New to Group

February 27, 2003

Kim-

When we put her on Carn-aware she was more alert and hyper but since she has

been on the AEDs she has been sluggish and I welcomed a change. She did

mellow over time. Now she is just like every other typical kid. It is also

nice to see that she is making it to the developmental milestones that she

never made it to. Sedona has alot of cognitive processing problems and this

has really improved them as well as her speech.

-- Re: [ ] new to group

: I hope you don't mind a quick question....and welcome to the group!

When you put your daughter on the Carn-aware...did you notice any negative

side-effects? I tried my son on carn-aware and he went nuts. No,

really...NUTS! He never stopped moving and moving. It was awful. I

took him off the supplement after only 3 days, and I wonder from time to

time if I didn't give him enough of a chance. What did you experience?

Kim

February 27, 2003

Hi Yael,

how old is your daughter and what are the other supplements you are

giving her? We have a son (will be 5 years old in May), who is hypotonic

with severe speech delay.

Rivka

yael wrote:

> I'm not , but my daughter has been taking

> Carn-aware for several months with no bad side

> effects. Her speech is really taking off--hard to say

> if it is the Carn-aware or other supplements but we

> think it is helping.

>

> Yael

March 3, 2003

: Thanks for the reply, but you lost me with AEDs....what are AEDs?

I think I will try the carn-aware again, but since he starts school

tomorrow...I will wait a while. Thanks again. Kim

---------

Kim-

When we put her on Carn-aware she was more alert and hyper but since she

has

been on the AEDs she has been sluggish and I welcomed a change. She did

mellow over time. Now she is just like every other typical kid. It is also

nice to see that she is making it to the developmental milestones that she

never made it to. Sedona has alot of cognitive processing problems and this

has really improved them as well as her speech.

March 3, 2003

Kim-

AEDS are Anti-Epilepsy Drugs. Don't wait to long to start the Carn-aware.

Sedona's educational goals really took off once we started it.

-- Re: [ ] new to group

: Thanks for the reply, but you lost me with AEDs....what are AEDs?

I think I will try the carn-aware again, but since he starts school

tomorrow...I will wait a while. Thanks again. Kim

March 18, 2003

My son is 4-1/2 years old. He has been in speech thearpy since he was 2 and

when he was 3-1/2 - I was told he has apraxia.

Can you understand your son? Can other people understand him? If so, then he

probably is just going at his own pace. If he is not understandable, I would

think he has apraxia.

My son says a lot of words, but my 9 year old daughter and myself are the

only ones who can understand him mostof the time. He seems to be getting

better with his speech, but he still has a long way to go.

I wish you the best,

God Bless You and your family.

March 18, 2003

Hi and welcome,

Please try and talk to your case manager with EI, to try and get

therapy going again. I agree, it is counter productive for him to be

in a class where he is miserable. Were you an active participant in

this group or were parents asked to leave? If that is the case, I

don't know too many 25 month olds who separate easily and with

strangers who are holding him. On top of that, you just moved which

could also explain his reservations. If you can stay with him to

help with the transition I think that would be helpful.

For your own piece of mind, have the dev. ped. exam. Make a list of

all your concerns, all his milestones etc... Does he understand what

you are saying? Does he follow 1 step directions, can he imitate a

word, does he have good eye contact? Can he lick a lollypop, try and

blow bubbles, etc... To be honest even, 40 words at 2 doesn't seem

horrible. Most of our kids were non-verbal at 2. Are they

intelligible or only you understand them in context?

I know there are a few military families on the list. They'll

probably offer guidance on how to help you.

Good luck.

denise

So before you get yourself crazy, have the appointment and take it

from there.Perhaps try and get another opinion if you aren't

comfortable with the first one.

> Hi, I'm and my son Kristopher is 25 mos old and says about 40

> words. He has yet to be diagnosed with anything. I'm in the

> process of getting an appt with a developmental ped at our Naval

> Hospital and I'm just trying to educate myself as much as possible

> in order to advocate for my child. I did have him evaluated at

> 18mos by EI in CT and they seemed to think he was speech delayed

and

> offered speech therapy. He seemed to do well with them coming to

> our home, but then we moved to WA (my husband is in the Navy and

> we've moved 5 times in the last 2 years...he is currently

deployed)

> The state EI program here offered a pre-school class and speech

> therapy (not in home, we live on base) Well Kristopher did not do

> well at all in the class, he was 23 mos at the time and seemed to

> cry half the class...he didn't want to sit, so the teachers would

> try and hold him down and the entire thing just seemed counter-

> productive to me. Soo I pulled him out, well thats when they

> started recommending further evaluations. Well now I'm terrified

he

> will be diagnosed with something, and how can I be sure it's

> the " right " one? If anyone has any suggestions on any tests I

> should ask for, or anything I can do to prepare myself and my child

> for the process, please feel free to let me know what you think. I

> look forward to listening to everyones story and learning as much

as

> I can from this group.

>

March 18, 2003

Although I took Kristopher out of the pre-school class he is still

receiving speech therapy 1x a week. I did stay in the class with

him and for the most part was the one that tried to make him sit

when he needed to. I know he understood he needed to sit, because

he would go get his little carpet, put it on the floor then run as

fast as he could into this little house they had in the classroom

It was when I would stand back for a moment, just to see if

Kristopher would cooperate on his own that the teacher would grab

him. I mean can't a toddler just have a minute? His speech

therapist seems to understand most of what he says. I'd say someone

on the street would probably understand 10 of his 40 words. He

makes up a lot of words for things " Buzz Lightyear " is " Donna " and

he'll argue with my 9yr old if he tries to correct him. He has his

little quirks for sure. Lately, he has been refusing to take off

his jacket or shoes outside of the house, he used to cry if a

stranger even looked at him, now he shows his toys and tries

to " talk " to them, but I'm almost positive I'd have a hard time

leaving him with anyone at this point without him screaming his head

off. He doesn't imitate words, but will imitate gestures and

sounds. He has been trying to say " fish " lately, but it sounds

like " dis " except really nasal. He's VERY active, my oldest told me

last night that it seems like Kristopher is in every room at once.

He can lick a lollipop, has blown bubbles hmm what else..seems to

understand most of what I say. It's just so hard at this age to

figure out what are " red flags " and what is just normal toddler

behavior. I'm praying he will be cooperative with the ped. He did

really well with the last eval, but they came to our house. I have

days where I think he's going to be just fine and just needs a

little time, but am scared I'm going to miss some " window of

opportunity " to get him some help if it turns out he has other

issues. Thanks to all who made it this far. Oh yeah, one more

thing, my EI case manager was also a teacher in that pre-school

class so it seems hard for me to communicate with her at times.

Last time I talked to her she called me " " hehe my name is

. Oh and one more question, I feel tempted to resist any labels

until he is older, but would I have more resources for him if he did

have a diagnosis? Has anyone else struggled with this?

March 18, 2003

Hello : I just wanted to say that you sound an awful lot like me!

First, I agree about the red-flags! I never knew (and sometimes now -

dont know) what is normal toddler bahavior and red-flag behavior. And the

endless questions to the experts who know the difference was getting out of

hand. I finally had to sit down with a speech/language pathologist who

did his 2 year AND 3 year evaluation for an " off the record " conversation

about my son .

That therapist sees many, many kids.......all different kinds with many

differenct communication impairments. I see just one kid, mine - and

mom's are emotionally attached! She told me that she can spot within

minutes if there are red-flags going on or not. And she would definitely

tell me if she thought there was something else going on. Have you

already had an evaluation? You may have answered this already...and I

missed it. This therapist/evaluator was wonderful. She answered ALL of

my questions, directly! She never beat around the bush at all....telling

me, " yes, this is a problem and this is what you need to do " .......or " no,

relax, that is ok " .

also has issues with his coat/shoes....it drives me nuts! This

weekend, it was SO nice outside, 60's and 70's like weather, but

had to wear his winter coat....because he was so used to it....even though

he fought wearing his winter coat in fall when the weather got cold. And

after a struggle over the coat, I let him wear his winter coat outside for

10 minutes, then changed him over to a spring coat. But these behaviors

is what gets to me the most.....MORE than his speech issues. He has come

so far in just one year with his speech that I do think - OVER TIME - he

will speak great! But those behaviors are what gets to me the most.

Finally, I would not fight the diagnosis at this point. From what I have

read, sometimes the diagnosis changes as the child changes. Get him into

all the services you need, as much and as often and with the therapists

that he likes and you like.

Take care and good luck.

Kim

>He's VERY active, my oldest told me

>last night that it seems like Kristopher is in every room at once.

>He can lick a lollipop, has blown bubbles hmm what else..seems to

>understand most of what I say. It's just so hard at this age to

>figure out what are " red flags " and what is just normal toddler

>behavior. I'm praying he will be cooperative with the ped. He did

>really well with the last eval, but they came to our house. I have

>days where I think he's going to be just fine and just needs a

>little time, but am scared I'm going to miss some " window of

>opportunity " to get him some help if it turns out he has other

>issues. Thanks to all who made it this far. Oh yeah, one more

>thing, my EI case manager was also a teacher in that pre-school

>class so it seems hard for me to communicate with her at times.

>Last time I talked to her she called me " " hehe my name is

>. Oh and one more question, I feel tempted to resist any labels

>until he is older, but would I have more resources for him if he did

>have a diagnosis? Has anyone else struggled with this?

>

March 18, 2003

Thanks, your message really made me feel better, especially about

the jacket issue Hopefully he'll get over it by this summer!

>

> also has issues with his coat/shoes....it drives me

nuts! This

> weekend, it was SO nice outside, 60's and 70's like weather, but

> had to wear his winter coat....because he was so used to

it....even though

> he fought wearing his winter coat in fall when the weather got

cold. And

> after a struggle over the coat, I let him wear his winter coat

outside for

> 10 minutes, then changed him over to a spring coat. But these

behaviors

> is what gets to me the most.....MORE than his speech issues. He

has come

> so far in just one year with his speech that I do think - OVER

TIME - he

> will speak great! But those behaviors are what gets to me the

most.

>

> Finally, I would not fight the diagnosis at this point. From

what I have

> read, sometimes the diagnosis changes as the child changes. Get

him into

> all the services you need, as much and as often and with the

therapists

> that he likes and you like.

>

> Take care and good luck.

>

> Kim

March 20, 2003

Hi Ken,

Welcome to the group although I am sorry for the reasons that brought

you here. Yes, many of us have the " you look fine " look. I guess it's

a blessing and a curse.

The one thing I wonder is whether she has fully accepted what is

going on physically. Is she resentful because she thinks you feel she

can't take care of things herself? Do you find yourself

overcompensating and doing more than you used to? In regard to being

open to others sometimes it's easier to talk to people that are not

immediately involved in the situation.

Your sex life could be based on many things, your wife not feeling

like a total woman anymore, her body hurting from Lupus and RA,

reactions to medicine, etc. I wouldn't try and take it too personally

and broach the topic with her when neither one of you is frustrated

or too emotional. If someone would have told me 7 years ago that I

would turn down advances from my wife I would have said they were

crazy. It's amazing though how much of a toll these diseases can have

on a person physically and emotionally. There was a good article in

the lastet issue of Arthritis Today about intimacy. You should try

and get a copy.

I hope that you both are able to discuss these issues and cope with

them. These diseases are horrible in so many ways and one learns how

important a strong support group can be.

All my best,

Alan

March 20, 2003

Welcome, Ken!

I am very sorry to read that you and your wife are having such

difficulties. Problems such as yours are very common for couples who are

trying to cope with the challenges chronic illness presents.

Does your wife know how you are feeling about things? For example, would

anything you told us about the situation surprise her? The more open you

both can be about how you perceive the situation and what you would like

to see change, the better.

Have you considered counseling? I strongly recommend it. There are

therapists who have experience helping couples who are trying to deal

with chronic illness.

Although it is very difficult to overcome for many, even our physicians,

please do everything you can to break the association of looking good

with feeling good. A very smart fellow I know asks his loved one: " You

look terrific, but how do you feel? "

[ ] New to group

> Hello guys, I am new to the group but not an RA sufferer. My wife

> has lupus and RA. I know she suffers a lot and will get a lot out of

> this group as well. To be honest, the reason I joined the group is

> because while I try hard to understand, she does have the " you look

> fine " look. But the truth is, there seems to be a lot of adverse

> affects on us as a couple. First is her pushing me away, telling me

> that I do too much for her. I try to be very attentive and

> anticipate her needs, but she has begun to resent this. It has hurt

> me very much to have to back off like this, because this is a

> primary expression of love for me. All the while, she seems very

> open to others. This is very frustrating to me. And then the sex

> life is nill. I usually supress my feelings on this, but at times it

> is very difficult, given her " you look ok " look. Then when I do

> finally say something, it creates a huge problem, in which I feel to

> be made out to be a bad guy. I need help now, any advice you can

> give as to how I can deal with these problems, or understand them

> better. I don't want to be an extra burden on her, but I also want

> my marriage to be as much as it can be.

>

> Thanks,

> Ken

March 20, 2003

Hi Ken,

So good to hear from a husband who is genuinely concerned about his

wife. I hope she will join our group too, as I have gotten some

wonderful support and feedback. I am in the process of being

diagnosed, though they're not actually sure what just yet. But I

have been in considerable pain and discomfort for nearly one year.

My husband and I are a " mature " couple (translation: he is 66 and I

am 56.) As he has had some health problems in the past year

(Parkinson's disease) I hesitated to burden him with my problems and

tried to tough it out. But I finally had to tell him how much I

hurt, and how much it hurt me to not be able to do things myself. We

have achieved a good communication, especially since he sometimes

needs help with things, so that we ASK each other when we need help.

If I am too tired or in too much pain to do the laundry, I will ask

him, and he happily does it. Sometimes all we both need is to sit on

the couch and be close to each other. But all this has greatly

improved the overall communication in our marriage and made us more

empathetic rather than resentful. Sometimes it means more to me to

do something myself even if it hurts, just to feel more in control.

My best to both of you,

Judi

March 20, 2003

Welcome Ken. It¹s admirable that you care enough to try to help your wife.

I am a very independent person and have been know to do stupid things in

order to do it myself.

It¹s hard to admit that things we used to do so easily now are difficult and

cause pain.

It¹s only in the last year or so that I¹ve come to terms with the fact that

I just can¹t do things anymore.

Maybe you should step back a little and see if she will ask for help when

she needs it.

As far as the lacking love life, it¹s hard to have desire when it¹s painful

to move. We learn to take

advantage of the good days and snuggle on the bad ones. Here are some

articles that may help:

Sex and Arthritis

http://www.orthop.washington.edu/arthritis/living/sex/01

Guide to Intimacy with Arthritis

http://www.arthritis.org/resources/Relationships/Intimacy/flares.asp

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