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Old 02-25-2006, 07:20 AM   #1
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Am I Overly Concerned? Please Help

Hello everyone. I'm sure that I'm over reacting, but my grandmotherly intuition has me a little bit worried and I've been lurking in this site for a month or so. My daughter has a beautiful baby girl, 5 months old, who was born with no complications. She has had no developmental delays that I can see and the doctor has not commented on anything that seems to be wrong. However, the baby has had a protruding tongue since birth and as she's gotten older the problem has become very pronounced. She continually thrusts her tongue out and even when resting, napping, her tongue is out of her mouth to some extent. I mentioned to my daughter that she should ask her pediatrician if this was normal. She did ask him and he said, "She is probably teething or just experimenting with her tongue." I don't buy that. Can she be teething since birth? So finally, after doing some research, I saw that in some children, tongue thrusting can be one of the only outwardly symptoms of Downs. I spoke to my daughter again and she called her pediatrician yesterday. He wants her to bring the baby in next week for some testing or an exam. The only other thing that I see is that she seems to have a "flat" head when looking at her from the side. And one last thing, her fingers are always apart at funny angles. Please don't think I'm being a crazy grandma, I just want to know what any of you think. Could these things be a sign of DS? Thanks for any help you can give me. Also, what kinds of things would the doctor be looking for on the exam?

 
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Old 02-25-2006, 09:47 AM   #2
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Re: Am I Overly Concerned? Please Help

Hi,
Well I must say some of the signs are there, when my son was a baby he did have his tongue out all the time, we had to tap it and them he would put it inside his mouth, we were told to do that be the therapist, dose she had a gap between here big toe and the one next to it? My son didn't gain weight very quickly and his crawling and walking was delayed? Can she sit up? Are her eyes a little slanty? It's good to have this checked out, she will need therapy and some extra help if it is true, it's best to tackle those things early. Keep us posted on the out come, she will have to have genetic testing done, that takes time, I think about two weeks, those two weeks seem to take so long.
Karen

 
Old 02-26-2006, 12:29 AM   #3
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Re: Am I Overly Concerned? Please Help

There is more than one type of down syndrome... the rarest form is called "Mosaic Down Syndrome"... children with this type of downs may have fewer features of typical down's, due to the nature of it. What it means is, some of the cells in the body are the normal, 46 chromosome cells....but some of the cells have the 47 chromosome cells, with the trisomy 21. This can be in any ratio... a child could have only 5%, or 10% affected cells.... or could have 90% or 95%.....or anything in between!!
My son was tested as having 50% of his cells affected. He has mild DS traits... many strangers who see him don't pinpoint it as Down Syndrome... No doctors recognized it when he was a baby (and he was hospitalized for 3 surgeries, so he saw LOTS of doctors and nurses) and even a geneticist, when looking at his baby pictures said she would not have recognized it. At 16 mos, he was basically diagnosed by "accident"...although, I'd been asking his doctor month after month, what was wrong with my son!

PERHAPS you're reaching...and that's ok, because, thats how we sometimes do get these diagnoses... maybe she just has some weak muscle tone... but, most people don't know Mosaic Down Syndrome even exists, and I'm POSITIVE, there are countless numbers of people undiagnosed... so, I just thought I'd share my info with you!

Please, let us know how things go for your grandbaby!!

 
Old 02-26-2006, 05:06 PM   #4
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Re: Am I Overly Concerned? Please Help

Thank you so much for your replies! Yes, I had heard of Mosaic DS and did a little research on that as well. Mostly because she didn't seem to have any of the physical characteristics of regular DS children. My daughter is calling tomorrow for an appointment with her pediatrician. When she talked to him on the phone on Friday he told her that she would not be leaving his office unless he was fully satisfied with the baby's condition. I'll let everyone know what the doc says this week. Thanks again! KathyMac

 
Old 02-28-2006, 08:40 AM   #5
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Re: Am I Overly Concerned? Please Help

Hi Kathy,
My daughter has DS and didn't have overtly apparant characteristics at birth. None of the doctors and nurses caught it either, my husband actually asked them what they thought because we had a couple soft markers for DS. She doesn't have mosaic though, she has trisomy 21. Her tongue protrudes due to low muscle tone in her jaw, which could just be the case in your grandchild's, it doesn't necessarily mean the baby has DS. All the baby needs to determine if he/she has DS is a blood test. It takes two weeks to get results, but your questions will be answered simply with that. If the pediatrician doesn't suggest that, have your daughter ask for it.

 
Old 03-21-2006, 02:36 PM   #6
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Re: Am I Overly Concerned? Please Help

hi everyone i finally feel brave enough to join in. ihave been reading the messages this past few months. They have brought me comfort and reassurance as my son was born last april and was diagnosed a couple of days after birth with trisomy 21, only because I was concerned about his feet, apart from that it is hardly noticeable that he has downs as the traits are quite mild it like looking at a typical baby.He is very alert and does what any typical baby does.He is age apropriate with all his milestones,he has just mastered hi crawling to perfection but then again his 2 sisters never crawled and they are "normal". Anthony will be one next month and we feel blessed.

 
Old 03-21-2006, 02:39 PM   #7
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Re: Am I Overly Concerned? Please Help

Quote:
Originally Posted by thea
hi everyone i finally feel brave enough to join in. ihave been reading the messages this past few months. They have brought me comfort and reassurance as my son was born last april and was diagnosed a couple of days after birth with trisomy 21, only because I was concerned about his feet, apart from that it is hardly noticeable that he has downs as the traits are quite mild it like looking at a typical baby.He is very alert and does what any typical baby does.He is age apropriate with all his milestones,he has just mastered hi crawling to perfection but then again his 2 sisters never crawled and they are "normal". Anthony will be one next month and we feel blessed.

 
Old 03-21-2006, 02:42 PM   #8
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Re: Am I Overly Concerned? Please Help

Welcome Thea!!

 
Old 03-22-2006, 05:33 AM   #9
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Re: Am I Overly Concerned? Please Help

Hello everyone! I'm checking back in to tell you that my daughter took her baby to the pediatrician to be checked for DS after I had urged her to pay attention to her tongue thrusting. The doctor looked the baby over from head to toe, had another pediatrician come in and look as well, and then said the baby did not have any form of DS. Of course we are overjoyed and relieved, but I'm still not feeling secure about the outcome because they didn't do any bloodwork, etc. Is it possible to rule out DS just by looking at the baby? My daughter said they looked at the baby's feet for a larger than normal space between her big toe and second toe; looked at her palms for a line of some sort; looked at her ears; looked at her eye shape and bridge of her nose. They did agree that she is thrusting her tongue and couldn't give an explanation for that other than "perhaps she's just exploring with her tongue". I think that's silly...every picture that I have of her from the day she was born until today shows her with her tongue outside of her mouth!! Oh well, I'll accept the news and be happy. Would any of you have kept pressing for further testing to include a blood test? Thanks so much for all of the support and information that I've received from this board and all its members! You guys are true angels! KathyMac

 
Old 03-22-2006, 08:43 AM   #10
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Re: Am I Overly Concerned? Please Help

Welcome Thea!

Hi Kathy,

All I can suggest is to do whatever you're comfortable with. You could wait it out, and see if there are any other concerns, and if you don't see any, perhaps the tongue thrusting is only low jaw muscle tone. Doing a physical exam, as the doctors have done, cannot COMPLETELY determine whether the child has DS or not. They were just checking for physical characteristics. Some children may have DS and have very few physical characteristics. (such as my daughter). Your daughter always has the option of telling the doctor that she wants a blood test done to confirm the concerns you both may have.

And if either of you are concerned about the tongue, you may want to seek a speech pathologist out via your county or on your own to determine if it is low muscle tone. They helped my daughter out a huge deal!

 
Old 03-29-2006, 06:40 PM   #11
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Re: Am I Overly Concerned? Please Help

hi,
when my daughter was born I requested to have the genetic test done because I wanted to make sure she was fine, she was born very healthy and with no obvious markers. (while pregnant I was told that there was a chance for DS and my husband and I declined the amnio) the attending pediatrician told me that I was being paranoid and that I was blessed with a perfectly healthy child- he then call me three weeks later and told me OVER the phone that she tested positive for DS. If I had followed that doctors advice it probably would have taken me longer to find out my daugther's condition, probably when she did not reach a milestone. She sat and crawled on time but she did not walk until she was 2 years old, she is a very healthy and happy toddler who loves to get in trouble all the time. Not all pediatricians are trained or exposed to Down syndrome, you need to find a pediatrician with experience and who is also willing to listen to your concerns, a blood test can make you and your daugther feel better. Good luck

 
Old 04-05-2006, 05:45 PM   #12
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Re: Am I Overly Concerned? Please Help

The same happened here. When I was preg. our test came back as possible downs. We chose not to test. When my son was born we had the testing before we left the hospital. His doctor told us that he very serious doughted that he had ds. When my son was 12 days old we went in for his checkup and our ped. told us he was positive for ds. Our sons ped. almost fell on the floor.

My son had no crease in hand, pinkey finger was fine, no misshapped nipples, No tounge hanging out, no low mussle tone. The only thing he has is the space between his 1st and second toe but his dad has the same thing.

My son has no delays in milestones. He is 5 months and rolls over, sets up with little assistance, holds is bottle, eating ceceral now, He is 50% on growth and hight chart( regular chart) 95% on down's chart. If it had not have been for the odd blood test while I was preg. who know's when or if we would of have found out.

Just to add a little hope. My friend Barbara from North Carolina has a daughter whom is now 25 years old. Jade was born with downs. Jade graduated from school with regular class with a c avarage. He got her drivers lic. at 17 Joined the army at 18 and got married at 21, now he attends college and has a c average. Barbara told me that she never let Jade use he handicap as an excuse.

Betty B
Virginia

 
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