CPAP two years ago.

sleepydave wrote:

OK, this is a big deal.  These are obstructive apneas, they're long, they cause severe desaturations, there's a lot of them and this kid needs to go to surgery.  Notice how that even though there's no airflow in the thermistor for long periods, the child is still struggling to breathe as evidenced by the movement seen in the chest and abdomen channels.