Posted By Posting
Oct 27, 2008
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
Sorry, MIA..Adriane update
Sorry, I have been MIA lately. I don't know if I can make this long story short. The GI doc gave me samples of Neocate 1 on Tuesday evening. I think he was hoping that it would help keep the weight on her. Well, she wouldn't drink it. She took only 10 oz. on Wednesday. We thought it was the formula. I mixed it 3 parts old to 1 part new. She wouldn't take that. My biggest fear was her getting dehydrated. I gave her ice chips all night. She did take those. So, she woke up dry and didn't take anything. I went to work and then took off at 11 because I couldn't handle her screaming at the babysitter. That and I knew she wouldn't do that to me. Sure enough. She didn't do that to me. She went to bed and took a really long nap. Then I went to sonic and got her a Route 44 cup of ice. it is the best. She ate almost all of it before the night was out. Another day of less than 10 oz. but she was hydrated.

I took her to the ped on friday. I am so glad to have her back. She asked if the GI was driving me as crazy as he was driving her. I figure more so since it is my kid! Anyway, she is not happy with the way things are going and mentioned sending her to a specialty hospital. The great thing is that she wants to send her to denver which is what all my research and all of you ladies had suggested. So, we now have full backing and support from her. Yeah!! The good news! She had a viral infection! I know it is sad that the good news is viral but at least we know that she is going to get over this. They said that her throat was so raw and that was probably why she wasn't eating. She is back up to at least 30 oz. a day. Horrible hives and excema flare yesterday. I don't know what set her off but dh and I switched off every hour or so checking on her. To make sure she was still breathing okay. She was congested but never got bad enough for the epi. Perhaps it was the pumpkins we carved saturday night and sunday while she was alseep.

Oct 27, 2008
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.
aww i'm glad she is getting better, good luck with the specialty clinic, let us know if you can get an appt soon!
Oct 27, 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
I'm so sorry that she got so sick. We spent many, many, many, many days and nights like that with Quinn. She got dehydrated SUPER fast though to the point that her veins shrunk, she would get super lethargic and a fever of 104-105 that wouldn't go down with tylenol. The ONLY thing that perked her up was an IV. That's a lot of the reason why she got her g-tube. She just wouldn't eat or drink anything when she was sick and she was sick all the time. i am glad that your pedi is on your side. It makes a world of a difference to have that kind of support. I hope the new GI doctor will be more willing to help her. -Sarah
Oct 27, 2008
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
WTG on the 30 oz...was that neocate or her old formula? I have heard it is pretty hard to get an older child to switch to elemental (heck,it was hard getting my then 6 mo old to switch to elecare from breastmilk!). glad it seems like it was just a virus. So excited you get to go to a specialty is way past time you got this figured out!
Check with your
doctor first!