Posted By Posting
Nov 10, 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
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So, this sort of phone call never gets any easier
I spent the night away from home last night and Quinn stayed with her Meemaw and PaPa. 2 hours after she was sleeping, I get a phone call from them saying that Quinn is thrashing in her sleep, whimpering in pain and grabbing her stomach. She had been doing this for a little while. I told them that it is probably just her stomach acting up and she is probably in a bit of pain and to give her some tylenol and she should be ok. I get off the phone, then get another phone call that she is having a seizure and wouldn't stop. I stay on the phone with them for about 10 minutes while Quinn came around and they said that she had been retching, trying to puke and she was having a really hard time breathing and that she was still dazed and confused. They thought she was aspirating, but I told them that she probably wasn't if all she was doing was *trying* to puke and not actually puking. But her chest was retracting and then she started having diarrhea. So I told them to keep her on her oxygen. They wanted to take her to the hospital, but it would have been pretty pointless. All the stuff they were telling me is typical of a child with a medical history such as Quinn's. As abnormal as it is for a child to do this, for Quinn, it is to be expected. The only thing we can do is go to her follow ups and tell them about these episodes and changes in condition. I was able to talk to Quinn and she just sounded so miserable on the phone. I hate that my daughter has to go through this. I hate that I torture my family with her medical frailty when they watch her. I hate that there is nothing more we can do other than to hope for a diagnosis somewhere out there so we can know what to expect for her future. :( -Sarah
Nov 10, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
i think i would have freaked out! Poor Q!
Nov 10, 2008
emibug
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.
isn't it awful when abnormal is the gauge of normal :( i hope everyday for you guys too *hugs*
Nov 10, 2008
amber f
I'm so sorry. ((HUGS)) Thinking of you and Quinn always.
Nov 10, 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.
Sarah,

I am sure u may have already gone this route, but have u ever taken Quinn to Mayo Clinic or to John Hopkins?

There are free medical flights for people who qualify and u can request a referral for free housing while u r there.

This may or may not be useful for you, but might be worth a try if nothing else has helped.

I know with Mayo to get the ball rolling, It is considered a referral if Quinn's records show up at their door. So, u could go to the hospital that has the most records on her and sign a release requesting her records to be sent there. If your name and number are in there, u will get a call. If not, they send to your address on file saying you have been referred and to call for an appt.

Mayo does not necessarily take the payment insurance provides and may charge u extra.

For John Hopkins, I think it depends on your insurance, but we referred ourselves and they took what the insurance offered for payment.

I don't know if that info is useful, but u have it if u need it.

I am sorry that Quinn goes through so much. I think u r a wonderful Mommie and I know what you mean about trips to the ER being useless. I think about Quinn a lot. I hope that she gets better soon. I am glad that you take some nights away.

Nov 10, 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 sorry that you did not get a peaceful night away.

Poor little Quinn. You know we are all praying for a diagnosis and treatment for her.

Nov 10, 2008
michelle&aurora
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
HUGS Sarah!! I was watching mystery diagnosis last night, and was thinking of Quinn. This mom watched her baby suffer for 10 years with literally "heart-stopping" pain. She finally found her daughter's diagnosis on the Internet. It's very sad, but I have nothing but hope for Quinn...that you will find an answer soon. You mustn't accept this as normal....keep fighting girl!! My heart goes out to you both.
Nov 11, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
((Hugs)) have you been to Cincinnati or done testing for a mitochondrial disorder? I'm sorry things are so hard.
Nov 11, 2008
jolexas
Hugs to you. Bless your heart.
Check with your
doctor first!