Newly Diagnosed 2yr Old...our Story

[KierasMom]

Hello all and thanks for sharing so much info on this board. I've only just started reading and it's already been a great help. I just thought I should introduce myself and tell a little of our story.

My daughter Kiera is 28 months old and was just diagnosed on 10/14/05. She was very ill before her diagnosis was confirmed. Part of the problem was that she had another intestinal issue - malrotation - at 2 months of age which was corrected by surgery, with no further complications. When she started having diarrhea, weight loss, and abdominal distention late this summer, we suspected all sorts of things, including teething, giardia, etc. Once we made it to the doctor, a key suspect was them intestinal obstruction due to adhesions from the earlier surgery.

She was admitted to the hospital 10/7 and the surgeons were sure she was blocked. They put in an NG tube and drained her stomach of all the air and fluids, which made a significant change in her poor bloated belly! They did an upper GI barium study, and found she had no blockage whatsoever. We spent the rest of the weekend in the hospital recovering and they put her back on food - any she wanted - and said as long as she was able to eat, pee & poop she was healthy enough to go home. Her bloodwork included a test for celiac but it takes a week. In the meantime no one warned us to avoid gluten just in case.

She got really ill in the week between. By the time she was readmitted 10/14 she was completely lethargic and very obviously had something terrible wrong. She ended up on TPN for a few days after they tried going gluten free for a day or two. She could not tolerate anything. We were finally discharged after 6 horrible days which included an endoscopy AND a barium enema/lower GI study when they suspected she was blocked again.

Kiera's been steadily improving since coming home. The gluten-free diet has gone well with her and her mood and overall health are significantly better. I know we have a long road before the belly, hair and other things go back to "normal." She's also extremely lactose intolerant right now and vomits even with yogurt or Lactaid milk.

We had a setback last night which nearly sent us back to the hospital. After talking with her GI docs today, they think she experienced "intussusception," where the bowel telescopes into itself causing great pain. It was horrible - she was screaming, writhing and spitting. After having so many good days, this was so upsetting to see! We were packing to go to the ER and then it stopped, and she fell so soundly asleep in my husband's arms that we were worried! The docs said with her intestines SO inflamed right now (based on biopsy results), and her increased appetite/eating more, and her other history, she is more prone to intussusception and basically that it could happen again!

That is us for now. Please let me know if you have any encouragement, especially about the intussusception or the long road I sense is ahead of us. I look forward to getting to know all of you!

~Theresa/ KierasMom

Mom to Kiera Grace, dx with celiac disease 10-14-05

[Guest nini]

wow... you're poor lil angel has had a rough go of it... hopefully from here on out it should start to get better.

my daughter was three when she was dx, after I had been dx (at 34 years of age)...

Keep in mind she may have other food intolerances too, at least until her poor intestines heal, so you will want to keep her gluten-free diet VERY SIMPLE for now.

We noticed an improvement with my daughter within a week of being on the gluten-free diet, but with me it's taken much longer as I was much older by the time I was finally dx. Hopefully at this stage in the game, your daughter will heal relatively quickly and before you know it, you won't even know she was ever sick!

Feel free to private message me or e-mail me at nisla@comcast.net if you just need another parent to talk to or if you want any ideas for gluten-free snacks or meals.

[taweavmo3]

Welcome to the board! I'm glad to hear your little girl is one the mend. Poor baby! This board is such a great source of information, I could not have gotten through the past six months without it. I feel like a pro now.....which seems so weird to say, seeing as how in the beginning, I would come home from the grocery store in tears. It is hard at first, but it gets so much easier. Grocery shopping is a breeze now, not quite as easy as pre celiac days, but pretty darn close. I know the brands I can trust, and just stick with those.

I hope your daughter continues to thrive, and that her hospital days are over! My little boy was in the hospital a while back with Rotavirus. Our doc believed his intestines did the same thing......in the middle of the night he woke up screaming, and didn't stop for two hours. Nothing helped, we tried walking around, Tylenol, different positions etc. Even the nurse was frazzled, which freaked me out even more. Then out of the blue he stopped and fell straight asleep. He still had a few issues for a month or so after, but now he's fine.

Good luck on the diet.....keep us posted on how she is doing! I think you will be amazed by the changes you see, it is really remarkable.

[MySage]

Kiera's Mom,

In reading your story, ours is very similar, espeicially the intussusception . In all of our doc visits I have never heard of another child who experience this with Celiac.

Sage was 15 mo old when she experienced the same conditions as your daughter. In and out of the hospital for 2-3 weeks. She had the surgery to undo the intussusception as well as the bioposy to confirm Celiac in January.

I can say that the intussusception incidents seemed to get less frequent and less intense once the diet was underway. We were able to introduct milk about 3-4 months later after the gut had some time to heal. It is now 8 months later and Sage is doing wonderful and thriving.

Stay strong - she's going to need you.

[KierasMom]

Thank you all for your kind words. Kiera really is such a trooper, I can't complain. I think at this point I'm in worse shape then she is. I forgot to mention I'm 6.5 mos pregnant and due with #2 January 20, 2006! Right now I just need a few good nights' sleep to catch up, but Kiera is having a hard time sleeping without us...i.e. she is in our bed! We've never been interested in co-sleeping so this has been an interesting change for our family.

I'm sure I'll be here alot with more questions as things move along.

[Smunkeemom]

My daugter went through a simliar struggle. She got really sick at 11 months and was in and out of the hospital for a month. She was sick enough to be in the ER 7 times in one month and was admited 3 times, she had intusseption (never did learn how to spell that) they did the surgery and sent her home and she was still sick, I had to cart her back to the hosp 4 times before she was admitted and finally diagnosed with celiac. At 10 months she weighed 24 pounds, by the time she was a year old she had dropped to 8 pounds. they kept telling me she was okay and I kept demanding someone figure out what was wrong. They kept sending her home and I kept bringing her back. It was very stressful. She ended up on an NG tube but kept throwing up what they were feeding her, she was stuck over 100 times in April/May trying to start an IV, and ended up getting a central line with TPN.

Now why did I tell you all this?

Because I have great news (no it isn't about my car ins.lol) We got her 100% gluten-free and it wasn't 6 months and she was like a whole new kid, she gained weight, had energy, and was healthy. She is 2 now and when people meet her it is hard for them to believe she was ever sick. She had gotten developmentally delayed because of being in the hospital bed for so long, she didn't even have the energy to pull herself up in the crib, she was back on track 2 months into the diet and is ahead now. There is hope, it will get better, and your daughter is lucky to have someone who loves her so much. If you ever need encouragement or need to vent this is a good place, if you don't want to vent so publicly though here is my email smunkeemom@yahoo.com. I will keep your family in my prayers.