Posted By Posting
Oct 27, 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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Halloween Horrors
Quinn has come to the age where she just wants to be a normal child. unfortunately, with this CSID (she cannot digest sugar or starch) it is becoming a bit hard to endure this year. She is almost three years old and she wants CANDY!!!! AAAAAHHH!!!! We were at a birthday part this weekend and the kids were hitting the pinata. When the candy fell, they all got to go pick up the candy. Quinn did too. I let her do that. It's fun! but when all the other kids were sitting around eating their candy, she got so upset because i told her that she couldn't have it. How mean of a mommy am I??? "Ok, Quinn, go pick up the candy because it's a lot of fun but you can't have your surprise." UGH! When we are at the store and I want something like a doughnut or icecream, I always buy Quinn something that she CAN have, but the other customers or workers in the store don't know that. so when they see her eyeballing the doughnuts next to me, they say stuff like, "Oh, aren't you a lucky little girl. Mommy's gonna get you a treat. Pick one. They are such yummy sweets." Now, she is realizing how much she is missing out on her "yummy treats". It's so very sad when I have to tell her that she can't have it after these people work her up for one. :(

And now, we are going trick or treating. This Halloween. It is just something that i know she would LOVE to do. We did it last year and she enjoyed it and I think this year she will enjoy it even more! But what am I suppose to do when I tell her that she can't have any of the treats that she had so much fun collecting? It's just so hard!

-Sarah

Oct 27, 2008
stickybean
i can understand your heart break! Is there anything "special" she can have that you can trade her candy out for? Maybe change or money? She can "cash" in her candy to get something at a store like a toy or clothes. Is that an option?

Poor darlin! It has to be so hard on her! (and you!)

Oct 27, 2008
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
That's a nice idea. I think I would trade in my candy for new clothes or a new toy! Do you know some people in the neighborhood who might be willing to give something she COULD have...you would have to talk to them beforehand, but it might lead her to feel more "normal" if she could eat something out of her loot. Poor baby...no candy is a tough one on the kiddies.
Oct 27, 2008
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
My dh were just discussing how hard this year was going to be. Even though she doesn't understand most of what Trick-or-Treating is all about she sees what sister is getting and wants the same. Last year was hard and she was only 6 months old and really didn't understand. She didn't really get any candy because of how small she was and that was good. This year she will get some. Even the doctor's office is bad. They will ask if she can have a sucker or candy. She can't have anything. I don't expect most of the world to realize that she can't have it but I generally expect the doctor's office to not offer her things she can't have. Then they look at me like I am a mean mom that doesn't allow treats or something. And she was so excited about her costume when it came in. She had to put it on immediately.

I hope things go smoothly for you.

Oct 27, 2008
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!
There's no good or easy answer for that. The only thing I can think of is for you to have a bag of treats including toys that she can have. Every time she does something that the other kids get treats for---she could pick out of your bag. You might could even sneak and give a treat to the person doing the game and then have them give her the treat.

I can't imagine your frustration...I got kind of ticked just because the lady at the bank said loudly over the speaker "can they have a sucker?" I wanted to say, "why don't you say it a little louder!" Any way, I hope I might have helped a little. Hugs to you both!

Oct 27, 2008
bigdaddy
Liz, mom to Donnie 12/2005
Surgery for Pyloric Stenosis at 5 weeks old
GERD since 4 weeks old
Colic until 13 weeks old
Delayed Gastric Emptying
MSPI
Surgery for Tubes and Adenoidectomy at 14 months old
Anemic since 9 month check
Febrile Seizures
Speech Therapy
MEDS: Zyrtec, Nasonex, Xopenex,
Vitamins with iron, and back on Prevacid as of 12/2008
This is a total shot in the dark because I don't know anything about CSID, but can she eat sugar-free candy? I also like the idea of trading in her candy for a toy or something, that is really cute. What is Quinn going as for Halloween? Hope y'all have a nice time and find a good compromise! Have fun! -Liz
Oct 27, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Man, I hate those little reminders that they can't have some things other kids can have...I agree, halloween stinks! We don't do the whole trick or treating thing usually, the years we have I offered to pay the kids a certain amount for each of their candies. Then I let them go and choose something from the toy store (I made sure they each got around five bucks or something). I toss the candy or hide it and hubby and I eat what we can when the kids are asleep (bad mommy, I know). You could also get some sugar free candy and give her a few of those in exchange for the others...just some ideas. Really, the fun part is dressing up and walking around in the dark...and at least she can enjoy *that*! (((hugs))) to you both, I hope you have a good time and that you find a good way to solve the treat issue! If it helps, you can tell her that other people do the treat exchange, too...and I think she would have fun picking out a little toy with her money.
Oct 27, 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.
emily dosen't understand halloween this year, but she dosen't really like sugar free candy or cookies (even ones with sugar in them she could care less about- she wants bananas! lol) But what i was thinking about doing when she is older is having 2 trick or treat bags that are exactly the same. let her go around and collect as much candy as she wants in one and then when you get home hide that one and hand her the other one filled with sugar free candy and/or cookies. (walgreen and walmart have a bunch of different SF candies suckers, gummie worms, chocolate, ect.) If she wants some candy while you are out walking; stash some in your pocket to hand to her.

at publix the ladies always want to give her a cookie and when i say no, they give her a sad face and say something like "awww" which always makes her feel bad and me feel worse cause she frowns BUT i would let her have one IF they would carry SF ones in the f*in case! I instead take her by the deli and get her cheese and she LOVES it. lol

i got Breyers SF ice cream last week and WOW it tastes just like "regular" ice cream. I can't help you with the doughnuts- i have met no equivalent SF match! lol I eat them at night after emily goes to bed, other wise she follows me around saying "bi. bi " (bite)

Maybe you can go to a festival rather then trick or treating where the emphasis is more on games and costumes then candy?? I don't know, I hope she has lots of fun!!
Oct 28, 2008
blueleopard
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.
Because Eric is allergic to so many foods and has e.e., candy is out of the question. It does stink that so many activities are based on food. I bought 10 small items (cars, halloween stickers, etc.) & plan to go up to the house before he does & ask the person to put the toy in his bag. Ellen
Check with your
doctor first!