Re: newbie/

November 7, 2002

Hi, have you had FREE T3 and FREE T4 tests done? When people don't feel

well on Armour, that means to me that they need other hormones, like

cortisol, DHEA, estrogen, progesterone etc. I think it is better to find

what else is needed rather than back off on T3. How old are you? I am

not sure which is the best kind of adrenal test. I did a " spit test " for

adrenals when I was feeling my worst and it seemed to be accurate. Do a

search for Great Smokies Lab on Google. I think I have needed thyroid all

my life but got it for the first time at age 52, and the first year was pure

hell, but not as bad as the preceding 52. If you need cortisol you will

absolutely have to have it to heal. Try cod liver oil, I hear good things

about coconut oil too. Fats are important for hormone production. Also B

vitamins help a lot. I had severe anxiety too. Now I never have it,

except when I eat too much wheat. You might test for allergies!

Gracia

> Gracia,

> Thanks for the input. DHEA level was checked with my most recent blood

> work, and it was 158 ug/dL, with the normal range for my age group being

> 65-380 (according to this particular lab). Cortisol levels have not been

> checked though...is that done with blood work or the " spit kits " that I

> have heard of? How do the DHEA levels sound to you? My doctor seemed to

> think that they were fine, but I am curious what others think.

>

> I guess my main concern with the Armour is partly that the total amount

> of thyroid is too high, but that the ratio of of T3 to T4 is wrong for

> me....in other words too much T3. I made a trip to a different doctor

> the other day (my usual doctor is in Paris), and we agreed to try a

> levothroid/cytomel combination with a smaller percentage of T3. I am

> hoping that being able to adjust T3 and T4 independently of each other

> we will be able to fine tune the dosage. In the end, I know that it's a

> question of trial and error...wish that wasn't so.

>

> As for wondering if the original Synthroid dose of 100mcg was a little

> to high, my TSH levels at that dose hovered between 0.7 and 1.0. I know

> that some feel fine at those levels, but I am wondering if I am someone

> that would feel better at a slightly higher level...maybe closer to 2.

> Everybody is different, so again, I guess it's a matter of trial and

> error.

>

> I have a question for anyone out there. One of the thyroid books that I

> have suggests that blood should be drawn 2 to 3 hours after taking

> thyroid medication, but my doctor prefers for the blood to be drawn

> before taking medication. What have you guys been told?

>

> Sorry for the rambling messages, but I am so desperate to figure these

> things out.

>

> Gracia wrote:

>

> >

> > I don't think you are overmedicated on 90 mg of Armour, but you

> > should get

> > your adrenals checked for cortisol and DHEA. Also cod liver oil helps

> > with

> > anxiety and mood.

> > Gracia

> >

> > > Hi all,

> > >

> > > I am new the group, but unfortunately not new to hypothyroidism. I

> > was

> > > diagnosed as hypothyroid at the age of 19 (10 years ago). At the

> > time

> > > of diagnosis my TSH level was 11.4 (not sure about the other

> > levels).

> > > I was started on 100mcg of Synthroid, and was taking that up until a

> >

> > > month and a half ago, when I went to a different dr who put me on 90

> >

> > > mg of Armour.

> > >

> > > I never felt good on the Synthroid. Most of my syptoms have been

> > > emotional...depression and anxiety, with the anxiety worsening over

> > > the years. After having tried several antidepressants over the

> > years,

> > > and still not feeling that great, I was hoping that Armour would do

> > > the trick. At first it seemed that it was. I had moments of feeling

> > > better than I had in years, but also had terrible spells of anxiety,

> >

> > > all within the same day. I felt downright manic. Over the past

> > > month and a half the moments of feeling good have diminished, and

> > the

> > > moments of anxiety have increased.

> > >

> > > The last time I saw my doctor I asked if she thought that the dose

> > > might be too high. Her explanation for the worsening anxiety was

> > that

> > > I am very hypoglycemic. So, I tried eating six meals a day, and,

> > while

> > > I did feel worse if I missed a meal, I didn't feel much better

> > > afetr eating the meals. In fact, I am having enough anxiety that I

> > am

> > > having to force myself to eat.

> > >

> > > What complicates matters is that I have been off antidepressants for

> >

> > > several months now, and am wodering if the downward spiral that I

> > seem

> > > to be in is because I need to be on medication. I hate how syptoms

> > of

> > > thyroid disorder and depression/anxiety overlap!! I also hate that

> > > there are overlapping symtoms for hypothyroidism and

> > > hyperthyroidism...it can make it a little hard to tell what's going

> > > on.

> > >

> > > As for my recent bloodwork, my levels were tested about a week after

> >

> > > starting the armour...much too soon in my opinion... and my TSH was

> > at

> > > 0.258, and T3 and T4 were normal. I had experimented with taking

> > 120mg

> > > of Armour the day before the blood work (BAD idea), so that

> > certainly

> > > contributed to the TSH, but I had not taken my medication that

> > > morning.

> > >

> > > My head hurts from tyring to figure all this out, but I am feeling

> > > like the Armour dose is too high. I also believe that my original

> > dose

> > > of Synthroid was too high, and I am starting to wonder if all the

> > > anxiety that I have had over the years has been in part due to

> > > overmedication.

> > >

> > > Does anyone have any words of wisdom for me. I am feeling pretty

> > > helpless at the moment.

> > >

November 8, 2002

Hi Gracia,

At last check free T4 was 1.27 (0.61-1.76), my free T3 was 3.4 pg/mL

(2.3-4.2), and my TSH at that time was 0.258 uIU/mL (0.350-5.500). But,

when those tests were done I had only been on the Armour for 5 days, and

I had experimented with taking 120mg instead of 90mg the day

before....so I am not sure how much they are worth.

The doctor has tried me on progesterone twice, the first time 50 mg and

the second time 5 mg, and both doses seemed to exacerbate my

irritability...but with everything that has been going on I have a very

hard time differentiating what is causing what.

We did do allergy testing by ELISA, and I am pretty good at avoiding the

foods/chemicals that I reacted to, but admittedly not 100%.

When I see the dr on monday I am going to talk to her about going back

onto an antidepressant, at least for a while. I think that my body

chemistry is totally out of whack right now, and that a little

pharmaceutical support, at least while we try to get these hormones

figured out, could help. I just had to take a two week leave of absence

from work, and I am devestated...I need to be able to function while

these things get figured out

I will check into the Great Smokies lab, and talk to my dr about

cortisol when I see her. Thanks for the advice, and wish me luck.

Gracia wrote:

>

> Hi, have you had FREE T3 and FREE T4 tests done? When people don't

> feel well on Armour, that means to me that they need other hormones,

> like

> cortisol, DHEA, estrogen, progesterone etc. I think it is better to

> find

> what else is needed rather than back off on T3. How old are you? I

> am

> not sure which is the best kind of adrenal test. I did a " spit test "

> for

> adrenals when I was feeling my worst and it seemed to be accurate.

> Do a

> search for Great Smokies Lab on Google. I think I have needed thyroid

> all

> my life but got it for the first time at age 52, and the first year

> was pure

> hell, but not as bad as the preceding 52. If you need cortisol you

> will

> absolutely have to have it to heal. Try cod liver oil, I hear good

> things

> about coconut oil too. Fats are important for hormone production.

> Also B

> vitamins help a lot. I had severe anxiety too. Now I never have

> it,

> except when I eat too much wheat. You might test for allergies!

> Gracia

> > Gracia,

> > Thanks for the input. DHEA level was checked with my most recent

> blood

> > work, and it was 158 ug/dL, with the normal range for my age group

> being

> > 65-380 (according to this particular lab). Cortisol levels have not

> been

> > checked though...is that done with blood work or the " spit kits "

> that I

> > have heard of? How do the DHEA levels sound to you? My doctor seemed

> to

> > think that they were fine, but I am curious what others think.

> >

> > I guess my main concern with the Armour is partly that the total

> amount

> > of thyroid is too high, but that the ratio of of T3 to T4 is wrong

> for

> > me....in other words too much T3. I made a trip to a different

> doctor

> > the other day (my usual doctor is in Paris), and we agreed to try a

> > levothroid/cytomel combination with a smaller percentage of T3. I am

>

> > hoping that being able to adjust T3 and T4 independently of each

> other

> > we will be able to fine tune the dosage. In the end, I know that

> it's a

> > question of trial and error...wish that wasn't so.

> >

> > As for wondering if the original Synthroid dose of 100mcg was a

> little

> > to high, my TSH levels at that dose hovered between 0.7 and 1.0. I

> know

> > that some feel fine at those levels, but I am wondering if I am

> someone

> > that would feel better at a slightly higher level...maybe closer to

> 2.

> > Everybody is different, so again, I guess it's a matter of trial and

>

> > error.

> >

> > I have a question for anyone out there. One of the thyroid books

> that I

> > have suggests that blood should be drawn 2 to 3 hours after taking

> > thyroid medication, but my doctor prefers for the blood to be drawn

> > before taking medication. What have you guys been told?

> >

> > Sorry for the rambling messages, but I am so desperate to figure

> these

> > things out.

> >

> > Gracia wrote:

> >

> > >

> > > I don't think you are overmedicated on 90 mg of Armour, but you

> > > should get

> > > your adrenals checked for cortisol and DHEA. Also cod liver oil

> helps

> > > with

> > > anxiety and mood.

> > > Gracia

> > >

> > > > Hi all,

> > > >

> > > > I am new the group, but unfortunately not new to hypothyroidism.

> I

> > > was

> > > > diagnosed as hypothyroid at the age of 19 (10 years ago). At the

>

> > > time

> > > > of diagnosis my TSH level was 11.4 (not sure about the other

> > > levels).

> > > > I was started on 100mcg of Synthroid, and was taking that up

> until a

> > >

> > > > month and a half ago, when I went to a different dr who put me

> on 90

> > >

> > > > mg of Armour.

> > > >

> > > > I never felt good on the Synthroid. Most of my syptoms have been

>

> > > > emotional...depression and anxiety, with the anxiety worsening

> over

> > > > the years. After having tried several antidepressants over the

> > > years,

> > > > and still not feeling that great, I was hoping that Armour would

> do

> > > > the trick. At first it seemed that it was. I had moments of

> feeling

> > > > better than I had in years, but also had terrible spells of

> anxiety,

> > >

> > > > all within the same day. I felt downright manic. Over the past

> > > > month and a half the moments of feeling good have diminished,

> and

> > > the

> > > > moments of anxiety have increased.

> > > >

> > > > The last time I saw my doctor I asked if she thought that the

> dose

> > > > might be too high. Her explanation for the worsening anxiety was

>

> > > that

> > > > I am very hypoglycemic. So, I tried eating six meals a day, and,

>

> > > while

> > > > I did feel worse if I missed a meal, I didn't feel much better

> > > > afetr eating the meals. In fact, I am having enough anxiety that

> I

> > > am

> > > > having to force myself to eat.

> > > >

> > > > What complicates matters is that I have been off antidepressants

> for

> > >

> > > > several months now, and am wodering if the downward spiral that

> I

> > > seem

> > > > to be in is because I need to be on medication. I hate how

> syptoms

> > > of

> > > > thyroid disorder and depression/anxiety overlap!! I also hate

> that

> > > > there are overlapping symtoms for hypothyroidism and

> > > > hyperthyroidism...it can make it a little hard to tell what's

> going

> > > > on.

> > > >

> > > > As for my recent bloodwork, my levels were tested about a week

> after

> > >

> > > > starting the armour...much too soon in my opinion... and my TSH

> was

> > > at

> > > > 0.258, and T3 and T4 were normal. I had experimented with taking

>

> > > 120mg

> > > > of Armour the day before the blood work (BAD idea), so that

> > > certainly

> > > > contributed to the TSH, but I had not taken my medication that

> > > > morning.

> > > >

> > > > My head hurts from tyring to figure all this out, but I am

> feeling

> > > > like the Armour dose is too high. I also believe that my

> original

> > > dose

> > > > of Synthroid was too high, and I am starting to wonder if all

> the

> > > > anxiety that I have had over the years has been in part due to

> > > > overmedication.

> > > >

> > > > Does anyone have any words of wisdom for me. I am feeling pretty

>

> > > > helpless at the moment.

> > > >

November 8, 2002

Hi , it really sounds like adrenal problem then. Many people with

weak adrenals go through life being treated as psych patients. I meant to

ask you, is your old doc on vacation in Paris or permanently over there? I

am asking for a friend who is very thyroid sick in Paris. She is

desperate for a good doc.

Gracia

> Hi Gracia,

>

> At last check free T4 was 1.27 (0.61-1.76), my free T3 was 3.4 pg/mL

> (2.3-4.2), and my TSH at that time was 0.258 uIU/mL (0.350-5.500). But,

> when those tests were done I had only been on the Armour for 5 days, and

> I had experimented with taking 120mg instead of 90mg the day

> before....so I am not sure how much they are worth.

>

> The doctor has tried me on progesterone twice, the first time 50 mg and

> the second time 5 mg, and both doses seemed to exacerbate my

> irritability...but with everything that has been going on I have a very

> hard time differentiating what is causing what.

>

> We did do allergy testing by ELISA, and I am pretty good at avoiding the

> foods/chemicals that I reacted to, but admittedly not 100%.

>

> When I see the dr on monday I am going to talk to her about going back

> onto an antidepressant, at least for a while. I think that my body

> chemistry is totally out of whack right now, and that a little

> pharmaceutical support, at least while we try to get these hormones

> figured out, could help. I just had to take a two week leave of absence

> from work, and I am devestated...I need to be able to function while

> these things get figured out

>

> I will check into the Great Smokies lab, and talk to my dr about

> cortisol when I see her. Thanks for the advice, and wish me luck.

>

> Gracia wrote:

>

> >

> > Hi, have you had FREE T3 and FREE T4 tests done? When people don't

> > feel well on Armour, that means to me that they need other hormones,

> > like

>

> > cortisol, DHEA, estrogen, progesterone etc. I think it is better to

> > find

> > what else is needed rather than back off on T3. How old are you? I

> > am

> > not sure which is the best kind of adrenal test. I did a " spit test "

> > for

> > adrenals when I was feeling my worst and it seemed to be accurate.

> > Do a

> > search for Great Smokies Lab on Google. I think I have needed thyroid

> > all

> > my life but got it for the first time at age 52, and the first year

> > was pure

> > hell, but not as bad as the preceding 52. If you need cortisol you

> > will

> > absolutely have to have it to heal. Try cod liver oil, I hear good

> > things

> > about coconut oil too. Fats are important for hormone production.

> > Also B

> > vitamins help a lot. I had severe anxiety too. Now I never have

> > it,

> > except when I eat too much wheat. You might test for allergies!

> > Gracia

> > > Gracia,

> > > Thanks for the input. DHEA level was checked with my most recent

> > blood

> > > work, and it was 158 ug/dL, with the normal range for my age group

> > being

> > > 65-380 (according to this particular lab). Cortisol levels have not

> > been

> > > checked though...is that done with blood work or the " spit kits "

> > that I

> > > have heard of? How do the DHEA levels sound to you? My doctor seemed

> > to

> > > think that they were fine, but I am curious what others think.

> > >

> > > I guess my main concern with the Armour is partly that the total

> > amount

> > > of thyroid is too high, but that the ratio of of T3 to T4 is wrong

> > for

> > > me....in other words too much T3. I made a trip to a different

> > doctor

> > > the other day (my usual doctor is in Paris), and we agreed to try a

> > > levothroid/cytomel combination with a smaller percentage of T3. I am

> >

> > > hoping that being able to adjust T3 and T4 independently of each

> > other

> > > we will be able to fine tune the dosage. In the end, I know that

> > it's a

> > > question of trial and error...wish that wasn't so.

> > >

> > > As for wondering if the original Synthroid dose of 100mcg was a

> > little

> > > to high, my TSH levels at that dose hovered between 0.7 and 1.0. I

> > know

> > > that some feel fine at those levels, but I am wondering if I am

> > someone

> > > that would feel better at a slightly higher level...maybe closer to

> > 2.

> > > Everybody is different, so again, I guess it's a matter of trial and

> >

> > > error.

> > >

> > > I have a question for anyone out there. One of the thyroid books

> > that I

> > > have suggests that blood should be drawn 2 to 3 hours after taking

> > > thyroid medication, but my doctor prefers for the blood to be drawn

> > > before taking medication. What have you guys been told?

> > >

> > > Sorry for the rambling messages, but I am so desperate to figure

> > these

> > > things out.

> > >

> > > Gracia wrote:

> > >

November 8, 2002

The thinking is that low thyroid is often

> accompanied by low adrenal for more details see

> http://www.drrind.com/symptoms.asp

November 8, 2002

Hey Gracia,

Thanks for the adrenal link. I will definitely check it out and address

it with my doctor.

My doctor is just vacationing in Paris...I hope that your friend is able

to find a good doctor soon...there is nothing worse than feeling awful

AND getting inadequate / compassionless treatment.

By the way, you asked about my age earlier...I am 29, but have been

feeling about 80!

Gracia wrote:

>

> Hi , it really sounds like adrenal problem then. Many people

> with

> weak adrenals go through life being treated as psych patients. I

> meant to

> ask you, is your old doc on vacation in Paris or permanently over

> there? I

> am asking for a friend who is very thyroid sick in Paris. She is

> desperate for a good doc.

> Gracia

>

> > Hi Gracia,

> >

> > At last check free T4 was 1.27 (0.61-1.76), my free T3 was 3.4 pg/mL

>

> > (2.3-4.2), and my TSH at that time was 0.258 uIU/mL (0.350-5.500).

> But,

> > when those tests were done I had only been on the Armour for 5 days,

> and

> > I had experimented with taking 120mg instead of 90mg the day

> > before....so I am not sure how much they are worth.

> >

> > The doctor has tried me on progesterone twice, the first time 50 mg

> and

> > the second time 5 mg, and both doses seemed to exacerbate my

> > irritability...but with everything that has been going on I have a

> very

> > hard time differentiating what is causing what.

> >

> > We did do allergy testing by ELISA, and I am pretty good at avoiding

> the

> > foods/chemicals that I reacted to, but admittedly not 100%.

> >

> > When I see the dr on monday I am going to talk to her about going

> back

> > onto an antidepressant, at least for a while. I think that my body

> > chemistry is totally out of whack right now, and that a little

> > pharmaceutical support, at least while we try to get these hormones

> > figured out, could help. I just had to take a two week leave of

> absence

> > from work, and I am devestated...I need to be able to function while

>

> > these things get figured out

> >

> > I will check into the Great Smokies lab, and talk to my dr about

> > cortisol when I see her. Thanks for the advice, and wish me luck.

> >

> > Gracia wrote:

> >

> > >

> > > Hi, have you had FREE T3 and FREE T4 tests done? When people

> don't

> > > feel well on Armour, that means to me that they need other

> hormones,

> > > like

> >

> > > cortisol, DHEA, estrogen, progesterone etc. I think it is better

> to

> > > find

> > > what else is needed rather than back off on T3. How old are

> you? I

> > > am

> > > not sure which is the best kind of adrenal test. I did a " spit

> test "

> > > for

> > > adrenals when I was feeling my worst and it seemed to be accurate.

>

> > > Do a

> > > search for Great Smokies Lab on Google. I think I have needed

> thyroid

> > > all

> > > my life but got it for the first time at age 52, and the first

> year

> > > was pure

> > > hell, but not as bad as the preceding 52. If you need cortisol

> you

> > > will

> > > absolutely have to have it to heal. Try cod liver oil, I hear

> good

> > > things

> > > about coconut oil too. Fats are important for hormone production.

>

> > > Also B

> > > vitamins help a lot. I had severe anxiety too. Now I never

> have

> > > it,

> > > except when I eat too much wheat. You might test for allergies!

>

> > > Gracia

> > > > Gracia,

> > > > Thanks for the input. DHEA level was checked with my most recent

>

> > > blood

> > > > work, and it was 158 ug/dL, with the normal range for my age

> group

> > > being

> > > > 65-380 (according to this particular lab). Cortisol levels have

> not

> > > been

> > > > checked though...is that done with blood work or the " spit kits "

>

> > > that I

> > > > have heard of? How do the DHEA levels sound to you? My doctor

> seemed

> > > to

> > > > think that they were fine, but I am curious what others think.

> > > >

> > > > I guess my main concern with the Armour is partly that the total

>

> > > amount

> > > > of thyroid is too high, but that the ratio of of T3 to T4 is

> wrong

> > > for

> > > > me....in other words too much T3. I made a trip to a different

> > > doctor

> > > > the other day (my usual doctor is in Paris), and we agreed to

> try a

> > > > levothroid/cytomel combination with a smaller percentage of T3.

> I am

> > >

> > > > hoping that being able to adjust T3 and T4 independently of each

>

> > > other

> > > > we will be able to fine tune the dosage. In the end, I know that

>

> > > it's a

> > > > question of trial and error...wish that wasn't so.

> > > >

> > > > As for wondering if the original Synthroid dose of 100mcg was a

> > > little

> > > > to high, my TSH levels at that dose hovered between 0.7 and 1.0.

> I

> > > know

> > > > that some feel fine at those levels, but I am wondering if I am

> > > someone

> > > > that would feel better at a slightly higher level...maybe closer

> to

> > > 2.

> > > > Everybody is different, so again, I guess it's a matter of trial

> and

> > >

> > > > error.

> > > >

> > > > I have a question for anyone out there. One of the thyroid books

>

> > > that I

> > > > have suggests that blood should be drawn 2 to 3 hours after

> taking

> > > > thyroid medication, but my doctor prefers for the blood to be

> drawn

> > > > before taking medication. What have you guys been told?

> > > >

> > > > Sorry for the rambling messages, but I am so desperate to figure

>

> > > these

> > > > things out.

> > > >

> > > > Gracia wrote:

> > > >

>

September 12, 2005

I'm Jeni, Mom to h (9 w/ type 2) who was originally diagnosed with type 1.

This could get a bit long, so bear with me *LOL* h was diagnosed with a

blood test. The muscle biopsy is really not required any more since the DNA test

was approved. h was in that first group of kids (not a study or anything)

that didn't have the biopsy and that was 9 years ago next month. The type is not

diagnosed by the DNA as of yet. Most people never find out how many back-up

copies they have unless they enroll in a study of some sort. Typing is still

done based on age of onset and severity of symptoms and there is SO much

overlap. The reason that many people on this list were originally diagnosed with

type 1 is type 2 is just " intermediate " meaning that if you're not a type 1 and

you're not a type 3 then you must be a two. That's why types 1 and 3 have fancy

names as well *LOL* h was diagnosed as a 1 because her symptoms started

before birth. It was after doing my research that I went

back to them and told them that she must be a type 2 because she can sit up.

(Am I making any sense here?)

I don't mean to sound harsh, but please don't count on Logan being changed to a

type 2. If he's just 6 months old and already having trouble with breathing and

swallowing then the docs are probably right about the type. Don't let that stop

you from fighting though! I know type 1's who are 3,4,8 up to 17!!!!!!!! I know

you posted on SMA Support's guestbook so I'm hoping that some of the really

great moms there will respond as well. There is so much that they can do to help

Logan! There is a special diet, a bi-pap, cough-assist and lots of other very

proactive measures that will make him healthier and happier! h personally

uses a g-tube, bi-pap, cough-assist, suction, pulse-ox etc etc and she LOVES the

stuff that helps keep her healthy.

Big hugs!!!!!!!!!!!!

Jeni

Jenn Malatesta <nekrosys@...> wrote:

Actually a lot of folks on this group were diagnosed as one type then

later assigned a different " type number. " Honestly, it seems like the

divisions between the different types are pretty fluid. I think they

now can determine through genetic testing how many back up SMN genes a

person has (the more the better) and this is roughly tied to the type

number. But I think diagnosing any type of SMA involves more than a

blood test. At least it did when I was a kid in the 70s. They had to

do a muscle biopsy and neurological tests. My parents said the whole

testing ordel was rather grueling.

Jenn

PS - There are parents on this list that know *a lot* more about the

newest genetic and testing research than I do. I'm sure they'll post

better explanations in the next few days.

Harbour wrote:

>I wonder how they messed up the diagnosis, Is that possible with Logan? I

>believe they were able to tell just through a simple blood test with him.

>

>Thank you!

>

>~~

>

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September 12, 2005

,

Yes, many Drs are not up to speed in the life prolonging treatments and

equipment that can help SMA babies such as Bipap, Cough Assist, and a simple g

tube. But yes pneumonia or even a little cold can be deadly for a SMA 1 baby.

Smasupport.com has parents who are very knowledgeable about these devices

and things, and know Drs who practice NIV (non-invasive ventilation). I think

they could give your friend some help if wanted, or even support for

palliative care if that's her choice. Hopefully one of those moms can get a

hold of

you. She's not alone in this fight.

Kimi

In a message dated 9/13/2005 2:58:06 A.M. Eastern Daylight Time,

Jharbour1@... writes:

Are most doctors just not

informed enough about SMA and the things they can do and offer to extend the

life of these babies? And if so why aren't they educating themselves so that

they can offer some kind of hope? I mean how many babies actually die from

this just because the doctors don't know enough to take the necessary steps

to prolong these babies lives? I'm just so lost, maybe I'm just naive &

don't know anything about it, my heart just aches

~~

September 13, 2005

I am feeling so sick I just got back from the hospital from seeing baby

Logan, while I was there the neurologist came in and told my girlfriend &

her husband that " things don't look good for Logan, we could loose him this

week or 8 months from now, we just don't know " .... Is it just me or is that

just a horrible thing to be predicting so soon?? Like there is absolutely no

hope for him? Have I just lost touch of reality in the midst of all of

this?? The doctor actually cried with Logan's parents... so I am assuming he

*really* believes that Logan is loosing his fight or will do so soon?...

What about all the children & babies & adults who have beat the odds. Is it

the doctors job to make sure that the parents don't get their hopes up? I am

just so confused Is it really that cut & dry? Are most doctors just not

informed enough about SMA and the things they can do and offer to extend the

life of these babies? And if so why aren't they educating themselves so that

they can offer some kind of hope? I mean how many babies actually die from

this just because the doctors don't know enough to take the necessary steps

to prolong these babies lives? I'm just so lost, maybe I'm just naive &

don't know anything about it, my heart just aches

~~

_____

From: [mailto: ] On

Behalf Of Jenifer Woody

Sent: Monday, September 12, 2005 3:30 PM

Subject: Re: Newbie/

I'm Jeni, Mom to h (9 w/ type 2) who was originally diagnosed with type

1. This could get a bit long, so bear with me *LOL* h was diagnosed with

a blood test. The muscle biopsy is really not required any more since the

DNA test was approved. h was in that first group of kids (not a study or

anything) that didn't have the biopsy and that was 9 years ago next month.

The type is not diagnosed by the DNA as of yet. Most people never find out

how many back-up copies they have unless they enroll in a study of some

sort. Typing is still done based on age of onset and severity of symptoms

and there is SO much overlap. The reason that many people on this list were

originally diagnosed with type 1 is type 2 is just " intermediate " meaning

that if you're not a type 1 and you're not a type 3 then you must be a two.

That's why types 1 and 3 have fancy names as well *LOL* h was diagnosed

as a 1 because her symptoms started before birth. It was after doing my

research that I went

back to them and told them that she must be a type 2 because she can sit up.

(Am I making any sense here?)

I don't mean to sound harsh, but please don't count on Logan being changed

to a type 2. If he's just 6 months old and already having trouble with

breathing and swallowing then the docs are probably right about the type.

Don't let that stop you from fighting though! I know type 1's who are 3,4,8

up to 17!!!!!!!! I know you posted on SMA Support's guestbook so I'm hoping

that some of the really great moms there will respond as well. There is so

much that they can do to help Logan! There is a special diet, a bi-pap,

cough-assist and lots of other very proactive measures that will make him

healthier and happier! h personally uses a g-tube, bi-pap, cough-assist,

suction, pulse-ox etc etc and she LOVES the stuff that helps keep her

healthy.