Re: multiple issues in same family

[Guest guest]

Hi ,

My name is , and we most definitely deal with more than one thing in our

happy home. Not only does my 3 1/2 year old daughter Audrey have juvenile

arthritis (leaning toward a psoriatic diagnosis) but my 2 1/2 year old son has a

form of epilepsy called infantile spasms. He's actually doing fairly well - he

has been completely off meds for almost a month, but has some developmental

delays from the seizures. At one point we had Bryce on 3 meds and Audrey on 3

meds. I felt like I was a walking pharmacy, so I totally understand.

In our case, we don't think they are related in any way. Bryce's seizures were

just a fluke thing that came up, although we do wonder about Audrey's arthritis.

There is a very STRONG history of auto-immune disease in our family (me, my mom,

and her brother, plus her paternal grandfather) so it makes us wonder. But we

just keep plugging away and hopefully someday will have healthy children.

-- " CHRISTINA LINCOLN " <chrislinc@...> wrote:

Hello!!!

I think there are a couple of Sam's, but if you are referring to Sam L., he's

doing so fantastic!!!! It's been about 6 weeks now and the change is remarkable!

He has not complained of pain once. We are even weaning him off his steroids. He

was taking 4cc twice a day.. now he's on 4 in the am and 1 in the pm. Once we

knock out the evening dose, we'll start alternating the am dose (4 one day, 3

the next... then after a week, we'll do 4 and 2.. and so on) until he's

completely off. I can't express how happy we are to finally see him enjoy what 5

year olds should be enjoying. Everyone thinks he's already started to grow, but

I think it's because he's standing up straight now. He used to walk like an 80

year old man, but now he's standing tall with his chin up.

We did miss a dose last week, his little cousin got a hold of the syringe that I

had laid out on the counter to warm up before giving to him and he squirted it

out (thank god that's all he did with it). Unfortunately I was supposed to pick

up his new prescription the following day so he had to go without that night.

And don't you know the next morning he woke up stiff and sore! I couldn't

believe that just one missed dose could affect him like that. I ran out first

thing and gave him his shot and in about 4 hours he was back to himself.

Off the subject, I was wondering if anyone out there has experienced another

child with a different disorder. I know the two aren't related, but my 2 year

old has Autism. I guess my husband and I have bad genes (hahaha). Oh well, we

managed to create two magnificent little boys and I wouldn't trade them for

anything. I'm curious because I wonder how others handle it. As you know caring

for just one child with a disease is a handful.. but two is a big challenge.

With completely different issues, these boys give me a run for my money.

Thanks Colleen for asking about Sam. Did I read that you were attending the

summit? My husband and Sam will be attending (unfortunately, I'm starting a new

job and won't be able to go), but only the day of the visit to meet the Senate

folks.

I wish everyone my best and will keep all our children in my prayers!!!

(mom to Sam, 5 years, systemic JRA)

Sam Update?

Hi-

Just wanted to see how Sam is doing? Last I heard he was doing well after a few

days into the kineret.... I'm hoping things are going well.

Best hopes-

Colleen (mom to Caitlin)

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

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

,

Like , I also have 2 kids each with their own issues. My oldest has

arthritis, congenital heart defects, and scoliosis. She is 12 and had open heart

surgery when she was 5 days old then dx with JRA when she was 8 and dx with

scoliosis at age 12. My 8 year old daughter has Tourette's Syndrome. For me the

key is to be organized. If you saw my house you would definately NOT think of me

as organized but as far as the medical stuff is concerned I have learned that I

HAVE to be organized. So far, the oldest child is the only one taking meds but

the younger one may need them eventually. Elaney (12) has 9 doctors and we are

always going to the doctor. I have a huge binder for her and it goes with us to

all appointments. Even to the dentist's office. Elyssa's (8) binder is much

smaller but it also goes with us to all appointments. Everytime I get a letter

from the dr, appointment card, test results, etc. I put them into the binder. I

also write down everything the dr says at

each appointment and keep it in the binder. It has really helped me. Also,

having a site like this is great for when you need to vent. I need to do that

from time to time. I also would not trade my kids for the world!! I love them

with all my heart. However, it really is a challenge raising them.---

" newmom2003@... " <newmom2003@...> wrote:

Hi ,

My name is , and we most definitely deal with more than one thing in our

happy home. Not only does my 3 1/2 year old daughter Audrey have juvenile

arthritis (leaning toward a psoriatic diagnosis) but my 2 1/2 year old son has a

form of epilepsy called infantile spasms. He's actually doing fairly well - he

has been completely off meds for almost a month, but has some developmental

delays from the seizures. At one point we had Bryce on 3 meds and Audrey on 3

meds. I felt like I was a walking pharmacy, so I totally understand.

In our case, we don't think they are related in any way. Bryce's seizures were

just a fluke thing that came up, although we do wonder about Audrey's arthritis.

There is a very STRONG history of auto-immune disease in our family (me, my mom,

and her brother, plus her paternal grandfather) so it makes us wonder. But we

just keep plugging away and hopefully someday will have healthy children.

-- " CHRISTINA LINCOLN " <chrislinc@...> wrote:

Hello!!!

I think there are a couple of Sam's, but if you are referring to Sam L., he's

doing so fantastic!!!! It's been about 6 weeks now and the change is remarkable!

He has not complained of pain once. We are even weaning him off his steroids. He

was taking 4cc twice a day.. now he's on 4 in the am and 1 in the pm. Once we

knock out the evening dose, we'll start alternating the am dose (4 one day, 3

the next... then after a week, we'll do 4 and 2.. and so on) until he's

completely off. I can't express how happy we are to finally see him enjoy what 5

year olds should be enjoying. Everyone thinks he's already started to grow, but

I think it's because he's standing up straight now. He used to walk like an 80

year old man, but now he's standing tall with his chin up.

We did miss a dose last week, his little cousin got a hold of the syringe that I

had laid out on the counter to warm up before giving to him and he squirted it

out (thank god that's all he did with it). Unfortunately I was supposed to pick

up his new prescription the following day so he had to go without that night.

And don't you know the next morning he woke up stiff and sore! I couldn't

believe that just one missed dose could affect him like that. I ran out first

thing and gave him his shot and in about 4 hours he was back to himself.

Off the subject, I was wondering if anyone out there has experienced another

child with a different disorder. I know the two aren't related, but my 2 year

old has Autism. I guess my husband and I have bad genes (hahaha). Oh well, we

managed to create two magnificent little boys and I wouldn't trade them for

anything. I'm curious because I wonder how others handle it. As you know caring

for just one child with a disease is a handful.. but two is a big challenge.

With completely different issues, these boys give me a run for my money.

Thanks Colleen for asking about Sam. Did I read that you were attending the

summit? My husband and Sam will be attending (unfortunately, I'm starting a new

job and won't be able to go), but only the day of the visit to meet the Senate

folks.

I wish everyone my best and will keep all our children in my prayers!!!

(mom to Sam, 5 years, systemic JRA)

Sam Update?

Hi-

Just wanted to see how Sam is doing? Last I heard he was doing well after a few

days into the kineret.... I'm hoping things are going well.

Best hopes-

Colleen (mom to Caitlin)

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

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Wow , you and your girls sure have been on quite a journey! What a

terrific idea you gave me... I get so overwhelmed with all of the information...

then add school paperwork on top of it (both have IEPs) and I feel hopeless.

I am about to start work again and I'm terrified that I'm going to lose

control.. also we are building a house and should be moving in late March. I

guess I just need to focus and I'll get through it.

Thanks for sharing also!

Sam Update?

Hi-

Just wanted to see how Sam is doing? Last I heard he was doing well after a

few days into the kineret.... I'm hoping things are going well.

Best hopes-

Colleen (mom to Caitlin)

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

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Hi all,

Had to chime in on this. Mom of 2 here and 10 years apart is

challenging enough. lololol. 1 boy 1 girl.

Both had Asthma which I got use to with my son. So with it wasn't as

hard to deal with. Before was born I had dealt with My Elders who had

conditions I learned from. I thought I could handle anything after caring

for them. WRONG lolol. JRA put me on a whirl spin. But as with everything else

I got to where I could handle this as well. As with any Medical condition

thing's can happen unexpected.

Once I took having JRA in. I started as always researching and

learning about it. Knowledge is the best you can do.

As with Asthma those attacks just pop up no warning. I figuired out what

would trigger them and avoided that. Strange how 1 small thing can trigger a

attack. Handled it and now JRA how do I handle this. I thought.

It was hard at first. As I knew nothing about it. As I read I learned though

and listening to others.

I knew there was not anything I could do to stop it. So I had to go with

the flow. One day at a time. I researched Family. As this helped keep my

mind on something positive as you understand alittle at a time.

I spotted a lot which related back to Family genes. I then checked out as

far back as I could what each Family member had. Was this Gene related?

There's a good chance it is. Was it a Immunatization shot given? Possible. Was

it

something my Hubby or I caused? No

I looked into the related issues. Found out what related was Immune

System Diseases. When I looked more and deeper. I related what my Family had to

being Immune System disease. But How was it joining together. As each disease

had different affects on the body.

Well I read more and watched , My Son and hubby and those family

members. It was watching ways they had to how they held a spoon. I wanted to

know all I could. I looked at pictures of Family. Writing or typing what I

found down. Ok now the puzzle was coming together. Yes a Puzzle. lololol

How many had Arthritis issues and what kind. Who had Heart Disease. Who

had Asthma. Who had features like . Who had a different walk. Even to

who had blonde hair and brown hair. lolol To eye color. As some didn't match

up well. But during the whole thing I did find more than info I was looking

for. I found a way to take each day one day at a time. As this JRA is like

many. It pops up when it wants. You can have a bad flare which seems to last

many weeks. Then light flares which last a few days to a week.

I learned to write down day to day things did. Was it what she

ate which made her worse? I looked for someway to make thing's better for

. was involved with this as well. 2 heads are better than 1

right?

Some diseases will run female to female and some male to male. Then you

have those which only go female to male and male to female. Which generation

is the jumper and which will run each generation?

I wondered Ok Mom had Arthritis my link was Mom and a generation

jump. Then I looked at my hubbys side. His Mom also had Arthritis. So this was a

Generation jump on both side. Hubby's sister all had Arthritis. But 1 has

Pain as a child along with another Sister had Rhuematic fever. So I wrote this

down.

My Siblings are all younger than me so on my side it was hard to get a good

thinking on this. But going back and asking little questions determined My 3

sister down couldn't walk for 9 months. No one knows why. This sister has

multiple Medical issues now. So later I researched her.

To make this short. My Conclusion is living everyday to the fullest as

with any Disease. Worrying about it can put a toll on a person. I have a bad

habit of saying ok I will walk it off. has taken this as well.

If you want to tracing the links to JRA look for Immune System Diseases.

Diabete's, Heart Disease, Arthritis in the Family. Genes can jump 1 Generation

or 2. It can run female to female or Male to male. Then again it can run Female

to male or male to female. I have all my information. I add to it as I go.

Might not help me much but I know it will help later with my Siblings kids and

my own grandkids if I am lucky to have 1. But deep down I have learned to

write anything down that is Medical related to the family.

Robbin

[Guest guest]

Hi, .

I also have two children with different health concerns. My 13yo

daughter, , has asthma and allergies. She takes several

medications daily and immunotherapy injections every 2 weeks. My 11yo

daughter, Miranda, has multiple issues. She was diagnosed with

Bipolar Disorder at the age of 5. (She is not off all psyche meds and

doing remarkably well in that respect. I believe she was

misdiagnosed.) She also has Myotonic Muscular Dystrophy (a mild

variant, it runs in the family). Now she also has JIA. So, Miranda

sees her doctors more often than now, but it hasn't always

been so. She is taking about as many medications as .

(Between the 3 of us, I pay about $500/month on prescription copays.

I am a walking pharmacy. No doubt about it.) I sometimes joke that at

least it is only one child at a time that seems to have a problem.

Except for last July 4th when both of my girls ended up in the ER

with pneumonia at the same time! That was a joy. I had 2 children in

beds next to each other, both sick, and had to keep their medical

information sorted out for the nurses and doctors without the benefit

of having brought their medical files along. We were out shopping

when the wheezing began.

But of course I love them both. Somehow we make it through each

medical crisis. We have been fortunate. I keep a medical file on each

child, and try to keep it updated after each appointment. It is

really the only organized part of my life! My house is a mess, but

who really cares?

Sheila

(Miranda, 11, JIA/MMD)