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flamin_lemonade
01-10-2002, 11:21 PM
Why is there even a board here if you all aren't going to post? I remember when I first had my daughter, this was the place to go for all the best advice. Please, keep the lines of communication OPEN!!! Nikky

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sue bell
01-25-2002, 04:46 AM
Hello everyone I,m new to this, I needed some information about DS. Which is not a subject I<m familier with. Question is it possible to have minor systems of DS. My daughter who is now 22 may have a slight look of DS although she is very atractive. But she is only 5ft 2inch is very clumsy forgets things her mind is not always there. but she is very intelligent. Ive looked on the web sites about this but it is very basic, my daughter has no idea what I may think, but it was all triggered one day looking at a poster of a very sweet little girl who has DS and I thought to myself she looks so much like my daughter when she was young, so now Im wondering if she may have slight systems of DS is this possible.
Would gladly welcome any comments. Louise MUM.

flamin_lemonade
01-25-2002, 11:54 AM
I think there is a such thing as having a slight case of DS because the syndrome varies from case to case. My daughter, infact, has a very slight case. Noone can tell from just looking at her, and she, so far, is only delayed a month, and thats with walking and some other motor skills. But I would say that it is strange that the docter didn't catch that at birth, with the blood tests and all. That seems weird. I would take her to a genetics clinic, if you have one, and have some blood work ordered. If she does have it, even a slight case, it should show up in the blood test. Let mek now what happens, Nikky

flinny
01-27-2002, 06:57 PM
You may want to do a search on Mosaic Down's. My daughter has Trisomy 21 and does very well. Many Mosaic Down's children and adults fair very well.
If you find a coincidence and need to know then contact your family doctor. Your daughter is 22. That was awhile ago and she may not have been recognized as having anything like DS.
My middle daughter who is now 13 has the clumsies. She is double jointed and is not solid on anything she does because her joints give. She has to put a lot of work into running because she works against the instability in her knees and ankles. She is constantly twisting and wrenching her ankles and her right knee. You can hear them pop in and out of joint at times when they do give and then pop back in.
My daughter also has tendencies to be ADD-HD but at this time appears more just not to pay attention to details. She is doing better as she gets older.
Ask you daughter's doctor if you feel strongly about your daughter's situation.

Tifferbelle
01-27-2002, 09:40 PM
There really isn't such a thing as a slight case of DS. You either have it or you don't, the exception being Mosaic DS. Individuals, however, can vary in the degree to which they are affected. My daughter, who is 7, is very functional for a DS child, though she is delayed. When she was very young she didn't really look like she had Down's except to people really familiar with it. It's more evident now although many people still don't notice it. Mostly she just looks and acts young for her age. She wasn't even diagnosed until she was nearly a week old, and even then what clued them in was her heart defect. When she was very young she wasn't much more than a month or so delayed but as she's gotten into school age the gap has widened a bit. Anyhow she is still very cute and has lots of "typical" friends. Her teacher recently told me she was the most popular child in her class. Her classmates aren't aware of her disability. I would be surprised if your daughter had Down Syndrome and nobody noticed it until now unless it is Mosaic. Some people with Mosaic are barely affected at all.

flamin_lemonade
01-28-2002, 01:09 AM
Tifferbell,
I think that you may have mistaken the term slight...I know that you either have Down Syndrome or you don't. By slight, I simply meant that my daughter, Kayla, has almost NO signs of having DS, except that she is not quite walking yet. I in no way meant that she only had it "a little bit". Her case is mild...perhaps MILD is a better word. I am sorry if you thought that I meant that the case was slight. That is not what I intended when I said that. Perhaps the 22 year old we are speaking of has some other sort of delay, or perhaps something that sets in as someone gets older, instead of being evident at birth. In any case, if the mother above feels that there is cause to question what is going on with her daughter, then she has the right to ask, and we have the responsibility to be concerned and helpful, don't you think so?
Nikky

Tifferbelle
01-28-2002, 05:35 PM
Sorry Nikki,I didn't think I was being unkind. Besides being a parent I also work with special needs kids aged birth to 21. We often find that new DS parents question if their child may have only a slight case. We generally explain the genetic condition to them so they can understand, but remind them that their child's development has a lot to do with the amount of work they are willing to do as parents. It's amazing how many parents even of older children really don't understand their child's disability. There are also a lot of great parents who are very involved. I just meant with the young woman in question that if she had Down Syndrome I would be surprised that nobody (meaning doctors or teachers) had suspected it before now. This makes me think of Mosaic which actually can go undiagnosed if the chromosome split later in fetal development. I agree with you that it is important to try to be helpful and I'm sorry if I did not come across that way.

flamin_lemonade
01-29-2002, 02:09 PM
Tifferbelle,
It's fine. I just wanted to clear up my end too. I agree that it seems almost impossible that someone, ANYONE didn't detect that the girl in question had DS before now. It doesn't make a whole lot of sence. It's a shame she hasn't showed up again. HMMMM nikky

 
 
 




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