GH

December 4, 1999

To Dennise

Christian was 29 1/2'' and 19 1/2 lbs and was just over 23 months old when

he started GH .Good luck with starting Ross on GH I hope he does really well

joanne

Re: New Member

>

> >

> >To Katy

> >CHristian is 3 years and just over 7 months so on my chart he is 1 cm

below

> >the 25th.This is better than I ever dreamed of.Before he started gh he

was

> >not on any centile,in 3 months he was on 0.4th,a further 5 months the

> >2nd,and after another 7 months on the 9th.In the 19 months he has been on

> gh

> >he has grown 21cms[sorry I always forget 8 1/4 '']and about 10 1/2

> lbs.Today

> >I saw one of DR Stanhopes registrars and she said that sometimes RSS

> >children drop slightly off thier centile when they stop but she still

> thinks

> >that he will be no shorter then 5 ft 6''.thats a far cry from the 5ft 1''

> >predicted height.

> >joanne

>

> >

January 3, 2000

Hi Kara- I just read your message about the Genotropin Bridge Program. My

son Keagan just started on this in Dec. & the program is supplying us with

the rx until everything is settled with the insurance co. It's a great

program isn't it? Our insurance hasn't approved or denied Keagan the shots.

It's like we're in limbo. However, unless the Bridge program quits, I'm not

going to worry about it!!---Marla

GH

> From: kirkara@... (Schneidawind)

>

> Hi everyone,

>

> It's been a while since I've corresponded. We were gone the week of

> Christmas and I came home to 390 e-mail messages. (I am also on the g-tube

> listserve). I've just gotten done reading all the RSS mail and have a few

> suggestions.

>

> My daughter started growth hormone 3 weeks ago. Everything is going really

> good. We also use the Genotropin pen, Dennise, and love it. It is so easy

> to prepare and use. She doesn't have any problem getting the shots. I

pinch

> her skin between my fingers when I give it to her, I think that helps a

> little bit. We are at an advantage that she is still so young and has no

> idea there is a needle hidden under that pen. The pen, in and of itself,

> looks pretty harmless. I've given the shots to myself and I really doesn't

> hurt. We were instructed to just alternate thighs every night. No mention

> of abdomen or hips. I don't have to worry where I injected last because

> there is a nice little red dot there. Sometimes even a bruise. I don't

know

> if that's normal or not.

>

> I have a suggestion for all of you who have had insurance denial of growth

> hormone. Our insurance is BCBS and they have always paid for everything

> with Kaci's care but they denied GH because there wasn't enough scientific

> evidence that it helps with RSS. I was all ready to go to battle with them

> when I got a call from the Genotropin Bridge Program. Evidentally my

> doctor's nurse called them. What they do is provide GH and all supplies

> free to those who were denied by insurance. It is based on income and

there

> could be a small parental fee. They told me that my husband would have to

> make a way lot more before we would ever have a fee so I think their

income

> guidelines are pretty high. Within two days I had the growth hormone with

a

> nice carrying case, needles, alcohol swabs, insulated travel bag and

how-to

> video. Every time I need more growth hormone I just call their 800 number

> and it comes right to the door in its own cooler. I don't even have to

pick

> it up at the pharmacy. It couldn't be easier! And they are so nice to work

> with. They even wrote an appeal letter for me to the insurance company

just

> as a matter of principle. If anyone is interested, their toll-free number

> is 1-. Anyone can call, our nurse just happened to do it for

> us. I had never even heard of the program. Of course, your doctor has to

> prescribe Genotropin as the GH of choice. Some medical facilities only go

> with certain pharmaceutical companies.

>

> Hope this helps someone. It sure saved me a lot of frustration.

>

> Kara

>

> mom to 25 mo. old twins Koen (nda) and Kaci (RSS, g-tube, assymetry and

now

> GH, 19.4 lbs., 29 3/4 in)

>

> >

January 10, 2000

,

Thanks for your thoughtful words of encouragement for Ross and us. He's

still not doing very well with all of it. We use the Genotropin pen which

is a device that has a cartridge that mixes the growth hormone and the

diluent inside it as well as hides the needle, so it might be like the

Inject-Ease (I've never seen the Inject-Ease). Even though he can't see the

needle, he still " knows " it's going to hurt. We've ended up giving it to

him while he was asleep - last night he didn't budge. We keep telling him

that we still have to try every day, though. We're going through lots and

lots of alcohol swabs!! I'm glad to hear that Alisha has done well with the

injections - how has her growth been since being on GH? Do you remember

what her height and weight were when you started her on it?

Dennise

Ross - 5 1/2, 38 " , 28 lbs., periactin, GH

Re: GH for Ross

>

>Dennise,

> It was hard to give Alisha her shot at first I had her dad do

it because I cound'nt. I would just about cry right along with her.

>

>It don't take long and they get used to getting the shot....

>She was about 3 when started on the shot.

>The Inject-Ease is wonderful, It really helped, that she couldn't

>see the needle.It really helped me too..

>Now she don't ever let me forget to give her the shot.

>Lot of kids do it them self, but she just isn't ready yet.She is 8 and I

was told kids alot younger than her give their own shot..

>I know that it will be a long time till you get to that point.

>But things do get better. It just take time..Hang in there

>

>Alisha tells her little sister that the shot doesn't hurt, and it is

helping her to get big, and strong..

>

>Hope it gets easier real soon for you.

>

> Alisha's mom 8 with RSS

></B>

>> GH for

>> Ross</DIV>

>> <DIV><BR></DIV>

>> <DIV><FONT color=#000000 size=2>Jodi and

>> Kathleen,</FONT></DIV>

>> <DIV><FONT color=#000000

>> size=2></FONT> & nbsp;</DIV>

>> <DIV><FONT color=#000000 size=2>Thanks for

>> your support in our next step

>> with growth hormone therapy. & nbsp; We had a

>> wonderfully positive

>> experience at our teaching session with our

>> nurse, Debbie. & nbsp; As I

>> said before, we are using the Genotropin

>> pen. & nbsp; She gave all of us,

>> including Ross and Bryce, a pen to put

>> together and then we actually

>> injected each other with a placebo for

>> practice. & nbsp; She treated the

>> kids just as if they were Jeff and me. & nbsp;

>> It put them and us at ease

>> and they felt so important. & nbsp; It was

>> definitely a & quot;family

>> affair & quot;. & nbsp; Ross was only injected

>> once yesterday with the real

>> stuff, which I did for him. & nbsp; Last night

>> Jeff did the injection and

>> it went smoothly. & nbsp; Ross is such a

>> trooper. & nbsp; He's got this

>> & quot;whatever & quot; attitude towards it and

>> I'm just thrilled. & nbsp;

>> Tonight went great too, but Ross has been sick

>> all day with 102 & deg; and

>> not eating - OF COURSE. & nbsp; He just vomited

>> what little he did

>> have. & nbsp; If it's not one thing, it's

>> another, isn't it? & nbsp; Thanks,

>> Jodi, for the advice about letting Ross help

>> in any way that he

>> can. & nbsp; He's picking out the spots for his

>> injections and then

>> putting the stickers on the calendar

>> indicating where he was injected,

>> to help assist in the rotation of the

>> injections. & nbsp; Our next

>> appointment is April 6 and I'll be sitting on

>> pins and needles - pun

>> <EM>definitely</EM> intended - until we find

>> out how much he has

>> grown. & nbsp; Wish us luck!</FONT></DIV>

>> <DIV><FONT color=#000000

>> size=2></FONT> & nbsp;</DIV>

>> <DIV><FONT color=#000000 size=2>I'm so glad to

>> see some of you are

>> getting the hang of uploading pictures -

>> wow! & nbsp; Lots of them to see

>> if any of you haven't yet gone into the Files

>> area to check them

>> out. & nbsp; I haven't had a chance to see the

>> new ones yet, but will

>> soon. & nbsp; I especially want to see Keagan's

>> picture. & nbsp; Even though

>> Ross is only 5, he seems to be losing his

>> & quot;RSS look & quot;,

>> too. & nbsp; I'll upload one soon of him and his

>> sister, Bryce, who just

>> turned 8.</FONT></DIV>

>> <DIV><FONT color=#000000

>> size=2></FONT> & nbsp;</DIV>

>> <DIV><FONT color=#000000

>> size=2>Dennise</FONT></DIV></BLOCKQUOTE></BLOCKQUOTE></BODY></HTML>

>>

>> <HR>

>> <html>

>> >

>>

>> __________________________________________________

>>

February 5, 2000

I heard from the endocrinology nurse yesterday. She has spoken with the company

that will get things going for the GH program. They know that our ins will not

pay, but still have not gotten a denial letter. However, she did say that she

could go ahead and see if we could get a 30 day supply sent to us. I told her

that I had spoken to 2 people from the company-one person knew that our ins was

going to deny GH treatment and the other who didn't. I told her it was a bit

frustrating on my end because I felt like I had to keep repeating myself. She

said she would follow up on that for me. I also plan on moving Ian from his

daycare. I went to pick him up last week and he was crying, 2 little boys had

been picking on him and he finally had it and poked one of them in the eye with

his finger!! They had told him " that he was going to up to hell " . Can you

believe that?? I didn't get that part out of him until we got home & were

talking more about it. then I went to pay his fees on Monday and the director

told me the fee increase was not going to be the $3 she had told me,but $30 more

a week!! I asked her to check into it and she got back to me on Weds and said,

yes the fee was going to go up $30. I knew that was ridiculous, so called a

nearby mom who does home childcare and made arrangements for him to go there

after school gets out. I spoke to his teacher about this change and she told me

she had recently seen a change in his behavior, that he was becoming more

aggressive and not so nice. I honestly think it is due to the children at the

daycare picking on him. So, I spoke to the director about this. I explained

that I probably will be moving him and do you know what she said to me?? She

said Has he been hanging out with different kids at school?? Well, all children

get picked on at some point or another and we just can't avoid it all the time.

I was so mad, but I kept my cool. If I feel as a parent that my child can and

will be treated somewhere else, then you had better believe I will do what I can

to change the situation. I do not want my child being hurt, physically or

emotionally because of the insensitivity of other kids. yes, I know I can't

always be there, but Ian does comment about these children teasing him and not

wanting to include him. The teacher even told me that she had noticed the

others ganging up on him and she tries to divert it. OHH!! I was soo #$%#$!!

Missy mom to Ian-5 yrs old

---------------------------------

March 1, 2000

, Thanks for the support!! Tonights' shot was the worst so far.. Andy

won't be back until Friday night, so his dad & stepmom came by to help me give

Ian his shot and boy did I need it. Ian sat on his grandma's lap and screamed

and cried and sweated bullets. She had to tuck his legs between her legs so he

wouldn't squirm away, but I know it did hurt because he wouldn't relax his leg

muscles. I tried the counting down bit, his grandpa stood in front of him doing

funny things with Ian's GI Joe trying to make him laugh, but all Ian could do

was scream he was not ready for the shot and I had better not do it yet. It was

very difficult for me to go ahead & give it to him, I had to really try to

detach myself from it and try not to get too upset. I can only hope I am doing

the right thing, so it's nice to hear some kind words because I am trying not to

think about him crying. I am hoping I'll hear from him later down the road

THANK YOU instead of Why did you give me those shots all the time??Missymom to

Ian-5 yrs

---------------------------------

March 1, 2000

Dear Missy,

Hang in there! I haven't had to give shots to my own child yet so

I'm speaking only from my nursing experience. In my experience with my

newer dialysis patients the longer I give them to think about it the worse

it is on them. I'm always honest with them cause needles do hurt but the

quicker the better for some patients. The more tense they are the more it

hurts. Like I said I haven't had to give Josh shots yet & I'm sure I'll cry

the first couple nights, but you are right to detach- you are acting in his

best interest even though it hurts and he doesn't entirely understand why he

needs them. Be strong, & tuff before the shot & comforting & motherly after!

- Mom of (13mons) & (3yrs)

March 2, 2000

Missy, do you have an Injectease? It really helped Max get over his fear of

shots because you can't see the needle. All you do is put the syringe into the

holder, press a button and the shot is over. I think you have to ask your

doctor for it.

Jodi

re:GH