Posted By Posting
Sep 24, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, 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.
John Hopkins Update/Meggy
We are home sweet home with a few more answers! We are very pleased with the care we received. Mostly that they treated Meggy as a person, as an individual, as someone who matters, despite the tremendous amount of patients they have. They listened, they really listened. They also read the food diary we provided and responded to it. They payed a great deal of attention.

We were not passed around in circles as we have been since Meggy was born. This was amazing.

Not one mention of putting her in the hospital or a feeding tube, or surgery of any type. Not even a mention of meds at this point in time. Wow, I think that is the first doc. appt. since she was 8 months old that neither came up.

We will be doing an abdominal x-ray to rule out partial obstruction and maltrotation. They drew blood and we will have the allergy blood test results back in a few weeks.

Meggy reacted to dairy and soy on the skin prick test. It wasn't a major reaction but enough that it could be causing her problems. The doc. believes she may have other allergies or sensitivities that we have not yet discovered that may be causing her problems.

I had missed a dairy and soy ingredient on both her crackers and daily vitamin. We will be completely and truly eliminating dairy, soy, and corn to see if it helps.I need to find Meggy a vitamin that is soy, dairy, and corn free, OH and gelatin free.

They told us about a powder call Ultracare a medical food that is Meggy friendly. It is free of dairy, soy, corn, gluten, and I forget what else free. 130 calories per serving. We had never heard of this powder before and hope that she can tolerate it and get many needed nutrients.

They also checked her thyroid. Can't remember which test for it though, but we should hear back in a few weeks.

To have doctor who pays attention and cares and knows what they are doing to call u and listen to your concerns makes a world of difference. Some doctors forget u the moment u pay your dues.

The trip cost quite a bit but is worth it for our Meggy and who knows, might save us that much and more money and time and effort and pain in the future.

Wow, didn't know allergies could cause that much physical pain but I hope they are right and truly sticking to an elimination diet helps.

There were a few more things I was gonna say, but I can't remember now and I guess u r tired of reading.

My login wouldn't work last night and of course silly me didn't think to email for help till much later. This was unlike any doctors appt. we have ever been to for ourselves or our daughter. We are pleased, relieved, and thankful. We may not have a lot of answers, but enough for a good start.

Sep 24, 2008
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 am soooo happy for you. How wonderful that you feel like you are on the road to helping your little girl. Good for you for being persistent and finding the best care for her. You are such a great mommy. I like hearing good news like that!
Sep 24, 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!
Wonderful! What a great start! Hopefully those tests will give you some answers that you can work with.
Sep 24, 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
That sounds like a great dr. appt. Sounds like they really listed and are trying to help you find some answers.
Sep 24, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
You have no idea how relieced I am that your trip was worth it and that you are on a good road now. you must feel so relieved! I can tell from your posts that you are a sweet, good woman and I hope everything just gets better and better!
Sep 25, 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.
Wow! I'm so glad for all of you that you had such a positive experience! I hope you are on the road to solving the mysteries that have caused so many problems for Meggy.
Sep 25, 2008
keely_and_allie
How amazing it must have been to have such a positive dr's appointment! It is such a rare thing these days to have someone actually listen to what you are saying and really put thought into what the problem might be. Good luck!
Sep 25, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I'm late on this, but YAY! I am so, so glad you had a good experience. Wasn't Dr. Wood amazing? Now you can see why I am so obsessed with him. He is big on the gelatin allergy, too. I really don't think we have that one (no problem with shots thus far, KNOCK ON WOOD 5,000 TIMES), but he told me not to make Sebastian a Jell-o cake for his bday anyway. (Not that it matters anymore, as we are off food)..

I hope you get your RAST results soon! Ours have never taken more than three days at Qwest, but Hopkins lab is ssssssssssssllllllllllllllllllllllllllllooooooooooowwwwwwwwwwww. Keeping my fingers crossed!!!

Sep 25, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, 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.
Thankyou,
I appreciate everything. Dr. Wood was absolutely amazing. I am glad he is checking gelatin though as Meggy does react to it no matter what it is in. Our GI was Dr. Guerrerio and I thought he was great too. He really knows the nutritional data.

I can't wait to hear back from them. Dr. Wood and Dr. Guerrerio both told us not to count on too much with the allergy testing because her allergies are far enough down in the GI tract that it wouldn't show on test.

I have to say I was surprised that they didn't check as many allergies as I thought they would. They only checked 13 foods or so and nothing else, but I feel confident they know what they are doing.

Check with your
doctor first!