Posted By Posting
Oct 03, 2008
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.
What to do.....
I just put a call in to my Ped AGAIN for the thousandth time now....and haven't got a call back. jazz was put on a new med last week for her EC, and is NOT responding well to it...she is always complaining of a hot sensation in her mouth and hair in her mouth, and won't eat much. She is crying and throwing tantrums ALL the time and hardly sleeps. I was so pissed that her Dr has not been calling me back that I called the GI on call at her hospital and told him what was going on.....I am now waiting for him to sort it all out.

Is it not common curtesy for people to call back when they say they will call back????????????? WTF? Do these people live in such a bubble that they don't know what it's like to have to wait for days for a stupid call back and watch their LO suffer in the meantime?????? Sorry, long vent, I know.......

Oct 03, 2008
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
NPO tubefed continuous elecare 24 hours/day
Huge Hugs!
Oct 03, 2008
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!
I'm sorry....Hugs to you and Jazzy.
Oct 03, 2008
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
Oct 03, 2008
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
So sorry!! Hope they call soon and that Jazzy feels better too!!
Oct 03, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, 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 am sorry Jazz isn't feeling well.K

It always feels like the docs are heartless or clueless when they refuse to call us back, knowing that our LO's are in pain.

I hope she feels better very soon.

Oct 03, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I don't blame you for being pissed. I like Sebastian's main ped, but one of his partners suuuuuccccckkkkkks. She was on-call two weeks ago when I called about bloody earwax, and the b-otch never called me back. I knew it was her, so I just went to Night time Pediatrics, like you called the GI.

I know doctors are super busy, but if we all know that, don't doctors know that when they sign on for that career choice????

How is she feeling now??

Check with your
doctor first!