16 months SMA Type I under Sodium Phenylbutyrate

November 17, 2007

Hi Everybody!

I haven’t written for a while now but I am sure following up the discussions by

reading the messages. As you might or might not remember I have a beautiful baby

daughter (Catarina) with SMA Type I. After a lot of thinking we decided with the

doctors to start her on Sodium Phenylbutyrate (PBA) 2 weeks ago. (1 week on and

1 week out) She is being closely monitored and I thought that some of you might

have an interest in knowing the outcome.

It is still too early to say anything or give any impressions but “stating

facts” is always possible and we do have facts to state!

First there is no side effect for the moment, her blood exams are still all

normal and very similar to the ones performed before starting PBA. The sats %

remain the same however the heart beat increased a little bit on the week she

was on PBA. Nothing absurd but she would go to sleep (with BiPap/nasal mask) 1

or 1 and half hours earlier than regular time. This week she came back to normal

heart rates and hours of BiPap (around 10 or 11 per day).

Something that I noticed and that actually made me very excited is that when

laying on her back, we’d pull her legs up, bending her knees with the feet on

the floor/bed and both legs would fall to the sides … and since last Wednesday

(coincidence or not) she can hold her legs in the position for a long time.

Besides that she did loose the ability to lift her forearm a while ago, just

moving the hands, and today she actually lifted her right forearm to give me the

hand (can’t tell how happy I was and that’s why I decided to write!)

She is a very smiley girl and love making noises (da-da-da, ta-ta-ta,

doom-doom-doom) and I really hope to hear a “ma-ma” sometime although I realize

that the letter M is harder than the letter D as she has to have more strength

to press the lips together.

She will start the second cycle again on Monday and the idea is do it for 7

cycles to check proper results however if any of you would like to see an update

during this time, please let me know and I´ll be more than happy to share.

Iz (mom to Catarina “KittyCat” – 16 months – SMA Type I)

________________________________________________________________________________\

____

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Text or chat with friends inside . See how.

http://overview.mail./

November 17, 2007

where yoy from?

Quoting Izabel Kropsch <ikropsch@...>:

> Hi Everybody!

>

> I haven’t written for a while now but I am sure following up the

> discussions by reading the messages. As you might or might not

> remember I have a beautiful baby daughter (Catarina) with SMA Type

> I. After a lot of thinking we decided with the doctors to start her

> on Sodium Phenylbutyrate (PBA) 2 weeks ago. (1 week on and 1 week

> out) She is being closely monitored and I thought that some of you

> might have an interest in knowing the outcome.

>

> It is still too early to say anything or give any impressions but

> “stating facts” is always possible and we do have facts to state!

>

> First there is no side effect for the moment, her blood exams are

> still all normal and very similar to the ones performed before

> starting PBA. The sats % remain the same however the heart beat

> increased a little bit on the week she was on PBA. Nothing absurd

> but she would go to sleep (with BiPap/nasal mask) 1 or 1 and half

> hours earlier than regular time. This week she came back to normal

> heart rates and hours of BiPap (around 10 or 11 per day).

>

> Something that I noticed and that actually made me very excited is

> that when laying on her back, we’d pull her legs up, bending her

> knees with the feet on the floor/bed and both legs would fall to the

> sides … and since last Wednesday (coincidence or not) she can hold

> her legs in the position for a long time. Besides that she did loose

> the ability to lift her forearm a while ago, just moving the hands,

> and today she actually lifted her right forearm to give me the hand

> (can’t tell how happy I was and that’s why I decided to write!)

>

> She is a very smiley girl and love making noises (da-da-da,

> ta-ta-ta, doom-doom-doom) and I really hope to hear a “ma-ma”

> sometime although I realize that the letter M is harder than the

> letter D as she has to have more strength to press the lips together.

>

> She will start the second cycle again on Monday and the idea is do

> it for 7 cycles to check proper results however if any of you would

> like to see an update during this time, please let me know and I´ll

> be more than happy to share.

>

> Iz (mom to Catarina “KittyCat” – 16 months – SMA Type I)

>

________________________________________________________________________________\

____

> Be a better pen pal.

> Text or chat with friends inside . See how.

> http://overview.mail./

>

November 17, 2007

I am very hopeful for some positive effects of PBA in your child. I

would be interested in hearing your updates.

--- , Izabel Kropsch <ikropsch@...> wrote:

>

> Hi Everybody!

>

> I haven't written for a while now but I am sure following up the

discussions by reading the messages. As you might or might not

remember I have a beautiful baby daughter (Catarina) with SMA Type I.

After a lot of thinking we decided with the doctors to start her on

Sodium Phenylbutyrate (PBA) 2 weeks ago. (1 week on and 1 week out)

She is being closely monitored and I thought that some of you might

have an interest in knowing the outcome.

>

> It is still too early to say anything or give any impressions but

" stating facts " is always possible and we do have facts to state!

>

> First there is no side effect for the moment, her blood exams are

still all normal and very similar to the ones performed before

starting PBA. The sats % remain the same however the heart beat

increased a little bit on the week she was on PBA. Nothing absurd but

she would go to sleep (with BiPap/nasal mask) 1 or 1 and half hours

earlier than regular time. This week she came back to normal heart

rates and hours of BiPap (around 10 or 11 per day).

>

> Something that I noticed and that actually made me very excited is

that when laying on her back, we'd pull her legs up, bending her knees

with the feet on the floor/bed and both legs would fall to the sides …

and since last Wednesday (coincidence or not) she can hold her legs in

the position for a long time. Besides that she did loose the ability

to lift her forearm a while ago, just moving the hands, and today she

actually lifted her right forearm to give me the hand (can't tell how

happy I was and that's why I decided to write!)

>

> She is a very smiley girl and love making noises (da-da-da,

ta-ta-ta, doom-doom-doom) and I really hope to hear a " ma-ma " sometime

although I realize that the letter M is harder than the letter D as

she has to have more strength to press the lips together.

>

> She will start the second cycle again on Monday and the idea is do

it for 7 cycles to check proper results however if any of you would

like to see an update during this time, please let me know and I´ll be

more than happy to share.

>

> Iz (mom to Catarina " KittyCat " – 16 months – SMA Type I)

>

________________________________________________________________________________\

____

> Be a better pen pal.

> Text or chat with friends inside . See how.

http://overview.mail./

>

November 17, 2007

Oi Felipe - Sou do Rio de Janeiro, Brasil!

Re: 16 months SMA Type I under Sodium Phenylbutyrate

where yoy from?

Quoting Izabel Kropsch <ikropsch (DOT) com.br>: