Posted By Posting
Dec 12, 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
Adriane's ped appointment
Well, on the way there this morning Adriane spit up all over the place. So, when we got there she smelled like acid or vomit. Yeah! We got right into the doctor and she is down in weight some. She was around 23.5 lbs and that was with clothes, shoes and diaper on. So, she has lost at least 2 pounds or more. I know that most of you would love to be 23 lbs or even close so it doesn't seem too bad but we have worked so hard to get those 2+ pounds. She spit up again while the doc was in and she did notice that her belly was quite bloated. She is afraid that she is going to get constipated now too because she said that she was pretty hard and gassy. Constipation has never been a problem with her, this is a whole new territory.

So, the doc gave us some Nexium to take with her Zantac. She said that they just came out with a compound formula of Nexium about 2 weeks ago and she wanted us to try it since she is choking so badly lately and her gag reflex is so sensitive that A has a problem with the capsules. I checked with three pharmacies and none of them can even order it until next week. So, we had to start with the capsules. We will see how it goes. She was worried about the weight loss and doesn't want her to drop anymore.

Good news and bad news. This morning when we were there she noticed how cold and blue A's hands were. She couldn't believe they were still like that with how cranky and as much runnig around as she was doing. She checked her heart rate and she was low. Not high. So, the heart rate slowed but now she is too low. She isn't sure why and is worried that this is when we noticed the Apnea more often. I did notice it more today on the way home. It was kind of scary. So, we are supposed to record her activities and when she is blue. We have to try and get a reading on her heart rate so she knows when she is tachycardia and when she is bradycardia. If this continues then she is going to have us see a cardio doc again or just order the holter test herself and then get the cardio guy involved. If you read all of this thanks! -Amanda

Dec 12, 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.
I'm glad that you have a plan....Sorry that all sounds a bit scary for you guys....I hope the Nexium does the trick. Big Hugs!
Dec 12, 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.
Wow, I am sorry she is having a tough time. I hope that you are able to get the weight back on her easier this time. I know it is such a battle and that we fight so hard for them to get a few ounces on, only to see the pounds fly away in a moments notice.

Has she had a sleep study done. I know the apnea can be scary. Meggy's sleep study went well and only showed 2 apneas which is scary enough. However, they told us that it wasn't severe enough to need oxygen.

I really hope the nexium helps her. We tried the powdered form with Meggy. I am not sure if there is a difference. Wishing you the best. Sending hugs your way.

Check with your
doctor first!