BellaOnline Forums Family Special Needs Children Reflux, Pediatric GERD, Infant GER and Sleep Apnea

I have recently become aware of the incidence of pediatric reflux among children in general, babies born prematurely, and among children with Down syndrome. Apparently reflux is often listed as a contributing cause to sleep apnea and other sleep disturbances.

There are preferred nursing and sleep positions, medications and other efforts made to accommodate the special needs of children with reflux problems, sometimes known as infant GER, pediatric GERD or EER - Gastroesophageal Reflux, Gastro-Esophageal Reflux Disease or Extraesophageal Reflux.

I will add information and support links for pediatric reflux disorders to the Bella article on Sleep Disorders at http://www.bellaonline.com/articles/art33877.asp

Pam W
SE of Seattle
Sleep Disorders and Children with Special Needs

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My sister has 2 children that have reflux. My niece had a cleft lip and cleft palate when she was born. My nephew has galactosemia. Their doctor really stressed that they should not have any more children. My niece is almost 3 now and has gone through 3 surgeries and her face looks great. There was just a huge hole where her top lip should be and the skin above the lip to her nose was all gone. She is maybe going to have another surgery next year. This is because of a problem she has with her palate.

conniem writes:
>My sister has 2 children that have reflux.

It sounds like she could tell us a lot about how to soothe and comfort little ones with reflux.

>Their doctor really stressed that they should
>not have any more children

How do you feel about the doctor making this recommendation?

>My niece had a cleft lip and cleft palate
>when she was born

Internet resource links for information on cleft lip and cleft palate are at:
http://www.familyvillage.wisc.edu/lib_clft.htm

>My nephew has galactosemia
There are internet information resources on galactosemia at the
Family Village web site (more via the Search function there)

http://www.familyvillage.wisc.edu/lib_gala.htm

Are there accommodations aside from avoiding milk products
that help ease the effects of galactosemia in your nephew?

I hope they are close and you are able to spoil and enjoy
your niece and nephew often.

Pam W
SE of Seattle

How do you feel about the doctor making this recommendation?

The dr that is seeing my nephew for the galactosemia is the one that recommended that they have no more children because both of them carry the gene for galactosemia. Quite frankly, I don't think they want to have another child as both of the children have special needs. My neice is going to require speech therapy and still has some problems eating. She will be having her 4th surgery next year and has an ongoing battle with ear infections. She has had tubes put in twice but one of the ears the tube keeps coming out.

Are there accommodations aside from avoiding milk products
that help ease the effects of galactosemia in your nephew?

My nephew is 5 months now. He is now starting to eat some cereal. There is a huge list of foods that he can't have. He has to have his blood tested every 4 months to make sure his liver is functioning properly. My sister has reading material the dr gave her and I hadn't asked about anything else that they could do that would help.

I hope they are close and you are able to spoil and enjoy
your niece and nephew often.

I don't get to see them near as much as I would like. My niece is a very sweet and smart little girl. She will be 3 in November. I am her favorite aunt, so I guess that means I am doing a great job of spoiling her! My nephew I have only seen 2 times since he was born. When he gets older I am sure he will love me as much as my niece does!!

I talked to my mom about any accommodations aside from avoiding milk products that help ease the effects of galactosemia and she said that they hadn't told my sister of any. They really stress avoiding the foods on this list.

I'm sure it's hard to keep up with all the foods that include milk in them - probably many more than have peanuts ~ I know that families of children who have peanut allergies are always on the lookout, too. I am glad that your nephew was diagnosed early, and has a concerned an loving family looking out for him from the start.

Pam W
SE of Seattle

If a child is to keep alive his inborn sense of wonder without any such gift from the fairies, he needs the companionship of at least one adult who can share it, rediscovering with him the joy, excitement, and mystery of the world we live in ~ Rachel Carson

Logan was diagnosed because of his PKU test. I think it will be eaiser to start off with him on a special diet than to have to have changed it later in life. Maybe not knowing how good some of the food are (beans are even on that list) will help.

Children on special diets often do better than the adults around them who feel a certain anguish about what the child is 'missing out' on. When my son was diagnosed with insulin dependent diabetes at age 7, I cried when I thought he'd never have pecan pie. But the third day after he was diagnosed, his third day of insulin injections, he told me "Insulin works, mommy. I feel better." Then I felt better, too. It's very rare that our children tell us when things are going right, because that's how life is supposed to be.

Wishing you all the best,

Pam W
SE of Seattle

Reflux - Pediatric GERD, Infant GER and EER
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