need advice

[Guest guest]

Ellen & ,

I can understand your situation, but the most troubling thing I read in

your post was that is being removed from Early Intervention

services. Is this your choice or are they refusing services? I would

keep him in there -- the extra help may be why he's so advanced in some

areas, as you noted. It can't hurt him to be in EI, so....

As to telling the other kids, was just 11 when she found out she

has a diagnosis of MDS and it was HER choice to not tell her younger

sisters. Of course, even her younger sisters have noticed there are

certain things that can't do that they can, but we have always

reinforced the concept that everyone is different. We all have

different strengths and weaknesses. We use ourselves as examples. I do

words, Jaymie does numbers, etc.

While you may want to share this news with your adult friends, I would

avoid " labelling " in terms of other kids. I agree with your theory

to let them learn to love and accept him just the way he is -- for as

long as you can -- without adding the negative conotation of " MDS " or

" special needs. " I think one of the things that has helped

continue to develop as much as she has, is that her sisters don't

expect anything less than what's " normal, " which in turn helps motivate

to be the " big sister " and continue to reach important

milestones on her own. Sure, that may be the most twisted logic, but I

think the minute you lower expectations, it seems to be what is

achieved.

I can't believe I found a golf analogy, but here goes. If you play with

a really good golfer, YOU play better than you normally would. If you

play with a bad golfer, you also seem to play worse.

(, you were worried that YOU rambled on? LOL, gotcha beat!)

I'll shut up at this point. As always, I offer the above text as my

humble opinion and slightly skewed view of the world.

IMDSA Nat. VP

__________________________________________________

[Guest guest]

> Help!

>

>

> Its hard to believe that is going to be one at the

> end of this week. I've been fighting back the tears,

> not only because my baby is growing up, but also

> because of a plan my husband and I had come up with

> when he was born.

>

> As you guys know - we found out about 's MDS thru

> amnio. When he was born the doctors second guessed the

> results because he had no features. We opted only to

> tell a selected few family members, and didnt tell his

> brother or sisters. We wanted them to get to know

> first - open their hearts to him without the barrier

> that there was something wrong with him. At ages 11,12

> and 5 we thought they wouldnt be able to understand the

> MDS and since he had no features we could take one

> month at a time. Our plan was to open up about the MDS

> at his first birthday- then we would have some

> explaining to do why he wasnt walking or doing things

> other babies are doing at his age. We socialize with 5

> or 6 families with babies the same age- our next door

> neighbor has a daughter born a day after

>

> Well, has continued to suprise us month after

> month with his accomplishments. The sitting, crawling

> were great - then the walking by 8 months! He's now

> climbing stairs, running and can get off the couch

> correctly(turns himself around and slides), he just

> started playing catch - he can throw and catch the ball

> consistently. He feeds himself- sometimes with the

> fork/spoon but mostly with his hands. When you ask for

> him to get something he knows what you are looking for

> and will bring it to you. He has a few words, most are

> unclear but we know what they are. He talks all the

> time in that " Chinise-like " babble. Instead of making

> up excuses for why isnt doing the things the

> little girl next door is - we have found our self in a

> different position of having to make excuses why

> so far ahead of the other babies.

>

> But here we are at 1 year and while we planned to open

> up to everyone about 's MDS - we are now not sure

> if this is the right thing to do for 's sake. He

> has no delays - they are removing him from Early

> Intervention - he's doing great. There is a chance the

> MDS will never manifest itself - or show. Do we want

> to label when noone would ever be able to tell

> otherwise? Kids can be so cruel - whether he has delays

> in the future or not - if it gets out about the MDS the

> kids will us it against him. I dont know - I'm so

> torn on this one because there is another part of me

> that feels like I'm an imposter - that I'm hiding

> something. When people comment about how advance

> is for his age I have to bite my tongue not to sing his

> praise about the diagnosis of MDS...etc etc.

>

> I have found this groups advise very comforting and

> valuable, as you all know exactly what I'm experiencing

> as you live a part of my live everyday-

> Thanks ahead for the advise -

>

> Ellen and

[Guest guest]

Ellen, I forgot to ask what the precipitating factor is in stopping the EI also. It seems like "an ounce of prevention" while it is available to you is worth sticking with. I am also curious as to whether or not the EI folks are the ones wanting to take out of it? It is wonderful that he is not really needing it, don't get me wrong. I wish Jonas qualified for nothing in all reality because that would mean he is doing REALLY well. My father at the first knowing of Jonas' diagnosis said, "Why don't you wait and see what he really needs? He may not need this therapy!" I told Dad that the reason we HAVE to do it now is that if we wait until we notice his delays and figure out that he DID need it, it would be too late to get it and he would be far behind before we even began doing all we could to make sure he does the best he possibly can. Just wondering about that... Barb Martz Mommy to Jonas (MDS) & Need advice Help!Its hard to believe that is going to be one at theend of this week. I've been fighting back the tears,not only because my baby is growing up, but alsobecause of a plan my husband and I had come up withwhen he was born.As you guys know - we found out about 's MDS thruamnio. When he was born the doctors second guessed theresults because he had no features. We opted only totell a selected few family members, and didnt tell hisbrother or sisters. We wanted them to get to know first - open their hearts to him without the barrierthat there was something wrong with him. At ages 11,12and 5 we thought they wouldnt be able to understand theMDS and since he had no features we could take onemonth at a time. Our plan was to open up about the MDSat his first birthday- then we would have someexplaining to do why he wasnt walking or doing thingsother babies are doing at his age. We socialize with 5or 6 families with babies the same age- our next doorneighbor has a daughter born a day after Well, has continued to suprise us month aftermonth with his accomplishments. The sitting, crawlingwere great - then the walking by 8 months! He's nowclimbing stairs, running and can get off the couchcorrectly(turns himself around and slides), he juststarted playing catch - he can throw and catch the ballconsistently. He feeds himself- sometimes with thefork/spoon but mostly with his hands. When you ask forhim to get something he knows what you are looking forand will bring it to you. He has a few words, most areunclear but we know what they are. He talks all thetime in that "Chinise-like" babble. Instead of makingup excuses for why isnt doing the things thelittle girl next door is - we have found our self in adifferent position of having to make excuses why so far ahead of the other babies.But here we are at 1 year and while we planned to openup to everyone about 's MDS - we are now not sureif this is the right thing to do for 's sake. Hehas no delays - they are removing him from EarlyIntervention - he's doing great. There is a chance theMDS will never manifest itself - or show. Do we wantto label when noone would ever be able to tellotherwise? Kids can be so cruel - whether he has delaysin the future or not - if it gets out about the MDS thekids will us it against him. I dont know - I'm sotorn on this one because there is another part of methat feels like I'm an imposter - that I'm hidingsomething. When people comment about how advance is for his age I have to bite my tongue not to sing hispraise about the diagnosis of MDS...etc etc.I have found this groups advise very comforting andvaluable, as you all know exactly what I'm experiencingas you live a part of my live everyday-Thanks ahead for the advise -Ellen and

[Guest guest]

Dear Barb and :

It is Early Intervention that is pulling him from the program - not us. We want him to stay in- believe me. I truly feel that many of his accomplishments are due to the fact that EI is on top of him. They corrected his crawl, they improved his walking they gave me games to play with him to encourage his language. She introduced puzzles to him and he's great at it - I would have never introduced them this early. She also encouraged us to ask him where is body parts are - or ours are- again something I never would have started 1 1/2 - 2. He points to his nose if you ask him - where is 's nose.

We are in the process of moving and thats how this all came about. The EI he's had for the past year did their 1 year evaluation and said he doesnt qualify for services. The EI where we are moving - whom I loved because they really seemed knowledgable - said they have to go by the recommendations of the other place. I was finally able to get the new place to at least agree to evaluate him. The director is very knowledgable and she actually has some concerns about his speech and possible autism (at least of what I have told her over the phone) While I would love for them to continue seeing twice a month, I'll be thrilled if they would just agree to visit once a month to make sure he's on track. I'll even settle for every other month. We meet with them in September - meanwhile we are on our own. We are so busy with moving I guess it's okay. Maybe I'll keep him up real late the night before the appointment so he'll be real tired and not functioning well. Actually, he is having surgery the first week of September ( circumcision and snipping his tongue tie) I should probably schedule our visit with EI right after this - I'm sure he'll have trouble walking, and his speech we'll certainly be off (sneaky -sneaky)

I just dont want to loose their services. has MDS- bottom line. I dont want to wait till he has a problem - EI can pick up on things so early - anyways- talk about rambling on - Hopefully, we'll be able to keep the services once we meet in September.

The big birthday party is Sunday. I'll share pictures next week.

Ellen Kugel

[Guest guest]

In a message dated 7/24/02 10:16:02 PM Afghanistan Standard Time,

ekugel@... writes:

<< I just dont want to loose their services. has MDS- bottom line. I

dont want to wait till he has a problem >>

Ellen:

When was a baby I was constantly faced with the same situation you

are facing with . The Early Intervention people were always on the verge

of taking 's services away, at least I always felt that was what

they were trying to do. I managed to hold on to all her services until she

was ready for kindergarten. Keep fighting and keep up the faith and things

may turn out better than you fear. If the director of the new EI program

feels she has some concerns perhaps she can exaggerate 's needs enough to

keep him in the program. I really hate that we have to fight so hard to get

our kids help.

I've always faced the which comes first, the chicken or the egg question.

Did do so well because of the services she recieved or would she

have achieved those milestones on her own. It was a risk I didn't want to

take and I'm sure you will do all you can to keep in EI. Now that she

is going to be 9 years old and going into fourth grade I've been forced to be

in the wait and see mode. Waiting for delays is much harder than getting the

services to reduce or prevent the delays in the first place.

Happy upcoming birthday !

ann

[Guest guest]

Ellen, Glad to hear you are still fighting to keep services. If you voice your concerns and also make it clear that you realize that the time to act is before any problems arise, visa vi, "Early Intervention"!!! they should be able to keep him receiving services. Are you moving within your state? I wish you the best with the move and everything else! My goodness you are a busy woman these days! Please remind me to keep in prayer as the surgery draws near specifically. I will pray you do not lose your mind in the move. I am pretty sure I packed some of mine somewhere 4 years ago when we moved, but I have not found the right box in the basement on the shelves yet. Have a great party too! Barb Martz Ma Ma to Jonas 1 1/2 (MDS) & 7 Re: Need advice Dear Barb and : It is Early Intervention that is pulling him from the program - not us. We want him to stay in- believe me. I truly feel that many of his accomplishments are due to the fact that EI is on top of him. They corrected his crawl, they improved his walking they gave me games to play with him to encourage his language. She introduced puzzles to him and he's great at it - I would have never introduced them this early. She also encouraged us to ask him where is body parts are - or ours are- again something I never would have started 1 1/2 - 2. He points to his nose if you ask him - where is 's nose. We are in the process of moving and thats how this all came about. The EI he's had for the past year did their 1 year evaluation and said he doesnt qualify for services. The EI where we are moving - whom I loved because they really seemed knowledgable - said they have to go by the recommendations of the other place. I was finally able to get the new place to at least agree to evaluate him. The director is very knowledgable and she actually has some concerns about his speech and possible autism (at least of what I have told her over the phone) While I would love for them to continue seeing twice a month, I'll be thrilled if they would just agree to visit once a month to make sure he's on track. I'll even settle for every other month. We meet with them in September - meanwhile we are on our own. We are so busy with moving I guess it's okay. Maybe I'll keep him up real late the night before the appointment so he'll be real tired and not functioning well. Actually, he is having surgery the first week of September ( circumcision and snipping his tongue tie) I should probably schedule our visit with EI right after this - I'm sure he'll have trouble walking, and his speech we'll certainly be off (sneaky -sneaky) I just dont want to loose their services. has MDS- bottom line. I dont want to wait till he has a problem - EI can pick up on things so early - anyways- talk about rambling on - Hopefully, we'll be able to keep the services once we meet in September. The big birthday party is Sunday. I'll share pictures next week. Ellen Kugel Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Hi everyone and thanks for reading this and answering this for me. I have been

suffering from fibro and cf for as long as i can remember. I am on lyrica,

prozac and topamax and other meds at times. well I live with the shacks and

fibro fog and i stay tired i have to force myself to do just the basic things in

life. I barely have a life and I stay depressed. I have no life except my baby

girls who really aren't babies any more. but they keep my head above the water

most days anyway. I think my hearing is going too. I feel crazy half the time. I

just don't know what to do any more. How do I find a dr. to treat me like i

deserve to be treated and not like a junkie???

Your friend Christi

[Guest guest]

> Hi everyone and thanks for reading this and answering this for me. I

> have been suffering from fibro and cf for as long as i can remember.

> I am on lyrica, prozac and topamax and other meds at times. well I

> live with the shacks and fibro fog and i stay tired i have to force

> myself to do just the basic things in life. I barely have a life and

> I stay depressed. I have no life except my baby girls who really

> aren't babies any more. but they keep my head above the water most

> days anyway. I think my hearing is going too. I feel crazy half the

> time. I just don't know what to do any more. How do I find a dr. to

> treat me like i deserve to be treated and not like a junkie???

>

> Your friend Christi

Here's my smart a__ answer:

Forgive them, for they know not what they do.

Here's my more reasonable answer, which takes a lot on our part.

Expect only what a health care professional has to offer rather than

the help we actually need. Use them for what they can help with and

consider alternatives to mainstream doc care for the rest.

My hearing was going, got checked, found I had the hearing of a much

younger person. The problem is actually information processing rather

than a hearing problem. Not that the hearing doc knew to tell me that.

I learned the difference after joining and attending local support

group.

toni

[Guest guest]

Hi, Christie,

If you are unhappy with your doctor, ask for a second opinion. A good doctor

will not resent this. If yours does, then that's another indication that you

should find someone else.

There are some websites that have doctor ratings. I don't know if you live where

there are a lot of doctors or not. Also ask people you know who they see and

who they like.

If you are depressed, please make sure that a psychiatrist treats your

depression, not an internist. The titration of antidepressants and their

combination with other drugs requires someone who does it full time. You might

also find a good psychotherapist, whether social worker, counselor or

psychologist could help. Depression also causes fatigue, so it can be difficult

to tell if it is from fibro or depression. Antidepressants, antipsychotics and

tranqulizers can make one foggy. Yet another reason to make sure your meds are

right for you.

When you get some referrals, call the doctor's office and ask some questions.

If you have good insurance, it might even cover a short visit to interview the

doctor. You want to know the doctor's philosophy. Does s/he include the

patient's input in treatment or is s/he autocratic? How available to you would

s/he be? Etc.

Good luck. Let us know what happens.

>

> Hi everyone and thanks for reading this and answering this for me. I have been

suffering from fibro and cf for as long as i can remember. I am on lyrica,

prozac and topamax and other meds at times. well I live with the shacks and

fibro fog and i stay tired i have to force myself to do just the basic things in

life. I barely have a life and I stay depressed. I have no life except my baby

girls who really aren't babies any more. but they keep my head above the water

most days anyway. I think my hearing is going too. I feel crazy half the time. I

just don't know what to do any more. How do I find a dr. to treat me like i

deserve to be treated and not like a junkie???

>

> Your friend Christi

>

[Guest guest]

Another thought: both Topamax and Lyrica are drugs that work on the nervous

system. They can both cause fatigue/fogginess. Why are you takimg both? Have

you asked your doctor about this?

>

> Hi everyone and thanks for reading this and answering this for me. I have been

suffering from fibro and cf for as long as i can remember. I am on lyrica,

prozac and topamax and other meds at times. well I live with the shacks and

fibro fog and i stay tired i have to force myself to do just the basic things in

life. I barely have a life and I stay depressed. I have no life except my baby

girls who really aren't babies any more. but they keep my head above the water

most days anyway.