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

October 13, 2006

In a message dated 10/13/2006 3:22:11 P.M. Eastern Standard Time,

gldcst@... writes:

How long has Trisha been on the thyroid med increase?

actually she is just started taking them again today. When she had lead

poisoning about 7 years ago it caused her thyroid to go out of whack and she

was

on meds. Then she was taken off thyroid medicine about 4 years ago because

it was functioning properly again once the lead was corrected. Now it's

malfunctioning again so I think she will be on it all the time now. Yes the

doctor gave me a cream to use in case we had problems with yeast. Is on

BC? Have you seen if it makes a difference in her moods? Don't you just love

puberty? lol

Now if they just made a pill for whining we'd be set! lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

October 13, 2006

In a message dated 10/13/2006 4:56:28 P.M. Eastern Standard Time,

gldcst@... writes:

It's been offered many many times and I have a closetful of filled

prescriptions but I always chickened out at the last minute cause she's so dang

sensitive to everything

I totally understand the chickening out part. We don't start the BC until

her next period and I am already thinking should I give them to her or not.

She will take them every day and not take the placebo pills so that she won't

have a period at all maybe the occasional break through bleeding. If she was

able to tell me how she felt I might not be as nervous to give her all these

med's.

Carol

Trishasmom

She isn't Typical, She's Trisha!

October 13, 2006

<<actually she is just started taking them again today.>>

Oh well this is good cause you may see alot of improvement with this alone.

was on and off thyroid meds too....she didn't need them anymore after her

second heart surgery, but gradually she went hypo again. I think it's pretty

much par for the course by puberty. Plus it runs in our family.

<<When she had lead

poisoning about 7 years ago it caused her thyroid to go out of whack and she

was

on meds. >>

I don't remember this (must have been on a list sabbatical); how did she get

lead poisoning?

Surely she didn't eat something she wasn't supposed to Ha ha.

<< Yes the

doctor gave me a cream to use in case we had problems with yeast.>>

Oh good the docs are catching on ! We have something to use for after

every period.

<<Is on BC? Have you seen if it makes a difference in her moods?>>

It's been offered many many times and I have a closetful of filled prescriptions

but I always chickened out at the last minute cause she's so dang sensitive to

everything. They wanted to do the lupron thing too and stop her periods or the 4

times a year BC pill but I hate playing around with her already whacked out

system

<<Don't you just love puberty? lol>>

in a word <<<<<NO>>>>>> :-)

Sherry

October 13, 2006

In a message dated 10/13/2006 7:44:37 P.M. Eastern Standard Time,

jams1995@... writes:

Okay... I just have to ask... isn't there a hospital in Virginia that we can

take our girls (up to age 16) and they will tie their tubes, perform a

hysterectomy or do something to prevent any pregnancies and such? I know

some states won't allow this, but I thought VA was one of those states that

did?

I don't know of a hospital but yes we do have the option of a hysterectomy

etc. For us the BC is not for preventing pregnancies so much as it is for

other health reasons.

Carol

Trishasmom

She isn't Typical, She's Trisha!

October 13, 2006

In a message dated 10/13/2006 8:32:17 P.M. Eastern Standard Time,

gldcst@... writes:

I'll leave the politics and social implications to others to discuss (and

listen to the ones who actually have to deal with these problems...not just the

politicians) but for me personally, I just cannot even consider it. (but

will not condemn those who do)

Sherry,

I fully understand where you are coming from. I personally don't want to

put Trisha through any surgeries that aren't absolutely necessary. I also

don't like giving some meds to her because of her not being able to tell me how

they make her feel. Sometimes we have to bite the bullet and try but it sure

doesn't make me feel good about it. She has only had 3 surgeries so far and

I was a nervous wreck with them all. I just try to avoid as much invasive

treatment as possible but at the same time I realize there are times when I

have to make a decision not based on what I want but what she needs the most.

Right now we have other choices available so hopefully they will work. She

still has to see Dr. Sharps about her knees and hips which is another possible

surgery topic but for now no surgeries at present. :-) I just don't like

surgery not only for my children but for myself as well! I get all panicky.

lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

October 13, 2006

Carol: They just had to put my 12 yo niece on BC because her first period sent

her to the hospital with hemorrhaging. She is taking Seasonale...and will only

get her period 4 times a year.

FWIW

Liz

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

In a message dated 10/13/2006 4:56:28 P.M. Eastern Standard Time,

gldcst@... writes:

It's been offered many many times and I have a closetful of filled

prescriptions but I always chickened out at the last minute cause she's so

dang

sensitive to everything

I totally understand the chickening out part. We don't start the BC until

her next period and I am already thinking should I give them to her or not.

She will take them every day and not take the placebo pills so that she won't

have a period at all maybe the occasional break through bleeding. If she was

able to tell me how she felt I might not be as nervous to give her all these

med's.

Carol

Trishasmom

She isn't Typical, She's Trisha!

October 13, 2006

<<I totally understand the chickening out part. We don't start the BC until

her next period and I am already thinking should I give them to her or not.

She will take them every day and not take the placebo pills so that she won't

have a period at all maybe the occasional break through bleeding. If she was

able to tell me how she felt I might not be as nervous to give her all these

med's. >>

I think this is actually good as you will get to see what kind of progress she

makes with just the thyroid and antibiotic first. 's periods used to be so

bad she would vomit and get horrible sick....then I'd go to the doc and get an

RX for BC pills. We were supposed to wait until the Sunday after her next period

or whatever and everytime we'd get close to her next period my " forgetter " would

turn on and I'd say " Aw maybe this time it won't be so bad; let me wait till

till next month. And actually it does vary and it has gotten better over the

years. But I know alot of moms who have dtrs doing very well on the

pill....shoot, you can always stop it; not like those longterm shots they give.

I agree with the verbal part; if jamie could say these pills give me a headache,

or they make me feel alot better it would be awfully helpful.

Sherry

(who keeps telling jamie " don't worry honey, it's only another 35 years or so " .

)

October 13, 2006

Okay... I just have to ask... isn't there a hospital in Virginia that we can

take our girls (up to age 16) and they will tie their tubes, perform a

hysterectomy or do something to prevent any pregnancies and such? I know

some states won't allow this, but I thought VA was one of those states that

did?

Judi

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

>

> <<I totally understand the chickening out part. We don't start the BC

until

> her next period and I am already thinking should I give them to her or

not.

> She will take them every day and not take the placebo pills so that she

won't

> have a period at all maybe the occasional break through bleeding. If she

was

> able to tell me how she felt I might not be as nervous to give her all

these

> med's. >>

>

> I think this is actually good as you will get to see what kind of progress

she makes with just the thyroid and antibiotic first. 's periods used

to be so bad she would vomit and get horrible sick....then I'd go to the doc

and get an RX for BC pills. We were supposed to wait until the Sunday after

her next period or whatever and everytime we'd get close to her next period

my " forgetter " would turn on and I'd say " Aw maybe this time it won't be so

bad; let me wait till till next month. And actually it does vary and it has

gotten better over the years. But I know alot of moms who have dtrs doing

very well on the pill....shoot, you can always stop it; not like those

longterm shots they give.

>

> I agree with the verbal part; if jamie could say these pills give me a

headache, or they make me feel alot better it would be awfully helpful.

> Sherry

> (who keeps telling jamie " don't worry honey, it's only another 35 years or

so " . )

>

October 13, 2006

<<Okay... I just have to ask... isn't there a hospital in Virginia that we can

take our girls (up to age 16) and they will tie their tubes, perform a

hysterectomy or do something to prevent any pregnancies and such? I know

some states won't allow this, but I thought VA was one of those states that

did?>>

I know how controversial this is but I do have a friend whose dtr has a totally

different syndrome diagnosis and she was able to get her doctor to write some

sort of letter which the courts accepted to perform a hysterectomy on her

daughter. I'm not sure what state this was in and I do know of other moms who

discuss this offlist. My particular problem with this is totally selfish in that

having had to go thru so many life threatening surgeries with I just could

absolutely not have an " elective " surgery performed on her for any reason. I'll

leave the politics and social implications to others to discuss (and listen to

the ones who actually have to deal with these problems...not just the

politicians) but for me personally, I just cannot even consider it. (but will

not condemn those who do)

Sherry

October 13, 2006

Thanks :-) Jordan is just now 11, but family history shows that all the

women on my mother's side (myself and sister included) started their cycle

at age 13. I'm not sure how to deal with this issue. I've let her come

into the bathroom with me before and have tried to explain the whole

menstruating thing to her, but she just doesn't get it. Any suggestions?

Judi

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

>

> In a message dated 10/13/2006 7:44:37 P.M. Eastern Standard Time,

> jams1995@... writes:

>

> Okay... I just have to ask... isn't there a hospital in Virginia that we

can

> take our girls (up to age 16) and they will tie their tubes, perform a

> hysterectomy or do something to prevent any pregnancies and such? I know

> some states won't allow this, but I thought VA was one of those states

that

> did?

>

> I don't know of a hospital but yes we do have the option of a

hysterectomy

> etc. For us the BC is not for preventing pregnancies so much as it is

for

> other health reasons.

>

> Carol

> Trishasmom

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

>

October 13, 2006

Hi Ladies,

I am so very happy to have a boy but for future reference, Planned Parenthood

has trained instructors that conduct programs for teens and adults with

disabilites on sexuality and puberty, 1-1 or in a group.

Charlyne

Mom to Zeb 13 DS/OCD/ASD

Mom of 2 beauties wrote:

Thanks :-) Jordan is just now 11, but family history shows that all

the

women on my mother's side (myself and sister included) started their cycle

at age 13. I'm not sure how to deal with this issue. I've let her come

into the bathroom with me before and have tried to explain the whole

menstruating thing to her, but she just doesn't get it. Any suggestions?

Judi

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

>

> In a message dated 10/13/2006 7:44:37 P.M. Eastern Standard Time,

> jams1995@... writes:

>

> Okay... I just have to ask... isn't there a hospital in Virginia that we

can

> take our girls (up to age 16) and they will tie their tubes, perform a

> hysterectomy or do something to prevent any pregnancies and such? I know

> some states won't allow this, but I thought VA was one of those states

that

> did?

>

> I don't know of a hospital but yes we do have the option of a

hysterectomy

> etc. For us the BC is not for preventing pregnancies so much as it is

for

> other health reasons.

>

> Carol

> Trishasmom

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

>

October 14, 2006

I had heard it being discussed a long time ago on another list I belonged to

and since the discussion was focused around " that time of the month " I

thought I'd ask. Not that I would consider doing that to Jordan, because

you're right... having had 4 surgeries already, enough is enough with the

hospitalizations and all. I hope when Jordan starts her cycles, that I'll

have enough understanding and support to help me, help her through that. I

know for me, when I first started mine, it was VERY painful and eventually

the doctors discovered quite a few cysts on my ovaries - harmless but

painful enough that I was in bed the first two days of my cycle. I'd hate

to have to see Jordan put through that kind of pain and anything that can be

done to ease that pain without having surgery, would be wonderful.

Unfortunately, I'll be passing down the migraine headaches that all of the

women on my mother's side have been plagued with. She seems to have a very

high tolerance for pain so maybe that's a Godsend for her.

Judi

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

> <<Okay... I just have to ask... isn't there a hospital in Virginia that we

can

> take our girls (up to age 16) and they will tie their tubes, perform a

> hysterectomy or do something to prevent any pregnancies and such? I know

> some states won't allow this, but I thought VA was one of those states

that

> did?>>

>

> I know how controversial this is but I do have a friend whose dtr has a

totally different syndrome diagnosis and she was able to get her doctor to

write some sort of letter which the courts accepted to perform a

hysterectomy on her daughter. I'm not sure what state this was in and I do

know of other moms who discuss this offlist. My particular problem with this

is totally selfish in that having had to go thru so many life threatening

surgeries with I just could absolutely not have an " elective " surgery

performed on her for any reason. I'll leave the politics and social

implications to others to discuss (and listen to the ones who actually have

to deal with these problems...not just the politicians) but for me

personally, I just cannot even consider it. (but will not condemn those who

do)

> Sherry

>

October 14, 2006

You know, back when I had Jordan, there wasn't one single person from La

Leche League that could properly show me how to nurse her. Nowadays,

everyone can successfully nurse their child with DS. I know... this has

nothing to do with the subject... it's just amazing to me how far we've come

in the last 10 or so years with programs and improvements for our kids. I'm

glad to see that Planned Parenthood offers something for our kids so that

they can get a little more understanding of what's happening to their bodies

and how best to deal with it.

Judi

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

>

> >

> > In a message dated 10/13/2006 7:44:37 P.M. Eastern Standard Time,

> > jams1995@... writes:

> >

> > Okay... I just have to ask... isn't there a hospital in Virginia that we

> can

> > take our girls (up to age 16) and they will tie their tubes, perform a

> > hysterectomy or do something to prevent any pregnancies and such? I know

> > some states won't allow this, but I thought VA was one of those states

> that

> > did?

> >

> > I don't know of a hospital but yes we do have the option of a

> hysterectomy

> > etc. For us the BC is not for preventing pregnancies so much as it is

> for

> > other health reasons.

> >

> > Carol

> > Trishasmom

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

> >

October 19, 2006

,

sounds a lot like Trisha. The best thing school wise for Trisha was

getting her into the Autism school. They use ABA as well as several other

methods of teaching and are very good about adapting to Trisha's needs. I

remember when we were trying to teach Trisha to say yes/no that I really

screwed

up because I would say do you want a hotdog? yes, no? So her answers were

always yes, no for everything. Well thankfully the school has rectified that

problem this year. Now when you ask her a yes/no question that she understands

she can answer either yes or no. I don't know about over active thyroid but

I do know that hypothyroid causes constipation as well as clonidine (if she

is on that). Dr. recommend colace to help with constipation. Trisha is

still struggling to count but is slowly improving, her receptive language is

much

more advanced than her expressive. Trisha can read sight words but is just

now beginning to " help " me read her small books. I read the words she

doesn't know and have her read the ones she does, we are constantly adding new

words doing it that way because as I read the words I sign, say and point to

them

and then have Trisha do the same. Trisha does not appear to like math and

it's a very hard subject for her to understand but she loves books and we've

found that if we incorporate counting with her reading she does better.

Hope this helps a little. :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

October 19, 2006

Hi ,

I'm not sure where you live, but you may want to consider having

evaluated at the Kennedy Krieger Institute in Baltimore, MD, by Dr.

Capone, or at any one of the Down Syndrome Clinics nationally, where a

neurodevelopmental ped. could make a dual diagnosis if appropriate. We live in

New Jersey and have brought our son, , to both Dr. Capone and the

Hackensack University Medical Center which is the home of the Judy Center for

Down Syndrome. Dr. Fred Hirschenfang is the Director there and both he and Dr.

Capone have been very helpful.

Regarding the constipation.... Miralax has worked wonders for and can be

given on a long term basis. It's a stool softener, not a laxative, and we were

told by Dr. Capone that many of the children that he sees are taking Miralax

with great success.

Finally, we have found that school services tend to be better if a child is

dually diagnosed, especially because of the autism piece where speech and ABA

therapy in particular, are an automatic given.

Just some thoughts...you are part of a wonderful and wise group who will offer

you both encouragement and support. Blessings to you and your family.

Best,

Mom to , 3 years old

DS-PDD/NOS

To: @...: kristen3kids@...: Thu, 19 Oct 2006

19:10:53 +0000Subject: Re: Update on Trisha a little long...sorry

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!> > > >

October 19, 2006

Hi. We live in Washington state and if anyone knows of a place here that I can

have evaluated, that would be great! We took her to the Down Syndrome

clinic at the Univ. of WA several years ago and they weren't very helpful.

McDonnell wrote: