Re: Hugs to Sherry

[Guest guest]

In a message dated 12/31/2004 1:30:01 PM Eastern Standard Time,

home@... writes:

> I know a lot of girls with regular DS, not DS ASD, also have a lot of

> difficulty managing their periods.

Hi Therese,

I have been on trips with the ARC group and have personally cleaned and

changed a few of the teen girls. They all have cognitive disabilities not just

DS.

They understand to a degree but cannot manage personal care independantly. I

have also accompanied an adult group and most of them could take care of

themselves or with little help. I think it will just take time developmentally.

I am

grateful that Zeb is a boy and I do not have to deal with this issue. I do

sympathize with anyone that has a girl. Boys have other issues so I suppose it

evens out. Hopefully Kathy will be fine during the party. Happy new year.

Charlyne

Mom to Zeb 12 DS/OCD/ASD?

[Guest guest]

Sherry,

(((((((((((Hugs to You))))))))))))). Just know that on the other side of

the country, we are going through this right now too and that I have a

washer full of messy clothes and a set of sheets soaking. Keep trying with

the new panties. didn't keep them on at first either. Also, gets

kind of OCD when she has her period. She won't tolerate much, and has to

change the panties anytime she notices any wetness. I just keep a big stock

of them. I've finally taught her to take the soiled panties to the laundry

tub to soak. Still no luck with pads. She won't wear anything at night no

matter what I do.

Today I'm having twelve people over for dinner and I've put my husband and

other daughters on OTR alert. I'm praying she doesn't strip down, like

she does sometimes when she's having her period. I've stashed cleaner and

paper towels all over the house in case she decides to make any mess.

I know a lot of girls with regular DS, not DS ASD, also have a lot of

difficulty managing their periods. When I called parent to parent asking

for help, every mom that called me back had her daughter on Depro Provera,

those shots that make them never have a period. is on BC pills but

she has to have a period every 3 months.

Take care,

Therese

Unfortunately our good luck with jamie only lasted for a few hours and

> she is back to removing the pants every time I leave her room. I am SOOOOO

> frustrated with this I don't know what to do.

[Guest guest]

Thanks for the encouragement Therese. Hope the party went well. Currently

we're letting run around with regular underwear and black or dark color

shorts over top and changing her panties frequently, rinsing, soaking, spraying,

washing etc. Fortunately she doesn't have a real heavy flow and she will keep a

pullup on at night.

I just hate to risk a reaction to BC pills, and I would never try the

depoprovera shot with her- at least a pill I could stop at will; but the shot

would be a big risk. She has reactions to everything! it just makes me so mad

that she was fine with all of this, wearing pads etc for FOUR years, then one

supposedly unimportant ear surgery and this happens. I'd like to massacre the

doctor who keeps downplaying the whole thing- maybe leave her at his office once

a month.

And I feel guilty too cause I yelled at her a couple of times saying " this

is DISGUSTING!! " Shoot it's not her fault- poor little kiddo. Like she really

understands what disgusting means. I'm just gonna keep washing....already

ordered her 3 6 packs of new regular undies to keep for the clean days and will

use these old ones for her period I guess. They shouldn't have to deal with this

on top of everything else. Then again I never thought i should have had to

either lol.

Sherry

[Guest guest]

<<Hi Sherry, if you don't mind my asking, what happened with and ear

surgery??>>

Hi Sandy, We discovered had a large residual hole in her left ear from a

previous tube surgery. We didn't have a clue. The doctor who did the tubes told

us everything was totally healed and that we could go without earplugs. This was

5 or 6 years ago. But we kept using plugs anyway for baths and swimming because

we're paranoid:-) This new ENT discovered a hole under the microscope and he

told us we should have a surgery to repair it. It was a simple several minute

procedure where he patched the hole with a synthetic self dissolving patch.

Right afterward she got really sick (a few days later)- had a period and

vomiting and bronchitis and diahrrea all at once. And since then she's had

trouble with wearing her pad for her period. I guess she was traumatized. She

seemed fine right after the surgery however it didn't work and the rest of the

patch had to be pulled out. it's all red and gross in there but doesn't seem to

bother her anymore. he had told us in 5% of cases this type surgery will not

work.

<<I'm very curious because when Karlie was 21/2 she had surgery for ear tubes

and had her tonsils and adenoids removed.After the surgery she completely

regressed.She lost many skills,became withdrawn,developed odd behaviors and then

by age 3 was diagnosed with Autism.I always felt that her ears were literally

driving her crazy. She would hold her ears and say aaahhhhhhh constantly. The

doctors of course, said that the surgery had nothing to do with her new

behaviors or regression.One child psyciatrist that I took her to for a second

opinion on the autism said he felt she was suffering from post traumatic stress,

due to the surgery.>>

Well, was pretty much on her way to autism before she got tubes the first

time but she had horrible regressions and behaviors after her second open heart

surgery at age 7. I still think it's possible some of the autism may have been

caused by the heart lung machine and oxygen deprivation during her first heart

surgery. I know for a fact she had post traumatic stress after the second heart

surgery. I don't recall any serious problems after the simple tube placement

operations (3) and in 's case they really helped her. Perhaps the tonsils

and adenoids as well was just too much for Karlie. I don't know. But I do not

regret ever getting her the tubes as she was having such problems with her ears

and they were really holding her back.

<<Any way now it's 2 years later and they want to put another set of tubes in

her ears and I am so afraid of what might happen!! Sandy>>

Well, I want to say go ahead and get the tubes and don't worry- but after this

" simple " procedure and the results (she had horrible behaviors for 2 months) I

don't know what to say. I guess you'd have to weigh just how big a problem the

ears are for her. Not much help I know.

Sherry