Posted By Posting
Sep 23, 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.
Overwhelmed
Hi ladies, I was so happy to have a diagnoses yesterday of Jazzy's Eosinophillic colitis, but today I am overwhelmed. I am in tears thinking about it. She hardly eats anything at all as it is, and to have to restrict her more breaks my heart. She is so skinny already, probably lost more weight by now too. I am really hoping this medication works because the the alternative(tube feeding) isn't pleasant. I am waiting for the dietician to call as we speak.......

I am also exhasuted from this pregnancy, and probably overly emotional too!

Sep 23, 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 sorry girl! Just know that we're here for you when you need to vent. Hugs!
Sep 23, 2008
stickybean
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.
ohhhhhh I can understand why you are overwhelmed! Hugs being sent!
Sep 23, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
((((big hugs))))) I would be feeling overwhelmed too (with or without the pregnancy). At least you FINALLY have an answer. Just give yourself a few days to adjust to the news - come on here and vent, cry, do whatever you need to do...we're here for you. I think after a little while, you'll gather up your strength and put a plan in place that will make Jazzy feel so much better. Hang in there!
Sep 23, 2008
amber f
(((HUGS))) Give it time to sink in. You are really going through a lot. HAng in there.
Sep 23, 2008
jessicalynn
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
ALTE,Dysphagia,Odynophagia
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,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Many hugs to you, I understand where you are coming from. Many children with Eos disorders do end up with tubes because of feeling bad and such limited diets.I know it seems scary, I felt the same way, but it is not as bad as you think, and was the best thing we ever could have done for our son(he didnt get it because of his Eos disorder though, we only recently got that dx several months ago, he has been tubefed a long time for other things, in my siggy). Malnutrition is gonna make her feel even worse. What med is she starting? I hope it helps! I read on the food allergy network eos forum that eos colitis and eos gastroenteritis have a good chance of being outgrown, whereas eos esophagitis does not, so that is something positive to think about. It is hard a hard dx to hear though. Hugs
Sep 23, 2008
nicholas'smom
Feel for you. It's a lot to deal with. Hang in there.
Sep 23, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((hugs))) to you, it's a lot to take in and I think you're handling it very well. It's totally normal to feel sad and overwhelmed about this, let yourself grieve and be angry and upset and please do vent about it whenever you need to. That's totally normal, hormones or not!!! It's comforting that she's going to be OK and that you finally know how to treat it, but it's so hard to lose the feeling that your child is 'normal', if that makes sense. Even though she'll be fine and she will be normal in everyone else's eyes there is just something so hard about not being able to feed your child or get them to grow. As a mommy, it just hits you in a bad way when you can't fix these things easily, kwim? It'll get better and you'll feel more able to handle things, and given time Jazzy will improve and it won't be so scary and hard. but don't feel bad for feeling this way. I think we've all felt like that when dealing with reflux and allergies and all the other health miseries that have visited our families, it's totally normal! Do you know the med she's starting? I'm curious, 'cause I'm on meds for something similar 4 x per day and I was wondering if it's the same one!
Sep 23, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I'm so sorry. Hopefully her new med will really help and you can get the feeding all worked out. I'm sure the pg makes it that much harder. Big hugs!
Sep 23, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I am soo sorry, Many hugs to you.

I will reiterate what Jessica posted about tube feeds. I promise life will not end. It may feel like it and yes I felt that way as well. It was extremely hard to accept. I even though to myself what kind of Mother can't get her kid to eat....it was NOT a pleasant time. At all. ;0( It was hard. In the end it was the best decision we made for Jedd overall.

We'll be here for you to lean on, cry with, rejoice, and talk to I promise. I've been there and it's hard. But you will become stronger than you ever imagined. I promise.

For us, finally seeing Jedd actually gain weight was well worth it.

Again, we'll be here for you, it's hard. We all know.

Sep 24, 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.
we've talked about this before, that jazzy and emi have very similar situations. I felt overwhelmed when emi was dxed with CSID b/c there are just soooo many things emily can't eat either. but once i looked into her diagnosis and researched and talked to others who's kids had the same dx i felt MUCH better and much more confident that i could handle feeding her. You should really try to get on the parent-2-parent EE board and talk to them about this they are all great people over there. All you can do is take one thing at a time, don't think too far ahead of yourself or think of things only negative, but know as many of your options as possible. *Hugs* everything will be okay :)
Sep 24, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Just wanted to let you know that I feel your pain, as Eric was just diagnosed with e.e. You just think that feeding your kid will be the easy part of their childhood and then .... BAM! We are heading to CHOP (Philadelphia) in Oct. as they have an e.e. clinic in their allergy dept. I suppose we will find out where to go with all this there. He had 36 eos. in his esophagus. Has your daughter been allergy tested for foods? Sometimes eliminating (COMPLETELY) the top 8 allergenic foods will bring some relief. Do you keep a food journal to look for suspicious reactions? Eric will also be patch tested at CHOP (in addition to CAP-RAST & skin prick tested) to look for delayed food reactions. Is she on something like Neocate in place of milk/soy? That was a godsend as far as Eric's behavior. I know it is very overwhelming, but try to take each day as it comes. All we can do is be the best mommy we can under the circumstances, and hope the experts can offer something to help them feel better until there is a cure/or it's outgrown. Ellen
Sep 24, 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.
((HUGS)) I'm so sorry. It's hard enough to feel overwhelmed under any circumstances, but pregnancy overwhelmed is a creature all its own... Hang in there, and know that we are here for you, for what that's worth :)
Check with your
doctor first!