Update, opinion and question

[Guest guest]

Hi Guys,

here, relatively new member. I posted for the first time 1-2

weeks ago and introduced my daughter Jillie age 23.5 months of age

with RSS. She has a GT, fundoplication and is on prilosec and

periactin. When we saw Dr H at convention last yr, I was scolded for

making her too fat. She's been on a weight maintenance program since

last July.

I officially saw Dr H for the first time this Thursday. She was

thrilled with her ht/wt ratio and started her on growth hormone that

day. I was very surprised as I thought we'd hve to wait longer. She

also changed the dose of periactin she was on, changed her formula

and the hrs per day she was to have GT feeds and commenced miralax. I

was thrilled to finally get to the " right doctor " for Jillie. It has

been a struggle for the past almost 2 yrs to have to make the best

guesses for her care with physicians who just don't have the

experience. I felt very relaxed with Dr H - she intinctively knew

what Jillie needed.

Anyway. My humble opinion on GT's is for many kids unable to grow

well they are a godsend. There are occasional problems with them

(leakage, skin not healing etc). I am able to feed very sick babies

and children but could not feed my own daughter. Getting the GT made

me much more relaxed knowing she was getting what she needed to grow

even if she didn't care or was incapable. Jillie has always been well

nourished and healthy looking because of the GT.

A question. What is the earliest an oral maxillo facial surgeon would

do anything about teeth crowding and her small jaw? She will need

much surgery to align and expand her jaw I suspect.

And to Debbie, Mollie's Mom. I sent you my number and email

privately. Let me know if you havn't gotten it.

Best wishes,

[Guest guest]

,

I am curious about your daughters height and weight now. My daughter is just a

little older and though the G tube is putting on the weight her wieght to height

ratio is still non existent!!

As a Dr. H fan myself, I know what kind of pressure it relieves to FINALLY have

someone understand and take action! Congrats to you both!!

Dayna, Mom to Alyssa, 29 months, 23lbs, 32.5inc

[Guest guest]

-- I ditto what Alison said. At around 3-4 years of age,

you should be able to make an appt with your nearest Children's

Hospital's Craniofacial Team (will be comprised of multiple

specialists). But speaking from experence, what may look like

crowding may not need surgery. I thought for sure would

need major help, and although our orthodontics bill will be

astronomical for a couple of years, they don't believe that surgery

will be needed. But you have YEARS to wait until you have to worry

about that!!! I am glad things are going so well for you.

URGENT - I just noticed that your email address listed

below is different what I have. Dr. Harbison just emailed me a list

of patients for whom updated email addresses were needed, and

Jillian's name was on the list. Can you email me privately and let

me know what email address you want Cornell to send you an official

email???

Thank you!!! Salem

> Hi Guys,

>

> here, relatively new member. I posted for the first time

1-2

> weeks ago and introduced my daughter Jillie age 23.5 months of age

> with RSS. She has a GT, fundoplication and is on prilosec and

> periactin. When we saw Dr H at convention last yr, I was scolded

for

> making her too fat. She's been on a weight maintenance program

since

> last July.

>

> I officially saw Dr H for the first time this Thursday. She was

> thrilled with her ht/wt ratio and started her on growth hormone

that

> day. I was very surprised as I thought we'd hve to wait longer.

She

> also changed the dose of periactin she was on, changed her formula

> and the hrs per day she was to have GT feeds and commenced

miralax. I

> was thrilled to finally get to the " right doctor " for Jillie. It

has

> been a struggle for the past almost 2 yrs to have to make the best

> guesses for her care with physicians who just don't have the

> experience. I felt very relaxed with Dr H - she intinctively knew

> what Jillie needed.

>

> Anyway. My humble opinion on GT's is for many kids unable to grow

> well they are a godsend. There are occasional problems with them

> (leakage, skin not healing etc). I am able to feed very sick

babies

> and children but could not feed my own daughter. Getting the GT

made

> me much more relaxed knowing she was getting what she needed to

grow

> even if she didn't care or was incapable. Jillie has always been

well

> nourished and healthy looking because of the GT.

>

> A question. What is the earliest an oral maxillo facial surgeon

would

> do anything about teeth crowding and her small jaw? She will need

> much surgery to align and expand her jaw I suspect.

>

> And to Debbie, Mollie's Mom. I sent you my number and email

> privately. Let me know if you havn't gotten it.

>

> Best wishes,

>

>

[Guest guest]

Hi Dayna,

Jillie is 21 lbs, 4oz and 30.75inches. I havn't plotted it out yet

on a wt for ht chart but Dr H says she's just right so I'm not going

to argue. Alyssa doesn't seem that far off from Jillie's

measurements. Is she on GH? Have you had the GT long? Is she on

periactin??

Best wishes,

> ,

>

> I am curious about your daughters height and weight now. My

daughter is just a little older and though the G tube is putting on

the weight her wieght to height ratio is still non existent!!

>

> As a Dr. H fan myself, I know what kind of pressure it relieves to

FINALLY have someone understand and take action! Congrats to you

both!!

>

> Dayna, Mom to Alyssa, 29 months, 23lbs, 32.5inc

>

>

>

[Guest guest]

,

We are not on GHT yet, but the G Tube was placed about 6 months ago and she has

been on periactin for over a year now. We certainly see the difference, but

have to give her a break now and then as it loses it's effect after awhile.

Alyssa certainly isn't too far off. THis gives a little more perspective on

when Dr. H may want to talk about GHT. Thanks so much, and it's great to have

you here!

Dayna, MOm to Alyssa