Posted By Posting
Jan 05, 2010
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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Wean Fails So Far...
We have been trying to wean Quinn again for about a month, maybe more. And again, she is loosing weight still. but the good news is she is not getting sick like she did the past 2 trials. (I'm talkin needing hospital type sick) I put another call into the GI and still waiting ot hear back from him, but given her weight loss, it's looking like we are going to have to go back on supplements. Eating is not a problem for her. Seh eats anything i put in front of her, aside from the special formula we were tryign to get her to drink. But she just can't gain without the extra help.

Quinn was 34 pounds before the wean. Now she is 30-31 pounds. She will be four in less than 2 weeks! *sadface*

Sarah

Jan 05, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I talked to an old co worker of mine the other day. Their son is 7 and is 38 pounds. They cant figure out why he wont gain weight either. I sure hope you guys find your answers soon.
Jan 06, 2010
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hey Sarah!

I read both of your posts. I'm so sorry the wean is failing. :( While it is awesome that she hasn't gotten sick, 3 - 4 lbs is a lot. I imagine the GI will recommend going back on supplemental feeds. The fact that she is such a great eater and still losing means she needs additional nutritional support for SOME reason, which you know. I think a muscle biopsy should be done, most definitely. You and she both need some answers. It's been a long struggle for you both. I would say not to worry about the weight number so much as the fact that she has lost 10% of her weight. When I look at Rory, who is just over 23lbs at almost 3, hitting 30lbs by 4 would be a HUGE feat for us. She's only gained about 3lbs last year and 3lbs this year...she needs to gain 7lbs next year to be where Quinn is. The doctors don't even bat an eye at how small she is, because she is healthy. Quinn, on the other hand, is not healthy, and while 30lbs is small for 4, the real issue is that she's lost 4lbs. I really hope you can find someone who will look at her entire history, figure out why she needs oxygen, why she can't gain without supplemental feeds, why she is "clumsy" and why she was misdiagnosed with CSID. I think you have to keep pushing as you have always done, and look into that biopsy. I really wish you guys all the best in figuring this out. And it is not a weaning failure as I posted above, it is one step closer to figuring out what Quinn needs to thrive ((HUGS))

Check with your
doctor first!