Posted By Posting
Feb 17, 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's GI UPDATE!!! *you decide if it's good or bad news*
It went well, but again, i am reminded of how freaking difficult it is to properly care for a child whom NOBODY knows what is wrong with her!!!

Quinn is 30 pounds. Which puts her in the 50th percentile for her age. Which i think is GREAT!!! However, it is a 3 pound weight loss since we started the wean, but a two pound weight GAIN since last June. So we are sitting in LIMBO here whether or not to start tube feedings again with the GI doctor. I am rather pleased with her weight. Shoot, even if she was in the 20th percentile i would be happy. So i'm content with keeping this up until she starts getting desperately thin. I just want her to get that darned tube out. but I know that the wean needs to be successful first.

Umm... GI doctor wants to do an EGD and take some biopsies of her stomach. The reason is to definitely rule out/in that her diarrhea is/isn't related to CSID (enzyme deficiency which makes her unable to digest sugar). I told him how very careful i am about NOT feeding her sugar and giving her the medication to aid in digestion of hidden small amounts in meals, yet she continues to get intermittent diarrhea. It is inconsistent and I am unable to put my finger on exactly what is causing it. And so far she has proven unable to gain weight without small supplements despite how well she eats.

Quinn was discharged from physical therapy about a month or two ago. The doc had her climb some stairs to get up to the exam table. For a normal three year old, this should not have been a difficult task. Most can practically run and skip up steps, but quinn was showing some difficulty with balance and tone AGAIN!!! He said that she probably still needs therapy. Therapist will be re-evaluating her. He also felt that she needs feeding therapy because of her very poor oral-motor skills. *Quinn sucks her bottom lip to swallow. tilts her head back when she does swallow solid food, seems to need to chew excessively, thrusts her tongue and food spills out of her mouth. She is incredibly sloppy for her age and takes an extremely long time to eat (somewhere between 1-1 1/2 hours to eat a normal plate of food for a three year old) and I know this too, but gosh she was doing so freaking well!!!!

And her tummy has been sick today. Diarrhea like crazy, bloated belly without air in it (I have been venting her and no air comes out) and that poor g-tube is red and TIGHT because of the bloat. She is complaining of her tummy hurting. this is a repeated cycle. So, hopefully, she can get over it without needing hydration from an IV or extra nutrition for hypoglycemia. And HOPEFULLY this time her tummy won't bleed. She has been doing so well lately I am confident that whatever is attacking her weak stomach this time will loose the fight.

I am to record 3 days of oral intake to determine whether or not she truly is eating an appropriate amount of calories to grow and to aid in the decision to remove the g-tube or to keep it in. *FINGERS CROSSED!!!*

-Sarah

PS. He is also going to be calling the Metabolic doctor in San Diego to help get Quinn's digestion issues resolved. He WANTED to and was EAGER to speak with the doctor. He is the one that REQUESTED it.

Feb 17, 2009
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.
omg there is a chance to remove the tube!!?? yay! i hope all goes well! You know... and you may not agree... I would throw in a colonoscopy in with the EGD while she is already under. I still get diarehea from emily even though she has a very low sugar diet and no sucraid. I know Q's back ground and why you don't want anestesia so I do think a food diary is a prefect thing to do then give to your GI and let him decide. did he ever do stool sample?

emily's is super inconsistant too, she just got over a 32 day flare of many mucousy diareheas and is now in to a super abnormal solid, small shiney balls of poop. Even with food diary which showed the same foods fed, and negitive stool samples and cleared colonoscopy, her reoccurent diarehea is still not figured out. so i don't know how this helps... but i guess we're in the same "csid" boat lol.

have they ever looked into her pancreas or gallblader problems? have you ever givin Q kids pepto tabs? they seem like they help emily's tummy feel better the bloating went down a little too. gotta go audrey's awake! good luck!
Feb 18, 2009
mom2adriane&morgan
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 with you on the weight issue. I think 30 lbs is good for her age. My oldest wasn't 30 lbs until 4 and she was healthy. The docs just said that she was small and still is.

We are in the same boat with the diarhea and then hard stools and horrible bloating. They aren't sure what is causing A's either. She isn't eating anything different not even a differnt brand of anything. She only eat turkey, carrots and blueberries so we don't know what is causing it. I know how frustrating it can be. I really hope they can get things figured out and I'm glad that a doctor is pushing for answers. Perhaps he can get it done. Good Luck!

Feb 18, 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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thanks Kat! we haven't looked into a colonoscopy yet. Haven't tried the pepto. could be worth a shot if it will alleviate some of the pain. The doc mentioned that if the biopsy comes back normal for CSID, he is going to look into the pancreas. But the diarrhea problems he seems to really want to fix for her this time. I'm anxious to know how the conversation between the GI and metabolic doctor is. -Sarah
Feb 18, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
I will hope for very best on the G-Tube removal. I am glad that Quinn has made 50% for her age. I hope they figure the enzyme deficiency out.

I know that the endoscopy and colonoscopy can be scary. We cringe everytime we have to put Megan under. I am very glad that we went ahead with the colonoscopy this last time though, as it did give us some answers we could not have gotten other wise. We found that she does have elevated eosinophils everywhere except her eosophagus and she has lymphoid hyperplasia. Which tells us her immune system is on overdrive.

I hope that if she needs it, u r able to get her back into therapy soon, and that it will be successful.

I am glad they are calling the metabolic doc.

You are one strong woman and I wish you both the very best.

Feb 18, 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.
HUGS and prayers to you.
Feb 18, 2009
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
I'm sorry she has lost weight, Sarah....but ya know what....I was searching old posts to get some of my dates in order, and I came across one of your very old posts when Quinn was first diagnosed FTT. I wasn't a member of the boards back then, but now hearing that she is 50% weight for age, it gives me hope for us. She's come a very long way. If she still needs therapy, it will only help to make her even stronger. I really hope you can get to the bottom of the CSID stuff. I think a food log is a great idea. We are starting to log Rory's food intake as well. We were told yesterday by the allergy nutritionist that she is malnourished. :( Anyway, I know YOU will do everything you can to keep Quinn healthy. I am praying the DOCTORS get to the bottom of things one day soon. All the best. Think of you both often. ((HUGS))
Feb 18, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Yay Quinn!!! Hope the therapy gets her back to her old self! =)
Check with your
doctor first!