Re: Update on Trisha a little long...sorry

[Guest guest]

Carol: Good to hear things are getting on track for Trisha. I can't even

think about hormones and Tori yet. I have 2 older daughters, and I know how bad

typical girls are..... YIKES!!! And in my family we start young...9 yrs.

(uh..that's only a little over 2 years away for Tori) and the Docs say THAT is

NOT delayed...well how thoughtful!! =)

Liz

Update on Trisha a little long...sorry

School wise Trisha is doing pretty well. We had a meeting to talk about

hiring a signing instructor to work with her and to start PT back up. I

recently requested and was approved for books and software (through her MR

waiver)

to help Trisha with reading, daily living skills, social stories, math, health

and a host of other things from Mayer- and have shared that with her

school as well. She is enjoying the interactive books and asks to read them

every night before bed which is a great improvement alone, she didn't use to

want to be read to. When we read the books I have her read the words she can

and then I help with all the others and she is getting much better at trying

to say each word as we read them. Sometimes you can't always understand and

sometimes she says a few very clearly. I also got the set MEville to

WEville but haven't started that with her yet but love what I have read so

far. I

will probably take some time over the weekend to set up a lesson plan for us

to use at home. I sent the one about school into school for them to use and

we are going to work on the one about " Me " at home.

Health wise her thyroid has begun to act up again so she is back on medicine

for it. She is also on a maintenance antibiotic program for the

Hidradenitis Suppurativa (HS) which has flared up even worse not to mention a

ton of

creams and washes. She will also start taking birth control to stop her

periods

and to help with the HS as well, it seems the hormones in BC help some women

with HS so we will see. This is in addition to the other meds she is

already taking. We walked out of the pharmacy feeling like we were getting

ready

to start our own. Of course we have to monitor any change in her physical as

well as behavioral well being to make sure she isn't having any side effects

from the meds.

She is still whining a lot but I am hoping that once we get her thyroid in

balance, and the HS in remission and the hormones is some kind of order that

maybe the whining will take care of itself.

As for the " poop " issue we have been going through that again here lately as

well and I'm beginning to think it has something to do with the thyroid

being out of wack.

Oh and her new thing now is when we go anywhere she wants to bag up all her

stuff animals and books into individual bags and take them with her. She

just started this new obsession this past week. The entire back seat except

for

where she was sitting was filled and the overflow was put in the trunk.

This morning she started bagging stuff to take to school and I had to put a

stop

to the amount that she could actually carry and she wasn't too happy with

that but finally complied.

On a cute note: we finally found a skirt that was not too long and fit her

in the waist and I wish you could have seen Ms. Trisha preening around in her

new outfit. Yep the teen gene has reared it's ugly head. lol We have such

a hard time finding clothes to fit her. If we get to fit around her waist

and top it is usually way to long length wise and arm wise. This skirt is

peasant style but yet not too long on her and looks really cute. She wore it

to

school today and it's the first time she has been able to wear a skirt/dress

since she was about 6-7. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

Carol

Could you email me privately regarding some of Trisha's Mayer software

etc. My daughter Kate is 14 in a special ed class and not doing well in reading,

writing etc(or math) Her teacher has no background in student's with autism and

just doesn't " get it " . She thinks is " unmotivated " It is very frustrating

for me and even more so for Kate. Kate has been reading at a 2nd grade level for

about 3 years(she would be considered an eight grader in regular subjects if she

were mainstreamed) I think she can improve her reading and writing level but is

not getting the proper instruction/support. They are not really providing the

visuals she needs. I think some of the things you are doing with Trisha would

help her.

Thanks,

Brigid

Update on Trisha a little long...sorry

School wise Trisha is doing pretty well. We had a meeting to talk about

hiring a signing instructor to work with her and to start PT back up. I

recently requested and was approved for books and software (through her MR

waiver)

to help Trisha with reading, daily living skills, social stories, math, health

and a host of other things from Mayer- and have shared that with her

school as well. She is enjoying the interactive books and asks to read them

every night before bed which is a great improvement alone, she didn't use to

want to be read to. When we read the books I have her read the words she can

and then I help with all the others and she is getting much better at trying

to say each word as we read them. Sometimes you can't always understand and

sometimes she says a few very clearly. I also got the set MEville to

WEville but haven't started that with her yet but love what I have read so

far. I

will probably take some time over the weekend to set up a lesson plan for us

to use at home. I sent the one about school into school for them to use and

we are going to work on the one about " Me " at home.

Health wise her thyroid has begun to act up again so she is back on medicine

for it. She is also on a maintenance antibiotic program for the

Hidradenitis Suppurativa (HS) which has flared up even worse not to mention a

ton of

creams and washes. She will also start taking birth control to stop her

periods

and to help with the HS as well, it seems the hormones in BC help some women

with HS so we will see. This is in addition to the other meds she is

already taking. We walked out of the pharmacy feeling like we were getting

ready

to start our own. Of course we have to monitor any change in her physical as

well as behavioral well being to make sure she isn't having any side effects

from the meds.

She is still whining a lot but I am hoping that once we get her thyroid in

balance, and the HS in remission and the hormones is some kind of order that

maybe the whining will take care of itself.

As for the " poop " issue we have been going through that again here lately as

well and I'm beginning to think it has something to do with the thyroid

being out of wack.

Oh and her new thing now is when we go anywhere she wants to bag up all her

stuff animals and books into individual bags and take them with her. She

just started this new obsession this past week. The entire back seat except

for

where she was sitting was filled and the overflow was put in the trunk.

This morning she started bagging stuff to take to school and I had to put a

stop

to the amount that she could actually carry and she wasn't too happy with

that but finally complied.

On a cute note: we finally found a skirt that was not too long and fit her

in the waist and I wish you could have seen Ms. Trisha preening around in her

new outfit. Yep the teen gene has reared it's ugly head. lol We have such

a hard time finding clothes to fit her. If we get to fit around her waist

and top it is usually way to long length wise and arm wise. This skirt is

peasant style but yet not too long on her and looks really cute. She wore it

to

school today and it's the first time she has been able to wear a skirt/dress

since she was about 6-7. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

In a message dated 10/13/2006 6:40:09 P.M. Eastern Standard Time,

jams1995@... writes:

If you don't mind me asking, what exactly is HS?

_eMedicine - Hidradenitis Suppurativa : Article by Fite, MD, FACEP_

(http://www.emedicine.com/emerg/topic259.htm)

What Trisha has on her scalp is different from the Hidradenitis Suppurativa

(HS). The stuff on he scalp is like you describe except that it turns an

ugly red and sometimes oozes which I think is because of scratching. What we

have been using on the scalp is a few drops of tea tree oil in her shampoo.

The doctor gave us some samples of some over the counter shampoos to try to see

if they are any better. The prescription ones were to harsh. I just used

one sample tonight so will see how it does. The tea tree oil helped but so

far nothing has actually cleared it up just made it a little better. We go

between the medicated shampoos either drying it out too much and causing other

problems or not enough not helping the problem. Nothing is ever easy. :-) I

also have used lavender oil in her shampoo when I was out of tea tree oil

and it also seemed to help a little bit.

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

Carol,

I'm planning a update too as I am currently doing supplements and meds

EIGHT times a day now. YUK. How long has Trisha been on the thyroid med

increase? I ask only because that imbalance will cause the others to be

unbalanced also as I'm sure you know. Hopefully the thyroid will balance out and

the fallout will be better balanced hormones all around.

Are you going to try some sort of yeast prevention or treatment to go along with

the antibiotic and BC pills? They can really cause the big itch if you get my

drift lol.

I hope she starts to feel better soon so she can flounce all around town in her

new skirt carrying her big " purse " full of stuffed animals. I think it's

adorable.

Sherry

[Guest guest]

Carol,

If you don't mind me asking, what exactly is HS? The doctor told me what

name of her condition is, and that there is no cure, but for the life of me

I can not remember what it is. Jordan has this " stuff " on her head that

resembles cradle cap, only about 20 times worse. The doctor put her on some

type of topical steroid, but with her heart condition, I refuse to put it on

her, instead, I drench her scalp in lotion and let it sit for about an hour

and then scrub her head to death. I've also put Melaleuca oil on her head,

which is very strong, but has seemed to help.

Judi

[Guest guest]

Yeah, what's on Jordan's head, if it gets real bad, it causes her hair to

fall out in the bad places. Yet another issue to deal with... sometimes I

think to myself... will my child EVER get any relief from all the problems

she has? Her having Downs doesn't bother me, as I think of it as a

Personality Enhancement, but it's all the medical issues that she's been

stuck with that gets me. She didn't ask to be born with a host of

problems... none of our kids did. Just sometimes it seems so unfair that as

soon as we get one issue solved, another one pops up in it's place.

Sorry for the rant, there.

Judi

Re: Update on Trisha a little long...sorry

>

> In a message dated 10/13/2006 6:40:09 P.M. Eastern Standard Time,

> jams1995@... writes:

>

> If you don't mind me asking, what exactly is HS?

>

>

> _eMedicine - Hidradenitis Suppurativa : Article by Fite, MD, FACEP_

> (http://www.emedicine.com/emerg/topic259.htm)

>

> What Trisha has on her scalp is different from the Hidradenitis

Suppurativa

> (HS). The stuff on he scalp is like you describe except that it turns an

> ugly red and sometimes oozes which I think is because of scratching.

What we

> have been using on the scalp is a few drops of tea tree oil in her

shampoo.

> The doctor gave us some samples of some over the counter shampoos to try

to see

> if they are any better. The prescription ones were to harsh. I just

used

> one sample tonight so will see how it does. The tea tree oil helped but

so

> far nothing has actually cleared it up just made it a little better. We

go

> between the medicated shampoos either drying it out too much and causing

other

> problems or not enough not helping the problem. Nothing is ever easy.

:-) I

> also have used lavender oil in her shampoo when I was out of tea tree oil

> and it also seemed to help a little bit.

>

> Carol

> Trishasmom

> She isn't Typical, She's Trisha!

>

>

>

>

[Guest guest]

Hi Carol,

I enjoyed reading the update on Trisha. She has made tremendous progress. it

seems that going to this school has been the best possible for her. I think Zeb

has that (HS) too. He constantly has those boils, some worst than others. I have

also used all types of creams and am constantly having him sit in a hot tub. He

has so many scars. Zeb is a bag man too. It's part of the OCD. If I let him

start bagging( to leave the house) or lining( staying home) his beanies, there

is no end. If I can catch as soon as it starts I have a beetter chance of

redirecting him.

I had weekly collaborative meetings at the elementary level. The school sends

me weekly lesson plans from each teacher in the middle school and we have a

monthly collaborative meetings. My car also broke down today after just having

new tires put on yesterday.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

Csvillars@... wrote:

School wise Trisha is doing pretty well. We had a meeting to talk

about

hiring a signing instructor to work with her and to start PT back up. I

recently requested and was approved for books and software (through her MR

waiver)

to help Trisha with reading, daily living skills, social stories, math, health

and a host of other things from Mayer- and have shared that with her

school as well. She is enjoying the interactive books and asks to read them

every night before bed which is a great improvement alone, she didn't use to

want to be read to. When we read the books I have her read the words she can

and then I help with all the others and she is getting much better at trying

to say each word as we read them. Sometimes you can't always understand and

sometimes she says a few very clearly. I also got the set MEville to

WEville but haven't started that with her yet but love what I have read so far.

I

will probably take some time over the weekend to set up a lesson plan for us

to use at home. I sent the one about school into school for them to use and

we are going to work on the one about " Me " at home.

Health wise her thyroid has begun to act up again so she is back on medicine

for it. She is also on a maintenance antibiotic program for the

Hidradenitis Suppurativa (HS) which has flared up even worse not to mention a

ton of

creams and washes. She will also start taking birth control to stop her periods

and to help with the HS as well, it seems the hormones in BC help some women

with HS so we will see. This is in addition to the other meds she is

already taking. We walked out of the pharmacy feeling like we were getting ready

to start our own. Of course we have to monitor any change in her physical as

well as behavioral well being to make sure she isn't having any side effects

from the meds.

She is still whining a lot but I am hoping that once we get her thyroid in

balance, and the HS in remission and the hormones is some kind of order that

maybe the whining will take care of itself.

As for the " poop " issue we have been going through that again here lately as

well and I'm beginning to think it has something to do with the thyroid

being out of wack.

Oh and her new thing now is when we go anywhere she wants to bag up all her

stuff animals and books into individual bags and take them with her. She

just started this new obsession this past week. The entire back seat except for

where she was sitting was filled and the overflow was put in the trunk.

This morning she started bagging stuff to take to school and I had to put a stop

to the amount that she could actually carry and she wasn't too happy with

that but finally complied.

On a cute note: we finally found a skirt that was not too long and fit her

in the waist and I wish you could have seen Ms. Trisha preening around in her

new outfit. Yep the teen gene has reared it's ugly head. lol We have such

a hard time finding clothes to fit her. If we get to fit around her waist

and top it is usually way to long length wise and arm wise. This skirt is

peasant style but yet not too long on her and looks really cute. She wore it to

school today and it's the first time she has been able to wear a skirt/dress

since she was about 6-7. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

In a message dated 10/14/2006 12:12:08 A.M. Eastern Standard Time,

charlyne1121@... writes:

Zeb has that (HS) too. He constantly has those boils, some worst than

others. I have also used all types of creams and am constantly having him sit

in a

hot tub. He has so many scars.

have you tried tea tree oil? You can apply it directly to the lesion or put

a few drops in his bath. I was told on the HS list that I am on that these

are very painful at times and they said what's funny is that the ones that

look the worse are not always the ones the hurt the most, sometimes they do and

sometimes it's the little ones that hurt more. The epsom salts soaks seem

to help and I also have used antibiotic band-aids on the ones in her groin

area to stop the friction from her clothes. The doctor said to have her wear

loose fitting clothes as much as possible and to keep her as dry as possible.

At home it isn't a problem as she runs around in over sized T-shirts but at

school she wears long pants or shorts. The skirt is perfect as it covers her

but allows air to flow. Now if I could just find a few more that would be

great or even better if I could sew where you wouldn't be ashamed to wear what

I made. lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

Hi.

I'd love to pick your brain a bit (or a bunch). I have a soon to be

teen daughter as well. just turned 11. She's never been dx

with autism, but I've suspected it. She also has a thyroid

problem. It was over active so it's been killed and now she's on a

daily supplement. She also has chronic constipation and I'm always

asking her if she needs to poop. Of course she says no, it's stuck.

and Doesn't want to try to push. I'm dissapointed in her

schooling. She spends very little time in the 4th grade classroom

and even her pull-out is either alone or with a group that isn't

appropriate for her. She still can't read and I think the school

needs to change their approach. She can count and do simple

addition and subtraction using manipulatives. Her receptive

language seems good sometimes, and other times she has no idea what

I'm asking. She may answer yes or no to any question. Even if it's

very simple about her day. I guess I'm not asking any question

here. Just wanting some support and advice from anyone who would

like to offer it.

Thanks,

>

> School wise Trisha is doing pretty well. We had a meeting to

talk about

> hiring a signing instructor to work with her and to start PT back

up. I

> recently requested and was approved for books and software

(through her MR waiver)

> to help Trisha with reading, daily living skills, social stories,

math, health

> and a host of other things from Mayer- and have shared

that with her

> school as well. She is enjoying the interactive books and asks

to read them

> every night before bed which is a great improvement alone, she

didn't use to

> want to be read to. When we read the books I have her read the

words she can

> and then I help with all the others and she is getting much

better at trying

> to say each word as we read them. Sometimes you can't always

understand and

> sometimes she says a few very clearly. I also got the set

MEville to

> WEville but haven't started that with her yet but love what I

have read so far. I

> will probably take some time over the weekend to set up a lesson

plan for us

> to use at home. I sent the one about school into school for them

to use and

> we are going to work on the one about " Me " at home.

> Health wise her thyroid has begun to act up again so she is back

on medicine

> for it. She is also on a maintenance antibiotic program for the

> Hidradenitis Suppurativa (HS) which has flared up even worse not

to mention a ton of

> creams and washes. She will also start taking birth control to

stop her periods

> and to help with the HS as well, it seems the hormones in BC help

some women

> with HS so we will see. This is in addition to the other meds

she is

> already taking. We walked out of the pharmacy feeling like we

were getting ready

> to start our own. Of course we have to monitor any change in her

physical as

> well as behavioral well being to make sure she isn't having any

side effects

> from the meds.

>

> She is still whining a lot but I am hoping that once we get her

thyroid in

> balance, and the HS in remission and the hormones is some kind of

order that

> maybe the whining will take care of itself.

> As for the " poop " issue we have been going through that again

here lately as

> well and I'm beginning to think it has something to do with the

thyroid

> being out of wack.

> Oh and her new thing now is when we go anywhere she wants to bag

up all her

> stuff animals and books into individual bags and take them with

her. She

> just started this new obsession this past week. The entire back

seat except for

> where she was sitting was filled and the overflow was put in the

trunk.

> This morning she started bagging stuff to take to school and I

had to put a stop

> to the amount that she could actually carry and she wasn't too

happy with

> that but finally complied.

>

> On a cute note: we finally found a skirt that was not too long

and fit her

> in the waist and I wish you could have seen Ms. Trisha preening

around in her

> new outfit. Yep the teen gene has reared it's ugly head. lol

We have such

> a hard time finding clothes to fit her. If we get to fit around

her waist

> and top it is usually way to long length wise and arm wise. This

skirt is

> peasant style but yet not too long on her and looks really cute.

She wore it to

> school today and it's the first time she has been able to wear a

skirt/dress

> since she was about 6-7. :-)

>

> Carol

> Trishasmom

> She isn't Typical, She's Trisha!

>

>

>

>