Donnell

[Guest guest]

We got the same gibbirish garbage run around as you did until Elie was

12yo. Then we didn't know for at least a year longer that the meaning of

that dx meant that his behavior was arily because of his lack of

communication AND MORE IMPORTANTLY in Elie's case anyway, because he has

such HUGE sensory needs. He got an enormous sensory diet fine tuned for his

individual needs, but he has resisted most common sensory strategies. The

ones he accepts: warm baths, very soft clothing and bare feet as much as

possible, rocking (full body flat on the floor), stim toys - especially

repetitive music and of course - TRS, used to accept hours of swining but no

more, floaating in water, I am sure there are others, but I am too frazzled

to think of others.

[Guest guest]

Donnell,

Can I ask a question since your son does not eat by mouth and is 12. I truly

believe that will be one that never eats by mouth as hard as that

is to admit. I am a pretty aggressive parent but right now just feel

overwhelmed. Does your son have bolus feeds? If not does he carry the

backpack to feed himself and what is he taking for his formula.

can not tolerate bolus feeds so she is on the pump for 12 hrs then off for 4

hours on for 4 hours and then off 4 hours. She is on Elecare at 30 calories

at a rate of only 70. She has a problem maintaining her blood sugars so she

can not have more than 4 hours off at a time or her bs will drop to as low

as 26. She also has chronic pseudo obstruction so whenever her brain thinks

she is sick then her gut shuts down and that is another week in the hospital

trying to convince her tummy that it is okay to have food. Her school is

trying to get her to use her backpack for her feeding pump but to be honest

she is too little and it just makes her fall backwards. I think I could

handle it better if she could at least have bolus but her motility is so

slow that is why she is only at a rate of 70. that we can not get enough

into her to survive, we have tried the bolus and it was awful. I am just

curious if it is her destiny not to eat by mouth what I might be looking at.

As for as San Diego services. I have regional and what they have done for me

is pay for classes on autism at childrens hospital, they were one on one but

to be honest it was no help at all. Because she has the dual dx as we all

know that there is not a book on how to with our children, so

wanted nothing to do with what they were doing and since her primary

language is sign (she now knows 45 signs :-).. she has no concept of them

but you ask her to sign something and she will) and they wanted to do PECS

it did not help me out any. She has had early start since birth which was a

teacher came to our house every week, plus OT and PT and speech. That was

for the first 3 years, then she went into the school district (I live in a

small town 486 kids from K-12 grade) So 4 months and a few attorneys later

she is transported to a special education preschool in Ramona, she will go

to K there next year also. Her teacher is WONDERFUL!!!! She has been

teaching SE for 17 years and I love her. I also get IHSS so I can stay home

with her and be paid for it. That has been the best thing I have to admit,

how many mothers get paid for staying home with their child. Our local Ds

here only seems to have time for me when it is time to raise money for them.

As sad at that is to say. I live 2 hours from anything (not joking) that I

have no form of support groups even though I know that San Diego does have

them. Hope that answers some of your questions:-)

_____

From: [mailto: ] On Behalf

Of Donnell Kenworthy

Sent: Tuesday, April 01, 2008 12:49 PM

To:

Subject: Re: Just need to vent and ask advice LONG I'm sorry -

for

,

I am in California, too, but in the Sacramento area. My son, DJ, is

12 and he has DS and autism. He, like your daughter, has many

medial issues. Once a doctor looked in his ears and said, " How

lucky you are that he hasn't had any problem with his hearing, " and

I felt like belting her one or laughing out loud maniacally! He is

lucky enough to have had the ongoing services of: cardio, pulmo,

gastro, neuro, ortho, ENT, opthamolo, dermo, nutrition, RT, ST, PT,

OT, as well as his primary pediatrician and his PNP that he sees

through his pulmonology team visits. I only list these here because

I feel you are already pretty familiar with a lot of these people.

DJ does not eat by mouth. He is G-tube fed. At first it was all

his medical needs that kept him from progressing: 2 open-heart

surgeries, a paralyzed diaphragm, severe laryngotracheobroncho-

malacia (means his windpipe was closing and not staying open)

requiring a trach and a vent for 11 months, several bouts of

pneumonia, and 2 diagnosed cases of RSV.

After years of feeding therapy, and after the last three years of

forging ahead without therapy or medical support in carrying out the

therapy myself, I hit the wall and told his GI that I could no

longer dedicate 3-4 hours a day spent on trying to get my son to eat

by mouth. I told her I was willing to go on with it IF they could

find a therapist willing to take him on, but no one is willing to

(that is they won't take what his insurance pays...and no one is

vendored with our Regional Center for a child that old.)

You are right to be angry with that allergist. I think you are

taking a reasonable course of action, talking with your daughter's

primary ped. to figure out your next step. Most doctors don't have

such an antiquated attitude about kids with DS, but many doctors do

not have an understanding of what DS and ASD means to the kids and

to the families. Some days I am up to being a teacher for them,

other days I am not. Hopefully you can find another allergist

willing to bring a different attitude to treating your child.

And, please, vent away. This is the place to do it. We understand

your frustration and anger. And sometimes we run into someone going

through similar struggles and we feel less alone. You described

what happened very well! You could just even print out your post to

us and ask your primary to read it before you talk. Your

frustration and the allergists innane attitude are very evident.

Let us know how things go. I would like to know what resources in

San Diego look like.

Hugs,

Donnell (mom to DJ, 12, DS/ASD)