My son will be 15 months old on Oct 6th, he had his pull thru @ 3 months. His GI doctor put him on Next Step formula and I was wondering if any other HD babies had to be on Next Step and if so how long? Austin is doing awesome. he now eats lots of different table foods and has even had a formed poopie! He does still deal with many poops a day (prob anywhere from 4-6) It’s very strange how he can go from having a formed poo to the next diaper being very loose or pastey. I have always used sensitive wipes made by pampers and still occasionaly deal witht the rash. We use sensicare with every diaper change, this forms a great barrier for his bum. He loves his Gerber fruits and even eats meat pretty good but he will not eat veggies! I but the veggie crackers and corn puffs to try to get some type of vegetable in him. He is taking Zinc 1 x day, just recently he had to go thru some testing because he is not growing height wise as much as he should. Austin is 20 lbs and 27.5 inches long, but doing almost everything for his age. He is still cruising along furniture but has taken 3 steps, so it won’t be long and he will be walking.
I love the name Austin! We are in TX and have some family down there- such a fun place!
Chase’s is 6 months old and his pediatrician said to try and decrease his formula/breastmilk intake and load him up on fruits and veggies. I’ve cut him back to 4, 6-8oz bottles per day. He takes 3 formula bottles and 1 (thawed) breast milk bottle. I’m giving him water and pedialyte in between bottles to increase his fluids. He eats 3 meals a day of mostly fruit and veggies. Chase weighs just over 17 pounds so we aren’t concerned about his growth.
The doctor felt like the fruits and veggies would help him be more regular with his BM’s- his stool is softer with all the fruits/veggies. We are also struggling with frequency (usually 8 times a day). I guess the next step formula is for growth reasons but didn’t you say you and your husband are on the smaller side in one of you previous posts? It doesn’t sound like Austin is that off track on growth to me.
We also use Sensicare during the day but we use Ilex at night. I can’t use any type of store bought wipe on Chase. I’ve even purchased all natural, biodegradable, unbleached… they all made him raw and bleeding. He has eczema too so that could be why the store brands don’t work for us.
Good luck with everything!
Jo
Jo- I thank you for your reply, and I have that fear too! My husband actually said one day what if while he is sliding in first base when he is older and he poos! I got really upset with him but inside was thinking oh I don’t want my baby to have to deal with so many bm as he gets older!! The worst part is children and even adults can be so cruel, especially if they don’t know or understand hd. I asked the surgeon and GI doctor and they said it’s more likely he will start to need mirlax or something to go, but I think they may be wrong! His stools are LOOSE most of the time, maybe there is something we can give them as they get older to help the frequency. They did tell me we wouldn’t know until he got older if he actually even will know when he needs to go. I do not like to give him all that otc meds, let me know if you find out any good answers from your new dr. I agree I feel bad because before I was wanting him to poo so bad now I pray please let him only have 3 poos today…I know sounds silly but his lil bum gets so bad at times. What kind of feedback do you get from your doctor on the issue?
Ugh…So I debated writing this and I almost feel guilty because I know there are people out there way worse off than us but I’m having one of those days. I guess that’s what we have each other for.
Do ya’ll ever worry that your babies will be incontinent? Sometimes it just seems like we will never figure it out. Chase had a great day Saturday and seemed like his stool frequency was decreasing. Since then it seems like we can’t keep the poop off of him- sometimes we have to change him after just 30 minutes! My biggest fear for him is a life long struggle. He is so beautiful and happy- he loves everybody and has so much personality. I can’t stand the thought of him dealing with 8+ BM’s for the rest of his life.
Some days I don’t even think about him having HD and others I get so frustrated with it. We are seeing a different GI next week in hopes of more answers. I guess we all just keep searching until we find what works. I have this personality type where if something is wrong I just fix it but I can’t seem to fix Chase.
Ahhh- feels better to let the depressing thoughts escape from my mind for a little while.
Jo
Jo,
way too early to even be thinking about incontinence…a good doctor won’t even mention that word to you until potty training years like ages 3-5. I think it was Dr Pena that said it is likely that HD kids are continent or will be. The only way they would not be is if the surgeon “screwed up” in the surgery. We started to think my son was having continence issues because he was leaking stool but then figured out it was actually psedudo-incontinence or overflo of stool. Now we have never had the issues of lots of stool a day we are on the other end of the spectrum with constipation. Maybe things would have been different if Tyler’s HD was dx when he was a young baby.
I have heard from other HD moms that the poop starts to slow down the older the kid gets, the more they eat, etc…I know this is easier said then done but give it time, he’s only 6 months old.
Janel
Well before we knew Tyler had HD when he was that age with low growth and low weight. I too had asked about this formula…now this was 4 years ago but the ped at the time said it wasn’t really a needed thing and that it is just a way for formula companies to make more money. So if your lil one is already on formula just keep him on that same kind for a bit longer before you transition to reg milk.
It turned out milk was causing some symptoms in my son we learned quickly and then at that age he refused to drink the stuff.
I personally think if he is eating a variety of food and doing well then formula is probably not needed.
Janel
Thank you for your reply- those are my thoughts exactly. I know it is early to be so concerned but I just got sad today when I dropped Chase off at school. His teacher said they could hardly keep the stool off of him yesterday- he was even pooping while they changed his diaper.
You’re right people can be so mean, especially when they don’t understand- I don’t want Chase growing up thinking he is different. Our GI did put Chase on Miralax and I took him off of it- I want a second opinion. I think the reasoning behind Miralax is so that they will empty more at once instead of all day long. We didn’t really notice any difference on Miralax except softer stool but when we added prunes to his diet his stool became soft too- the frequency was the same. For now we are searching for more natural remedies. To be honest a couple of his doctors didn’t give the stool frequency the attention it deserved- some nights he even poops in his sleep. Our new pediatrician does think it is a problem that needs to be corrected. She said that potty training his hard enough for a normal baby and that we have to give him a head start by getting his bowels under control now (even though he is only 6 months old). I even emailed Dr. Levitt (leading HD specialist) to ask his opinion on Miralax and Chase’s situation. He said Chase should have 1-2 BM’s per day and that he was not a fan of Miralax. I believe that any kind of daily medicication at such a young age will cause dependency.
Diaper rash is so frustrating- it can be totally fine and this raw 2 hours later! Somtimes it really is a loosing battle. The night time poos make me saddest of all- his bottom is so red in the morning even though sometimes it is such a tiny size poo.
I’ll make sure to post after we see this other GI. I keep praying for an answer but we just don’t have it yet. I’m so glad I can connect with other parents having the same struggle.
Jo
Frequent stool is one of our concerns as well. My son has TCHD.
I equate this to having his colon removed from colon cancer.
Adults can and do overcome the situation and so will a child.
Our Dr is one of the best. He is out of CHOP (Philadelphia)
He won’t even think of doing the pull through until Jake is 1 year old. He is 5 months now and 17lbs. A long ways from 5lbs when he had the ostomy done.
It was explained to us that the frequent BM’s are from all the cutting and splicing of the bowels. Over time, the good section of the intestines will start to take on a new role in the body.
It may take longer for this to happy with a child, but it will.
I know it is easier sad than to live the situation, but hope is all my wife and I have. We tell ourselves everyday that there are so many other children with much worse conditions.
I also debate with myself if we should follow through with the pull through or if we should accept the ostomy and take that route. The one good thing is that if incontinence is a problem, you can always go back to an ostomy for life.
It has been the wildest 5 months of my life with our son but I wouldn’t change it for the world
I tell my wife that when god made our son, he broke the mold, but forgot to take him out first 
Stay strong and remember the venting to strangers is some of the best medicine
njcowboy,
Thank you for your response. I totally agree with the colon cancer comment- my husband works with a man who had surgery for colon cancer. He and Chase struggle with many of the same problems. Living in the NICU for nearly a month did teach me to be grateful and take nothing for granted. So many people do have it worse. Are they waiting on Jake’s pull-through because he has TCHD? Chase had about 11cm removed- fortunately he never had an ostomy but I have considered that as an option if he is incontinent. I would still try for the pull-through…you can always have it reversed if things don’t go well.
Thanks to everyone for the support. Sometimes I just have these days where I get down. I just want the best for Chase. I never imagined love like I have for him.
Jo
Our doctor has been doing HD surgeries for 29 years. He is an artist when it comes to the GI area.
He told us even if the biopsies come back with short segment that he was doing the ostomy. It is his standard operating procedure. He believes that giving the intestines a chance to heal, free from stool, is essential to not having entercolitis problems down the road.
I was not happy with the thought of an ostomy, but it really is not bad at all.
His target weight for the surgery was 14lbs and 1 year old. I am not sure if it would have been any different for SSHD.
We are excited and scared at the same time to get our son all closed up, but because it is TCHD, we were told to expect 2-3 more surgeries from reconstructing the bowels, to the pull through then finally closing the ostomy.
I just had to post, i think we’ve emailed back and forth a little bit. My son Alasdair turns 15 months old tomorrow so our guys are the same age. He weighs almost 20 pounds now and we actually see the dietician at Children’s Hospital. At our last visit they said that they weren’t too worried because he looks healthy, all his bloodwork came back normal and he’s pooping well. He’s just kind of a finicky eater, and his dad is 6’4" and weighs 170. So it runs in the family to be super duper skinny! But the dieticians told us to stay on formula for now to get the extra calories because it can’t hurt. We go back in about 2 weeks for a check in with them to see if we can stop the formula or if we should stick with it for a while longer. Feel free to send me a message off-line if you’d like. I think our boys have a lot in common with their HD.
jessica