: ER visit last night

[Guest guest]

Hey eveyone,

Yesterday afternoon jesse started spitting out blood and then he blew his

nose it was all blood. I called his Plum. dr and he sent us to Childrens and

Womens ER. They did a chest xray and blood work to see it he was losing lots

of blood. The xray was normal for him and the lab work should that he wasn't

bleeding out anywhere. Actually the dr said that his hebglobin was better

then hers. So we now have him on Nasonex nose spray and Zrytec for his

siniuses. was on that before but it didn't work for him.Anyway, its

great that it isn't anything real serious but adding another problem for him

by having sinius problems. No wonder he has been having bad headaches. I

think this makes him taking 9 meds in the morning now plus his mtx weeking

and enbrel injections twice weekly and also the break through pain killer as

needed and his Flovent inhaler. His poor little body has more chemicals in it

then anything else.

just wanted to fill you all in.

shelly

[Guest guest]

poor jesse, glad it was nothing serious!!!hope the meds work for him this

time.

Kathy

[Guest guest]

,

What a blessing is ok, my heart sank when I started reading your email.

Thank goodess it was anything more serious. It's such a shame he has to go

through any of this. I hope he gets feeling better soon.

Tina

[Guest guest]

what a horrible thing to happen poor little guy must have been scared

to death. i'm glad he's alright though and here i thaught i had a bad

day. nothings worse than a sick child.

love and squishes to jesse

rhoda

> Hey eveyone,

>

> Yesterday afternoon jesse started spitting out blood and then he

blew his

> nose it was all blood. I called his Plum. dr and he sent us to

Childrens and

> Womens ER. They did a chest xray and blood work to see it he was

losing lots

> of blood. The xray was normal for him and the lab work should that

he wasn't

> bleeding out anywhere. Actually the dr said that his hebglobin was

better

> then hers. So we now have him on Nasonex nose spray and Zrytec for

his

> siniuses. was on that before but it didn't work for

him.Anyway, its

> great that it isn't anything real serious but adding another problem

for him

> by having sinius problems. No wonder he has been having bad

headaches. I

> think this makes him taking 9 meds in the morning now plus his mtx

weeking

> and enbrel injections twice weekly and also the break through pain

killer as

> needed and his Flovent inhaler. His poor little body has more

chemicals in it

> then anything else.

>

> just wanted to fill you all in.

>

> shelly

>

>

>

[Guest guest]

,

I am so glad that it wasn't his lungs. Do you have electric heat? My

entire family had problems with bloody noses with the dry electric heat.

Since changing to gas and putting a humidifier on my system, the problems

have all gone away. I hope his meds make him feel better.

Sinus infections can really make you feel bad.

a

----- Original Message -----

From: <12341234@...>

< >

Sent: Friday, January 26, 2001 6:57 AM

Subject: [ ] : ER visit last night

> Hey eveyone,

>

> Yesterday afternoon jesse started spitting out blood and then he blew his

> nose it was all blood. I called his Plum. dr and he sent us to Childrens

and

> Womens ER. They did a chest xray and blood work to see it he was losing

lots

> of blood. The xray was normal for him and the lab work should that he

wasn't

> bleeding out anywhere. Actually the dr said that his hebglobin was better

> then hers. So we now have him on Nasonex nose spray and Zrytec for his

> siniuses. was on that before but it didn't work for him.Anyway, its

> great that it isn't anything real serious but adding another problem for

him

> by having sinius problems. No wonder he has been having bad headaches. I

> think this makes him taking 9 meds in the morning now plus his mtx weeking

> and enbrel injections twice weekly and also the break through pain killer

as

> needed and his Flovent inhaler. His poor little body has more chemicals in

it

> then anything else.

>

> just wanted to fill you all in.

>

> shelly

>

>

>

[Guest guest]

a,

Yes we do have electric heat. I can't have gas stoves or heat, it triggers

migraines. We are looking into getting some cool air humidifers and one of

those air purifers. If jesse and robert are both having sinius trouble then

it would be cheaper for us to get this stuff then to keep going to the drs

for meds due to infections. Of course jesse gets medicaid so his visits and

meds don't cost anything but robert is covered by bc/bs and we have to pay

20% of the visit and up to $15.00 for meds but still if he needs to keep

going it adds up.

shelly

[Guest guest]

Hi ,

I have been reading all your post, I hope thing settle down for your

little guy soon. No child should have to deal with all that he does. I

believe things happen for a reason, it should a very good reason for .

Maybe he will go into medicine someday, and work with kids. He would be

very good, he could understand every thing that happens to them.

Hope you guys have better days ahead.

Me Mom

----------

> From: 12341234@...

>

> Subject: Re: [ ] : ER visit last night

> Date: Sunday, January 28, 2001 6:38 PM

>

> a,

>

> Yes we do have electric heat. I can't have gas stoves or heat, it

triggers

> migraines. We are looking into getting some cool air humidifers and one

of

> those air purifers. If jesse and robert are both having sinius trouble

then

> it would be cheaper for us to get this stuff then to keep going to the

drs

> for meds due to infections. Of course jesse gets medicaid so his visits

and

> meds don't cost anything but robert is covered by bc/bs and we have to

pay

> 20% of the visit and up to $15.00 for meds but still if he needs to keep

> going it adds up.

>

> shelly

>

>

>

[Guest guest]

,

If they slept with a humidifier in their bedroom, it may help their sinuses.

If they share a room, you only need one to see if it helps. I know all

about those 15.00 co-pays for meds. They really rock the budget.

a

----- Original Message -----

From: <12341234@...>

< >

Sent: Sunday, January 28, 2001 3:38 PM

Subject: Re: [ ] : ER visit last night

> a,

>

> Yes we do have electric heat. I can't have gas stoves or heat, it triggers

> migraines. We are looking into getting some cool air humidifers and one of

> those air purifers. If jesse and robert are both having sinius trouble

then

> it would be cheaper for us to get this stuff then to keep going to the drs

> for meds due to infections. Of course jesse gets medicaid so his visits

and

> meds don't cost anything but robert is covered by bc/bs and we have to pay

> 20% of the visit and up to $15.00 for meds but still if he needs to keep

> going it adds up.

>

> shelly

>

>

>

[Guest guest]

a,

Unfortunately and don't share a room. has his own room

and and Jake share a room and and share a room. One day we

are going to design our own house to accomidate our large family, just don't

know if and could live without sharing a room. goes nuts

all day while is in school.

The only humidifer i have is a hot air one and it makes me so nervous cause 4

out of 5 of the boys sleep walk. I am so scared that they would knock it over

and get burned so iam looking into the cool air one, i mean a couple of them

to put in all the kids rooms. I think everyone would sleep better and it

would help jesse alot. I don't know how much it would help robert until he

has the surgery on his nose but that won't be for a few more years. They

don't like to do it until they are about 16yrs old but if it keeps cause

robert infections then we will do it earlier. Who knows maybe he will break

his nose in football and we won't have to worry about it. Thats what he says

anyway. Its cooler to get it broke then to have surgery. I figure either way

the girls will be falling over themselves to help him. lo. He is a ladies man

for sure.

shelly

[Guest guest]

Rhoda,

your hugs and squishes must have helped jesse cause he is doing much better.

He still has that horrible cough but no more bleeding. Last night he worried

me a bit. He woke up during the night and was complaining that he was hot. He

was sweating but he was ice cold, even the joints that are inflammed were ice

cold. It was very strange so i will be watching him for the next couple of

days. He seems fine this afternoon but this morning was very tired and groggy.

Oh yeah, i finally find a store that sells name brand sneakers

" miss-matched'' is what they call it. Anyway, i got him some Skechers one a

size 5 and one a size 3. They were even on sale. So from now on I will be

going there to get jesse's shoes. It was great to finally find a place that

will do that cause we had to stuff the right shoe with padding and it caused

him to fall alot now he seems much more blanced. I have to get him name brand

cause he wears the left shoe in a matter of a few months and if it wasn't

name brand it would be in a few weeks. They told me that name brand shoes on

kids usually last 4 to 6 months but with jesse they would make sure they had

his sizes availible. They were so great.

shelly

[Guest guest]

Me Mom,

I truely believe you are right about something is in store for jesse. I loves

little kids. mostly babies and toddlers. He has said in the past that he

wanted to be a dr so that he could cure all kids that have a form of JRA. Now

i think he is interested in becoming a specialist for Down Syndrome babies.

Our neighbors who jesse adores had a baby in May of 2000 and she was dx with

Downs. just loves that little girl. He said when she is old enough to

go to the park with him and if anyone messes with her he will beat them up.

and jake and justin all say the same thing about Dakoda. doesn't

get to see her that much. you know he is a teenager and is busy with football

and girls and such but when he sees her and talks to her she is in heavan.

she really likes all the boys and me, well with me she has this instant urge

to poop as soon as i hold her. Her mom says iam the only one that she does

that with so if she ever gets to the point when she can't poop then she will

call me to come and hold her. I guess i don't mind cause it looks like she is

the only girl i will have in my life. lol.

Anyway, will be a wonderful father someday or dr if he chooses that

field. who knows he may become a lawyer to help all the people that need

disability and can't get it. He loves to argue so he would make a great

lawyer.

shelly

[Guest guest]

shelley: must be a delightful child. I hate it everytime I read the

posts about his problems. It just doesn't seem fair but I;m sure he is a

blessing to everyone who knows him. You have so much on your plate, wish I

could help. Will keep praying for all of you.

Jan

[Guest guest]

How old is ????

Kathy in Washington State

[Guest guest]

Kathy in Washington state,

will be 12 in March.

shelly

[Guest guest]

In a message dated 1/31/2001 8:36:37 AM Pacific Standard Time,

12341234@... writes:

>

And has JRA???

Kathy in Washington State

[Guest guest]

Yes Kathy he has Sysmetic JRA. His lungs are diseased due to the JRA.

Sorry i didn't think that you didn't know.

shelly

[Guest guest]

In a message dated 1/31/2001 1:21:22 PM Pacific Standard Time,

12341234@... writes:

> Sorry i didn't think that you didn't know.

>

>

...I just joined the group a few days ago..I was a member a few years

back, though....So, I am not really up on 's story, except from what I

have read these past few days....Do you have RA?

My 5.5 year old daughter had a swollen ankle the other day...I almost

fainted....it makes me so scared to think that she or one of my other two

might have to suffer.....She had twisted it, outside playing...but just to

see a swollen joint, on a child, really blew me away......

How does handle having this disease?? Sorry if I am being nosey!

Kathy in Washington State

[Guest guest]

Kathy in WA state,

No i don't have RA. is the reason iam in this group. To learn more

about the disease and to have the support for myself and for jesse.

I am glad that you re-joined the group. Feb is 1yr that i have been apart of

this group and iam so happy that i found it.

I will tell you a bit about jesse. He is the 2nd oldest of 5 boys. He will be

12 in march. He was born with a club foot so we are not strangers to drs. and

such. At age 4 the shriners hospital in tampa fl sent us to H. Lee Moffit

Cancer Insutsuite for testing on jesse. The tested for every thing. The only

thing that they found was a very high RA factor and told us that he had JRA

and that we could see our family dr for his treatment. At the age of 5 1/2 he

was not eating well or going out to play. He was usually sleeping as soon as

school got out. He always had labored breathing and he was not growing at

all. He weighed in at 29 1/2 pounds the dec. before his 6th birthday. I was

worried so i took him to all childrens hospital in ST. Pete fl. and they

tested him for everything too except for the JRA cause that was very clear

that he had it. every joint in his little body was swollen and with him being

so small you could see everything. The dr decided that there was something

wrong in his chest xrays so she ordered a ct scan and found that the upper

lobes of his lungs were diseased and that he lymphnodes on the outside of his

lungs and a very big one on his treacea. We then decided that he should have

a lung byopsy done and that it confirmed what the dr had feared. He has

Systemic JRA involving his lungs. She said that there was very few children

that get Systemic JRA as bad as jesse had it.we started him on Naporxen, mtx,

folic acid and steroids to get him out of flare he had been in for over a

year. He use cry all the time. The pain was so great that he couldn't go to

the bathroom by himself.

we moved to vt for a year after my brother died in 96 and that was a mistake.

was miserable. no matter what we did he was in pain and sick all the

time.We moved back to fl and then to alabama. We have now found a wonderful

Rhuemy for jesse. He treats jesses JRA aggressively (which no one has done

before). takes 8 pills in the morning and 4 at night plus a

breakthrough pain med and 12.5 mgs of mtx a week and enbrel twice a week.

Since we started him with this dr, jesse goes out to play and is a completely

different child even though he is flaring now and his lungs aren't working

real well at the moment. The only trouble we have here is the school but now

that i have a law suit againist them things are lots smoother. Still trying

to get the homebound services put into action and its real slow moving.

has his good days and his bad days with his feelings. He hates being so

small cause all his girlfriends are taller then him. He gets frustrated when

he can't or isn't allowed to play rough sports or keep up with his brothers.

He hates taking all those meds and at times will refuse to take them(sort of

a way to have some control on his life) Now that he is older he is better

about taking his meds.When he hurts alot he will say " i hate my life, i wish

i was never born " or " I wish i would just die now and end the pain " He hasn't

said those words much in the last year cause this is the best he has felt

since he was about 3 yrs old. He is very smart. Too smart alot of the time.

you look at him and you can see that mind moving and wonder what is he up to

now and then he looks at you with those blue eyes and smiles with big ole

dimples and you know he is up to something. He is very compassionate and

loves little kids. He tries to take care ofmom when she is sick too.

All in all i would say jesse deals very well with his disease except when it

comes to his limitations.He doesn't like to be told he can't do something

that he really wants to do. One of these days iam going to post pics of all

the boys so that everyone can see my handsome brood.

There is jesses story. iam sure i have left lots out but you will learn more

about him as each day passes.

sure hope you are feeling ok.

shelly and