We're so unsure?

Hi everyone, I came here to ask opinions. I used to be a member of the Guardian Society but couldn’t find it. Now I’m trying to figure out this site LOL. Ok a short history.My daughter who is now 10 was diagnosed with HD at 3 1/2 years old. She was our first child so we were very inexperienced. When she was a month old, we switched her from breast to formula and she “seemed” consitpated. So we put her on Nutramigen. Thoughout her first year she did great on it with no signs of constipation. We were even able to wean her to 1/2 Nutramigen and 1/2 Enfamil w/ Iron. From age 1 -2 she was on no special diet and only had 1 or 2 “episodes”. Then at 2 when she started potty training we started realizing that something was wrong. Her dr. said that it was due to her holding it. Over the next yr 1/2 she suffered, nothing was working and I demanded she see a specialist. All has been great since her surgery. Fast foward to now. 4 mos ago I had my 3rd child, a boy. He was a preemie and was in the hospital for 10 day after birth. No signs of HD. At 1 month we put him on formula due to me having problems w/ breast feeding. He immediately seemed costipated. It was like a flashback. After 2 episodes of no bm for over 30 hrs , giving him a suppository and constant crying we wanted him tested. His Ped, said to try Nutramigen. All we hear is that it’s normal for them to appear constipated when switching. Well we are not at 4 1/2 months and he cries ALOT. He does have happy times and we go back in forth questioning whether something is wrong or whether he’s just a fussy baby. He does have BMs (about 2 a day) but he often seems uncomfortable. Often his laugh will turn into a cry. He wants to eat every 2 1/2 hours. But sometimes I wonder if it’s just his tummy hurting and he thinks he’s hungry. His Ped. has him on prevacid for reflux also. Things have gotten a little better lately, we can keep him to just crying and whining instead of screaming. He had been sleeping good at night (probably from crying so much during the day, he was exhausted) Now he’s not sleeping good at night. He just squirms and grunts and if I don’t pick him up he’ll eventually wake up and cry but I can hold him and he’s just so restless. Sometimes I can help him pass some gas and he gets better.
It’s just constatly in the back of our minds that he could possibly have this too. Our 2nd daughter never had any problems and doesn’t have HD.

At his age he could just be a really colicky baby. A lot of times they out=
grow it quickly but I know some people that had colicky babies until they w=
ere 9 months old. If he is having 2 good sized BM’s per day I wouldn’t be =
too concerned. Is his belly distended? Is he a good eater? Is the stool =
soft or hard and dry? He is old enough now you could introduce juice to se=
e if that helps him go.

Good luck and welcome to the group!

With an immediate family history of HD, why would they not rule that out?

Can you go back to the surgeon that treated your first?

I honestly believe that alot of the problems that you read on these forums are from the inability of doctors to properly diagnose and treat the disease

My son is allergic to lactose. He has differen reactions depending on the form of it. With milk, ice cream, and cheese he vomits and gets sever stomach cramping. All other forms causes constipation, and cramping.

Shannon, Jake 12 yrs., colostomy 2 days, pullthrough 11 months, chronic constipation, cecostomy 12 yrs, gastritis, h-pylori,asthma, Troy 17 yrs.

Thanks KJ.
He eats ok. Usually every 3 hrs but often he’s so fussy that we feed him at 2 1/2. He takes anywhere from 3 - 5 oz. Somtimes we struggle to get him to eat though. He’s really fat but his belly doesn’t appear to be distended. It’s possible that he is just a REALLY colicky baby. (ALL day long). My other 2 weren’t like that so I don’t know. But I can’t seem to get it out of my head b/c his sister didn’t have symptoms. I’m just so scared that the Nutramigen might be helping him and that we’ll find out later that he has it too. My daughter did exceptionaly well to go though her surgery at 3 1/2 but I don’t even want to attempt that with another child. I’d rather it be now.

I think formulas sometimes can cause problems with babies digestive system. Reflux is very painful so maybe that is why he is fussy. I would also look into to see if he has any allergies to the formula. I know they say that formula is allergy free but it really isn’t it still contains some stuff in it that one could be allergic to. If you are concerned about him maybe having HD I would suggest a surgeon run the biopsy.

Like your daughter my son was also dx late at age 4.5 yrs old but he showed many of the symtoms starting at 6 months old when food was introduced. Even on breastmilk he was constipated.

Good luck.


How can they tell if it’s allergies? I’m not really convinced that it’s HD but I feel like something is bothering him. They have him on med for reflux and have changed meds and dosage but I wonder if that’s really what is wrong with him. The combo of formula and meds seem to have made him better than he was but not like I think he should be. We started him on cereal yesterday and today he’s only had one bm ( I know - Normal!) But we’ll see how it goes.

Allergies reactions can come in all shapes, forms and sizes. Some people can get headaches or neurological symtoms and some can have rash or hives. The list goes on and on…I personally know many children whose common complaint is GI problems and that is how their body reacts to food. I also have food allergies and I get stomach aches and either constipation or diharrea when I eat a food I know I shouldn’t, the same goes for my son.

IMO the best way to see an allergy is elimination diet. Often intolerances don’t always show up on blood tests. But if you do want to do testing I’d recommend skipping the blood test and go straight to the skin prick test, it is more accurate than the blood. But that being said many doctors will not test for food allergies in skin prick under age 2 or 3.