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Posted by gabriell on June 06, 2001 at 07:49:10:This post is about my 13 year old daughter who has a brain tumor. It is not meant to upset anyone, I just felt that posting this might help someone out there.
My daughter was a big 10 pound baby. Had a hard time breathing just minutes after being born. They said it was her sugar levels, not unusual, a little glucose a little nursing and she was fine.
I brought her home and noticed an irregular pattern of breathing... some long pauses. Pedi said "babies sometimes breath irregularly as long as she continues to breath it is perfectly normal, put her to sleep in another room if it bothers you" I didn't.
She grew, she was healthy, smart, funny, full of energy and snored. Not loud or bothersome but you could hear it, she also took two long daytime naps.
When she was six her snoring got a little louder, sounded congested at night, had more frequent colds that lasted forever, she developed coughing at night and I went back to the doctor for answers. They said allergies, asthma, they put her on meds, still snoring, making wierd noises and the school was calling me to pick her up mid day because she was so tired.
Age 7 they pulled out the tonsils and adds. They said sleep apnea. I didn't even know what a sleep study was and they never did one just did the surgery.
It got worse. She had more daytime sleepyness, and I noticed that her tounge and swallowing were different. She choked on food easily, would even throw up. She had frequent stomach aches, some morning headaches and still sleepy at school. Asthma they said. So we tore out carpets threw away stuffed animals, bought an inflatable mattress, blinds instead of curtains, no pets, no sleep overs and finally moved to a warmer climate.
New pedi. She say's she doesn't sound like she has asthma, lets change meds. tounge was clipped because it was now "SHORT" speech therapy, swallowing therapy. Still snoring, still sleepy, and really grouchy, very irratable. Two years later a sleep study. 109 episodes an hour with desaturations, worst sleep study thay have ever seen in a kid. cpap. off of asthma meds.
Three days after cpap pnuemonia. Two hospitalizations. I keep complaining keep questioning. More tests. They keep saying she is fine, stay on cpap, she hates it.
Age 12, she passes out while swimming in a pool. Has two rounds of cpr. recovers quickly. Now the doctors are taking it seriously. They order PFT's a methacoline challenge and tell us to stay on cpap. I ask for oxygen instead they say no.
after a year of fighting with the cpap and bothering my pediatrician with a list of little things at each appointment like, she drools when she sleeps, alot, she is always tired, she trembles at night, she is congested at night, I think her balance is off, I think one of her pupils is dialated differently... She tries to help me out sends me to a pulminologist, pulminoligist says asthma, maybe an obstruction, reffered to an ENT who scopes her and finds a paralyzed vocal cord, Caused by surgery? He orders a CT scan to rule out anything neurological. I exhale. Finally someone is listening. It feels like we are finally going to get some answers and we do. She has a brain tumor. She has a rare one. A JPA in her brainstem, right where all those nerve centers are.
I was hoping it wasn't something so awful. The apnea is now being treated with low doses of oxygen no more cpap. The neuro surgeon and radiologist are trying to get rid of the tumor.
We have a long road ahead and someday I will sit down and be good and angry that it took so long to get a diagnosis. Angry that I had to pester doctors, do my own research, ask so many questions and wait. If they would have done the CT earlier it would have been different, very different.
Right now we are thankful we have answers good insurence and better doctors. I was researching this website last year looking for answers and frustrated. I have them now.
They are still scrambling around with this whole central sleep apnea thing trying this trying that but the oxygen seems to be helping a little. Now to get my insurence company to let me have a moniter!!!
Not every kid with sleep apnea will have a brain tumor, actually it is pretty rare. Had we had the right kind of sleep study and one early on we would have been able to tell it was not just obstuctive but central.
Lucky for other parents major medical centers offer good sleep studies now and insurence is good about paying for them. It is also wonderful that there is so much info on the internet now, easily accessed information, people sharing stories.
If I could leave any advice it would be that as mothers we know our children. We know there smell, thier patterns. What they like to eat and how much of it. We know that they like flannel sheets best that they like to be held when they are sick. We know when they are sick, we know when something is wrong even if it is a little thing... NEVER let a doctor make you feel like an over worried parent. It would be nice if they knew everything but they don't they are just human like us. They fight with thier wives, their cars break down and they have children up all night with earaches too. As parents we are also nurses, doctors,therapists, and teachers. We deserve to be taken seriously. Keep asking questions, do research, read books, make phone calls,listen to your child. Push until you have the answers, the right ones the ones that mean a good nights sleep and a healthy kid. Gabriell
- Re: sleep apnea and brain tumor AMEN! 6/06/01 (0)
- Re: sleep apnea and brain tumor thank you 6/06/01 (0)
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