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Forum: Children with Special Needs

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  #1  
January 6th, 2007, 01:03 PM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Lindsay, I read where you're giving Sydney this supplement and also read about it on the micro/yahoo group. I started wondering if you have noticed head growth as that mom had mentioned. How is Sydney?
Hope all is well, Patricia
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  #2  
January 9th, 2007, 06:37 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Lindsay, I read where you're giving Sydney this supplement and also read about it on the micro/yahoo group. I started wondering if you have noticed head growth as that mom had mentioned. How is Sydney?
Hope all is well, Patricia[/b]
Hey Trisha! Sorry I didn't get back to you sooner on this! We are getting ready to go to Cancun on Saturday for a week! I know, but try not to fell sorry for me, LOl!

Okay, as you have seen, this B12 discussion is pretty broad. Sydney has been getting B12 injections for oh, about 7 months. Her MMA levels were elevated the first time the geneticist saw and tested her when she was 4 months old. Now, with the injections, they are in the normal range again. They test her every time we go, and in the begining, she was getting a shot everyday. Now, it is every other day, or every 2-3 days. Her levels are in the normal range now which is great!

She gets hydrocobalamine which must be specifically compounded in our local Children's Hosptial. Our local pharmacy's can't make it. Her head growth is nothing to write home about. It has grown a couple of cm's since starting the B12, but not what we would want to see from the injections.

You are welcome to ask me any more questions, I would love to be of any help I can be. If you want to talk on the phone, we can talk in the evenings or weekends as I have free minutes then on my cell phone.

When you are ready to introduce yourself on the micro group, let me know. Everyone there is so great. You may even find someone who know a bit more about your daughter's condition. It is worth a shot.

HUGS!!!!!!!!!!!!!!
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  #3  
January 11th, 2007, 06:14 PM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Quote:
Quote:
Lindsay, I read where you're giving Sydney this supplement and also read about it on the micro/yahoo group. I started wondering if you have noticed head growth as that mom had mentioned. How is Sydney?
Hope all is well, Patricia[/b]
Hey Trisha! Sorry I didn't get back to you sooner on this! We are getting ready to go to Cancun on Saturday for a week! I know, but try not to fell sorry for me, LOl!

Okay, as you have seen, this B12 discussion is pretty broad. Sydney has been getting B12 injections for oh, about 7 months. Her MMA levels were elevated the first time the geneticist saw and tested her when she was 4 months old. Now, with the injections, they are in the normal range again. They test her every time we go, and in the begining, she was getting a shot everyday. Now, it is every other day, or every 2-3 days. Her levels are in the normal range now which is great!

She gets hydrocobalamine which must be specifically compounded in our local Children's Hosptial. Our local pharmacy's can't make it. Her head growth is nothing to write home about. It has grown a couple of cm's since starting the B12, but not what we would want to see from the injections.

You are welcome to ask me any more questions, I would love to be of any help I can be. If you want to talk on the phone, we can talk in the evenings or weekends as I have free minutes then on my cell phone.

When you are ready to introduce yourself on the micro group, let me know. Everyone there is so great. You may even find someone who know a bit more about your daughter's condition. It is worth a shot.

HUGS!!!!!!!!!!!!!!
[/b]
I'm still in the watchful waiting stage with the yahoo group, better known as lurking (hate that word). I have been thinking about asking the older members of her syndrome group if anyone has tried B-12, but I'm afraid. Most of them have already lost their children and really feel no hope about anything helping. It's sad. I'm still hopeful that I can do things to improve what life she will live and secretly, in some small part of my heart, I'm still hopeful there will be a cure.
{{Hugs}}
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