Posted By Posting
Mar 09, 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
Quinn Update!
As many long timer pager members know, reflux is really no issue for her anymore ever since she had her nissen fundo. But you all have been here since the beginning of her journey so i wanted to update again!

it is now three months into three years old and it has been trying to say the least. I'm unsure of if she just acts like she doesn't know what mommy is telling her half the time or if there is some connection in her brain that is not speaking to each other. My mom and dad feel like there are either some abnormal behavioral issues or that Quinn's brain is just not functioning at its best. She is not stupid, and we know that. She learns, but she tends to not pick up on things she should have down now as well. We are still potty training her and 50% of hte time she can count to 5, 50% she can't. Sometimes she fumbles her words when she talks and sometimes she doesn't. This kind of stuff results in MASSIVE temper tantrums. So, i'm willing to keep trying to help her out until she gets into preschool.

The GI doctor felt that she was still too low tone and clumsy for her age and recommended her going back into PT. she also lost some more weight, but he seems optimistic about getting her G-tube out so he wants me to write down her oral intake for a day to make sure she really is getting a good amount of calories. Problem is that her appetite has been waxing and waning lately. He is also going to do an endoscopy and take some more biopsies at the end of this month. i'm curious to know if her hiatal hernia has gotten worse or better. i haven't noticed her having difficulties with that so i imagine it is still status quo. But i don't even know if they can check it with the endo. And the diarrhea saga still continues.

Quinn's seizures are more frequent and more violent. We went to see neuro who also noted a drop in weight on her scale (and that was in the afternoon after two meals and a snack). Quinn is already maxed out on her dose of keppra so she wanted to add another medication in, but she needed to pick one that wouldn't interfere metabolically so we had two options: lamictal and trileptal. I chose trileptal to see if that helped. I am to take her back to get evaluated for speech and PT. Also, her MRI showed that her white matter was brighter than normal, which is a signification of a metabolic downfall and is a change in her last MRI. Neuro feels however that the brightness wasn't significant enough to warrent further investigation. of course for me, given her history and lack of a reason for all hre issues, i would love to see someone push the issue further. As far as speech, she is doing well talking, but at times like i stated earlier, she fumbles her words and can't seem to comprehend. Plus, she has been showing some swallowing difficulties and her oral motor function is not where it should be as it is. Funny thing: Neurology says her issues are o2 related and pulmo feels it's neurological. I'm glad i have metobolic doc who is putting two and two together. So Quinn is up to 9 medications now. Whew! Long update. thanks for reading. i hope everyone's kiddos are doing well! -Sarah

Mar 09, 2009
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
(((hugs Sarah))). I've been wondering about Q. Are they going to do the muscle biopsy? I can't imagine how frustrating this must be for you. Sending lots of prayers your way.
Mar 09, 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.
Gosh- so much going on. All I can say is thank God Quinn got you as her mommy- super smart , super caring and super patient! The speech slurring/not finding words reminds me of someone having a TIA or mild strokes, intermittent (but they would have seen that on an mRI for sure) ...maybe the seizures... May God continue to give the doctors wisdom and sustain you and beautiful Quinn.
Mar 09, 2009
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.
Thanks for the update. Sounds like it is working having a middle man between neurology and pulmo. You have been such a fighter for Quinn. She is lucky to have you!!!
Mar 09, 2009
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!
Thanks for updating us Sarah. We have to know what's going on with our Q.

I always pray for y'all and all the pager kids.

I hope all the drs get it together for her soon :)

Mar 09, 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
Thanks for the update. I know that Quinn is such a fighter and you are so good for her. there are times when I would like to throw my hands up and then I think of Mom's like you who have dealt with so much more and realize that I can do it too. Thanks for the inspiration!
Mar 10, 2009
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I hope the Tripletal helps with the seizures. I'm sorry she is struggling still, and requiring the therapy and such. But I get the sense that the metabolic doc is taking you seriously and trying to figure things out, which is all we have all wanted for Quinn for some time. It is a step in the right direction. I mean, how can a child on 9 medications not need some sort of diagnoses. It ticks me off that neurology and pulm cannot agree. Ugh. I have to run, but there is so much more I'd like to say to you. Just keep fighting for Q, and I will pray that she gets the care she deserves from the doctors. ((HUGS))
Mar 10, 2009
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Just wanted to send hugs & support - I obviously have been following Quinn's story over the past three years. I hope the day comes where you can at least put a name to everything (dx) & have the best treatment out there for the problem(s). Eric has similar appetite problems & we may be looking at the tube if he won't drink enough Neocate. I hope Quinn can manage to at least get off that soon. All the best, Ellen
Mar 10, 2009
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I say you ought to brinze your boxing gloves - they've had too much use! You're such a good momma - prayers always for you and your girl!
Check with your
doctor first!