Seeking Moms with Hirschsrpungs Disease Children

Hello H.,

Yes, My son has it and was diagnosed at birth. He has surgery at 5 days old. He has SSHD. I lived through many many bad rashes. It's horrible. Try going on line and look for a cream called "ILEX" and BUY IT!. It is a life saver!!!! It is costly but it should last a while. I swear by it. It is hospital grade. Use only a tiny bit like a smaear then put vaseline or aquaphor over it so the diaper does not stick. USe a warm wash cloth to clean after each changing. I use to also give him a bath every night in Aveeno oatmeal.

I also belong to an amazing support group that has helped answer so many questions. http://www.hirschsprungs.info. No one ever told me when I left the hospital about the rashes. There were times when my son would tremble becuase they were so bad. THe support group helped me find ilex. There are moms from all over the world dealing with HD.

How is your daughter doing? WHat kind does she have?
My son is three 1/2 and fully potty trained. He is doing amazingly and very healthy.

I know it can be hard with the multiple diaper changes a day and so on...so please email me with any questions! I am always happy to help.
Y.

dear H.,

I don't have a child with this disesase however i am the mother of 3 and have worked in Gastroenterology,

I think that this rash is a yeast infection, from the anti biotics from the surgeries,

Also yeast infections are very common in babies,

ask for the NYSTATIN cream from your Ped,
and use the nystatin generously, alternate with Buttpaste or Triple paste your Ped should have some free samples of both

the Nystain is RX, they also sell something similar over the counter, I think its Gynelotrimin,the CREAM.

read the ingredients and thats how you'll know.

THis should help clear up the infection, or rash.

Also, Try little g Diapers

http://www.gdiapers.com/shop/

these are the diapers i use because my kids were allergic to the material INSIDE the diapers, the gel, and the plastic and rubber, which made them get rashes all the time,

After i switched everything was fine, because its cotton against their skin, they work just like a regular diaper,and have disposable inserts, however i use the prefold cloth diaper insert instead and just wash them, because its cheaper and just as easy.

And wash your baby's bum with water, or a paper towel, paper towel is softer then a wash cloth and you toss it.

M

PS And i don't know what your dietary restrictions are BUT Yougurt, feed her yougurt it can help , the Active cultures are great at cleansing everything out.

Hi H., I do not have a child with that diseas; however, I am a Holistic Health Counselor and I specialize in women and children's health. I would advise you to give your baby organic formula if you are not breastfeeding. If you are exclusively breastfeeding, you should incorporate a high quality fish oil in your diet, such as Carlson's or Nordic natural and possibly add a probiotic., Garden of Life makes a great probiotic. Both of these things are great for eczema and might be beneficial for rashes as well. Also, the probiotic is great for the you and your baby's gut flora,which is critical to maintain health. Good luck and I will put your baby in my prayers. Oh, and hopefully, you are eating organic as well if you are breastfeeding. The baby could be alergic to something that you are eating.

I did a lot of research on it since I initially thought it was my daughters condition. After acouple years of a pediatrician just pumping her up with laxatives and causing rectal muscle damage, some of my family members told me it was in their family also, making it genetic. We researched hirshsprungs and thought we finally came up with a real condition to match her problem, and had to switch pediatricians to actually get referrals for specialists. He was actually offended that I asked for a referral, like I accused him of being a bad doctor....lol But she had all the same symptoms so I did so much research on it.

Now, years of laxatives, stool softeners and unfortunately lots of accidents, a neurologist determined she has a neuro stenosis caused by mild scoliosis and bulging lumbar disks.

Are you questioning about the rash?
Or just info about Hirshprungs?

FYI...my daughter had mild rashes...but 1 rash was absolutely awful! Blistering awful rash. I've read about rashes caused by hirshprungs, and also read that rashes have nothing to do with hirshprungs.
We believed my daughters was caused by high bacteria in the stool. Being constipated with a partial obstruction too long and having the stool liquify to get around the obstruction. The stool, as it was explained, was fermenting. I know...EEeewwwww. Seemed the more odor, the more skin damaging acid and bacteria.
Don't know if I was of any help.

She ended up getting a resection?
Did it work?

Somedays I wish there was a surgical treatment for my daughter, but it's not worth risking paralysis.

Hi H.,
I don't know about the disease, however there is an Arbonne baby product that other moms use for rashes and on a regular basis for their children..infants and up. It's botanically based, all natural and very good.
If you are interested, give me a call ###-###-#### and I'll go over the product with you and get it for you for 35% off.
Love, L.