Re: I'm freaking out a bit...

[Guest guest]

Hi ,

I would absolutely take him to see Dr H and the sooner the better.

was 2 yr 4 mo and weight about 16 pounds when we placed his

gtube. He is now 5 yr 1 mo and weighs 32 pounds. He looks like a

normal health boy (but one about 4 instead of 5).

I can't help with the hypospadius (as didn't have that

problem), but there are plenty of others here who have dealt with it.

If you would like my phone number, feel free to email me directly.

Hang in there,

Judith, Steve, (RSS, gtube, periactin, zantac, prilosec,

mirelax, and just starting Risperdal) and (non RSS) 5 year

old twins

[Guest guest]

Hi ,

I understand your feelings of being confused and overwhelmed. This

board is full of wonderful people with great ideas. However, you

have to take it one issue at a time. Don't try to tackle it all at

once, or it will be too much to handle. There are others here that

can give you the actual sequence of what your priorities should be.

I won't attempt to act like I know that much. HEHEHE I'm still

learning too. Take a deep breath. You are doing the best that you

can for .

I can't help much with the feeding tube issues, but I am quickly

becoming all too familiar with the hypospadias concerns. Coby is

2.5 yrs now. He has had 3 repairs done so far. He had stage 3

hypospadias. His first surgery was done when he was 8 months old

and weighing 12.13 lbs. His second surgery was at 14 months old

weighing 17.3 lbs and his last surgery he was 20 months and weighted

19.4 lbs.

The surgeries all went very well. Unfortunately, they were not

completely successful. I believe that no matter his size he would

have needed 3 surgeries. Although, I also believe that if we would

have waited it would have been more successful. Coby will require

at least one more surgery to repair his hypospadias completely.

But also remember that he had a VERY sever hypospadias. There are

many other families that have had wonderful results from just one

surgery.

MAGIC has an article on hypospadias and the protocols.

As for the emotional impact the surgery will have on him, I think

that is something we deal with no matter what their age. Coby was

so young, but he is still very guarded in that area. I have to be

very gentle changing his diaper or it upsets him. I think that

psychologically they will react to the surgery and disorder the way

we do. We have always taken a very medical approach to it with Coby

and his siblings. We tell his big brother and sister (and Coby and

Carlee when they are old enough to understand) that when he was born

his " urethra " , where his pee'pee comes out, was in the wrong spot

and the docs had to do the surgery to put it in the right spot.

This has seemed to be enough to satisfy my older children.

My big hurdle is potty training. The doc says to wait until the

repair is complete to potty train. But with Coby being a twin and

his sister is potty training and he wants to as well, I really don't

have a choice. I try to make sure Coby stays to a normal

development schedule. Luckily so far he has been just a few months

behind Carlee. (breaking from the bottle, walking, and now potty

training) Coby has to sit to potty so we make sure if he goes in

the restroom with Daddy or Bubby they sit down to potty as well so

that he doesn't get confused.

I'm sorry this has been so long. I hope it helps. I am here

anytime you want to talk. Any questions you have, no matter what

they are, please just ask. And remember, Hypospadias is VERY

COMMON! There is at least 1 case of hypospadias in every school and

after the repair not even a doc could go into that school and pick

out which child it was that had had the repair.

Take care and hang in there,

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twin terrors!

[Guest guest]

hey sonia!!

i would keep the appt you have in june for dr h this way any tests

she needs to run can be done then(she cant do that at convention)

you 'll be on track then and will hopefully feel better!! email me

me any time if you need to vent or just talk you can even give me a

call!! what date is your appt? maybe we can meet up? ((HUGS)) to

you!!! hang in there!!!

jodie c

[Guest guest]

,

I can completely relate, I think we all have those nights that we just sit

up and worry about our kids, because there are so many things to worry about. I

emailed Jenn S about this just a couple of days ago. We just have to be

the advocate for our children, and see doctors that we are comfortable with. I

am considering seeing Dr. H in New York once a year and at the convention,

then seeing a local endo the other 2 times a year.

As far as the hypospadius surgery, it's not that bad, Datreon recovered very

quickly, like with in the next 24 hours, he was moving around crawling

everywhere. He only weighed about 9lbs when he had his first surgery, and we are

having his third on July 1st, and he is still only 16lbs. I don't know if he

is going to have numerous surgeries, but the recovery gets better with each

one. If you just need to talk feel free to email me privately, I know exactly

how you feel.

le mom to Datreon, RSS, 18months, 16lbs 2oz, 27in

[Guest guest]

Hi ,

If it's possible - go see Dr " H " . She will look at and tell

you exactly what you need to do to maximize his health. You are doing

the best you can to make him healthy and grow but you will feel more

empowered when she gives you the specialist knowledge needed to make

an RSS kid grow.

Ask her for a reduced office visit rate if your insurance company

will not pay. She will do it if she can.

Best wishes,

>

> Hi Everyone,

>

> It could be that it's almost midnight, but I've got myself worked

up

> to tears again after reading some recent messages. I lurk here now

> and then, but don't often post for various reasons.

>

> My concern is this: I too have been debating over whether or not to

> take to New York to see Dr. Harbison. I actually have an

appt.

> with her late June, but figured perhaps I should just wait until

> after convention (we ARE going). It is not likely my insurance

> (Kaiser) will cover it, but I am determined and will find a way to

> pay whatever we have to. I am just so worried that should

be

> doing better but I still feel like I have no way to gauge it. He

has

> been getting the synagis shot for RSV and when they weighed him

last

> week he weighed 15 lbs 6 oz. He is 20 months (will be 21 months on

> April 3rd). At his last pediatrician visit his head circumference

> and height hadn't grown much and the doctor said he had sort

> of " plateued " . He referred me to a food specialist who we'll see

on

> 3/30. He sees a gastroenterologist off and on (appt 3/30), and I

had

> to ask this doctor for periactin (of course he had no idea if it

> would help - but said " what the heck " ). I started on it

> about a month ago, and it seems to help his appetite, but

again...I'm

> not certain it's enough.

>

> I know some folks here have chosen (or their doctors have

> recommended) g-tubes. After hearing how well the kids do with them

> (and the mother who said drs. believed her child suffered

> neuroglogically because of malnutrition pre-tube) I am so worried

and

> afraid I and his physicians can be doing more for him.

>

> And so much for an endo...the one he saw told us she didn't even

want

> to see him again until he was 3. I know I should have pushed the

> issue or pursued seeing a different one, but I thought maybe the

> endos only help with ght and he was still too young...but now he's

> almost 2.

>

> I just feel so confused and helpless. This board is full of

valuable

> information, but when I visit and read it frightens me, so I avoid

it

> for a while. A lot of the recent discussions have been very

relevant

> to my current situation so I was compelled to write...and seek your

> input/advice.

>

> Thanks for all the suggestions for sleep/stress/etc. too...I have

> been feeling very fatigued lately and thought something might be

> wrong with me physically (I still wake up to feed 2x a night

> though)...but I'm sure hormones,poor diet,lack of exercise, etc.

are

> contributing factors...it is so comforting to know I am not alone!!

>

> I feel better already just getting this off my chest...I should go

to

> bed!

>

> Thanks so much,

>

>

> P.S. I'm also stressing over his severe hypospadias which Kaiser

> won't operate on until he weighs 20 lbs...God knows how much longer

> that will be and I worry about the emotional impact the surgery

will

> have on him!

>

> Mom to 5 1/2 (non RSS) and 20 months (Prilosec,

> Periactin, rotated small intestine, asymmetry, hypospadias)

[Guest guest]

,

I know that a lot of people have answered you, but I just wanted to say that

I know how you feel, just being so tired and nervous. I would strongly

suggest you see Dr.H in June. We had another doctor at Mt. Sinai, but since

we started seeing her we feel so much better. Jonah is 3.5 and weighs about

17.12, but Dr. H. has held off on a tube because he does eat and likes to

eat. We still may have to, but she increased his Periactin and has helped

with his constipation and this has helped his weight. I guess what I am

trying to say is that Dr. H. takes each case individually; she does not just

have one deal for all. In the last month, Jonah was hospitalized with a

stomach virus and then caught a bad cold, so life has been about checking

Ketones and nagging about eating.

Jonah had the hypospadius surgery done at Cornell by a doctor recommended by

Dr. H who was amazing!!! We were lucky because he only needed one surgery.

I think it was harder on us then on him. It is amazing how kids bounce

back. He was up and playing the next day in the hospital playroom. Our

doctor was Dr. Poppas. We did wait for Jonah to gain some weight, but

obviously we did it before 20lbs, we did it last April.

Anyway, sorry to ramble on, but just know that you are not alone. The fact

that you feed a few times a night is great. Dr. H. said that the

best thing we did and still do is feed Jonah in the middle of the night.

Take good care

I'm freaking out a bit...

>

>

> Hi Everyone,

>

> It could be that it's almost midnight, but I've got myself worked up

> to tears again after reading some recent messages. I lurk here now

> and then, but don't often post for various reasons.

>

> My concern is this: I too have been debating over whether or not to

> take to New York to see Dr. Harbison. I actually have an appt.

> with her late June, but figured perhaps I should just wait until

> after convention (we ARE going). It is not likely my insurance

> (Kaiser) will cover it, but I am determined and will find a way to

> pay whatever we have to. I am just so worried that should be

> doing better but I still feel like I have no way to gauge it. He has

> been getting the synagis shot for RSV and when they weighed him last

> week he weighed 15 lbs 6 oz. He is 20 months (will be 21 months on

> April 3rd). At his last pediatrician visit his head circumference

> and height hadn't grown much and the doctor said he had sort

> of " plateued " . He referred me to a food specialist who we'll see on

> 3/30. He sees a gastroenterologist off and on (appt 3/30), and I had

> to ask this doctor for periactin (of course he had no idea if it

> would help - but said " what the heck " ). I started on it

> about a month ago, and it seems to help his appetite, but again...I'm

> not certain it's enough.

>

> I know some folks here have chosen (or their doctors have

> recommended) g-tubes. After hearing how well the kids do with them

> (and the mother who said drs. believed her child suffered

> neuroglogically because of malnutrition pre-tube) I am so worried and

> afraid I and his physicians can be doing more for him.

>

> And so much for an endo...the one he saw told us she didn't even want

> to see him again until he was 3. I know I should have pushed the

> issue or pursued seeing a different one, but I thought maybe the

> endos only help with ght and he was still too young...but now he's

> almost 2.

>

> I just feel so confused and helpless. This board is full of valuable

> information, but when I visit and read it frightens me, so I avoid it

> for a while. A lot of the recent discussions have been very relevant

> to my current situation so I was compelled to write...and seek your

> input/advice.

>

> Thanks for all the suggestions for sleep/stress/etc. too...I have

> been feeling very fatigued lately and thought something might be

> wrong with me physically (I still wake up to feed 2x a night

> though)...but I'm sure hormones,poor diet,lack of exercise, etc. are

> contributing factors...it is so comforting to know I am not alone!!

>

> I feel better already just getting this off my chest...I should go to

> bed!

>

> Thanks so much,

>

>

> P.S. I'm also stressing over his severe hypospadias which Kaiser

> won't operate on until he weighs 20 lbs...God knows how much longer

> that will be and I worry about the emotional impact the surgery will

> have on him!

>

> Mom to 5 1/2 (non RSS) and 20 months (Prilosec,

> Periactin, rotated small intestine, asymmetry, hypospadias)

>

>

>

>

>

>

>

>

[Guest guest]

,

You sound like I feel. It's been a horrible couple of weeks around here, as

you know. Willie is sick and losing weight.

Willie had surgery on his penis also. It wasn't hypospadius but ventral

chordee repair. The urologist had us wait until he was in the 50% for a 6-month

old. He was 2 1/2. It was difficult but worth it and didn't seem to bother him

as much as you would think. There is a fantastic urologist here in Sacramento

(Dr Shapiro).

Willie only weighed 18 pounds when he was almost 3. We didn't know it was

RSS. I worried about what I'd let happen to him with lack of calories those

first few years. He had a bunch of cognitive testing done last fall and was

above average. So I got to stop worrying about that.

It gets so hard when we focus on all the possible problems and worry about

everything. And especially with the lack of sleep. I've been up too. Willie is

sick. Call me anytime.

Sending my best to you and . Oh, Willie's head plateaued too. It was

way huge then kind of averaged out.

Hang in there. When this rain stops things will look better:)

Love, Kathy

[Guest guest]

Hi I was just catching up on the posts and came across yours and it

caught my attention of the hypospadias , my son has that and has had

two surgeries already ,he had to weigh 12 pounds though to do the

surgery , why are they saying 20? They told me it was for the

anethesia , to weigh enough , we are fixing to have a third surgery

and if you want to talk about it feel free to e-mail me or post to

me ! My son s is going to be 6 on April 8th and it

has been a wild journey !! He weighs now 30.8 pounds and is 39

inches but just a little skinny thing , well just thought I would

respond to this post talk to you soon PS you will

really enjoy the convention and get so much information you will be

in good hands just wait !!! I loved it when I got to go , We aren't

able to go this year though -

-- In RSS-Support , " soniacardinale "

<soniacardinale@c...> wrote:

>

> Hi Everyone,

>

> It could be that it's almost midnight, but I've got myself worked

up

> to tears again after reading some recent messages. I lurk here

now

> and then, but don't often post for various reasons.

>

> My concern is this: I too have been debating over whether or not

to

> take to New York to see Dr. Harbison. I actually have an

appt.

> with her late June, but figured perhaps I should just wait until

> after convention (we ARE going). It is not likely my insurance

> (Kaiser) will cover it, but I am determined and will find a way to

> pay whatever we have to. I am just so worried that should

be

> doing better but I still feel like I have no way to gauge it. He

has

> been getting the synagis shot for RSV and when they weighed him

last

> week he weighed 15 lbs 6 oz. He is 20 months (will be 21 months

on

> April 3rd). At his last pediatrician visit his head circumference

> and height hadn't grown much and the doctor said he had sort

> of " plateued " . He referred me to a food specialist who we'll see

on

> 3/30. He sees a gastroenterologist off and on (appt 3/30), and I

had

> to ask this doctor for periactin (of course he had no idea if it

> would help - but said " what the heck " ). I started on it

> about a month ago, and it seems to help his appetite, but

again...I'm

> not certain it's enough.

>

> I know some folks here have chosen (or their doctors have

> recommended) g-tubes. After hearing how well the kids do with

them

> (and the mother who said drs. believed her child suffered

> neuroglogically because of malnutrition pre-tube) I am so worried

and

> afraid I and his physicians can be doing more for him.

>

> And so much for an endo...the one he saw told us she didn't even

want

> to see him again until he was 3. I know I should have pushed the

> issue or pursued seeing a different one, but I thought maybe the

> endos only help with ght and he was still too young...but now he's

> almost 2.

>

> I just feel so confused and helpless. This board is full of

valuable

> information, but when I visit and read it frightens me, so I avoid

it

> for a while. A lot of the recent discussions have been very

relevant

> to my current situation so I was compelled to write...and seek

your

> input/advice.

>

> Thanks for all the suggestions for sleep/stress/etc. too...I have

> been feeling very fatigued lately and thought something might be

> wrong with me physically (I still wake up to feed 2x a

night

> though)...but I'm sure hormones,poor diet,lack of exercise, etc.

are

> contributing factors...it is so comforting to know I am not alone!!

>

> I feel better already just getting this off my chest...I should go

to

> bed!

>

> Thanks so much,

>

>

> P.S. I'm also stressing over his severe hypospadias which Kaiser

> won't operate on until he weighs 20 lbs...God knows how much

longer

> that will be and I worry about the emotional impact the surgery

will

> have on him!

>

> Mom to 5 1/2 (non RSS) and 20 months (Prilosec,

> Periactin, rotated small intestine, asymmetry, hypospadias)