Guestbook
Sandie Lindemann
Tuesday, 10 August 2010 13:24
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My daughter Kirsten turned 19 on the 7th August. She had bi-femoral osteotomies when she was 7 it was successful but very painful. You need to make sure you have a good surgeon who will provide suitable post-op pain relief. Kirsten needed valium because she was spasming inside the plaster which caused an ulcer on her heal.
Nicole
Monday, 02 August 2010 17:01
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surgery or no surgery??
Tucker is 5 yrs. old and has been diagnosed with AGS. He is 23 lbs. and eating soley by mouth. Although it take a lot of time it is something he enjoys doing. Recently his Orthopedic doctor is suggesting he have a femoral and pelvic Osteotomy done. This is a very invasive surgery and will put him through a lot of stress. I know Tucker will never walk or sit up so this surgery is strictly for pain management and for his ability to put weight on his legs in the stander, sit properly in wheelchair etc.. I do believe he has some pain, but not enough to be concerning right now. Have any of you had to make this choice to do or not to do major surgery??? Plese help I am very confused !
Guest
Monday, 29 March 2010 09:24
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catherine bowers
hi our daughter was born in november 2009 she was diagnosed in january 2010 with aicardi goutieres syndrome we are waiting to see geneticist.>> Can any one help with their experiences we feel so isolated and no one really understands not even the doctors really know anything about it. we have had a bad few weeks mollie asperated into her lungs which caused pneumonia and she ended up in intensive care on ventilator for 9 days - she is now on nasal oxygen and out of intensive care she has had an NJ tube fitted yesterday so we have to see how she gets on. THey thought she was having seizures/fits in the last few days they gave her an eeg but it showed that she did not have any seizure/fit which is good - can you help are these spasms she is having due to severe reflux or something else?? We live in England. Any advice would help us.
Guest
Sunday, 28 March 2010 21:59
We stopped giving vaccines when Jack was 12 and Ben was 8, because we noticed that they would have a neurological reaction about 48 hours after the vaccine. This reaction became more severe and more noticeable as they got older. If you give a vaccine, watch them very carefully for sleepiness, irritability, or mild fever, especially 24 to 48 hours later. If this happens, then the vaccine is causing brain inflammation. Donna Miller
Mustafa
Thursday, 25 March 2010 23:36
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H1N1
Dear Karol, we have not do the H1N1 vaccination on our son. But I know some families they have done the vaccination without any problems. Best wishes Mustafa
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