Posted By Posting
Dec 18, 2009
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.
Jazz is being admitted in Jan
Hi all,

Just got back from our new GI, and we have to admit Jazz in Jan for a repeat endoscopy to see if her Eos. colitis is better, same or worse. They are also going to do a barage of blood work and have us consulted with multiple specialist to see exactly what's going on.

I am glad to be having something done finally, but I am dreading it too.

I also hate that I have to leave my 12 month old behind for 4 days (sigh). Just wanted to vent a bit, thanks for reading!!

BTW- any tips to pass the time in the hospital?

Dec 19, 2009
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.
Ugh, anticipating the hospital is no fun, and adding the need to leave Nathan for 4 days must be really stressful. I hope you end up getting some good news.

As for passing the time in the hospital, here are a few of our favorites: A book called "In the Town All Year Round" which is composed of a cast of characters who go through life through the four seasons, but it has no narrative, so you can explore the pictures and make up stories endlessly; Re-useable stickers, often available at craft or educational stores -- the kind where you can create a scene and then move it all around if you want; a magnet board with magnetic shapes, letters, numbers, etc. These things have gotten us through hospital stays, long drives, airplane trips and other challenging experiences.

I hope you have a happy holiday season and that the new year brings Jazz great improvement, and all of you some much needed rest and relaxation!

Dec 21, 2009
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.
good luck! i hope that you guys find some answers and some relief!

have you tried the crayola Color wonder sets? markers, paints, finger paints all of them. those pass the time for emily. and she also likes these things called "discovery boxes" if you look them up they are really easy and fun to make and fund to open too. and also anything for the Dollar store goes over well too.

*hugs*!!! i will be praying for the best for you guys!!
Dec 22, 2009
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 ladies, great ideas!
Dec 28, 2009
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!
I'm sorry she's having to go through this! Prayers for some answers and some good news for you guys. Being in the hospital is so hard on kids...the book lorenzomama suggested sounds great! I'd say see if you can find some fun new toys and books and a new DVD or game or two and slip them into the hospital without her seeing them. Maybe if you pull one new toy out per day you can head off boredom a bit. Is it a children's hospital or a regular one? Our Children's hospital is great about having games, toys, and therapy dogs for the kids to play with, but some hospitals you have to bring your entertainment with you (and honestly, even though I appreciated the toys and games at our hospital and I knew that they washed everything very well before bringing it in, I had a hard time letting my kid play with toys there...visions of teeming bacteria picked up from the kid coughing next door just wouldn't leave my head lol).
Jan 06, 2010
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
Hey Brenda!

Has Jazzy been admitted yet? I hope you find her colitis is better and that they figure out what is going on with her. Thinking of you (((HUGS)))

Jan 10, 2010
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.
hey Michelle!!! Nice to hear from you!! Jazz date was pushed to Feb 9, 10, 11th because they couldn't find any anesthesiologist!!!! Crazy or what???? Rory looks so cute.....still petite though. I also noticed an egg allergy? That's new isn't it?

Jazz is ok, at 36 months she is still 27lbs, low energy and bloating etc... I hope I get some answers in Feb. How are you guys doing?

Jan 12, 2010
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
Hey Brenda!

I'm sorry they pushed it forward. :( Not surprising there is no anasthesiologist though...it is Canada after all, LOL. Do they think the colitis is causing the bloating?? I'm so eager to hear how you make out with Jazzy. Our girls have always been so similar, though I know Jazzy and you suffered a great deal more. Rory was diagnosed with the egg allergy last year, so not too new. We think she might be outgrowing it. We had a horrible time getting the allergist to do more testing though. He seems to think her being small was because we were taking too much out of her diet because of "supposed" allergies, which is far from the truth. He was put off because we did a dairy free trial against his wishes to determine the cause of her bloating. The bloating seems to be much better though...I think the CIB was a big cause of that. Anyway, Rory is doing good. Our only main concern now is her growth. She's 34 months and 23.2 lbs, and 86cm in height. Her latest ex-GP was concerned about her height, and was doing follow up every 2 months. He was thinking about sending her to an endocrinologist because of her low height, but was waiting on her next measurements. Then he decided not to be available for appts EVER, so we now have a new GP and will be starting the whole measure and wait and see process all over again.

I wish you and Jazz all the best. Hopefully they will get some concrete answers for you. Hey, whatever happened with that diagnosis they gave her a few months back??? I remember you saying it was a rare protein deficiency thing or something...sorry, I can't remember....mommy brain :P ((HUGS))

Jan 12, 2010
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.
Wow, I can't beleive the sh#t you guys have to go thru. Hopefully you'll get a decent Dr. who can follow you guys ALL the way until the poor munchkin can start to grow a big more! Horrible mommy you are for starving her!!!!! I can't beleive they would even suggest that!!!

Jazz's recent DX of a weird protein def. fell thru. She is affected by ALL proteins. But it just seems that it's always been her colitis. proteins set her off, so does dairy. I just hope it hasn't gotten worse and maybe she'll need some meds. to keep flare ups at a minimal. I worry about how she'd be at school you know? I know it's still a ways away, but how long have we all been going thru this??? Keep in touch!

Jan 13, 2010
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
Thanks Brenda (((HUGS))) We no longer see that allergist. I was so miffed that he would even suggest that, considering everything we have done to get the kid to eat in the first place. And all of the extra things we've done in terms of supplementing and nutritionist consultations, etc. Anyway, I will be looking for updates on Jazz, I hope all goes well and they can find a med that will work for her. Take care!
Check with your
doctor first!