Hirschsprung's? - Page 2

[AndVeeGeeMakes3]

Oh Mama, I totally totally totally totally understand how you're feeling. Oh my god, do I. I'm so sorry that there are just no freakin answers. Like you, I would say heck yeah to surgery if it would help her, and DH feels like yours does. And THAT makes me feel really alone, in a sense.

Don't get me wrong, he's awesome, and he doesn't want to see our little one suffer "extra."


Is there some reason you can't still ask for the Sitzmark?


So many hugs to you! Hang in there.

[seren]

Originally Posted by AndVeeGeeMakes3

Is there some reason you can't still ask for the Sitzmark?

I don't know. The surgeon is an hour away. The pediatrician sucks, but I was told about another pediatrician that my friend goes to and she swears he will really listen. Someone suggested celiac disease and not everything fits, but it looks like a few things could. It's all so confusing. Dh and I talked about maybe trying a gluten free diet, but then I read that if you are going to get a test that you really need to be eating what you normally eat. It looks like first you can do a simple blood test. Why do they have to be such hard decisions?

[rugbymom]

We don't have answers either. It is sucky, but constipation is a problem for lots of kids (so say my nurse friends). I also have friends whose kids were on Miralax for 10+ years. I know it's not fun to be on medicine that long, and there are really scary stories about Miralax online, but unless you can get the constipation under control some other way, it is necessary. My son won't eat when he's backed up, and I assume most kids are like that as well.

I would definately try altering his diet. (I am for my son, we will be going gluten free as soon as I go get the ingredients for some recipes. We are already dairy and soy free.) The test for celiac is very unreliable unless you do the biopsy (or is it a scope?). Constipation is a symptom of food allergies. The food allergies forum has lots of information (it is overwhelming, though, because some of those ladies have read a TON). I am debating going to an allergist, but am really sick of doctors. I think just taking out wheat would be less disturbing for my son.

I also wish we could just have an answer, but it doesn't always work that way.

[Ada_S]

Our daughter was also horribly constipated as an EBF'd baby, basically since birth. She was tested for Hirscsprungs, but also negative. Once we started solids, she was on fibre supplements, stool softeners and a high-fibre diet to no avail. In the end, it's quite likely coeliacs disease. Removing gluten from her diet cleared up the constipation entirely.

She wasn't tested before removing gluten from her diet because nobody thought it was likely (she's not "typical" coeliac)- but, for us, it was a clear difference in her behaviour, her bowel motions and just about everything else within weeks of removing gluten.

I hope you all get some answers, ASAP. It's awful to watch your LO suffer and not know why.

[seren]

I switched to a new ped today. I didn't know where was one in my small town. She's new to one of the clinics here. I saw her and explained Sam's whole history. I asked for a Celiac blood panel and she agreed that was a good idea. He hates them and it can be a fight, but it's way less invasive than a biopsy. I didn't know if she would diagnose him at Celiac without some sort of test and for some things (school, camps, etc) a diagnosis is important. SHe did tell me that the responding favorably to the diet helps make a diagnosis, so we're all going gluten free tomorrow. She also did another x-ray, surprise surprise, he's already constipated. She's sending us to the GI's at the Children's hospital. She was so nice and I love how she listened. I signed papers to have all my kids records transferred. She said she would call me with the results. She said she would have them by Friday, but said that was a big overestimation. She said that I couldn't bother her with phone calls, meaning, it would be impossible for me to bother her. I'm so glad I called her office this morning.

[seren]

Blood test was negative. I feel so discouraged. I know there is something wrong, but I don't know what to do any more.

[AndVeeGeeMakes3]

I'm so sorry. I really understand how you're feeling. I hope you get some answers soon. Or, even better, I hope ds's condition improves like crazy.

[seren]

The Miralax is now giving him diarrhea, so we're to change the dose and call the ped back on Tues. Part of me just wants to quit. Part of me wants to keep looking. Just a blood test is a kicking screaming fight. I feel like crawling in bed and crying. At what point do I just give up?

[AndVeeGeeMakes3]

We've never found a happy medium with Miralax, meaning, it's all or nothing. Diarrhea or Constipation. And it has a particular smell that we call eau de Miralax. I know it's difficult to see this stuff, to deal with it.

[seren]

So it's been two weeks completely gluten free. Sun, Mon, Wed, and TWICE today Sam had spontaneous bowel movements. No more Miralax!!!!!! I honestly don't know if it's Celiac, and I'm not so sure I care anymore. Although, I admit the tax credit with a diagnosis (for our increased grocery bill due to gf) is a lure. Sam is pooping, Noah isn't having mucusy diarrhea or a facial rash, I think Madalyn has stopped having night terrors. It's just mind boggling. I told Sam how excited I was that he could go to the bathroom without medicine and he said "Yeah, but I love gluten* He makes me laugh.

[Ada_S]

Originally Posted by seren

I honestly don't know if it's Celiac, and I'm not so sure I care anymore.

It's crazy how much of a difference it can make, isn't it? I was SHOCKED when DD was... suddenly cured. It was like having a different baby.

With or without a diagnosis, I'm glad you've got something that's working, it makes all the difference in the world

[AndVeeGeeMakes3]

We're having some success, too, though with another tack. Still doing Miralax, though I've reduced it to only half an adult dose per day, and have FINALLY (thank you insurance!) started high-dose probiotics. She's having regular-ish bms -- at least pretty much every day. So, like you, I'm happy. Before, even with Miralax, it wasn't every day. We had to go of it while she was in the hospital (four days), and, sure enough, no poop. But, we're back on and going . . . . .

[ericswifey27]

Originally Posted by seren

Blood test was negative. I feel so discouraged. I know there is something wrong, but I don't know what to do any more.

What was tested? IgG, IgE, IgA? My husband's niece tested positive for celiac only after doing all 3 of those markers, and a gut biopsy of some sort? and also comparison of the levels when on gluten, and when off of gluten.

We didn't get my son tested for celiac and I wish we had- I just couldn't keep him on gluten when I knew it was causing so many symptoms. We have seen so many improvements in his behavior and health. He also had constipation issues, especially around 2 years old. We also have bad memories of our kid "giving birth" to monster poops after going for a week and a half with nada!

[Lkg4dmcrc]

I am so sorry I did not see this earlier. My son has Hirschsprung's and has had many complications from it so I somewhat think I am an expert.

It is pretty rare to get a Hirschsprung's diagnosis outside of infancy. Kids who truly do have Hirschsprung's and are not diagnosed until later are very sick kids. In addition to constipation, they do not grow, they end up in the hospital a lot for dehydration and have many other signs of ill health including delays. The typical walking, talking constipated 4 year old with no other signs of health problems, does not have Hirschsprung's.

Constipation sucks. I hope this gluten free diet continues to work.

[seren]

I had joined a yahoo group for parents of children with HD and it seems like a lot were more like my son than what you are describing. My son is doing well now, but when he was a much younger he wasn't even on the charts for growth. From 9-15 months he gained 4 oz. He had a severe speech disorder, even dh and I had a hard time understanding him. He was in kindergarten and wearing 3t clothes still. He actually didn't start really gaining weight until we started seeing the chiropractor.

I'm just thankful that isn't what he has. I'm not thrilled about a gluten free life, but it helps 3 of my four children with various issues and I think it's helping me as well.

[rugbymom]

I'm really glad GF is working for you! That's great news. We have been GF for a little over 2 weeks, and it isn't working for us as far as I can tell. I'm going to give it a while longer. I'm glad you saw changes so quickly!