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Jan 10, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Meggy's Sleep study
I got the results of Meggy's sleep study in the mail today. There were 6 obstructive apneas. Her SpO2 was as low as 87%. Severe snoring noted. It says they recorded 4.55 hours of sleeping at 75% sleep efficiency.

Jan 10, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
what does this all mean?
Jan 10, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
The only part that I really understand is that she still stops breathing in her sleep, and that her snoring is bad. I don't know why her oxygen saturation is dropping, but that is worrisome.

Anyway, don't know where to go from here. I guess we need to get the replacement parts for the monitor and get her back on it.

Jan 10, 2009
gail
Gail - mom to a six year old with reflux and an infant with reflux
Maybe for your peace of mind they would let you have a pulximeter (not sure how to spell) at home? I knew a child once who had one for a while. The parent was able to keep her own chart at home as to when oxygen dropped. After a month or so of keeping her own records, parent figured out that oxygen levels were fine during the day but would drop at night into the low 80's. The child rec'd most of nourishment at night on a feed pump. I remember as a result of info. from parent the dr.s changed reflux meds. and feeding schedule. They tried supplemental oxygen at night but rarely needed it after her meds were changed.
Jan 10, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you. U r very kind in your response. That sounds like a great idea. Not sure if I could get anyone to let us have one or would have to buy it on my own.
Jan 11, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Meggy's results sound very much like Lorenzo's were. We were pretty frustrated by how little his doctors seemed concerned about it -- I mean they basically acted like it was no big deal and we should just recheck him in a few months. Call me crazy, but I just don't like the idea of my child NOT BREATHING during sleep. I get it that there are kids with central apneas, and OSA's that result on much lower O2 sat levels, but it just drives me nuts that it is considered okay for a developing child to have ongoing sleep apnea and have nothing done about it.

Given that she had severe snoring, do you know yet why she snores? Sometimes a visit with an ENT can shed light on the cause. In our case, Lorenzo had only mild snoring and we have figured out that his apnea is likely the combined result of reflux and low muscle tone around the throat, neither of which we seem able to do anything about at this point. For some kids, though, the tonsils and/or adenoids are removed and the problem is solved (though knowing Meggy's history, it seems unlikely it would be that simple...).

You might want to check out the pediatric forum at www.sleep apnea.org -- lots of interesting information and support. Having either an apnea monitor or pulse oxymeter would be great, but in my experience, you're generally left on your own to acquire them. I know Quinn's mom has been trying for months to get approval for a pulse oxymeter, and Quinn's desaturations are really low. Again, it is just crazy making how complacent the medical world can seem when it comes to these things.... It is possible to acquire both on your own, but the O2 monitors are VERY expensive.

Best of luck to you!

Jan 11, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I think you are probably right that we are on our own. When I had talked to the nurse on the phone before and asked directly if there were any apneas, her answer was "there is nothing concerning here" I asked her to send the report in the mail and she did. I am glad to know the absolute truth.

I do think I would be happier to be able to check her on my own without relying on them. Not sure how to obtain the equipment yet.

Her tonsils appear very big and food gets stuck on them all the time. Not sure about her adnoids, but the pedi. said maybe a chronic sinus infection. It is quite scary, especially given her history and the fact I have awakened and found her blue and not breathing before.

If I understand the report okay, her apneas are mostly occurring in REM sleep when the body is paralyzed and muscles relaxed.

We did check into the craniosacral therapy, and the only therapist we found wants $65 for 20 minutes.

Jan 11, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hi Engi,

Gld yu got a copy of the report. Jazzy's study was very simlar to Meggy's. She also snored quite a bit. When her adnoids/tonsils were x-rayed, it was confirmed that her adnoids were enlarged, hence obstructed. A course of Flovent (steroids) made a HUGE difference in her sleep quality. I hope that's the case for Meggy too....like you need more to deal with right now!! HTH

Jan 12, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I'm sorry you are having such a hard time getting quality medical care. From experience we had a pulse ox machine and it was good when she was little but as she got older she fought the machine and me. It was good to have when we needed to confirm with her docs that the apnea was a issue because of her dropping O2 sats and to record her brady and tachy clusters. When she started fighting it was more trouble than it was worth because the sensor kept coming off from her wiggling or pulling. You guys know what it is like at the hospital let alone at home. She was the same way with the apnea machine later on. She hated it and would do anything to keep me from putting it on her and if I managed to wrestle her down she would immediately pull the leads off and I would have to come and fix them only to have her do it again or I would just give up and take them off.

I hope that you can see an ENT because if her tonsils are that big that could make a world of difference. Morgan had her adenoids taken out over a year ago and that helped her sleep better and she doesn't snore nearly as loud now.

Check with your
doctor first!