Re: Support

[Guest guest]

It is too bad that your mother is in such denial about your son. It is also

too bad that your mother blames you for the way the child is. What is she

saying that you do not discipline him right or too much. Hang in there and

prove to her by his improvement how good the diet is for him. I am sorry

that you do not have support. My dh watches the other kids like a hawk to

be sure that at dinner they do not leave something in Evan's reach that he

should not have. Hopefully your mother will come around but if she does

not, you must do what is best for your child even if she does not like it.

Vent some more. It helps to get it out of your system. I am on my way to my

grandparent's list to vent about a daughter who worries about herself and

not her three kids I am raising.

Betty

[Guest guest]

Carol,

I know this is none of my business and if you don't feel

comfortable answering then I will respect that. I just have one

question though do you leave your son alone with your sister-in-law?

I also just want to say that I am so sorry that your family's don't

agree with what you are doing. So far (knock on wood) I can only

imagine what your family's are putting you thru, and I pray that God

would give you strength to deal with your family's.

God Bless,

Gracie mother of and

>

> Watch those who openly oppose the diet -- they are the ones who will

> sabbotage it when you are in the bathroom or running an errand.

And for

> some reason, my son will eat whatever this aunt gives him, whereas

if

> someone else gives him something, he usually questions if it's ok,

or

> simply says, " I have to ask mommy first. "

>

> Carol

>

>

[Guest guest]

hi, I know how you feel. Number one my husband is in denial. He refuses to

believe my son has any problem at all. he refuses to look through any of the

info i found. He thinks I am out of my mind with this diet. My mother in law

thinks that my sons condition is my fault because their is mental illness in

my family. I am all alone on this one. But i don't care I will do what I

think is best. Besides it might not work but it can't hurt. edie

[Guest guest]

In a message dated 1/23/01 1:44:12 AM Eastern Standard Time,

Midnytangelbbw@... writes:

> Has anyone else had any kind of problems with lack of support? I know I am

> doing the right thing..... and I know that it really isn't any of her

> business.... but god, to have my own mother not support what I try and do

> is

> so disheartening. It hurts.

>

Believe me, you are not alone...my own husband says he sees no need for this

" stupid diet " and says that it just further isolates from the world.

We are almost 4 months into it now and my husband (and his family) think

there has been no progress...I see the progress with my own eyes and am

waiting for additional progress as the months pass (ATEC of 68 pre-diet, now

a 34). It is extremely hard to do this diet WITH support so for those of us

who have people working against us it is doubly hard.

Some of the things I have heard recently are... " there is no medical reason to

do this, " " you're depriving him and the rest of your kids of a normal life, "

" he won't have to do this for more than a year, " " I can't believe he eats

that, " " you can't expect the rest of us to eat those foods...we can put him

in a high chair in the corner while we eat " and other niceties I won't

mention here. We have an anti-gliadin antibody test result and the full

support of our pediaitrician and I still am struggling for acceptance of this

from my husband and his family. Even the pediatric GI specialist we went to

said we should put him back on gluten since his stools haven't improved after

3 months off of it. She also told us the test we had run was " useless " and

that her office makes a lot of money from patients with a positive

anti-gliadin antibody test.

In the long run, though, I know I am doing the right thing...and I know that

this is one piece of the key to my son's recovery. So I soldier on...

Take care,

M

[Guest guest]

In a message dated 1/23/01 1:44:12 AM Eastern Standard Time,

Midnytangelbbw@... writes:

> Has anyone else had any kind of problems with lack of support? I know I am

> doing the right thing..... and I know that it really isn't any of her

> business.... but god, to have my own mother not support what I try and do

> is

> so disheartening. It hurts.

>

Believe me, you are not alone...my own husband says he sees no need for this

" stupid diet " and says that it just further isolates from the world.

We are almost 4 months into it now and my husband (and his family) think

there has been no progress...I see the progress with my own eyes and am

waiting for additional progress as the months pass (ATEC of 68 pre-diet, now

a 34). It is extremely hard to do this diet WITH support so for those of us

who have people working against us it is doubly hard.

Some of the things I have heard recently are... " there is no medical reason to

do this, " " you're depriving him and the rest of your kids of a normal life, "

" he won't have to do this for more than a year, " " I can't believe he eats

that, " " you can't expect the rest of us to eat those foods...we can put him

in a high chair in the corner while we eat " and other niceties I won't

mention here. We have an anti-gliadin antibody test result and the full

support of our pediaitrician and I still am struggling for acceptance of this

from my husband and his family. Even the pediatric GI specialist we went to

said we should put him back on gluten since his stools haven't improved after

3 months off of it. She also told us the test we had run was " useless " and

that her office makes a lot of money from patients with a positive

anti-gliadin antibody test.

In the long run, though, I know I am doing the right thing...and I know that

this is one piece of the key to my son's recovery. So I soldier on...

Take care,

M

[Guest guest]

In a message dated 1/23/01 1:44:12 AM Eastern Standard Time,

Midnytangelbbw@... writes:

> Has anyone else had any kind of problems with lack of support? I know I am

> doing the right thing..... and I know that it really isn't any of her

> business.... but god, to have my own mother not support what I try and do

> is

> so disheartening. It hurts.

>

Believe me, you are not alone...my own husband says he sees no need for this

" stupid diet " and says that it just further isolates from the world.

We are almost 4 months into it now and my husband (and his family) think

there has been no progress...I see the progress with my own eyes and am

waiting for additional progress as the months pass (ATEC of 68 pre-diet, now

a 34). It is extremely hard to do this diet WITH support so for those of us

who have people working against us it is doubly hard.

Some of the things I have heard recently are... " there is no medical reason to

do this, " " you're depriving him and the rest of your kids of a normal life, "

" he won't have to do this for more than a year, " " I can't believe he eats

that, " " you can't expect the rest of us to eat those foods...we can put him

in a high chair in the corner while we eat " and other niceties I won't

mention here. We have an anti-gliadin antibody test result and the full

support of our pediaitrician and I still am struggling for acceptance of this

from my husband and his family. Even the pediatric GI specialist we went to

said we should put him back on gluten since his stools haven't improved after

3 months off of it. She also told us the test we had run was " useless " and

that her office makes a lot of money from patients with a positive

anti-gliadin antibody test.

In the long run, though, I know I am doing the right thing...and I know that

this is one piece of the key to my son's recovery. So I soldier on...

Take care,

M

[Guest guest]

I haven't even started to go gluten free and I have never gotten support from my

in laws. According to my in laws, my son is not mentally impaired. In spite of

the fact that he is 5, non-verbal, non-potty rained, can't eat with silverware,

head bangs, hit, bites, etc. He is " spoiled " . And you know whose fault that

is! Every time I investigate therapy, dh tells his mom that I found something

that we might try. She then says that I think I know everything (which I do!

lol) but I don't. The only support I would get would be if I beat him. Boy,

they believe in spanking. She deliberately tries to engage in a manner

that

he can not handle and then wants to slap him for not responding the way she

wants.

And when my home aides mention that it's too bad that I can't get more help for

my other son who had some autistic qualities, she goes nuts and says they don't

know what they are talking about. I guess that fact that he's sensitive to loud

noises, has a real problem with change and disruption in routine and is about 2

years speech delayed counts for naught. Of course that's my fault too.

One example. I worked my butt off so Ian would say I love you. I thought that

it would tickle the grandmas. At this point he wasn't even calling me mommy and

he was almost 3. Well, one day, after accusing me of not working enough with

him, she actually took credit for him saying I love you! She sees him every

other week for about an hour! I could have killed her.

What I do now is minimize my contact with her. I realize we are talking about

your mother here and not mother in law but it may be a good idea to minimize

contact until you get the diet underway and she can see any changes. Mine

hasn't

noticed yet that none of the kids are drinking milk any more! And, don't let

him

be alone with her because she will sabotage all your work. When she sees

results, she'll come around.

Maureen

[Guest guest]

I haven't even started to go gluten free and I have never gotten support from my

in laws. According to my in laws, my son is not mentally impaired. In spite of

the fact that he is 5, non-verbal, non-potty rained, can't eat with silverware,

head bangs, hit, bites, etc. He is " spoiled " . And you know whose fault that

is! Every time I investigate therapy, dh tells his mom that I found something

that we might try. She then says that I think I know everything (which I do!

lol) but I don't. The only support I would get would be if I beat him. Boy,

they believe in spanking. She deliberately tries to engage in a manner

that

he can not handle and then wants to slap him for not responding the way she

wants.

And when my home aides mention that it's too bad that I can't get more help for

my other son who had some autistic qualities, she goes nuts and says they don't

know what they are talking about. I guess that fact that he's sensitive to loud

noises, has a real problem with change and disruption in routine and is about 2

years speech delayed counts for naught. Of course that's my fault too.

One example. I worked my butt off so Ian would say I love you. I thought that

it would tickle the grandmas. At this point he wasn't even calling me mommy and

he was almost 3. Well, one day, after accusing me of not working enough with

him, she actually took credit for him saying I love you! She sees him every

other week for about an hour! I could have killed her.

What I do now is minimize my contact with her. I realize we are talking about

your mother here and not mother in law but it may be a good idea to minimize

contact until you get the diet underway and she can see any changes. Mine

hasn't

noticed yet that none of the kids are drinking milk any more! And, don't let

him

be alone with her because she will sabotage all your work. When she sees

results, she'll come around.

Maureen

[Guest guest]

I haven't even started to go gluten free and I have never gotten support from my

in laws. According to my in laws, my son is not mentally impaired. In spite of

the fact that he is 5, non-verbal, non-potty rained, can't eat with silverware,

head bangs, hit, bites, etc. He is " spoiled " . And you know whose fault that

is! Every time I investigate therapy, dh tells his mom that I found something

that we might try. She then says that I think I know everything (which I do!

lol) but I don't. The only support I would get would be if I beat him. Boy,

they believe in spanking. She deliberately tries to engage in a manner

that

he can not handle and then wants to slap him for not responding the way she

wants.

And when my home aides mention that it's too bad that I can't get more help for

my other son who had some autistic qualities, she goes nuts and says they don't

know what they are talking about. I guess that fact that he's sensitive to loud

noises, has a real problem with change and disruption in routine and is about 2

years speech delayed counts for naught. Of course that's my fault too.

One example. I worked my butt off so Ian would say I love you. I thought that

it would tickle the grandmas. At this point he wasn't even calling me mommy and

he was almost 3. Well, one day, after accusing me of not working enough with

him, she actually took credit for him saying I love you! She sees him every

other week for about an hour! I could have killed her.

What I do now is minimize my contact with her. I realize we are talking about

your mother here and not mother in law but it may be a good idea to minimize

contact until you get the diet underway and she can see any changes. Mine

hasn't

noticed yet that none of the kids are drinking milk any more! And, don't let

him

be alone with her because she will sabotage all your work. When she sees

results, she'll come around.

Maureen

[Guest guest]

I went for several years with family and friends asking why my kids were always

sick. The message was loud and clear - I was causing it. After all my sister's

kids were healthy. When their illnesses started to get more severe (kidney

infections and seizures) I began to get more aggressive. I started messing

around with diet and doing research. Now they are crediting me (of all people)

with their progress. If you see benefit to what you are doing stick with it.

Time will tell for the other people. Hang in there, in Ohio

[Guest guest]

,

I was very scared to tell my parents and inlaws about the diet but they

have been very supportive. My mom even gave us a grain mill for

Christmas. The person who was the least supportive of the diet

intitially was my husband. But since the psych prescribed prozac for our

4 year old, my husband prefers to try the diet first. Oh, and after

spending 2 1/2 weeks of Christmas vacation with him my husband was

DYING to try the diet. ha! (He works a lot usually.)

I am so grateful that my parents don't blame me for the way Sam is. I

have two Asperger siblings (we only figured this out AFTER we dx my son)

and my mom is alwyas telling me how fortunate it is for us that we now

have a NAME for the way my son is. My mom said she felt a huge sense of

relief when it dawned on us that Mark and Jeanette were on the spectrum;

it wasn't all HER FAULT! So instead of being in denial, my family is

*very* aware of the problems we are facing. And my inlaws are the same.

In fact my MIL was one of the first to suggest autism. (Which pissed me

off as I was in deep denial, but now it is good because she is so

supportive..)

We have only been doing the diet for a very short time so haven't had to

face a lot of people trying to sabatoge it yet. I am most worried about

FIL for whom food is love. Ya know, like he and Sam had a ritual of

sitting down and eating graham crackers and milk together.

For those of you who have unsupportive or sabatoging families, that's

why you have us. And if you know someone will try to sneak your child

food, limit contact! I am very protective of my children. Even when we

weren't doing the diet, before I had deemed a food appropriate for Sam

(like before he turned one) people knew they would be in huge trouble if

they gave it to him. My FIL could not take my son anywhere for a long

time after I found out he had him on his lap " helping " him drive. (!!!!!!)

Suzanne, Mama to 4 (HFA) and Olivia 10 months

Schlotzhauer wrote:

>

> After reading all of you guys comments I am almost in tears. I am so very

> grateful for family who goes out of their way to be supportive. p

[Guest guest]

I too am thankful for the support this list gives. I just received 's

test results back from the gluten/casein testing we had done at Alltess

Labs and his scores were off the charts. 1-100 being normal, casein was

scored at 11,100, 3+ very positive against the IgA testing. He scored

3,100 against the gluten Iga testing, 1+ positive. It's scary that his

scored are actually that high and it's no wonder he's at a cognitive level

of a 8 month old. He's been eating/drinking autism for 3 1/2 years now. I

feel awful even though I didn't know what I was doing at the time by giving

him that stuff. I am so thankful to the list for tuning me on to the

testing for IgA. is ticked off about not being able to eat/drink all

his favorites but his scored have shocked me into submission and have made

me think that I will adhere to this diet to save my son from this terrible

addiction, and that's what it is. No wonder he's in his own little world

because he gets the equivilent of 3-4 morphine shots (equal to the amount

of casein/gluten he injested daily) a day as decribed by our neurologist.

I believe in dietary intervention and I believe in every family who is

woking hard to adhere to this diet. We will prevail over this disorder and

we will recover our children. Just believe in yourself and your children

and hold steady to this diet which the lord has bestowed upon us.

[Guest guest]

I too am thankful for the support this list gives. I just received 's

test results back from the gluten/casein testing we had done at Alltess

Labs and his scores were off the charts. 1-100 being normal, casein was

scored at 11,100, 3+ very positive against the IgA testing. He scored

3,100 against the gluten Iga testing, 1+ positive. It's scary that his

scored are actually that high and it's no wonder he's at a cognitive level

of a 8 month old. He's been eating/drinking autism for 3 1/2 years now. I

feel awful even though I didn't know what I was doing at the time by giving

him that stuff. I am so thankful to the list for tuning me on to the

testing for IgA. is ticked off about not being able to eat/drink all

his favorites but his scored have shocked me into submission and have made

me think that I will adhere to this diet to save my son from this terrible

addiction, and that's what it is. No wonder he's in his own little world

because he gets the equivilent of 3-4 morphine shots (equal to the amount

of casein/gluten he injested daily) a day as decribed by our neurologist.

I believe in dietary intervention and I believe in every family who is

woking hard to adhere to this diet. We will prevail over this disorder and

we will recover our children. Just believe in yourself and your children

and hold steady to this diet which the lord has bestowed upon us.

[Guest guest]

I too am thankful for the support this list gives. I just received 's

test results back from the gluten/casein testing we had done at Alltess

Labs and his scores were off the charts. 1-100 being normal, casein was

scored at 11,100, 3+ very positive against the IgA testing. He scored

3,100 against the gluten Iga testing, 1+ positive. It's scary that his

scored are actually that high and it's no wonder he's at a cognitive level

of a 8 month old. He's been eating/drinking autism for 3 1/2 years now. I

feel awful even though I didn't know what I was doing at the time by giving

him that stuff. I am so thankful to the list for tuning me on to the

testing for IgA. is ticked off about not being able to eat/drink all

his favorites but his scored have shocked me into submission and have made

me think that I will adhere to this diet to save my son from this terrible

addiction, and that's what it is. No wonder he's in his own little world

because he gets the equivilent of 3-4 morphine shots (equal to the amount

of casein/gluten he injested daily) a day as decribed by our neurologist.

I believe in dietary intervention and I believe in every family who is

woking hard to adhere to this diet. We will prevail over this disorder and

we will recover our children. Just believe in yourself and your children

and hold steady to this diet which the lord has bestowed upon us.

[Guest guest]

Pat,

Thank you for this information, I have printed several pages out, and will

certainly learn alot, I can tell,

thanks,

Carol

--

>

> Hello,

> I would like to invite you to join my online support group, Finding

> Our Way Support. This group is different as it uses journaling to

> document our journey with chronic pain. Leading experts such as Dr.

> Dean Edell and Oprah support journaling as a way to reduce pain

> levels, stress, express graditude and promote healing. More

> information is at: www.myspiritat.homestead.com/index.html

>

>

>

>

>

>

[Guest guest]

Pat,

Thank you for this information, I have printed several pages out, and will

certainly learn alot, I can tell,

thanks,

Carol

--

>

> Hello,

> I would like to invite you to join my online support group, Finding

> Our Way Support. This group is different as it uses journaling to

> document our journey with chronic pain. Leading experts such as Dr.

> Dean Edell and Oprah support journaling as a way to reduce pain

> levels, stress, express graditude and promote healing. More

> information is at: www.myspiritat.homestead.com/index.html

>

>

>

>

>

>

[Guest guest]

Pat,

Thank you for this information, I have printed several pages out, and will

certainly learn alot, I can tell,

thanks,

Carol

--

>

> Hello,

> I would like to invite you to join my online support group, Finding

> Our Way Support. This group is different as it uses journaling to

> document our journey with chronic pain. Leading experts such as Dr.

> Dean Edell and Oprah support journaling as a way to reduce pain

> levels, stress, express graditude and promote healing. More

> information is at: www.myspiritat.homestead.com/index.html

>

>

>

>

>

>

[Guest guest]

Mitzi

Where in Canada are you moving back to? Are you guys dual citicizens? Just

some questions, let me know and I'll see what can possibly happen for you on

this end. When do you move back to Canada?

Debby

Support

> Hi all, it's my turn to ask for support. My husband Mark and I are at

> our wits end. We saw Dr. H. a week or so before the convention. She

> confirmed our suspicion that our 18 month old twins and Zachary

> are SGA and said they'd probably need the three part GI surgery

> (Nissen, G-tube, and pyloroplasty). We've had a month to process the

> information, run tests (Zach's gastric emptying study came back at

> over 200 minutes - a very elevated number and was unable to

> tolerate the test but Dr. H. agreed that if Zach's #s were that bad

> 's could only be worse as her reflux, eating and size are

> considerably worse than Zachary's.) go to the convention, and get

> used to the idea of both of our kids needing surgery, periactin and

> growth hormone for the forseeable future.

>

> OK, that's not the part I need support about, believe it or not. No,

> the problem is that we are under time constraints. We're moving back

> home to Canada and won't have US health insurance for that much

> longer.

>

> I keep on sending emails to Dr. H. asking what we are supposed to do

> next in terms of appointments and treatment and we're getting no

> response! (She is responding to other questions we send her by email

> so that's not the problem). I hate to be such a nudge. But Mark

> nudges me, then I nudge her, and maybe then she nudges her GI, who

> knows!

>

> And to top it all off we sent her an email yesterday to let her know

> that and Zachary each lost more than half a pound in the last

> month! We feel like we are so close to being able to help them grow

> and thrive and yet so far.

>

>

>

>

>

>

[Guest guest]

I don't know where you are or if this would work, but try calling her

directly, or make and appointment to see her again and tell her your

urgency! It might be worth a try!

Carmen, Mom to Storm

[Guest guest]

Hi Debby,

Mark and I are Canadian and the kids will have dual

citizenship. We'll be returning to Toronto after being

in tthe Boston and New York areas for the last three

years.

__________________________________________________

[Guest guest]

Mitzi

I am in Toronto. Do you know where abouts? You'll have to first get a

referral from your doc there (did you say it was Dr. H?) to Sick Kids. The

head of endocrinology there is Dr. Dennis Daneman. He has an outstanding

reputation. I find him a little rushed but he does know he has to answer my

questions fully or I kick up a fuss (and start massive emails!! he's learned

to make sure he has answered me to my satisfaction). He believes completely

in GHT for RSS. A bonus is the amount he had placed Adam on, when Dr. H.

checked the dosage last July in Chicago......she agreed. (wow eh?? she

agreed!!!!!). He does not believe in periactin. Dr. H. gave me a

prescription for it last year, I didn't have it filled (my choice) but you

could probably figure out something.

Finally, I would assume if you are returning to Canada (meaning you are

citizens) will you be eligible for OHIP right away? I have all the names and

contacts at Eli Lilly here in Toronto for you to get on their

" compassionate " plan. That means you can get the GHT right away while you

sort out insurance issues. You don't want to have to wait while that all

gets sorted out.

Let me know, if you don't mind, if you know what part of Toronto (eg.

Mississauga, Oshawa, Scarborough, North York etc.). It's great you are

coming here because I can offer you all the help I can!! (or that you want!!

which ever comes first) LOL

Debby

Re: Support

> Hi Debby,

> Mark and I are Canadian and the kids will have dual

> citizenship. We'll be returning to Toronto after being

> in tthe Boston and New York areas for the last three

> years.

>

>

> __________________________________________________

>

[Guest guest]

Mitzi

I am in Toronto. Do you know where abouts? You'll have to first get a

referral from your doc there (did you say it was Dr. H?) to Sick Kids. The

head of endocrinology there is Dr. Dennis Daneman. He has an outstanding

reputation. I find him a little rushed but he does know he has to answer my

questions fully or I kick up a fuss (and start massive emails!! he's learned

to make sure he has answered me to my satisfaction). He believes completely

in GHT for RSS. A bonus is the amount he had placed Adam on, when Dr. H.

checked the dosage last July in Chicago......she agreed. (wow eh?? she

agreed!!!!!). He does not believe in periactin. Dr. H. gave me a

prescription for it last year, I didn't have it filled (my choice) but you

could probably figure out something.

Finally, I would assume if you are returning to Canada (meaning you are

citizens) will you be eligible for OHIP right away? I have all the names and

contacts at Eli Lilly here in Toronto for you to get on their

" compassionate " plan. That means you can get the GHT right away while you

sort out insurance issues. You don't want to have to wait while that all

gets sorted out.

Let me know, if you don't mind, if you know what part of Toronto (eg.

Mississauga, Oshawa, Scarborough, North York etc.). It's great you are

coming here because I can offer you all the help I can!! (or that you want!!

which ever comes first) LOL

Debby

Re: Support

> Hi Debby,

> Mark and I are Canadian and the kids will have dual

> citizenship. We'll be returning to Toronto after being

> in tthe Boston and New York areas for the last three

> years.

>

>

> __________________________________________________

>

[Guest guest]

Mitzi - Next time call me immediately. That is what MAGIC is here

for. I will leave an email for Dr. Harbison now, and if she doesn't

respond to me this weekend, I will call and interrupt her Monday (I

would do that tomorrow, but I already interrupted her today!).

I agree that you need to know what you should do - because if you are

going to do this surgery, it needs to be done ASAP before moving back

to Canada.

I will call you at home.

> Hi all, it's my turn to ask for support. My husband Mark and I are

at

> our wits end. We saw Dr. H. a week or so before the convention. She

> confirmed our suspicion that our 18 month old twins and

Zachary

> are SGA and said they'd probably need the three part GI surgery

> (Nissen, G-tube, and pyloroplasty). We've had a month to process

the

> information, run tests (Zach's gastric emptying study came back at

> over 200 minutes - a very elevated number and was unable to

> tolerate the test but Dr. H. agreed that if Zach's #s were that bad

> 's could only be worse as her reflux, eating and size are

> considerably worse than Zachary's.) go to the convention, and get

> used to the idea of both of our kids needing surgery, periactin and

> growth hormone for the forseeable future.

>

> OK, that's not the part I need support about, believe it or not.

No,

> the problem is that we are under time constraints. We're moving

back

> home to Canada and won't have US health insurance for that much

> longer.

>

> I keep on sending emails to Dr. H. asking what we are supposed to

do

> next in terms of appointments and treatment and we're getting no

> response! (She is responding to other questions we send her by

email

> so that's not the problem). I hate to be such a nudge. But Mark

> nudges me, then I nudge her, and maybe then she nudges her GI, who

> knows!

>

> And to top it all off we sent her an email yesterday to let her

know

> that and Zachary each lost more than half a pound in the last

> month! We feel like we are so close to being able to help them grow

> and thrive and yet so far.

[Guest guest]

Mitzi - Next time call me immediately. That is what MAGIC is here

for. I will leave an email for Dr. Harbison now, and if she doesn't

respond to me this weekend, I will call and interrupt her Monday (I

would do that tomorrow, but I already interrupted her today!).

I agree that you need to know what you should do - because if you are

going to do this surgery, it needs to be done ASAP before moving back

to Canada.

I will call you at home.

> Hi all, it's my turn to ask for support. My husband Mark and I are

at

> our wits end. We saw Dr. H. a week or so before the convention. She

> confirmed our suspicion that our 18 month old twins and

Zachary

> are SGA and said they'd probably need the three part GI surgery

> (Nissen, G-tube, and pyloroplasty). We've had a month to process

the

> information, run tests (Zach's gastric emptying study came back at

> over 200 minutes - a very elevated number and was unable to

> tolerate the test but Dr. H. agreed that if Zach's #s were that bad

> 's could only be worse as her reflux, eating and size are

> considerably worse than Zachary's.) go to the convention, and get

> used to the idea of both of our kids needing surgery, periactin and

> growth hormone for the forseeable future.

>

> OK, that's not the part I need support about, believe it or not.

No,

> the problem is that we are under time constraints. We're moving

back

> home to Canada and won't have US health insurance for that much

> longer.

>

> I keep on sending emails to Dr. H. asking what we are supposed to

do

> next in terms of appointments and treatment and we're getting no

> response! (She is responding to other questions we send her by

email

> so that's not the problem). I hate to be such a nudge. But Mark

> nudges me, then I nudge her, and maybe then she nudges her GI, who

> knows!

>

> And to top it all off we sent her an email yesterday to let her

know

> that and Zachary each lost more than half a pound in the last

> month! We feel like we are so close to being able to help them grow

> and thrive and yet so far.

[Guest guest]

Thanks everybody who responded to our call for help.

We got a copy of Dr. H's treatment report yesterday.

She says to " limit " their Pediasure intake but feed

them a high calorie diet (those two things are

mutually exclusive in our experience), and to come see

her in three months. Clearly that's too long for us to

wait since we're headed to Toronto so soon. I guess

what I take away from this is you just have to keep

pushing.

We're going to the Newport Folk Festival this weekend,

and then on to a few days in Nantucket. I'm so excited

to be getting away on a real family vacation.

Hopefully when we get back we'll be able to get going

full steam on the kids' treatment.

Have a great weekend and we'll check in next week.

Mitzi, Mark, and Zachary

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