Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Bonnie wrote (about Patty): > I never noticed > the degree she slouched before. She looked so rude. I told her to sit up > many times. She did but would slouch again. When we got home I talked to > her about it. She said she can't sit straight because it hurts her bottom. > Just to make sure for the first time in years I looked at her bottom, or > the end of her spine, and that sinus thing is still there but looks bruised. > She sits down with force sometimes and I am sure that is how she did it. I > looked in the manual and don't see anything. Is this " sinus " just a Patty > thing? It is absolutely nothing major and never gave her a problem in her > life, I was just wondering. Do other children have this? > Kenny also has a hard time sitting straight. He will also wiggle and slouch, scoot and even lie down in a chair instead of sitting straight. When asked about it, he just says it is not comfortable and his butt sometimes hurts (I bet it's his sacral area actually!). this happens whether it is a church pew or a a padded chair. I really must inverstigate further. Friends in CHARGE, Marilyn Ken (10), (7, CHARGE), and Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Our Cassie also has a dimple on the bottom of her spine and it is crooked. We also found out last summer that she has spina bifida occulta- hope I spelled that right. It means that it is closed, but the 5th and 6th vertebrae are not fused together the way that they should be. Cheryl ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Jan, Thank you. Patty also has very flat feet and walks on the inside of them. She never sits on the floor anymore because she says it's too hard for her to get up. When she was a baby she would W sit which was bad for her hips. She is still hypotonic in many places, including her hips. We also wonder what took them so long to diagnose Patty correctly. To make a long story short they said she had Fetal Hydantoin Syndrome. Each doctor never looked at all that Patty had, just their area. When she was a baby she had the apnea, eating issues, diagnosed the colobomas, subumucus cleft coanal atresia, and hearing impairments. She was also so very sick. I take dialantin for epilepsy and they said that was what caused her problems. As time passed other things arose, like her kidneys, scoliosis and tourettes, and still no diagnosis. I thought I did it to her. Then when she was 13 she had a problem with her left ear and noticed her shoulder. We went to this orthopedic doctor. That is where they diagnosed the Klippel Feil. This time I went and researched and went to different doctors, in New York, Boston.... I also went on this computer. Eventually I ended up at our own hospitals genetic area. We only had to walk in. They looked at her and said CHARGE. They asked me questions like, does she have colobomas, yes, coanal atresia, yes,...yes, yes , yes. It was good because we were told she had a murmur. Well, they finally looked into it and she had a PDA. They said, oh, it was small. Of course when they went in they say, " It was bigger than we thought. " That was almost two years ago and our lives have changed. We no longer let doctors look at one aspect of her. We also have found such support and understanding. Especially in understanding her disabilities. Patty is said to be mild by many, but they did not live with her at the beginning. She did not move, was failure to thrive, milk came out her nose, was always sick with things like phneumonia. She was not supposed to walk or talk or be independent in any way. I still can see that doctors face who told me that when she was 4 months old. That made me mad, I knew this baby understood much but couldn't show us. It has been a long road but she is accomplishing things they said she wouldn't. There are still people, educators, who say can't to Patty, but she shows them wrong so far. She is disabled and has many limitations. She will always have problems in many areas but what a wonder child. She reaches for the stars. It is kind of good we did not have the diagnosis because I don't know if we would have pushed so hard. Then again, maybe we would have understood her and made things not so frustrating for her. We are sure glad we have it now though. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Hi Bonnie Could it be a " Pilonedal Sinus " ? My ex husband had to have surgery on his, ( not sure of the spelling, and it was 25 years ago) before the Airforce would accept him, he had the surgery which left him with an almost circular scar on his tailbone. They said someting about it getting infected if he was in the jungle. I just checked Larry's bottom (he let me) and he has a crooked butt crack, he also has a dark patch of skin at the base of his spine about the size of a tennis ball. Somebody who was working on him told us it was a " Mongol mark " indicating he has Asian blood in him. We haven't any Asian relations as far as I can find out. Larry also has Spina Bifida Occulta, which gives him no problem, apparently it is quite common. When Larry was tiny he had a paralasys down the left side of his body and at four and a half he walked on the inside of his left foot, he was always stumbling, he also had the flattest feet you ever saw. I took him to have orthotics fitted, it was the best thing I ever did, pretty soon he didn't stumble and was walking on his feet evenly. He still has a Pronation (rolls his feet in) so will always have to wear orthotics, they also help with his posture and his round shoulders. Does Patty " squat " to watch T.V. instead of sitting on a chair ? This is a constant battle with Larry, I try to discourage him as it upsets his posture. When Larry was 7 we noticed he had a mild Scoliosis, so I started taking him to Chiropractor which has worked wonders. Bonnie I am curious why did it take the Doctors so long to diagnose Patty ? Larry is 16 and was diagnosed when he was four. Jan Hewitson Mum to Belinda 18 and Larry 16 Mandurah, Perth, Western Australia Re: Another little question > Hi, > I have talked to all of you about Patty's knees but I have another > question I have not spoken to the doctor about. I will this coming week > because Patty is in more pain now in her knees. But I wanted to hear from > all of you. When Patty was born she had a dimple, or a tiny hole, on the end > of her tail bone. I remember questioning them about it and they said it was > nothing, just a sinus (?) that would give her no problem. It never went away > and they were right, it gave her no problem. The other day we went to an > induction for her sister and she sat slouched in her chair. I never noticed > the degree she slouched before. She looked so rude. I told her to sit up > many times. She did but would slouch again. When we got home I talked to > her about it. She said she can't sit straight because it hurts her bottom. > Just to make sure for the first time in years I looked at her bottom, or > the end of her spine, and that sinus thing is still there but looks bruised. > She sits down with force sometimes and I am sure that is how she did it. I > looked in the manual and don't see anything. Is this " sinus " just a Patty > thing? It is absolutely nothing major and never gave her a problem in her > life, I was just wondering. Do other children have this? > > Bonnie, Mom to Patty CHARGE 15, Kris 17 and wife to > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/1/_/22564/_/954672518/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 I think that was the word Jillian's PT called the dimple on the baby I watch. I remember it started with a " P " ...(pilonedal sinus ) Foley Re: Another little question > > > > Hi, > > I have talked to all of you about Patty's knees but I have another > > question I have not spoken to the doctor about. I will this coming week > > because Patty is in more pain now in her knees. But I wanted to hear from > > all of you. When Patty was born she had a dimple, or a tiny hole, on the > end > > of her tail bone. I remember questioning them about it and they said it > was > > nothing, just a sinus (?) that would give her no problem. It never went > away > > and they were right, it gave her no problem. The other day we went to an > > induction for her sister and she sat slouched in her chair. I never > noticed > > the degree she slouched before. She looked so rude. I told her to sit up > > many times. She did but would slouch again. When we got home I talked to > > her about it. She said she can't sit straight because it hurts her > bottom. > > Just to make sure for the first time in years I looked at her bottom, > or > > the end of her spine, and that sinus thing is still there but looks > bruised. > > She sits down with force sometimes and I am sure that is how she did it. > I > > looked in the manual and don't see anything. Is this " sinus " just a Patty > > thing? It is absolutely nothing major and never gave her a problem in her > > life, I was just wondering. Do other children have this? > > > > Bonnie, Mom to Patty CHARGE 15, Kris 17 and wife to > > > > ------------------------------------------------------------------------ > > LOW RATE, NO WAIT! > > Get a NextCard Visa, in 30 seconds! Get rates > > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > http://click./1/2122/1/_/22564/_/954672518/ > > ------------------------------------------------------------------------ > > > > For information about the CHARGE Syndrome > > Foundation or to become a member please > > contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/1/_/22564/_/954838146/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
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