Posted By Posting
Apr 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.
Jazzy's update
Hi ladies,

It's been a while since I've posted. Life is tough with 2 of them now!!

Anyways, Jazzy had a lot of B/W done. She is severly anemic and all of her stores of iron and ferritin are depleted. I mean she has NO reserves left at all. We are still waiting for the amino acid levels and special test results. We also see an allergist who specializes is unusual allergies to get her tested for an amino acid allergy, that appoint. in May.

Otherwise she is still having the same problems. Often in pain, sleep is up and down and she refluxes still quite a bit. I've taken her off the periactin, as I felt it was making her zombie like. So just Nexium and Zaditen (for her EC). I wish I could introduce more foods, as she is craving varity.......

For now I am exhausted with getting up to feed Nathan every 2-3 hours, but I still visit and read up on all of you.

Thanks for listening.

Apr 22, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I hope that you will get some relief for Jazzy. It is such a hard time when you are sleep deprived with the baby. I am thinking of you. Hang in there, you are such a great mom and a strong woman.
Apr 22, 2009
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.
Yes, life is tough with multiple kids! Especially our kids with their medical problems. Eric is about to go on only Neocate this week because his EE is not under control. It must be so hard that Jazzy cannot tolerate the elemental formulas. I hope you get some answers soon. Ellen
Apr 22, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
HUGS!!!! Good luck for Jazzy's stuff and hope Nathan starts to eat less often and sleep more!!!!
Apr 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, Good luck with Eric Ellen.
Apr 22, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
Sorry Jazzy is still having such a hard time. Do you supplement with the vitamins that antacids deplete. (I know calcium, phosphate, Folic Acid, and potassium are some of them.)

Meggy is also still having a horrible time. The company no longer makes her formula she needs, and we cannot find anything similar and corn free anywhere. Meggy is also anemic. We were told to try Pulmicort respules. So far, it has the opposite effect of what we were hoping for. Her pain and gulping has more than doubled.

My hubby wants to try Brewer's Yeast with Megan. It is a pill that she chews. Here is what wikipedia.org says about it.

"Yeast is used in nutritional supplements popular with vegans and the health conscious, where it is often referred to as "nutritional yeast". It is a deactivated yeast, usually Saccharomyces cerevisiae. It is an excellent source of protein and vitamins, especially the B-complex vitamins, whose functions are related to metabolism as well as other minerals and cofactors required for growth. It is also naturally low in fat and sodium. Some brands of nutritional yeast, though not all, are fortified with vitamin B12, which is produced separately from bacteria. Nutritional yeast, though it has a similar appearance to brewer's yeast, is very different and has a very different taste."

We are also requesting a prescription strength folate and B12 for her called Metanx.

Sending hugs your way and wishing you the very best. I hope Jazzy's health will improve soon.

Check with your
doctor first!