Re: New - 13 yr. old son with Down Syndrome/Autism, etc.

[Guest guest]

yes there is a PDR for herbal/natural meds, and it shows interactions etc

with Rx's and some OTC drugs too, what not to mix with or take with. We have

one at work, comes in handy often anymore, since soo many are starting to

take the natural route. shawna.

[Guest guest]

lol, oh yes we have lost an item or two out the car window too, neverhas

thrown in church though, did crawl under the pews all the way to the front,

very embarrasing!!! and everyone just looked down instead of stopping him and

sending him back. shawna.

[Guest guest]

both my boys use to always follow me around caressing my legs when i wore

panty hose, getting ready for church use to be a real parade,lol.shawna.

[Guest guest]

a,

Do you know what the name of the PDR for herbal remedies is? I would like to

see if I can get a copy. Thanks for the info!

Terry

[Guest guest]

Terry,

Thanks for sharing what life is like with . Yes, we are always

trying to stay one step ahead of problems, but often they catch us by

surprise. I don't try to look too far ahead with Brook. One problem I

didn't mention with Brook is that he has a water obsession. This means that

we have to keep all of the bathrooms locked at all times and we have to watch

him constantly to see whether he is busily spraying water, dumping out

liquids from the refridgerator or whatever he can find. Of course spitting

is good too!! He takes a long bath everyday, we have removed the handle to

turn the water on and off and we have had to install shower doors and have a

system of dowels to lock him in. Otherwise he adjusts the water and he

splashes like crazy and dumps all of the water out of the tub. Of course when

it's time to get him out of the tub he gets that lucky person soaking wet.

I'm thinking maybe I should put my robe on before hand. Recently, he managed

to get over the locked gate to the upstairs for the first time and was

happily flooding the upstairs bathroom.

Brook has had 3 kinds of seizures, myoclonic, petit mal and most

recently, last May generalized absence seizures. I'm very grateful that his

seizures are presently controlled by medication. We are switching meds

though, so I'm hoping the new one will work as well as the Depakote has.

Brook was on Cisapride too for awhile, but it didn't really help his problem

which was reflux, so that's why we did the Nissin. Brook only had the g-tube

for about 10 weeks. We took advantage of it and gave him a T & A at that time.

Lately he keeps getting ear infections. Basically he has chronic otitis

media, he has eartubes, so I am dealing with the runny ears all the time. He

is on lots of antibiotics. We saw the ped. ENT last week. He said that we

should use the ear drops every day to help prevent ear infections. Five days

later he had another ear infection. Well, he's always going to get them

when he gets a runny nose.

Good luck with getting the feet eval. It seems that a lot of

professionals don't give orthotics to kids with Ds readily. You may have to

insist. It is a quality of life issue and you want to prevent joint problems

in the future. I do know a woman with a son with Ds-ASD who went to a

Shriners here in Northern Ca and they didn't want to do anything for her son

despite the fact that he was walking on the side of his feet. Maybe you can

find a pediatric physical therapist that casts for orthotics. My insurance

pays for them and I really feel it is a great benefit to him.

Hope to hear from you soon.

Marisa

Mom to Miles 13yr, Brook 10yrs and Gennie 3yrs

[Guest guest]

Hi Marissa,

Boy, can we relate to the water issues! LOL Although is thankfully

not as creative as Brook as yet, he does make tidal waves in the tub and dump

water out of it with his hands. He also plays in the toilet every chance he

gets. UGH! He is so fond of water that we incorporated it into his

IEP....turning on the faucets (which I'm not too sure is a good idea) and

washing his hands, etc. and a water table. He is always trying to get into

the kitchen sink at home. For some reason, his classroom aide was letting

him play in the classroom sink. I told her that in the real world the sink

can be dangerous...glassware, knives, etc. and that I couldn't be sure that

there would never be something in the kitchen sink that could hurt him.

That hadn't occurred to her! Since doesn't eat by mouth, I don't

think it occurs to him that there is liquid in the refrigerator. Thank God!

He does dump out cups, glasses, soda cans, etc. if they are left within

his reach. had a T & A sometime around age 4, I think. I have to

say that I have never seen him more miserable....even with all of the

abdominal surgeries that he has had, none of them bothered him as much as

that did. The positive side of a g-tube is that I never have a problem

getting him to take meds! He has had two sets of PE tubes. He still

gets ear infections regularly. He is on a prophylactic antibiotic all the

time due to gi bacterial overgrowth. It doesn't seem to do much for his

ears. I have a hard time knowing when has an ear infection because

he doesn't pull at his ear or let us know that it hurts. He NEVER runs a

fever, ever! Pretty much, I have to assume that he has an ear infection

whenever he has a cruddy nose which is more often than not! I am not sure

what to do about his feet. My husband started a new job last month and we

are waiting to here what the new Insurance will be. has Medi-Cal

secondary to the primary ins. I think we will have a choice between Kaiser

and a Blue Shield PPO. We've done the Blue Shield thing twice before and it

really stinks! It used to be a good plan and cover mostly everything. Now

they cover NOTHING! The only thing that I didn't have to fight with them

about was medications. I told my husband that I was sure Blue Shield had a

party when they heard that he had left that job and was no longer covered!

LOL The only problem with Kaiser is the HMO stuff....gee this gets old!

Maybe I can get his PCP to get an eval for prosthetics for his shoes.

I'd love to hear more about Brook. Looking forward to hearing from you,

Terry