Could my children have this???-long

December 22, 1999

Hi Again,

I am looking for info and maybe some reassurance.

My three children all have various problems, which I considered mild or

at least early childhood stuff that they will outgrow. Now, the more I

learn about ACM, the more terrified I am for them. It is one thing

facing it yourself, it is a whole lot different when your children may

be personally affected (as I am sure many of you can attest to).

My twin boys have swallowing issues and have been hospitalized with

aspiration pneumonia more than once before they were diagnosed with

floppy epiglottis' and reactive airway disease ...they are identical and

their symptoms are identical. We are treating them by using asthma meds

(nebulizers to keep lungs open) and giving only thickened liquids in an

upright position only. This is working, however they have to begin

speech therapy soon to help with oral motor skills (they are 14 mos old

on the 30th). Otherwise, they are developing fine and are healthy and

happy.

My 3yr old had chronic upper respiratory infections, ear tubes, etc. He

seems to have allergies, but has tested negative for everything so far.

He is now wearing glasses because I noticed one eye that seemed to be

slightly off center. This was while we were home together when he was

on home IV therapy for a drug resistant staff infection in his ear

(something he probably picked up in the hospital while visiting his

brothers). The pediatric opthamalogist said his eye is not off center,

but he has astigmatism in both eyes.

He has occasional headaches and nose bleeds. He has no speech problems

or other developmental problems.

Should I be really concerned that this could be a part of my kids'

problems?

I will bring it up to the neurosurgeon, if he is responsive at all to

the chiari.

If this could possibly involve my children's health, then this journey

is going to take a whole lot more courage than I thought.

Many thanks for all of your support and help.

Take care all!

Happy Holidays!

Melinda

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