Posted By Posting
Dec 22, 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.
Not so happy
Hi all,

sorry I'm always posting complaints and vents. We had a bad weekend, just like our bad week last week. Jasmine is tugging her abdomen, thrashing and refluxing a lot. Her stomach sounds like a storm is brewing and she has a lot of gas. She can't sleep and won't eat and doesn't want to play.

I feel like her EC is out of control and no one can do anything. Her Zaditen isn't working. I started to give her neocate and take away all foods, but she is constantly asking for foods... I caved today and gave her mashed potatoes.....

She is getting violent, by bitting and smacking/kicking....sigh......I just don't know what to do anymore. I thinkin if she isn't a bit better bu the end of the week, we'll end up at the ER again... :-(

Dec 22, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I'm so sorry, for both of you. I really don't know much that's worse than not knowing what to do to help your little one when they're suffering. I wish I had something helpful to offer, but all I've got are virtual ((HUGS)) for both of you. Lorenzo goes through the biting, hitting thing when he is hurting and sleep deprived too, and it just makes everything that much harder to deal with... Hang in there, and keep us posted. ((HUGS))
Dec 22, 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!
I'm so sorry. It seems like these kids have to suffer so much before you can really get help for them. I can't wait to see what happens with the new GI.
Dec 22, 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 am sorry for both of you and I am sending hugs your way. It is so tough when it seems there is no right answer. It is hard to say no to a child asking for food, especially when u know it is only natural. And yet to see them hurt so much for eating is hard too.

I think the biting and everything is the only ways she knows to cope with pain. Meggy hardly ever bites, but she does kick and cry so much.

As we are also winging it through the holidays, we tried benadryl earlier to see if we could help her with this horrible pain. I am not sure if is helping the pain, but it is helping her sleep a bit. We get the dye free type.

I hope tomorrow will be a better day for you. and that she will at least feel good through the holidays.

Dec 22, 2008
emibug
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.
i must have missed when she got diagnosed with EC. I knew that she had it, but forgot how you said they tested for it? just curious because emily and jazz sound so similar.
Dec 22, 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.
Kat, they really do sound similar. Jazz was diagnosed when I insisted on a colonoscopy with biopsies. That was it for us, she has a large number of Eso. in her colon. It is very difficult to diagnose because it mimics reflux, but also causes MAJOR flares..... Has Emily had a colonoscopy?

Thanks Engi, I think of you two often. Somehow we'll all get through the holidays I'm sure...It can be soooo tough though....

Dec 23, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
I'm so sorry. Sleep dep sucks..It is sooo frustrating not knowing what is going on w them! I SO look forward to the day Seamus can communicate his feelings and needs.Hopefully you won't end up in the ER! I'm going to go get my first nap in a month without baby! Goodnight and much love!
Dec 25, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
What is she taking for EC? Can they give her a breakthrough med for the pain in the mean time? Poor baby! We will be prying for you! I hope you are having a Merry Christmas!!
Check with your
doctor first!