Posted By Posting
Sep 30, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
24 hr EEG and MRI
Well, We saw pulmonary yesterday and it was just a follow up saying that everything is working, don't change a thing and hopefully she will get better. HAHA!!! The neurology appointment was today and they said that because of her increase seizure activity and how they have changed, she should have another MRI to look at her brain and see if it is growing properly. Plus it has been almost a year. She also wants Quinn to have a 24 hour EEG. So that is coming up soon. All in all, Quinn looks fantastic compared to what she was a year ago. Her dependence on oxygen is in fact due to her hypotonia. UGH! The terrible thing is that due to her being on oxygen and her issues with her airways, they are going to put her under general anesthesia. so she will need a breathing tube when they do this. I am going to see if pulmonary wants to do a bronchoscopy because they mentioned that if she needed her tonsils out, they were going to do that as well. We follow up with both in three months. I actually like both these doctors. Pulmo and neuro. They are pretty good. Just wish they would work together as a team. Quinn has been a butthead, but she also has a mild g-tube infection so that is probably why. Also Quinn should qualify for CCS for neurology as well as her enzyme deficiency so hopefully it won't take 6 months for ins. to approve her MRI like it did last time. -Sarah
Sep 30, 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.

What kind of insurance do you have. It is aweful that you have to get it approved and that it may take that long. I hope the approval goes quickly and that the MRI presents great results along with the sleep study.

Wishing you the very best.


Oct 01, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Hey Sarah-I hope Quinn's g-tube site clears up soon. I am glad they are keeping an eye on everything. Hopefully, the MRI process will go much faster now with CCS helping out. I definitely think you should get pulmo on board to do a bronch at the same time. Why not try to get as much info as possible why she is out since putting her out is such a risk. Keep us posted when you get a date for the MRI. I am so happy when I see how well Quinn is doing now. You both are troopers!
Oct 01, 2008
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.
aww is that the first infection she has had sine her new button? and if she has to go under get everything done in one sweep! i'm sorry they want to put her under in the first place though. I really hope you don't have to wait forever for approval like you did with those AFOs good luck!
Oct 01, 2008
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.... :(
God, I'm sorry! Thanks for the update. I hope you get the approval ASAP!
Check with your
doctor first!