Posted By Posting
Jan 07, 2009
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
Everybody Wanna Laugh With Me??? (Quinn)
So, Quinn went to see the pulmonary doctor yesterday to try and figure out what on earth is going on with her oxygen!!! And while waiting for the doctor, Quinn had a seizure. Go figure. Even after her med increase. He said he wants to do another sleep study on her in a couple months. To continue with the oxygen as needed. He is going to push insurance to approve a pulse oximeter and strongly believes that she will get one. he said that he is ok with her sats being in the low 90's but if they go below 90% then it's not ok. I hate that kind of conflicting information. The local ER says to put o2 on if they are less than 94% and the pediatrician says to put o2 on if it is less than 92%. Makes no sense. He is also pushing for a portable tank for her instead of that HUGE one that we have to lug around everywhere.

so get this: Pulmonary says that her weird o2 issues are neurological in nature because she doesn't have any "issues breathing" (in other words he can't hear ronchii, she doesn't have retractions, no wheezing etc...) Neurology says that it's pulmonary in nature since she improved so greatly after being placed on the o2 and the therapist feels that her good and bad days depend solely on her oxygen saturations and seizure management. LOL!!! so where does that lead us??? NOWHERE!!! AGAIN!!!! and the pulmonologist feels that she is "much too young for any invasive testing such as a bronchoscopy". So, we still don't know what is wrong. Quinn is still having seizures almost daily and she is still requiring oxygen, pretty much 24/7.

The good news is that she is pretty much weaned from her feeding tube and appears to be thriving on normal feeds!


Jan 07, 2009
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Glad to hear she is doing well off the feeding tube but not about the lack of answers you're getting regarding her seizures. How frustrating and scary it must be. You and she are quite the troopers though-really inspirations!! Hang in there!!!
Jan 07, 2009
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
Sarah, I am so sorry. I was actually thinkign about you yesterday. For some reason I rememberd that you were taking her in on Jan. 6. Anyway, I can't believe everyone is pointing the finger at another. It just seems impossible to get any good diagnosis lately. I don't even have any advice or anything. I am actually speechless at what is going on. Sorry! -Amanda
Jan 07, 2009
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 am sorry the docs. are sending u running in circles. U r one strong lady. I hope that they are able to approve the pulse oximeter soon. Have you checked into local resources to see if there are any programs to help. We have a local one "Friends of Disabled adults and children" that can help with some supplies. I had emailed explaining about Megan and her situation. They offered to give us a hospital bed.

(we have to provide transportation and man power to get it home though- we just don't have the resources to do this.) They also put her on a waiting list for a car seat.

Hope you get some answers soon. Hope you will check into local help to see if you can get the needed equipment sooner.

Jan 08, 2009
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
I remembered and had to check..I'm so happy she is thriving on normal feeds. I am sooo sorry about all the conflicting info...can't imagine being in your shoes (well, I never have being able to imagine being in your shoes=)) Still praying for Quinn and for you. God Bless.
Check with your
doctor first!