frustrated! need some advice.

[Guest guest]

Have you tried teaching her sign? Although Grace is only 20months, she still is not talking. We started teaching her sign, and it has made a world of difference. She still only knows a couple of signs, but uses them frequently. She will use her signs to tell people "thank you," she is much more social with people since the sign. She used to shun off people, because you know how people are, they always try to get a toddler to say something. Now, I think, she actually tries to impress them with her sign. For the other question, we use Cohen. Yes, granted he is wonderful, his schedule is terrible. But, I have heard that he will see new patients, considered as emergencies. I understand that he runs a clinic every Wed. to address new patients needs. After that, though, it is very rough getting your appts. I do not think it is him, rather than poor staffing. It is sad, because we use CCF for everything and no other department has that problem. I can get into Gracies GI with about a two hour notice, if I really feel she needs to be seen. Cohen is good about returning phone calls though, so maybe this would work out for you living farther away. I have never heard anyone complain about Mayo. Maybe you can get in contact with them. Many in this group use Mayo, so I am sure someone will give you info about them. Best of luck, this disease is very frustrating. We are always here to listen to venting, we all need it and do it.

[Guest guest]

Hi everyone. I'm having a rotten week, feeling a little helpless. This

is such a lonely disorder and I'm glad I found all of you. I don't

post much but a read all of yours every day. I was looking at pictures

last night and ran across Abbey's 3 year birthday photos. I realized

just how far she's come along in the past 6 mo. but I was also

reminded of how far behind she is. Abbey is still a little small for

her age but it's becoming more and more noticeable that she's delayed.

People expect her to be able to do " 3 yr. old " things and I'm tired of

explaining why she doesn't say thank you when the bank teller gives

her a sucker or the bagger at the grocery store gives her a sticker.

I'm not embarrassed I just thought that she would be " caught up " by

this time. Her disorder is mild and the doctors expected her to be

further along than she is. When I ask what we can do different they

say " nothing " . I keep reading about how a lot of you see your

specialist several times a year - we have only seen ours once and talk

to him only a few times a year just to have him say that we have to

wait and see. Maybe that is all we can do but I can't stand sitting by

and waiting. I am willing to try anything! What kind of advice,

testing are your doctors recommending? I've heard a lot about Dr.

Cohen but I understand that he's hard to get an appointment with. Any

other suggestions? We live in SC but we will travel anywhere. Thanks

for any info. and/or advice.

[Guest guest]

I understand your frustration. I get that

why too. Sometimes it seems that our kids progress so slowly academically that

we are just spinning our wheels. The goals that we set must be readjusted and

so do our expectations. That’s hard! All of us want our children to be

the best that they can be – and many of us hope that our child will have

a “normal” life someday. Right now there is no miracle cure no

matter what doctor you see. Does that mean give up the fight! HECK NO! But you

need to do something to renew your strength so that you can continue to give

your child and your family support. Personally, I take a mini-vacation every 3

months or so to a hotel and leave the kids in my husbands capable hands. This

gives me a well deserved break and helps Karl to appreciate all that I do for

the kids (and him).

No one is going to help our children as

much as the parents. To this end, I have written my own goals to work on at

home. I have found that (my 2 ½ year old) makes the best progress when I’m

able to spend time teaching him on his schedule not mine. That means PT lessons

happen at 8 pm and speech might be during tube feeds but I get it in when he has

the most energy. This has really helped. There for a while I didn’t know

what my goals should be and then I found the North Carolina Curriculum for

Special Needs. Not that all of our children are behind as much as others but I

found the goals very useful in helping me see what comes next. You can find it

at http://www.brookespublishing.com/store/books/johnson-martin/index.htm,

Good Luck,

Sue Ann

frustrated! need

some advice.

Hi everyone. I'm having a rotten week, feeling a

little helpless. This

is such a lonely disorder and I'm glad I found all

of you. I don't

post much but a read all of yours every day. I was

looking at pictures

last night and ran across Abbey's 3 year birthday

photos. I realized

just how far she's come along in the past 6 mo.

but I was also

reminded of how far behind she is. Abbey is still

a little small for

her age but it's becoming more and more noticeable

that she's delayed.

People expect her to be able to do " 3 yr.

old " things and I'm tired of

explaining why she doesn't say thank you when the

bank teller gives

her a sucker or the bagger at the grocery store

gives her a sticker.

I'm not embarrassed I just thought that she would

be " caught up " by

this time. Her disorder is mild and the doctors

expected her to be

further along than she is. When I ask what we can

do different they

say " nothing " . I keep reading about how

a lot of you see your

specialist several times a year - we have only

seen ours once and talk

to him only a few times a year just to have him

say that we have to

wait and see. Maybe that is all we can do but I

can't stand sitting by

and waiting. I am willing to try anything! What

kind of advice,

testing are your doctors recommending? I've heard

a lot about Dr.

Cohen but I understand that he's hard to get an

appointment with. Any

other suggestions? We live in SC but we will

travel anywhere. Thanks

for any info. and/or advice.

Please

contact mito-owner with any problems or questions.

[Guest guest]

:

We are in the same boat. Except Leah can't walk, talk, and it's obvious some

thing is wrong with her. But because she isn't regressing her metabolic

doctor felt we could go two years unless something comes up or we feel it is

necessary to see him. Because of Leah's case, we don't see alot of doctors.

We see her neurologist twice a year, her eye doctor once a year, and that's

it. I guess we feel there isn't much more we can do for her unless some

thing else comes up. She is on a variety of supplements and we have her go

to special ed preschool four afternoons a week. She is learning some sign

language and that was a good suggestion for you. Even yes, please, thank

you. May be your daughter could learn to sign in thank you. She probably

knows to say it from hearing you say it, but doesn't have the capability to

do it. Do you work with any therapists? Don't be afraid to tell people that

your daughter has a disability that prevents her from speaking. That may

open the door for them to ask questions and if you can you can educate them

on your daughter's disability. I usually hear, " Oh, I haven't hear that one

before " so that opens the door for me to tell them about mito. Some listen

with concern and care, and others just want a quick answer and on their way.

We can only do so much testing unless something is real obvious and the

issues need to be addressed. Do you see a specialist with your daughter?

Ask more questions here, and then go see your doctor again with your

questions. When we see our metabolic doctor I usually have my questions

written down and hope to get a few answers. My husband is with so he can

hear what I'm asking and some times he redirects the question again to see if

the answer comes a different way. I know this isn't much help; but each

child is so different with this disease and my husband and I feel that we are

doing what we can for Leah and if anything else changes then see the doctor

again. We try and stay on top of her issues and make sure she doesn't

regress by taking a stand on what is being done at school for her and trying

not to take her to places when illness is about. Good luck and ask away with

questions to this group.

Nerenhausen

mom to Leah

kristins74 wrote:

> Hi everyone. I'm having a rotten week, feeling a little helpless. This

> is such a lonely disorder and I'm glad I found all of you. I don't

> post much but a read all of yours every day. I was looking at pictures

> last night and ran across Abbey's 3 year birthday photos. I realized

> just how far she's come along in the past 6 mo. but I was also

> reminded of how far behind she is. Abbey is still a little small for

> her age but it's becoming more and more noticeable that she's delayed.

> People expect her to be able to do " 3 yr. old " things and I'm tired of

> explaining why she doesn't say thank you when the bank teller gives

> her a sucker or the bagger at the grocery store gives her a sticker.

> I'm not embarrassed I just thought that she would be " caught up " by

> this time. Her disorder is mild and the doctors expected her to be

> further along than she is. When I ask what we can do different they

> say " nothing " . I keep reading about how a lot of you see your

> specialist several times a year - we have only seen ours once and talk

> to him only a few times a year just to have him say that we have to

> wait and see. Maybe that is all we can do but I can't stand sitting by

> and waiting. I am willing to try anything! What kind of advice,

> testing are your doctors recommending? I've heard a lot about Dr.

> Cohen but I understand that he's hard to get an appointment with. Any

> other suggestions? We live in SC but we will travel anywhere. Thanks

> for any info. and/or advice.

>

>

> Please contact mito-owner with any problems or questions.

>