My son started acting a little different about 2-3 weeks ago. He will start to cry and draw his knees up. It seems to me that his tummy is hurting him. At first I was not sure because he just started cutting teeth and I wanted to wait to see if it would go away, well it has not. It seems almost like cramping or gas. I am sooooo concerned and plan to make an apt to see the surgeon next week. I wondered if any other kids did the same thing. I have not changed his diet, he is eating the same foods that he was before the pull through. He does not do this everyday, but maybe every other day.Have any of you experienced this before???
I’m not sure how old your son is- it sounds like he may be a little older. Chase is 3 months (had pullthrough at 3 weeks)- he does cry sometimes when he is gassy or trying to poop. He was colicky for a little while and the crying was pretty bad.
He is breastfed so sometimes it is worse depending on what I have eaten- onions, garlic, and milk can make him gassy. The crying doesn’t seem to be much different than a non-HD baby. Sometimes he will also stiffen up and straighten out his legs like he is trying to hold it in.
I did read that after surgery HD kids can have pretty bad abdominal cramping. I would stay away from any foods that may cause gas. When he is really gassy I’ll (gently) bounce him on his lower tummy across my knee. It seems to really help him get the gas out.
My son about two weeks ago started kinda doing the same thing, we seen the surgeon and his GI doctor they both seem to think he is having gas pains. My concern is he strains so much to go poo, so much sometimes he vomits! His stool his still like mashed bannana sometimes more watery if he is on an antibiotic. Why all the straining when it’s not even formed? Sometimes I honestly think the doctors just don’t have all the answers on HD. Hope your little guy is doing better. It’s hard to believe my son will be a year old on July 6th, only weighs 19lbs and is only 26 inches long.
My son who turns one next week also has lots of tummy pains when he gets gas. It’s been really bad lately, not sure why. We haven’t had any huge changes in his diet, and i try to stay away from things that would give him gas. But we’re trying to wean him off of formula and on to table food, although he’s still on 3 bottles a day. He only weighs 18 1/2 pounds and the surgeon is concerned, so i’m nervous to take away a huge source of his calories. Ugh.
Anyway, I wonder if it is just gas, maybe you could try some of the gas drops that are for infants? maybe it would be that simple to help the gas pass? I’ll be curious to see what your docs say.
We saw the surgeon and he did not think that it was anything mechanical. I have been giving him the Mylicon, but it does not seem to really help. My surgen indicated to me that babys go through things like this, even normal babies without HD. I am thinking that it is like a cramping, but that happens to people on occasion.
My DD has had these symptons maybe five times since her surgery March 2. We give Katie simethicone, tylenol, and do our best to soothe her when this happens.
Just be aware that these things can turn very nasty. My 3 month old suddenly started screaming and pull his legs up. I took him to hospital and he had adhesions (caused from his 1st surgery) and a twisted bowel. They ended up having to remove a fair amount of small intestine and he was very sick… be aware that adhesions can happen anytime and enterocolitis can also be a big problem- be persistenat because non-specialised doctors might not pick up on it.
good luck
My son is 6 months post pull through and turning 1 next week. He has not had the cramping as bad as the straining, pushing problem - sometimes all day. Then screams in pain because of the diaper rash (hopefully not due to something else). Surgeon told us the same thing - mechanically sound. Diet consists of high fiber foods, lots of water, and regular stuff. We are frustratred because we just can’t get that balance. Wondering if anyone had any suggestions.
My son is still going through this and we are now 7 months post pull through. I am frustrated because I know this is not right. He is now walking and a little older and I think I have a better handle on how to read him. I am going to make another apt wiht the surgeon and a GI to get to the bottom of this. He does not seem to have a problem with bowel movements, he still goes quit frequently. He will be playing and happy, then all of the sudden he screams as if he is in pain, then you hear his belly gurgle. Have any of you experienc this???
Its amazing that a lot of our kids have similiar problems. We were very concerned and scared when my son screamed in pain while pushing - which he would do most of the day, and not be able to get much out. The surgeon’s can only recommend doing more tests or more surgery (which of course we are trying to avoid). Gavin has had 2 surgeries already and we don’t want to put him through any more anguish if we can avoid it.
We’ve been real lucky lately - no more screaming, diaper rash under control, getting real bowel movements every day. We figured the -pushing all day with screaming with no real poop - was constipation. Actually ended up doing washouts on him to relieve the symptoms.
After much research our combination in this; 1 teaspoon of benefiber divided into 3 bottles for the day. 1/4 teaspoon of miralex in a bottle of 1/4 prune juice + 3/4 water in the morning. High fiber diet mixed with whole fat and lots of water to drink. We’ve had 3 good weeks and hope this keeps working. We all know this disease is trial and error. My personal opinion is GI docs cant really help but a Nutritionist familiar with HD could be the answer. If you Google Cincinnati Childrens Hospital, they seem to have the most experts on HD in one location. We actually considered going there for a second opinion, and we live in Florida.
My son had similar issue, but i noticed his tummy would get huge after eating, but it was flat first thing in the am. The surgeon (Dr. Nick Poulos) said he was just gassy and would always be that way. Well, mother instinct took over as I knew that was not it. Long story short, my son didnt have enough intestine removed the first time and had to have an ostomy aagain, they removed 3 more feet of intestine, then a second pull thru and has not had abdom. pain since. Of importance i think too is that they also diagnosed him with neuronal dysplasia in his remaining intestine.
Best wishes and I hope you find out what is going on soon. My prayers are that all is well by now!