Hi all,
I just found this site, as I'm trying to help my DD with her sleep apnea. I don't want to bore anyone, but her medical history is long... She started, inexplicably, gaining weight about 2 years ago. Since then, she's gained about 50 lbs. She'll be 6 in just a few days. So she's about 80 lbs. now. We started questioning it after about 6 months of the weight gain, but it was still early. Then a year ago, we brought it up again, with a different pediatrician. He really didn't do much, and about 2 months later she ended up in the PICU. I took her to the ER for an asthma issue, and she fell asleep there. The ER doctor came in, they hooked her up, and her pulse ox was in the 30's!!!       I had no idea about all this until that night!!

Soo... she spent 7 days in the hospital, and came home on BiPap. She's been on it since then. She's also been hospitalized 3 more times since then, as recently as last Monday night when she stopped breathing! We've been trying, and trying, and trying to get answers about her weight gain, still nothing yet. We're onto a second opinion Endocrinologist now. They've done spinal, pituitary, and brain MRI's too. She also had T&A surgery back in December, after her 2nd hospitalization.

Now on Monday, she was sitting on the sofa, dozing off, when I realized she had stopped breathing! Scariest time of my life!! I had to give her about 2 breaths, then it's possible that she was having a small seizure. There were tremors in her leg. She had an EEG the next day which showed she has the possibility for future seizures, but it doesn't show if she did have one. Since coming home, she's been on oxygen again through her BiPap. Her O2 was lower 90's, upper 80's, so we put her on about 1-1.5 liters. And now tonight, her heart rate has been going up high. It's normally around 80-90, but it's been in the 130's. As mentioned before, she does have asthma, so I gave her Qvar at bedtime, it's her inhaler, daily med.

This whole thing has just been exhausting for me. Everytime she closes her eyes, I'm terrified she's going to stop breathing! And now, even at night, she's not staying up all the time, there's drops. I don't know what else I can do.

I've been trying to find a pillow, or something, that can help keep her neck up, to try and keep her airway open just a bit more. I don't know if there's really anything I can do for that though. She moves around at night, so no guarantee that she'll stay that way.

I guess I don't have a ton of questions necessarily, just more of looking for some support. I think my friends are tired of hearing about this. I feel that a few of them have kind of drifted away a bit. I need to talk to others that know what this is like... Thanks so much for any ideas and advice you have!

Cindy

The first thing I wondered about was whether or not her asthma was really under control.  Does she have a flow meter at home??  What about pulmonary function tests such as the spirometry??  My dd's asthma took 9 months to get under control (tried and failed a variety of meds before we found one that worked).  Her heart rate would go up simply because of the problems she was having with asthma.

What kind of bipap is your dd on??  Does she have an ASV??  If not it may be time to have her go back in for a titration study using something like the resmed adapt sv.  

Don't worry about boring us.  I've got more than one complex medical history to worry about (DH, dd and ds) so I understand that with kiddos like ours it's never just one thing.  Often there are several things that come into play (standard treatment is generally not enough without addressing the other issues as well).  

Ask as many questions as you can think of and we'll do our best to answer them.



Last edited by shelee on Mon Aug 10, 2009 8:17 am; edited 1 time in total

shelee wrote:

The first thing I wondered about was whether or not her asthma was really under control.  Does she have a flow meter at home??  What about pulmonary function tests such as the spirometry??  My dd's asthma took 9 months to get under control (tried and failed a variety of meds before we found one that worked).  Her heart rate would go up simply because of the problems she was having with asthma.

What kind of bipap is your dd on??  Does she have an ASV??  If not it may be time to have her go back in for a titration study using something like the resmed adapt sv.  

Ask as many questions as you can think of and we'll do our best to answer them.  There's also another forum that you may be interested in (parent-2-parent)....

As far as we know, her asthma is fine. It's actually not been a major problem in her everyday life. Her's flares up when she's ill with a cold or respiratory issue. Otherwise, she doesn't seem to have any problems. We don't have a spirometry thing here. What would that do?? She sees her pulminologist every 2 months.

I'm not sure what you mean regarding what kind of Bipap she's on?? Or what an ASV is??

Since we have so many other issues, it's so hard to focus on one problem. It seems that everytime we start working on one thing, another problem comes up. Thanks for the advice!!

Sorry.  I didn't realize that links weren't acceptable on this forum.  You can google adaptive servo-ventilation and get a good idea of why it's different....  My ds first trialed a resmed vpap III and it wasn't quite enough "machine" for him so the doctor recommended the resmed adapt sv, however he also has central apnea.  There is also a machine by respironics that's similar but I'm not familiar with it (our HHC seems to be contracted with or prefers resmed).

Until the development of ASV, we had only three basic types of positive airway pressure (PAP) machines:

    * CPAP (Continuous Positive Airway Pressure): a simple "blower" that delivers the same pre-set pressure continuously.
    * Bilevel PAP: a machine that senses when the patient is beginning to exhale and responds by dropping the delivered pressure transiently to render exhalation easier.
    * Bilevel PAP with intermittent mandatory ventilation (IMV): a bilevel unit that also senses when the patient stopped breathing--then responding by delivery of bursts of air at pre-set pressures and a pre-set rate to try to stimulate breathing. Its greatest disadvantage was that it would force the patient to try to adapt to the machine rather than the machine adapting to the patient's rate and depth of breathing. Many patients complain that they are unable to synchronize their breathing with these machines. Also, the abruptness with which these units deliver IMV can trigger arousals which in turn can precipitate more central apneas.

-ASV is unique in that it continuously adapts to the patient. It provides just enough support when the patient needs it...in a manner so similar to the patient's own recent breathing pattern and rate that it is not only comfortable, but also, it is unlikely to provoke arousals and more central apneas.

As far as the spirometry goes, it's a simple breathing test that can help to measure your lung function and is typically done in the doctors office.

When did she last have a titration study??  Is she followed by a cardiologist??  I hope you can find answers soon....



Last edited by shelee on Mon Aug 10, 2009 8:17 am; edited 2 times in total

your link will be removed soon, sorry.

Thanks for all the info... I'll have to look into it more. She doesn't see a cardiologist, she sees a pulminologist on a fairly regular basis though. As well as endocrinology, and we've had neurology now until we can figure out any possible seizure activity. Sooo... we'll keep it in mind and see if things need to be revisited!