Newborn w/ HD questions -

Hirschsprung's Disease
#21

TRUST YOURSELF> Go to another Dr. you like and can trust. It is very frustrating–we had and still have some of the same issues as you. I had one GI Dr. that helped some, but the rest has all been trialand error on our (parents) part. They just dont knowe how to help in the medical community sometimes–especially becaus eevery kid is different weith this diagnosis. It sounds like you know something is wrong. Maybe try going to a naturalist Dr . Have they mentioned NID to you?? Has he ever had surgery? Our son had to have his pull thru re-done after a year because some of the HD tissue was retained—a very tiny amount–but it made him very sick until he had the surgery.

Tonya

----- Original Message ----
From: desgei hirschsprungs-cpt6175@lists.careplace.com
To: tonya_d_stewart@yahoo.com
Sent: Wednesday, October 3, 2007 2:47:54 PM
Subject: Re: [hirschsprungs] New born w/ HD

#22

I am so glad to hear your story. Our son is 4 1/2 now and doing well most of the time. His poops are soft as well–he has never made a well formed BM, except looking like a loose ribbon. I manage him mostly with a healthy diet to–I do have to give him Miralax periodically–if its 6 at night and he has gone all day wothout a movement, I give him 3 ounces of it and it works. My biggest frustration is the leaks between BMs, some days he had to change his underwear 4-5 times. I worry as he gets older about the emotional issues this may bring up if we cant get thisunder control soon. DOes your daughter have “leaks”? I know she is a little younger…
At her age, my son hid to have his bm’s too. He doesnt say it hurst anymore tho–although if he eats too much sugar (ie Halloween!) he gets very gassy and has explosive diarreah for about a week.
I’d love to hear more about your daughters issues and how you manage them.

Tonya

----- Original Message ----
From: jmhwales hirschsprungs-cpt6175@lists.careplace.com
To: tonya_d_stewart@yahoo.com
Sent: Wednesday, October 3, 2007 1:44:40 PM
Subject: Re: [hirschsprungs] New born w/ HD

#23

Hi everyone. I am new to this site. I have a question for those of you who manage to control HD with diet. My son had a colostomy put in at 3 days and it reversed at 2 ½ months old. He is now 8 months old and showing problems again. He refuses to eat most of the time as when he does eat it will be a teaspoon at the most. He’s starting to block up about once a week and then he starts vomiting and cries in pain. The docs can not see any sign of blockages from x-rays. Has anyone else experienced similar problems? I would also appreciate any information on what foods are beneficial and what foods to avoid. My doctor told me that banana’s can cause constipation. I’m also looking for fellow parents who live in Australia and the names of any specialists of HD. I would like to take my son to another doc to get a second opinion, but I want to find someone with experience. Can anyone help?

Rosie

P.S. Americancyco. I feel for you. I know it is an extremely difficult time for you. But it does get better. Although my son is still having problems, most of the time he is fine. He laughs and enjoys life like a normal child. I know the feeling of feeling guilty. I think we all would do anything to take the pain away from our children. Just remember that they are so strong. They bounce back so quickly. After a week after the operation my baby boy was smiling again as if nothing was wrong. Just take each day at a time and don’t stress about the future. Every case is different so you shouldn’t worry about what might happen. My thoughts are with you and your baby boy.

#24

I sure hope the pooping gets better for you soon. I know with my son he had to be on special hypoallergenic formula and couldn’t tolerate many things and is now a year a half and still can’t eat stage three Gerber… So, these kids sometimes seam to be sensitive. I also get things at the health food store to help him poop that are natural. A few things to try are flax seed oil, aloe vera juice, and magnesium (they have a powder called calm for babies). other than that juice and fruits and peas. I also heard that squash can constipate… if the natural things don’t work I would go to suppositories or miralax
Truly,
mary

----- Original Message ----
From: Rose-mary hirschsprungs-cpt6175@lists.careplace.com
To: marycoody22@yahoo.com
Sent: Sunday, October 14, 2007 10:31:48 AM
Subject: Re: [hirschsprungs] New born w/ HD

#25

My daughter is Danni and she is 5 with total colonic Hd. Some of the food we have to avoid are (i know he wont be on some of these) oatmeal(even as a baby she would ger gass pains, Broccoli, orange juice, cauliflower, nuts, and when costipated apple sauce. Apple sauce has pectin and that is a thickener, just like bananas do. I use both now because she is loose all the time. These are some things though that you may look into. You can also ask to have him put on Reglan, and zantac. Both are safe drugs and wonderfully helpful for gas and also eating problems. Danni ate small amounts to when she was young, so I tried to feed often. Another thing that may be a problem is rice cereal. I don’t know though but I do use it when Danni needs to be thickened. I do find it one of the easiest baby cereals to digest though. Danni now has a feeding tube and when she is sick I still put baby rice cereal in her tube. It is such a trial and error game with these things. Seeing
another doctor for a second opinion may also be a great idea. You may want to try some of the Hd yahoo supports groups too. I got tons of help from members there…Have a great day, Gen

#26

Hi Rosie,
I have a 3 year old with HD that we manage with diet. We experienced similar
problems when she was a baby. It got easier when she was able to eat more
foods. Back then we stuck mostly with fruits (not bananas) and the green
veggies. Some of the orange-yellow vegetables seemed to back her up and baby
cereals backed her up as well. Pear juice seemed to be a wonder for her, as
well as pureed prunes and plums. The trick though was getting her to eat,
which it sounds like you have a similar problem. My daughter was on zantac
because she tended to get upset and have reflux issues that kept her from
eating. We also put her on the hypoallergenic formula, which was a little
more expensive but definitely worth it. With all of that we seemed to get
buy and only used miralax or suppositories a couple of times. Every one is
different though, but I hope you find something that works. As he gets older
it will most likely get easier because his stomach wont be as sensitive and
he’ll be able to eat more foods.
Hang in there. I know how hard it is to watch a little one suffer.

Janae

On 10/14/07, Rose-mary hirschsprungs-cpt6175@lists.careplace.com wrote:

#27

Thanks so much ladies, I feel a bit more relieved now that I know others who are going through similiar problems.
I have a couple more questions.
Gen you said that apple sauce is a thickener. Does that mean pureed apples might be causing him to block up? Jais poos are also runny, but it can take days for them to come out - Like an explosion. I’m wondering if the pressure finally pushes it out.

Also Mary, you said that your child was on Zantac due to reflux. How do you know if your child does have reflux problems? Is it just trial and error to see if they improve after giving them it.

Thanks again for your advice.

Rosie

#28

I have heard that apple sauce can constipate. Yet, many people say it helps, it’s confusing to me. People say that apple juice is ok but not the sauce. Also, I wanted to mention that at the Health Food store you can also get something called Gripe Water and that also helps them poop and calms their tummies… I think it was someone else who mentioned Zantac and Reglan but I also used Zantac and Reglan when Jonathan was younger and it did help some but as far as knowing if they have reflux, usually they spit up allot and hurt after feedings (it also helps to keep reflux babies in an upright position) but for Jonathan that cleared up after the surgeries…
Truly,
Mary

----- Original Message ----
From: Rose-mary hirschsprungs-cpt6175@lists.careplace.com
To: marycoody22@yahoo.com
Sent: Sunday, October 14, 2007 9:44:02 PM
Subject: Re: [hirschsprungs] New born w/ HD

#29

Yes, apple sauce and pureed apples have pectin and pectin thickens bm’s and can cause constipation. In fact I use the liquid canning pectin along with amodium to thicken Danni’s b.m.s
Reglan can also increase appetite and help the child gain weight. I even used it to create more breast mild. It is safe and has multi uses.
Zantac takes the acid out of the stomach to not just used for reflux, in fact Danni has never had reflux. It takes the pain away for her. If you have any questions feel free to ask. In my five years with this I have learned plenty, plus I have a child with cp and he has constipation issues. Hope all have a good evening…Gen

#30

It is only the doctor’s responsibility to tell you what can truly happen. After all you had HD, and you are still here. Keep your thoughts positive and direct your prayers to God. He will indeed take care of you and your son. Remember, rarely do children die of HD in this day and age.

#31

I’m from the UK and there doesn’t seem much support here on HD. My daughter has the long segment HD, she is now 3yrs old. The docs operated on her when she was 2 days old and she had an ileostomy bag for 8 months, it was very scary to change her bag but u get used to it. She had the pull through but the docs bypassed her large intestine as it was all affected. she has chronic diarrhea, very watery so I have to give her medicine everyday to reduce the amount of times she does it. I make sure shes well hydrated and has enough vitamins and minerals. I thank God cos shes a healthy normal 3 yr old. If there’s any suggestions on how I can control the consistency of her diarrhea to make it thicker so she doesn’t leak all the time I’ll b very grateful.

#32

My son is 11 months old and was diagnosed with TCHD at birth. Had an ileostomy on the 2nd day of his life and did the pull-through when he was 5 months.

Things are going well, we have transitioned him to solids. His poop consistency has changed from being liquidy to more formed based on what he eats.

He is a happy kid most of the time except when he has a bad rash (that’s what you need to prepare for after the pull-through).

It get’s better and I hope it stays this way for us and I will pray that it gets better for your son too.

#33

My son also had a bad nappy rash after his pull through surgery. I tried every cream to get rid of the rash. I found the butt balm reciepe on the internet and it works wonders. It is really thick and sticks to the skin not like other nappy rash creams that just wipe off.

I took the recipe to my doctor who wrote a prescription for the ingredients. Then I had to hunt down an pharmasist who would make the cream. I recommend it to any child with a nappy rash.

Butt Balm Recipe
The recipe for butt balm is: a four ounce tube of Desitin® ointment, a one ounce bottle of Stomahesive® powder and a 1/2 ounce bottle of Mycostatin® powder combined to create a cream the consistency of peanut butter.

http://pedsurg.ucsf.edu/conditions--treatments/hirschsprung’s-disease/hirschsprung’s-repair-homecare.aspx#a6a

I hope this helps.

Rosie

#34

Congratulations on your new baby boy. I’m still new at this too and I know how scary this all can be, and I’m just the grandmother. I know it’s much easier said than done but please don’t blame yourself for your son’s condition. No one on either ours or my son-in-law’s family has HD so who knows why or how it really happens. The worst part for me was the waiting while tests were being performed to diagnose what was wrong with my sweet, newborn baby grandson, Gaven. Before he was 36 hours old he was being operated on. It was a very scary, confusing, helpless and surreal time for all of us. Seeing him lying there in the incubator with tubes and monitors in the neo-natal ICU of the hospital was very difficult. We practically lived at the hospital for the two weeks Gaven was there. For several days all we could do was stroke Gaven’s tiny head and talk to him but he knew we were there. The people here in this support group are very caring, very supportive and informative. Any question you ask will be answered; I can guarantee that. I’m not nearly as knowledeable as alot of the members but I can offer my positive thoughts and prayers. This scary time will pass. I know gaining knowledge helped too. Please keep in touch and let us know how your son is doing. I hope it helps in some small way to know you’ve come to the right place. We’re spread out pretty much around the world, but you’ve got our support. Take care. Debbie