| Question |
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Author |
Replies |
Last Post |
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Thu Feb 12, 2004 9:05 pm |
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1 |
| Thu Feb 19, 2004 12:11 pm |
| Carol |
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| I am sma3 (i think as had genetic test but did not show gene??) and my 4 year old daughter is now showing signs of sma3 but seems to be stronger than i was at her age. Is anyone sma with sma child? I am used to dealing with my sma may need advice on dealing with childs. Anyone going through same.ie just realising child can not get up from floor difficulty running can't climb stairs etc any advice welcome |
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Sun Feb 8, 2004 7:46 am |
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2 |
| Tue Feb 24, 2004 7:39 pm |
| Peter H |
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I have all the symptoms of this illness, yet my doctors say I have fibromyalgia. I actaully can see muscle deterioration. A doctor in AZ 2 yrs. ago saw it on one hand, I came home to my doctor and they can't understand what I am telling them.
How can I get them to look at this and get their attention. It is also apparent in one leg, and one arm. I can see it myself.
I have the tingling and everything to go with it, and I have spinal problems shown on x-rays from chiropractor, as well as my 2 bottom vertebrea were fused when I was born that way. |
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Fri Aug 22, 2003 2:50 am |
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2 |
| Mon Sep 3, 2007 9:03 pm |
| abigail |
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| My 2 month old son was just diagnosed with SMA 1 this past Monday. My emotions have been running rampid. I keep telling myself I have to remain positive and try to do what I can to fight this. I am just not ready to give him up. While I try to stay positive, inside I feel like I'm mentally and emotionally falling apart. Will it get better and what can I do to help myself to stay strong? I have a 3 year old daughter and a husband to consider and I don't want to drive them away. |
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Tue Jun 10, 2003 11:43 am |
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4 |
| Tue Feb 28, 2006 5:36 am |
| Gaylene |
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| Three months ago our 17 month old little girl was tested, among other things, for SMA. The results came back negative. She is totally imobile although she can sit up. Not able to roll or sit herself up, let alone crawl, puul her self up or walk. She wont even weight bare. I was wondering if anyone else had a misdiagnoses before finding out their child had SMA. When i read about the condition its as though it was written about our little girl. Any advice would be very gratefully received. |
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Mon Jun 9, 2003 10:12 am |
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6 |
| Sat Mar 12, 2005 8:13 pm |
| Jean |
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| I have a son of 20 months with SMA II. My husband and I had always planned on having more children but now are unsure. Has anyone used IVF to become pregnant and ensure their next child doesnt have SMA? Are we underestimating the difficulties with having another child? |
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Sun Mar 16, 2003 4:07 am |
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5 |
| Thu Jun 10, 2004 10:07 am |
| sibsey |
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| Our 20 year old daughter has just been told that our beautiful grandaughter has sma type one and to not hold out to much hope for a lot longer, that she may not see her first birthday We are living a death sentence. She is now 6 months old and just been diagnosed. We are trying our best as a family to cope, but at the momemt we are grieving for a child that has not left us. Her arms and legs are showing lots of signs of movement and she is eating so well. Is there a miracle out there that is not the norm. We are trying desperatly to stimulate and make things good for our liitle angel. When the illness starts to kick in how long have we got her at home? Is it possible to keep her in an enviroment of love. Is there anyone who has experienced this that could help my 20 year old baby just feel a little hope for her baby |
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Fri Jan 17, 2003 6:15 pm |
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5 |
| Thu Jun 10, 2004 10:02 am |
| sibsey |
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| my grandson steven was diagnosed with sma at approx 1 yr old. he is now 5yrs old i believe he has sma1 they say he's doing good. he'never walked or any of that yes he's beautiful and very smart but he's now got soliosis of the spine and other things. my question is i never hear about children like him evreything i find is that the child died. does anyone have any silalar situation?? Teri |
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