Posted By Posting
Feb 04, 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
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Quinn Update!
Quinn was in the hospital overnight on Friday because she had an MRI under general anesthesia and an overnight EEG. She did excellent coming out from the anesthesia. They stuck a smaller endotracheal tube. Her vital signs were WONDERFUL! And she did great overnight as well. We got the results today and her MRI was "most likely normal" in other words she had some bright white spots in her brain which makes no sense to me but i guess they know what they are talking about. ????? And her EEG just showed that she had medication in her system. in my opinion, the EEG would have to be inconclusive. *roll eyes*

And we went and saw the metabolic doctor yesterday! another decent visit. Her blood work showed elevated lactic acid levels and elevated pyruvate levels. Her urine organic acids were essentially normal with elevations in butyric, tiglyl-glycine, suberic, and glutaconic. According to the doc: "Slight elevation of tiglyl-glycine which could suggest ketothiolase deficiency or a problem in isoleucine metabolism. Slight elevation of suberic which could indicate a problem with fatty acid oxidation or be of dietary origin. However, these elevations are really quite minimal." So my interpretation is that Quinn is just not sick enough but she does have "quirky" things going on that do suggest a metabolic disease. The doctor says that Mito is a possibility, but given how sick she was as a newborn, he would expect for her to be much sicker now. Quite possibly i suppose, but still feel that a biopsy to check would be beneficial. We are to go back and see him in 4 months to meet with him and the surgeon to discuss the biopsy.

Feb 04, 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
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ANOTHER THING!!! Quinn is actually loosing weight since we started her tube weaning. She is three years old and 28 pounds. A 3 pound loss since we started. So we are going to have to start supplementing her feedings again. The thing that totally sucks about that is that she is eating a lot. Her body is just not digesting everything again. So, back to square one. :(
Feb 04, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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Glad to hear that she did well with the anesthesia. I can imagine that you would love to get get a straight answer about what is going on with her. Hopefully the biopsy will help. Sorry to hear that she is loosing weight. Seems like you guys can never catch a break. HUGS!
Feb 04, 2009
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!
Poo on having to supplement. I know you want that tube gone. There's a lil guy in our program that has a tube. I bet he isn't even as big as Q. He's also 3. He eats a ton, better than some of the other kids. I wonder if he is like Quinn...just not getting all the nutrients from his food :(

I'm glad the visits were "decent". What's the 4mth wait for? Why don't they wanna do it now?

Feb 04, 2009
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.
Glad to hear you had some decent doctor visits. I hope the biopsies will help.
Feb 04, 2009
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.
I am sorry for the frustrations and going back to square one. I am glad that she did well with the anesthesia and everything.

I think I would feel the same with the eeg-that it wasn't conclusive.

We have not actually done the biopsy yet, but I know the specifics of it if u want to know and don't already.

I wish u the very best and hope that you get some answers soon.

Feb 06, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I'm so glad that she did well with the MRI - I know how worried you were about that. It's so frustrating that there still isn't a diagnosis. I guess it's great that she's not "sick enough", but geez. Hopefully the biopsy will give some additional answers. Thinking of you both...
Check with your
doctor first!