Re: Isaac's first trip to the ER..VENT...Long

[Guest guest]

Mimi-

Wow - sounds like a horrible experience! Your son sounds very brave. I think it

is so hard to sit by and watch your child go through painful experiences. I

hope the infection passess and that Isaac is better soon! Big Hugs to you all!

Jane, mom to - 12 months, approx 14#, 26 " , Gavin and Aidan

[Guest guest]

Mimi-

Wow - sounds like a horrible experience! Your son sounds very brave. I think it

is so hard to sit by and watch your child go through painful experiences. I

hope the infection passess and that Isaac is better soon! Big Hugs to you all!

Jane, mom to - 12 months, approx 14#, 26 " , Gavin and Aidan

[Guest guest]

-- Hi MimI, I am so glad he is o.k. We went through a scare w/

like that when he was 2 for 4 days in the hospital and found

out it was Double Pnemonia UGH I am glad he is doing good, we have

fighters for kids! Hugs and hope your srtess is easing E-mail me

if you want to chat Hugs

- In RSS-Support , " fairiegirl98 "

<fairiegirl98@y...> wrote:

> Hey everyone-

>

> Today has been so stressful..just needed to share. Isaac has only

> had an ear infection so this was his first " sick " visit to the

doc.

> Isaac started running a slight fever last night and it

progressivley

> got worse. I called first thing and his regular pediatrician was

on

> vacation so we had to see one of his associates around 10:15 this

> morning. She sent us to the ER because she suspected possible

> menengitis..the only reson she didn't call an ambulance is because

> his vitals were good. Once we got to the ER the doc order all

kinds

> of tests. Of course they wanted to IV liquids and blew out a vein

in

> each of his hands so they had to put the IV in his head. They did

> some chest X-rays, took blood and did a spinal tap. My husband

> stayed through all of it, and I cried outside of the room with my

> mother because you could hear his screams all the way down the

hall.

> We left the ER at 5 pm and the diagnosis was a viral infection and

> dehydration. I thank God that it wasn't something so serious but

my

> poor son was once again a pin cushion. I asked the nurse who was

> doing the IV if there was a numbing spray they could use and she

> said at that age they really didn't " feel " anything..they just got

> upset at being tied down...which we all know is a lie..I was so

> angry..and then the doctor kept telling us it was just dehydration

> and we finally asked him why he would have a fever and THEN he

said

> oh..that's a viral infection..ugggh! I told the nurse and the ER

doc

> about his Silver and Hypothyrodisim and neither batted an

> eyelash or made a comment. This is supposed to be the best

> children's hospital in our area..anyway..sorry for ranting It is

> just really hard to see all bandages in each hand, the hole in his

> forehead(from the IV) and the bandaid on his spine from the tap..I

> can't even touch him without him crying.

>

> Thanks so much for listening..

>

> Mimi

> (mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

> oz, 22 3/4 " )

[Guest guest]

Mimi,

I'm so sorry you and Isaac had to through such an ordeal. Glad he does not

have menigitis but still I'm sorry you had to deal with it all.

Hope you have a smoother weekend,

Henry(RSS, 4yrs, 39in, 32 1/2 lbs)

( nonRSS, 8yrs, 48in, 45lbs)

[Guest guest]

I will just speak for myself but i went through the same thing several times a

month with my son and constantly being put in the hospital. I do know how you

feel. I however got to a point i told then the number of chances they had to

stick my son before I would say you are not touching him again. Get some one in

here like nicu nurse that knew how to stick small children. They use to get mad

at me but i did not care. They do not know anything about rss that is why they

ignored you that is what i have found to be trun in my experience is the ones

that do not ask questions or respond to you that they are doing this because of

the fact they know something that rss kids need . then they say nothing because

they do not know anything. That is my opinion.

fairiegirl98 wrote:

Hey everyone-

Today has been so stressful..just needed to share. Isaac has only

had an ear infection so this was his first " sick " visit to the doc.

Isaac started running a slight fever last night and it progressivley

got worse. I called first thing and his regular pediatrician was on

vacation so we had to see one of his associates around 10:15 this

morning. She sent us to the ER because she suspected possible

menengitis..the only reson she didn't call an ambulance is because

his vitals were good. Once we got to the ER the doc order all kinds

of tests. Of course they wanted to IV liquids and blew out a vein in

each of his hands so they had to put the IV in his head. They did

some chest X-rays, took blood and did a spinal tap. My husband

stayed through all of it, and I cried outside of the room with my

mother because you could hear his screams all the way down the hall.

We left the ER at 5 pm and the diagnosis was a viral infection and

dehydration. I thank God that it wasn't something so serious but my

poor son was once again a pin cushion. I asked the nurse who was

doing the IV if there was a numbing spray they could use and she

said at that age they really didn't " feel " anything..they just got

upset at being tied down...which we all know is a lie..I was so

angry..and then the doctor kept telling us it was just dehydration

and we finally asked him why he would have a fever and THEN he said

oh..that's a viral infection..ugggh! I told the nurse and the ER doc

about his Silver and Hypothyrodisim and neither batted an

eyelash or made a comment. This is supposed to be the best

children's hospital in our area..anyway..sorry for ranting It is

just really hard to see all bandages in each hand, the hole in his

forehead(from the IV) and the bandaid on his spine from the tap..I

can't even touch him without him crying.

Thanks so much for listening..

Mimi

(mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

oz, 22 3/4 " )

[Guest guest]

Hi Mimi,

I'm so sorry you and your family had to go through all that.

Braeden has been to the ER several times and I'm at the point now

where I won't let them run a barrage of tests unless they actually

have an idea what they are looking for.

My rule of thumb is if they don't get the first try on getting an IV

or blood draw, I request a NICU nurse. There is a numbing agent

they can put on a child's skin. I don't recall what it is but, will

email you when I think of it. The thing is, it has to be applied 30

minutes prior to the draw which is probably why they didn't use it.

I hope Issac is feeling better soon! It is so frustrating dealing

with dr.'s who don't know your son. Although, there are some great

doc's and nurses out there, I sometimes feel, since Braeden is so

little, some think they can do what they want because he can't say

anything and he will get over it.

I have been told that the head is actually the least painful spot

for IV/Blood draws. Braeden get's his monthly blood draws from his

head. Although, it looks/sounds awful, he does seem to do better

when he gets the draw from his head rather than his foot/hand.

Take care,

Saundra, Mom to Braeden (RSS) and Delaney 23 month twins

> Hey everyone-

>

> Today has been so stressful..just needed to share. Isaac has only

> had an ear infection so this was his first " sick " visit to the

doc.

> Isaac started running a slight fever last night and it

progressivley

> got worse. I called first thing and his regular pediatrician was

on

> vacation so we had to see one of his associates around 10:15 this

> morning. She sent us to the ER because she suspected possible

> menengitis..the only reson she didn't call an ambulance is because

> his vitals were good. Once we got to the ER the doc order all

kinds

> of tests. Of course they wanted to IV liquids and blew out a vein

in

> each of his hands so they had to put the IV in his head. They did

> some chest X-rays, took blood and did a spinal tap. My husband

> stayed through all of it, and I cried outside of the room with my

> mother because you could hear his screams all the way down the

hall.

> We left the ER at 5 pm and the diagnosis was a viral infection and

> dehydration. I thank God that it wasn't something so serious but

my

> poor son was once again a pin cushion. I asked the nurse who was

> doing the IV if there was a numbing spray they could use and she

> said at that age they really didn't " feel " anything..they just got

> upset at being tied down...which we all know is a lie..I was so

> angry..and then the doctor kept telling us it was just dehydration

> and we finally asked him why he would have a fever and THEN he

said

> oh..that's a viral infection..ugggh! I told the nurse and the ER

doc

> about his Silver and Hypothyrodisim and neither batted an

> eyelash or made a comment. This is supposed to be the best

> children's hospital in our area..anyway..sorry for ranting It is

> just really hard to see all bandages in each hand, the hole in his

> forehead(from the IV) and the bandaid on his spine from the tap..I

> can't even touch him without him crying.

>

> Thanks so much for listening..

>

> Mimi

> (mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

> oz, 22 3/4 " )

[Guest guest]

hi mimi!!

i feel for you!! when christopher was 5weeks old we all got sick

with a virus, he had a fever and because of his age they had to do

the spinal tap to rule out menengitis. i remember very clearly

watching them do it to his little body and how horrible i felt for

taking him to a birthday party with us 2 days earlier only to find

out after getting there that the birthday girl had a virus and they

had the party anyway (didnt bother telling anyoone , we found out

when she left her own party early because so was so sick). i cried

too the whole time they did it!! but remember he is now safe and

ok. good luck and i hope he feels better soon!!

jodie c.

-- In RSS-Support , " fairiegirl98 "

<fairiegirl98@y...> wrote:

> Hey everyone-

>

> Today has been so stressful..just needed to share. Isaac has only

> had an ear infection so this was his first " sick " visit to the

doc.

> Isaac started running a slight fever last night and it

progressivley

> got worse. I called first thing and his regular pediatrician was

on

> vacation so we had to see one of his associates around 10:15 this

> morning. She sent us to the ER because she suspected possible

> menengitis..the only reson she didn't call an ambulance is because

> his vitals were good. Once we got to the ER the doc order all

kinds

> of tests. Of course they wanted to IV liquids and blew out a vein

in

> each of his hands so they had to put the IV in his head. They did

> some chest X-rays, took blood and did a spinal tap. My husband

> stayed through all of it, and I cried outside of the room with my

> mother because you could hear his screams all the way down the

hall.

> We left the ER at 5 pm and the diagnosis was a viral infection and

> dehydration. I thank God that it wasn't something so serious but

my

> poor son was once again a pin cushion. I asked the nurse who was

> doing the IV if there was a numbing spray they could use and she

> said at that age they really didn't " feel " anything..they just got

> upset at being tied down...which we all know is a lie..I was so

> angry..and then the doctor kept telling us it was just dehydration

> and we finally asked him why he would have a fever and THEN he

said

> oh..that's a viral infection..ugggh! I told the nurse and the ER

doc

> about his Silver and Hypothyrodisim and neither batted an

> eyelash or made a comment. This is supposed to be the best

> children's hospital in our area..anyway..sorry for ranting It is

> just really hard to see all bandages in each hand, the hole in his

> forehead(from the IV) and the bandaid on his spine from the tap..I

> can't even touch him without him crying.

>

> Thanks so much for listening..

>

> Mimi

> (mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

> oz, 22 3/4 " )

[Guest guest]

Mimi,

Oh how awful that must have been for you. I was getting tears in my

eyes while I was reading it, because it is ALL too familiar with me.

has been through so much, and I am the one that always ends up

being with him, so I know exactly waht it is like. I cry when he

gets stuck too. I have learned that IV's are way too hard to get

into him, especially since he was in the hospital the first three

months of his life, and had an IV for most of that time. So, all of

his veins were blown, and to this day, they are very damaged. So, I

make sure there is someone form the NICU that is better at working

with these situations to do them. has had several IV's in his

head. To this day, I can see the scares on his hands and feet form

the IV needles! Makes me squimish just looking at them. I am glad

to hear that Isaac didn't have Menengitis though. What a relief. He

will probably have a hard time for a while getting over what he has

been through, because I know always did, but soon he will be

back to his normal, wonderful self. I am so sorry you had to go

through all of that. Isaac is such a cutey. Give him a hug for me

would you? )

Jodi R.

> Hey everyone-

>

> Today has been so stressful..just needed to share. Isaac has only

> had an ear infection so this was his first " sick " visit to the doc.

> Isaac started running a slight fever last night and it

progressivley

> got worse. I called first thing and his regular pediatrician was

on

> vacation so we had to see one of his associates around 10:15 this

> morning. She sent us to the ER because she suspected possible

> menengitis..the only reson she didn't call an ambulance is because

> his vitals were good. Once we got to the ER the doc order all kinds

> of tests. Of course they wanted to IV liquids and blew out a vein

in

> each of his hands so they had to put the IV in his head. They did

> some chest X-rays, took blood and did a spinal tap. My husband

> stayed through all of it, and I cried outside of the room with my

> mother because you could hear his screams all the way down the

hall.

> We left the ER at 5 pm and the diagnosis was a viral infection and

> dehydration. I thank God that it wasn't something so serious but my

> poor son was once again a pin cushion. I asked the nurse who was

> doing the IV if there was a numbing spray they could use and she

> said at that age they really didn't " feel " anything..they just got

> upset at being tied down...which we all know is a lie..I was so

> angry..and then the doctor kept telling us it was just dehydration

> and we finally asked him why he would have a fever and THEN he said

> oh..that's a viral infection..ugggh! I told the nurse and the ER

doc

> about his Silver and Hypothyrodisim and neither batted an

> eyelash or made a comment. This is supposed to be the best

> children's hospital in our area..anyway..sorry for ranting It is

> just really hard to see all bandages in each hand, the hole in his

> forehead(from the IV) and the bandaid on his spine from the tap..I

> can't even touch him without him crying.

>

> Thanks so much for listening..

>

> Mimi

> (mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

> oz, 22 3/4 " )

[Guest guest]

It is past midnight so I don't have time to read everyone's

responses to you, so apologies up front if I repeat anything.

It is very important for you, and anyone else reading this, to

always carry the blue RSS brochure (or SGA brochure if your child is

SGA) with you at all times. Katy and I put them in each convention

folder, and ANYONE, even non-members, can call MAGIC for a free copy.

This brochure should be handed to any physician in an ER.

Secondly, EVERYONE should call MAGIC and get a copy of H-43, the

letter from Dr. Harbison. This has instructions for physicians in

times like yours when a child is sick and not eating.

Third, I have been researching the " spray " can't remember the name

right now. Although some parents had success, it is NOT wildly used

for a lot of reasons that I can't go into right now.

HOWEVER, No child should have to have an IV put in without EMLA or

ELA-MAX. Most pediatric floors in hospitals have them, most ERS do

not. I made that mistake in Kentucky in July after the convention,

when my own daughter had to have the IV put in and she kept begging

for her " numbing cream " and I didn't have any. I know put it in the

glove compartment of the car and my travel bag.

ELA-MAX can be purchased over the counter and you can just keep it

for cases like this. Your doctor or nurse that said a baby can't

feel it -- NUTS!!!! We all know that yes, they scream because you

are holding them down, but the more they scream and tighten up, it

DOES HURT!!!! If a child is relaxed and calm, absolutely the IV

doesn't hurt as much. Oh, I want to strangle that ER person for

you. I am so sorry that you all had to go through this.

EVERYONE, remember that the key thing that these ER docs will keep

referring to is " dehydration " . That is NOT the scary part for our

kids -- often times they will be hydrated, they can keep water down

but won't eat FOOD. For an underweight RSS/SGA child, not EATING is

the horrendous part. Read MAGIC articles #H-43, and also H25 and H-

27 as well, as they explain it so much better about ketone spilling,

etc. All of these documents were written by Dr. Harbison, and then

it sounds MUCH MORE PRofesional to the ER doc when you hand them the

literature.

Again, I am so sorry for what you went through. Hope Isaac is doing

better.

Salem

> Hey everyone-

>

> Today has been so stressful..just needed to share. Isaac has only

> had an ear infection so this was his first " sick " visit to the

doc.

> Isaac started running a slight fever last night and it

progressivley

> got worse. I called first thing and his regular pediatrician was

on

> vacation so we had to see one of his associates around 10:15 this

> morning. She sent us to the ER because she suspected possible

> menengitis..the only reson she didn't call an ambulance is because

> his vitals were good. Once we got to the ER the doc order all

kinds

> of tests. Of course they wanted to IV liquids and blew out a vein

in

> each of his hands so they had to put the IV in his head. They did

> some chest X-rays, took blood and did a spinal tap. My husband

> stayed through all of it, and I cried outside of the room with my

> mother because you could hear his screams all the way down the

hall.

> We left the ER at 5 pm and the diagnosis was a viral infection and

> dehydration. I thank God that it wasn't something so serious but

my

> poor son was once again a pin cushion. I asked the nurse who was

> doing the IV if there was a numbing spray they could use and she

> said at that age they really didn't " feel " anything..they just got

> upset at being tied down...which we all know is a lie..I was so

> angry..and then the doctor kept telling us it was just dehydration

> and we finally asked him why he would have a fever and THEN he

said

> oh..that's a viral infection..ugggh! I told the nurse and the ER

doc

> about his Silver and Hypothyrodisim and neither batted an

> eyelash or made a comment. This is supposed to be the best

> children's hospital in our area..anyway..sorry for ranting It is

> just really hard to see all bandages in each hand, the hole in his

> forehead(from the IV) and the bandaid on his spine from the tap..I

> can't even touch him without him crying.

>

> Thanks so much for listening..

>

> Mimi

> (mom to Isaac (super-brave boy) hypothyroidism, RSS 8 mos 11lbs 9

> oz, 22 3/4 " )

[Guest guest]

Mimi,

I don't know if you want to do something like this or not, but you

can call the hospital and ask for a survey regarding your visit with

your child to the ER for comments. (Or you can just send a letter)

Our children's hospital sends them every time we have a surgery done,

so I know they have them.

I would be furious too, I'm sure you were! Good job not choking that

nurse!!!lol ; )

Blessings, & glad to here he is feeling better!

Carmen, mom to Storm, 9

[Guest guest]

Mimi,

We're glad you and Issac made it through this. Sorry that you had to ,though.

I know what you mean about people staring through you when you mention RSS. I

had this happen recently, too, although in a much less intense situation. It

was like they though I made up a syndrome. Very strange.(and very annoying)

Good luck to you all.

Kathy ( Jack, 5, non-RSS and Willie 3 1/2, RSS, Periactin, zantac, 23 lbs,33

" )