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meeshyo

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meeshyo Newbie
meeshyo
Posted

Hi! I just read your post and you seem to be in a very similar situation as me...but you are a few steps ahead. I was hoping I could ask you a few questions and compare stories. My daughter Madison is 16 months, weighs about 19 1/2 pounds, is a ravenous eater, loves to play, and has been rapid breathing since I can remember. We have been seeing a pulmonologist for months working on her "breathing issues"- as her weight started to plateau. Thankfully, our pediatrician sent us to an immunologist who suspected celiac. She had her blood work done and tested positive on just one of the tests, the IGG. They are scheduling the endoscopy for some time this month at the same time as they do a bronchoscopy (to check her airways and lungs). How did your 20month do with the procedure? I read your post about the horrible IV, I am sorry! How was he/she after the procedure? How long did it take to get your results? Is there anything else you can share with me to help me through this. I am just disappointed it is taking SO long to get these scheduled. Thanks for sharing your story...I hope to gain valuable advice. :D

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genicol Rookie
genicol
Posted
Hi! I just read your post and you seem to be in a very similar situation as me...but you are a few steps ahead. I was hoping I could ask you a few questions and compare stories. My daughter Madison is 16 months, weighs about 19 1/2 pounds, is a ravenous eater, loves to play, and has been rapid breathing since I can remember. We have been seeing a pulmonologist for months working on her "breathing issues"- as her weight started to plateau. Thankfully, our pediatrician sent us to an immunologist who suspected celiac. She had her blood work done and tested positive on just one of the tests, the IGG. They are scheduling the endoscopy for some time this month at the same time as they do a bronchoscopy (to check her airways and lungs). How did your 20month do with the procedure? I read your post about the horrible IV, I am sorry! How was he/she after the procedure? How long did it take to get your results? Is there anything else you can share with me to help me through this. I am just disappointed it is taking SO long to get these scheduled. Thanks for sharing your story...I hope to gain valuable advice. :D

Hi meeshyo! Thanks for asking about Carrigan! I don't know what to tell you about it taking so long. Everything with us went very quickly. The only reason we had any delay in scheduling the endoscopy was b/c the dr was going to be on vacation for 2 weeks. He wanted the appt to be scheduled b/4 he left and we got in right after he got back.

She did fine after the procedure. She woke up in a panic, but calmed down as soon as I held her and gave her something to drink. She was tired and acted like her hands were sore the rest of the day, but was pretty much her normal little self! Her hands are still really bruised, but she has no clue that anything every happened to her. As for the biopsy results, we actually got them really quick! I think b/c I threw such a big fit b/4 the procedure started the dr. rushed pathology. I wasn't expecting the call for 3 or 4 days, but the dr personally called the very next day. This past Monday I got a call from the celiac nutritionist and we had our appointment with her yesterday. Talk about being overwhelmed! She gave me alot of information, but Carrigan was fussy and it was so hard to deal with her and listen to everything the nutritionist was telling me!

Anyways...after the biospy last Thursday, we put her on a gluten-free diet, even though we didn't have the results yet. She is doing really well, but is getting tired of eating the same things! I haven't become an expert yet on what to feed her, but I'm doing my best! Also, her attitude and disposition has really changed! She used to throw horrible temper tantrums and pretty much cried from about 4:00 until she went to bed at 8:00. I haven't seen any of that for about 5 days now!!!! The only time she gets fussy is if she is tired or hungry!

I wish I could give you some more advice on what to expect. I know it's the waiting and not knowing that's the hardest part. Whatever you do...don't take the gluten out of her diet until after the biopsy! If you are like me, you don't want to continue giving her something that you know is making her sick, but if the gluten is removed, the biopsy could give false results. I learned that the hard way. Luckily Carrigan has an 11 year old sister that likes to share her food and would ask if she could give her cheese crackers, rice crispy treats, or whatever else she was snacking on! That was the only reason that they did the procedure. Sissy saved the day :D !

Let me know if I can help you in any way.

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