Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 I don't know the name of what it's called but I do know that Trisha has a weak (what I call joint) in her neck. It's not very sever but we have to be careful with what she does. She isn't supposed to do roll overs without someone supporting her neck and back. They don't want her doing headstands etc. She has very loose hips and knees (well actually she is loose all over) It really causes me pain when I watch her walk, it looks like her ankles turn in and it appears as if she is walking on the ankle itself. The doctor has assured me she isn't but that her ankles indeed are turned in profoundly. They put her in ankle braces but it didn't help and caused other problems like broken down tissue so he took her out of them. He said it didn't make sense to cause her more pain and especially if it wasn't helping. They are now watching her ankles. We did see improvement in her hips after her knee surgery which the doctor explained might have been because once they got the knee lined up it helped the hip to fall into place as well. (I can't remember who was talking about thier child popping their hips in and out but I know what you mean, Trisha did it all the time and if I picked her up and wasn't careful they would pop out. Try changing her and you could feel them pop). Trisha also has low functioning thyroid, we found out about her thyroid last april. they are still trying to get her medicine adjusted. Trisha is also a mouther and I would like to caution everyone to have your children's lead level tested at least yearly if not every 6 months. Trisha had just turned 8 when we found out she had lead poisoning. She got it from mouthing the blinds in the apartment we live in. There was enough lead in the blinds to make her lead level go up to 30. Had it gone to 34 they would have put her in the hospital. We are still dealing with the side effects of the lead poisoning. Her lead level is now down to 7 but she will always have some lead in her system and they don't know the long term effects. I am sorry this is so long. Oh, Trisha is also hearing and vision impaired so we have her hearing and vision checked every 6 months. She has ASD so she has an echo gram done every year to monitor her heart. But thank God (and I really mean thank you God) the hole is slowly closing up and so far we don't have to have surgery to correct it. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 In a message dated 1/29/01 5:01:49 PM Eastern Standard Time, Ltb3105@... writes: << After 's thyroid scare, I would definitely check for thyroid at least 3-4 times a year.....it can change anytime! Eyes and ears are a given yearly and if the child is on any med's you will also want blood tests done routinely to check on liver and kidney levels, needless to say, thyroid too! >> Thanks . I'm making my list of things to ask the doc for at his check-up. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2001 Report Share Posted January 29, 2001 ...that neck thing you are talking about is atlanto-coaxial instability which is a weakness or instability of the top 2 bones of the spinal column.. according to a book i have about 9--20% of kids with Down Syndrome have it. my son Nick has had a couple of xrays both showing that he is borderline for having that diagnosis. cheri Re: Important Tests In a message dated 1/28/01 9:43:50 PM Pacific Standard Time, writes: > . Are there certain > things that should be done on a routine basis? > Gail > > > Gail, After 's thyroid scare, I would definitely check for thyroid at least 3-4 times a year.....it can change anytime! Eyes and ears are a given yearly and if the child is on any med's you will also want blood tests done routinely to check on liver and kidney levels, needless to say, thyroid too! If the child never had a heart prob, I wouldn't go to the expense of having one more than every two-three years just to make sure. Last year, had a neck, spine and hip X-ray....I don't know the name of the condition, besides hip dysplasia, but it's something to do with the neck/spine......the school nurse pointed it out to me that some Down's kids can't even participate in PE unless they are checked for this.....Joan, anyone, know what the condition is?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 In a message dated 1/29/01 5:00:20 PM Eastern Standard Time, Ltb3105@... writes: << neck, spine and hip X-ray....I don't know the name of the condition, besides hip dysplasia, but it's something to do with the neck/spine......the school nurse pointed it out to me that some Down's kids can't even participate in PE unless they are checked for this.....Joan, anyone, know what the condition is?? >> , It is called atlanto-axial instability I believe. I am not an expert on anatomy but I believe it is slipping of a cervical vertebrae from the base of the skull. I have known one child with this condidion and he needed to have a fusion I believe...when they discovered it is was very severe. The only thing I have seen it screened for is special olympics and horseback riding....not for regular PE classes at school... Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 In a message dated 1/29/01 11:38:56 PM Eastern Standard Time, smilinggail@... writes: << Thanks . I'm making my list of things to ask the doc for at his check-up. Gail >> Gail, Just print up the DS medical check list from www.ds-health.com and bring it to your ped. Maddie's medical file has one in there and my doc uses it religiously. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 In a message dated 1/30/01 2:19:01 PM Eastern Standard Time, duffey48@... writes: << Gail, Just print up the DS medical check list from www.ds-health.com and bring it to your ped. Maddie's medical file has one in there and my doc uses it religiously. Donna >> Joan sent me that site, but I didn't see that there! Hmmmmmm I read all the other stuff though! Good site. Thanks Donna Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 In a message dated 1/30/01 10:25:29 PM Eastern Standard Time, smilinggail@... writes: << Joan sent me that site, but I didn't see that there! Hmmmmmm I read all the other stuff though! Good site. Thanks Donna Gail >> Gail, It's down a bit on the right hand side. It says Health Care Guidelines for DS. Click on that and you can print it up. As the new parent contact person in Philly, I give one to every family that has a new baby with DS. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 In a message dated 1/31/01 8:54:11 AM Eastern Standard Time, duffey48@... writes: << Gail, It's down a bit on the right hand side. It says Health Care Guidelines for DS. Click on that and you can print it up. As the new parent contact person in Philly, I give one to every family that has a new baby with DS. Donna >> Thanks Donna, got it and the growth charts too! I am armed!!!! LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 In a message dated 1/31/01 9:13:57 AM Eastern Standard Time, jmedlen@... writes: << GAil: The guidlines in written form are here: http://www.denison.edu/dsq/health99.shtml There is a record sheet to track test frequency here: http://www.denison.edu/dsq/recordsheet.shtml >> Joan, Thanks. I am absolutely shocked at how many things have not been done for Seth! That doc has one mad mama to deal with. Actually, I will be kind and give him the charts and try to educate that old codger! LOL Now where in the ds manual does it say that parents have to educate the medical community? LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 At 08:44 AM 1/31/01 EST, you wrote: >Gail, > It's down a bit on the right hand side. It says Health Care Guidelines >for DS. Click on that and you can print it up. As the new parent contact >person in Philly, I give one to every family that has a new baby with DS. GAil: The guidlines in written form are here: http://www.denison.edu/dsq/health99.shtml There is a record sheet to track test frequency here: http://www.denison.edu/dsq/recordsheet.shtml j Quote Link to comment Share on other sites More sharing options...
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