What is wrong with my child?

[wdwmom0f3]

I am not sure, but could it be crones disease? (sp?) There is a girl at my dd's school who has a lot of issues, kind of like this, and it turned out to be this, after dealing with it for almost two years.

 

[Shelly888]

My first thought was food allergies as well. I would strongly recommend getting her tested. The fact she has one puts her at high risk of having others. Themost likely being dairy wheat soy and egg followed closely by corn. Even if she has tested negative before. My son has had anaphylaxis to wheat soy egg and dairy at different points of his life. He even grew back into previosly "outgrown" ones.

There is a wonderful book by Doris Rapp, MD called is this your child or close to that get it and read
It. Talks about tics constipation lots of nontraditional symptoms of food allergies. Good luck and hugs to you

 

[sue1013]

Your poor DD certainly has been through a lot. If she were my child I would not waste another minute on your GP and run to CHOP. Her problems started with GI that's the doctor I'd get her into see at CHOP.

 

[Christine]

Your poor DD certainly has been through a lot. If she were my child I would not waste another minute on your GP and run to CHOP. Her problems started with GI that's the doctor I'd get her into see at CHOP.

I agree. I think a GI specialist is the way to go here. It definitely sounds like there is some "condition" at work here and I'd probably be wanting to get a look, top to bottom, so to speak of her digestive tract.

My son has multiple food allergies and doesn't even come close to having issues like this. I realize that everyone is different but there are just some things here that don't add up to solely food allergies.

 

[katlas&kids]

We went through this also. the constipation part anyway. And yeah, he wouldn't eat cause he didn't want to poop. Part of it was the having to wipe his bum and the texture part of it. Part of it was because it was something he could control. which led into a big round circle.

Our ped put him on Milk of Mag to get the stools softer again, because the longer they sit in there, the harder they get. I can't remember what it started at but it was twice a day to start and then they lowered it after he got started. It took a while and it still isn't his fav thing to do. But he his on meds & is stable (bi-polar, adhd, ld) now, which we didn't know until almost 4 that he had the bi-polar issue. (not saying you have it there, but what we had here.

We also got him flushable wipes and that has helped him a lot. Just have to make sure they don't use the whole box at once!!

 

[r1lissa]

I don't want to scare you, but every possibility should be considered...
have the doctors checked her stool for parasites or worms?

 

[WeLoveLilo05]

He called and gave me the name of the neurologist to call, he had spoke w/ her prior and it sounded like they were going to try and squeeze her in by the end of the week? I called the number and she wasn't there, neither was her receptionist, a nurse answered and took all my info and said the doc would call us in the AM.

GI doc is also trying to set up an appointment for an MRI. When I hear the word MRI I automatically think brain tumor and cancer, I am very upset right now.
ugh, should I wait and see what this doc says or call her allergist in the AM and see when we could see him and what he says. Although last time we had to wait 2 months before we could see him.

 

[daughter_of_amid_chaos]

Just because she tested negative for Celiac does not mean she doesn't have it. I tested negative for Celiac for 4 years before I tested positive for it. Last negative test was in August, positive test in May.
A scope is the only way to tell if the gluten has damaged the villi but I would have a blood test done again just in case.

I had all the symptoms but kept testing negative on the blood test. If she is going to get any test for Celiac gluten must be in her system--gluten is in wheat, oat, rye, and barley. Consider this before trying gluten free.

Also has her gallbladder been looked at? Mine was so full of stones it was not functioning causing some of the symptoms you have mentioned.

 

[sunnyday123]

I have no suggestions but wanted to let you know I'll be thinking of you and your daughter and praying for a positive outcome.

 

[WeLoveLilo05]

Thank you, we have an appointment with the neurologist tomorrow @ noon. I am up all night looking for different answers, goggling different thing and Feeding and Swallowing disorder seems to match DDs symptoms to a tee, I am going to mention this to the neurologist and see what she thinks. Children's Hospital in Philly has a special center just for it.

 

[mommasita]

Thank you, we have an appointment with the neurologist tomorrow @ noon. I am up all night looking for different answers, goggling different thing and Feeding and Swallowing disorder seems to match DDs symptoms to a tee, I am going to mention this to the neurologist and see what she thinks. Children's Hospital in Philly has a special center just for it.

to you. Try not to exhaust yourself too much overnight. I know it is easier said than done, but it is so true. You will need all your strength tomorrow.

Sending out lots of great thoughts and prayers.

 

[Pig Pen]

I recalled an episode of Mystery Diagnosis where a child had chronic constipation along with a host of other symptoms and he was finally diagnosed with Hirschspring's disease after years of suffering. The intestines or colon are missing the ganglion nerve cells that push bowel movements out of the body. Everything just sits there.

good luck today.

 

[Sammy]

OP, no advice...I just wanted to send good thoughts your way. We've had some neurologic and cardiac issues with DD over the years. Luckily, her problems ended up being relatively minor, but I know how scary it is when your child is ill...especially when no one can figure out what's going on. Good luck to you