Posted By Posting
Oct 21, 2008
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.
Grrrrrrr....
Jazzy just had a 2 hour tantrum......She was screaming eat!! Eat!!! Eat!!! and then spitting out all her food and crying, and I mean a serious cry...not a whine, but full blown misery cry.

I am soooo done seeing her in pain, that I am takling her into her GI's tomorrow. I am going in there and demanding a more aggressive plan and a back up plan should that not work. If I don't get results, I am willing to totally freak out and make a huge scene (something never do, or have never done)....

She was weighed again, and at 21 months, she is 20.12lbs....only gained 2 oz in 3 months!!!!!! So now she has again fallen off the charts. How much more can a mom take???? And I hope to god that my little one growing inside doesn't have any health issues......

Oct 21, 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!
Oh, I seriously feel for you. I can't imagine how that must have felt. I'm sorry that it might take you having an adult tantrum to get something done for her. All I can do is send you hugs and prayers! Keep us updated!
Oct 21, 2008
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 feel your pain! I am sorry you have to go through this! It is heart breaking to say the least.

I am sorry to hear that she has fallen off the charts again. Remind me-is she currently taking any formula? Is she on anything to boost calories? What are her allergies?

Hugs, I hope things start getting better and easier soon.

Oct 21, 2008
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.
Thanks, Jazz is on Rice milk, it's all she'll take. All her allergies came back neg...yet she is MSPI. All I do to boost calories is carbs, ie: bread and olive oil, coconut smoothies etc.... not much else , she's picky. On days like today, all she's been able to eat is mashed potatos :-(
Oct 21, 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
grrrrrr..... is right!!! Why do mothers have to beg for quality care in Canada? Do you have an appt tomorrow or are you just taking her in? I agree with you that you need a better plan. It is so sad that when babies/toddlers cannot qualify/quantify their pain that doctors do not take it as seriously. I don't blame you for wanting to throw a tantrum. Poor Jazzy. I wonder why there is such a difference between here and the US when it comes to ftt/poor weight gain babies and how they are cared for?? I guess it has to do with other health considerations too, but in Jazzy's case, she has other considerations, kwim, so what are they saying about her lack of gain? With Rory, 19 at 19, they say she's healthy, not to worry, but I'm still not convinced. I really hope she feels better soon. Did they give you any indication as to how long the medicine takes to become effective???
Oct 21, 2008
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.
Thanks Michelle, I really feel that despite numbers (ie weight) I'm the one who is seeing her NOT eat, I'm the one who is seeing her suffer etc.... I know Dr here are a bit more conservative in treatments, but come on!!!! She's going to be 2 years old and still can't get through a friggin meal without pain???? She's going to be 24 mnths and still weigh 20-21lbs, which is what she should have weight at 12 months!!!! I'll post more tomorrow, I'm just sooo tired now!!
Oct 22, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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So sorry! how heartbreaking! has she tried an elemental formula? Although at her age I can't imagine getting her to drink it...
Check with your
doctor first!