Posted By Posting
Dec 11, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Almost forgot- Everyone Update here
I almost forgot. Since Amber isn't around anymore we haven't done this yet this week.

Well, Adriane is sleeping only while sitting straight up in my bed. We sleep with about 10 pillows or more propping us up. She is still taking lots of maalox and tylenol every once in a while. waking up screaming and coughing in pain everynight sometimes 10 or more times a night.

The poo is getting bad again but we aren't sure if she has the stomach bug or if it is something she is eating. So, her bottom is really hurting her. The pediatrician's nurse called me back, finally. But I missed the call because of when she called. So, I am taking her in tomorrow. She had an appointment with the allergist tomorrow but I am not taking her because we are going to a new allergist and we don't want to deal with someone who minimizes her problems. Anyway, that is all. I hope everyone else is doing well. -Amanda

Dec 11, 2008
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
I couldn't believe my eyes when I looked at the clock and it said 3:20am! David & I went to bed at 9 and that was the first wake up! Well now when I complain about never getting more than an hour of sleep you can remind me of that one day in December 2008... ot/Christmas program last night: My 5 yr old Daniel up there singing with his Sunday school classmates, all of them raising their hands up. Danny's "church pants" are slightly too big and his Christmas red shirt slightly too small so we all get a view of his little 5 yr old belly hangin' out...Neither of the boys had their hair brushed all day and had "sleep hair". Not one of our best public appearances but precious still.
Dec 11, 2008
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
We're plugging along...Zack is not eating enough (surprise, surprise), but he's pretty much only puking once a day...better than 5 or 6! He has a gross cough, too...hopefully that will pass soon. Otherwise, we are pretty boring this week! Sorry about the sleep, Amanda...poor baby! I really love that picture!
Dec 11, 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!
We've taken Mags off tomato products. We had spaghetti last night. She never eats the sauce any way, she eats cheese filled noodles. Any way, she wanted some sauce. I told her it's spicy, she said "burn". Poor baby, I hate to lie to her but I had to tell her something so she wouldn't want it. It's been almost a week now and no rash at all since we stopped tomatoes.
Dec 11, 2008
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!
Not much to update here - the battle of the molars continues unabated. Crappy sleep patterns, though it's improving now that we have to motrin on a schedule and not chasing pain. OT - MIL continues to be a thorn...she and dh basically yelled at each other for 3 hours on the phone yesterday, since I'm such an evil addition to her gene pool. Why are good and kind in-laws such a rarity?

Hope everyone is well and gearing up for Christmas!

Dec 11, 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 took Meggy to a new allergist today. I was really impressed. He has read most of Dr. Woods work from Hopkins. He was also very prepared. He had obtained Meggy's hospital records on his own.

Now, he went back over the previous endoscopy reports from either August or September. He discovered just what I had tried to explain to her GI, that there is not a number of eosinophils. He said there were nodules in the esophagus, which we knew. But, then he went on to say that it is yet another symptom of EE.

He is willing to coordinate with Hopkins, but wanted to go ahead and get the patch testing done. He also feels it might be necessary to put her on Pulmocort, but not till after the endoscopy.

Our Endoscopy/colonoscopy has been held off for a while now and will be delayed further to gather more info. Now that we were told Meggy might have Mitochondrial disorder, that puts her in a whole different category for risk.

Tomorrow Babies can't wait will be coming for PT,OT, speech therapy evaluation in the morning. Then, afternoon Meggy has a cardiology check-up. Next week, we have Brain MRI, and an EEG.

We talked to the GI from Hopkins, and will be doing a sitz marker test this coming week. He will mail the pills and scripts for the x-ray and we will do that here. It is to check Motility issues.

I just have to keep my head up, a smile on my face, and keep my little one on the positive side of things.

Dec 11, 2008
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
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!
Sorry to hear so many of the little ones are having a rough week. ((HUGS)). I am praying we will all get answers and appropriate treatment for our lo's quickly. Ella has testing scheduled for the 17th and 18th (next week!!) so hopefully we will be able to treat her better too. :) She has been feeling better since they trippled her med dose. (Holy cow, I was only going to try to get her off meds). I guess if she needs them she needs them. The testing should tell us either way I suppose.
Dec 11, 2008
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
Rory has had a fever of over 102 for the past two days. Tylenol brings it down to about 100 for a couple hours, but then it goes back up. She is not vomiting, but is retching a bit. The only thing she is eating is apricot baby food and arrowroot cookies. She only had about 4 oz of milk today, but drank lots of water. She is really whiny, but other than that, no other symptoms. She is drooling, too, but she has never ever had a fever with teething before this, so while I'm hoping that is what it is, I'm not convinced. If she wakes with a fever in the morning, I'll be taking her in to be looked at, just in case it is a UTI or ear infection. I'll probably take her to the children's hospital instead of her family doctor, just so a pediatrician can get a good look at her belly while we are there. She is also refluxing. Her breath is foul, and I can hear her doing it :( Chalking it up to her being sick and retching, though.
Dec 11, 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.
Well, Amanda stole my post!! Just read hers and that's how we're doing... No sleeping, hardly eating, low grade fever, nasty poops etc....WE are scheduled to receive our ikea reflux bed tomorrow, so I'll review it and post for everyone!

Sounds like a lot of LO's are having a crap week!!

Dec 14, 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 !!!
Seamus and I have had ongoing colds and flus for 7 weeks! Uggh. We have been sleeping with a herbal diffuser going at night trying out eucayptus oil vapors. Seamus nurses a lot throughout the night. He isnt waking up screaming which is friendly. He just claws at my breasts. My hubbie's doing well emotionally. I am pretty happy although a neighbors dog just attacked my favorite chicken.
Dec 14, 2008
Well Ben started wheezing and coughing the other night. Panic and took him to the dr asap bc i was scared he was aspirating the spit up. Of course he didnt cough or wheeze the whole time i was in the dr office lol. Two days later he is very congested and when i suck his nose green comes out. This makes the 2nd sinus infection he has had and he is only 5 months old. Also we are having problems with our GI dr. We go to Vanderbilt and we can never get the dr to call us back. So when the wheezing started my husband called and filed a grievance against our dr. With in the same day she called us back and scheduled him for the scope. We switched formulas to Nutramigen and noticed no difference except it was much worse smelling so we took him back off it.
Check with your
doctor first!