Posted By Posting
Oct 20, 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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Rory's Mommy
Hey, I was just wondering if you were able to read the responses I wrote last night. And also to see if you took Rory to the pediatrician today.
Oct 20, 2008
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
Yes, thank you so much Sarah. I actually just replied to you on the facebook thread. I read the link and I do feel a bit better, but until she sees a doctor, I won't stop worrying. I'm just concerned about her heart and lungs, cause she has a teeny tiny ribcage as it is. And her stomach is always that big, morning, noon and night. Plus she still gets those crazy bright red face rashes. I tried to get her pediatrician to squeeze her in, but she said I would need a referral from my GP because she only sees Rory for weight/reflux issues.....So I basically lost my mind, cancelled all future appts with her, called my GP, who is booked up all week because she only works three days a week, for two hours each day, so then I was REALLY mad!!

I just want someone to treat ALL of her as a whole, without needing separate referrals to see the same darn doctor, so I'm only dealing with my GP from now on. I have to call to get her an appt for next week or whenever she has an available appt, to discuss the rashes and tummy trouble, but I'm taking her to the children's hospital tomorrow to get them to look at her chest, just to put my mind at ease. I would have taken her tonight, but she's sooooo tired after daycare, it would have been torture for all.

I've been wanting to can her pediatrician for a while anyway, and I finally did today. I was sick of begging her to help us.

Anyway, Sarah, I'm sorry that you have had to go back to the tube, but you should be proud of yourself and Quinn for trying. That's why she has the tube, right, so don't feel too bad about it. (Easy for me to say) No one can take her other accomplishments away from her, or you for that matter. She is a remarkable kiddo with a remarkable mama. Thanks for checking on us. I'll update tomorrow.

Oct 21, 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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UGH!!! Im so pissed off at your freakin doctors!! You live in the USA, right? I can see this kind of stuff happening in Canada, but normally, doctors aren't this stubborn in the USA, but I have also been proven very wrong in that department. It's just hard to believe. When Quinn was 18 pounds at 16 months old, they put a g-tube in her, even though she ate sometimes. She wasn't picky, she was just always sick and when she got sick, she wouldn't eat. So she would go to the hospital for severe malnutrition and dehydration and even when she did eat, she didn't absorb it. UGH! It frustrates me that they are not treating Rory's illness seriously. I hope you find a better doctor. I think taking her to the children's hospital is a GREAT idea. SOMEONE there is bound to care and have enough brain to realize that something isn't going right.
Check with your
doctor first!