Posted By Posting
Dec 23, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Quinn's Respiratory Downfall :(
Things have not been easy here with Quinn and her respiratory. It is actually quite strange. Not the typical child with a problem breathing. More along the lines of her losing oxygen somewhere, somehow. She is not wheezy. She does not have a wet cough. She just becomes deathly pale. her lips turn white. She gets tired and her eyes droop. Recently (about two weeks ago) I had to put her on oxygen 24/7 because she was staying low during the day. We are still without a pulse oximeter so this is based off of spot checks at therapy twice a week and the doctors office.

I have kept her on at 1/2 a liter 24/7. Been noticing that even that might not be enough and it was confirmed today in therapy. She was on her o2 at 1/2 a liter, she was white and loopy. We checked her saturations and she was low. around 91%. Took her off the o2 completely to see how low it dropped and it went to 86-87% immediately. Turned her o2 up to 1 L and she was able to go above 95% with a much higher heart rate though. She finally got her color back. I never realized how pale she really was at that moment. it is quite scary.

What the heck is going on? She doesn't "appear" to be having difficulty breathing. No typical retractions present. no flaring nostrils. No wheezing. I put a call in to the pediatrician and he said keep it on her at 1 L until she sees the pulmonary doctor Jan 6th. Called the pulmonary doctor and they said the same thing. I'm just so worried about her.

With all her issues, we still are hanging out without a diagnosis. Perhaps this will prompt them more into trying to figure out what in the heck is wrong with Quinn???

-Sarah

Dec 23, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
that kinda reminds me of sickle cell anemia a little. it almost seems like some where a long the way the heme (that collect oxygen and give it to other cells and tissues) in the red blood cells is failing. did you see the pulmonoligst yet?? check her blood?? that is so weird!
Dec 23, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Just a thought, and I'm sure the pulm has checked this, but does she have partially collapsed lungs? Or is her thoracic tone low? My dad has these issues, though not to such an extent as little Quinn. If there's low tone in her intercostal muscles (or inability to fully expand the ribcage) or her diaphragm isn't working correctly, this may account for the lack of other respiratory symptoms.

I'd also go with Kathryn's thought on SCA if she was in pain. Keeping you both in the prayers!

Dec 23, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Sarah, I wish I had help for you. I will pray!
Dec 24, 2008
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
Sarah, I am so sorry you are having to deal with this. I will pray that Quinn gets better and that you and the docs can figure this out. I don't have any advice just support.
Dec 24, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Thanks for the help! slimfast, you have brought up some very good and likely possibilities. We know that she has low tone. She will ALWAYS have low tone. So the low tone in her diaphragm might be a cause. She also has a pectus, where her rib cage sinks in the middle just like Rory's. But the doctor said that it shouldn't compromise her lungs until she is in her teens. And that's if it even will. I will talk to the doctor about all of this. Another thing that a mom mentioned at p2p was pulmonary hypertension. Apparently her son has this and Quinn seems to be a lot like him with her breathing. Other moms mentioned some kind of heart issues perhaps. I will definitely be talking to the doctor about all of this at our appointment in January. Her pulmonologist is on vacation until the 5th so getting her seen sooner is not an option. And going to see adifferent doctor is usually not a good idea especially if this doctor that we have now is really good. So we will just wait unless it becomes a dire emergency of course! Thank you again. Please keep her in your prayers (thanks Melissa) -Sarah
Check with your
doctor first!