Re: Anyone heard about Synagis shot?

[Guest guest]

HI Amy,

Your letter rings a bell to 6 years ago. My son was 2, then 3, and very sick.

He was sick for almost 2 years before a diagnosis. I was so depressed and

overwhelmed to the point I felt the doctors thought I was a mother who made her

child sick. There was no one at the time I could turn to because I didn't know

what he had. I never heard of an immune deficiency!! It was a terrible couple

of years getting used to IV treatments. It was horrible. Seeing my child sick

and in pain was more than I could bare! Nobody else had heard of it either and

it was hard to face this alone.

I am so grateful for the immune deficiency foundation and this e-mail group. It

has been such a blessing to be able to share our stories and we can all relate

to one another. Prayer has also helped me through all of this. My son is now

almost 10 and has been getting IVIG for 6 years!!!! I can't believe how the time

has past. It still isn't easy, especially when he gets poked, but I am so

grateful for the treatment, and he has fairly good health now.

We all feel your sadness, and have been there. Just know that we are all

praying for you and your family, and are here for you!! Things will get better

with time. I never thought they would for me, but they have. I trust in God

and this is all in his hands.

Sending a big hug your way!!

Temme-Mom to Dylan-12, and Hunter-CVID

Anyone heard about Synagis shot?

Well, life is crazy as usual and I am emotionally, physically and

spiritually drained! I am not sure I can take much more!

contracted some sort of viral rash and fever this week and it is

really taking its toll. He is still not sleeping at night and the

soonest we can get a sleep study done is October. His PED has

decided that she will ask our insurance to cover monthly Synagis

shots from October to March of this year which supposedly boost IgG

levels and protect from respitory infections like RSV. These shots

are for premature and " high risk " infants, but I have never heard of

them before. Does anyone know about these? Side effects? Are they

safe? I dont know. I am just so tired of sickness - if I hear

about another ilness, germ, infection, fungus or anything I might

LOSE IT!!! UGH! Our teenager suffers from severa Asthma, and at his

school physical last night our PED asked me if I knew he had a case

of ringworm????! Well, supposedly he got it in CA (when he was

visiting hisa real mom) and our neighbor told him about it two days

ago, and not he, the neighbor, or his real mom bothered to tell me -

well he has been handling the baby regularly, and imagine my

surprise! I am fuming over the whole thing. With s compromised

imune problems, I dont need him getting anything else. I am not

ready to be a full time mother to a teen, and lately I am not sure I

am cut out to even be s mother! I went to bed last night in

tears, I am so stressed and tired of discovering a new infection on

what seems like a weekly basis! Does it ever end? Anyway, sorry to

vent, I am deeply depressed. goes back next week to see if he

responds to the prevnar vaccine again - we had no response last

time. The Immuno said IVIGs might be in our future - I hope our

insurance covers that. I just wish I could get through one week

without being told about ANOTHER infection! The tunnel gets longer

and longer with no end in sight. Anyone with any info on this shot

would be greatly appreciated. Thanks for listening and God bless

all your little ones!

Amy :-( (Mother to , 17 months old, PID GERD)

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Amy, I'm sorry you are feeling overwhelmed. When I read your post -- I

can't imagine any other appropriate response for you except to feel

overwhelmed. These are really hard days!

Let me take your post one step at a time.

Amy wrote:

>Well, life is crazy as usual and I am emotionally, physically and

>spiritually drained! I am not sure I can take much more!

>

There's not any way for a Mom to take a " vacation " from the stress. But

there are little things that you can insert in your life to help deal

with the stress. And, really, if you don't -- then the whole family

collapses. In other words -- it's vitally important that you make time

for yourself to decompress as often as possible. For some people that

means putting Dad in charge of everything for one hour each evening so

that you can go to your room and read a novel, or take a bubble bath or

run or whatever you do that you enjoy. This was a must for me when I

had two toddlers. How I looked forward to " Daddy's time " . Or you may

need to hire a babysitter once a week so you and your husband can

connect. When times were really scary around here, and I bought

groceries together once a week. It was just a little thing -- but it

helped to have regularly scheduled adult time. Katy was old enough to

leave at home alone with her older brother so we didn't have to hire a

sitter. Whatever it takes to give you a little breathing room is

going to be important.

>He is still not sleeping at night and the

>soonest we can get a sleep study done is October.

>

My oldest didn't sleep until his 2nd birthday. I thought I was in

combat! By that time I was juggling two. But I lived over it -- and

you will, too. I learned to spend that time in prayer and meditation

instead of screaming inside and hating it. We learned later that

's ears were so painful that he could sleep sitting up on my

shoulder -- but not laying down. So, we let him sleep in his car seat

on nights I just couldn't hold him any longer. It's not a permanent

solution -- but it may give you a few hours of sleep.

>His PED has

>decided that she will ask our insurance to cover monthly Synagis

>shots from October to March of this year which supposedly boost IgG

>levels and protect from respitory infections like RSV. These shots

>are for premature and " high risk " infants, but I have never heard of

>them before. Does anyone know about these? Side effects? Are they

>safe? I dont know.

>

Yes, I'm sure the synagis shots are safe if they are used for normal

high risk infants -- the question is -- with his immune system being low

-- you must avoid things that " boost " the immune system for fear of

getting into auto-immune stuff. When the immune

system is " off " then sometimes you can boost it to react to the wrong

things and it attacks good cells as well as germs. Because I am totally

unfamiliar with Synagis shots -- I would really prefer that you run it

by an Immunologist that works with PIDs because there are a lot of

things that are great for the normal population that are not good for

our kids. The Consulting Immunologist Program is a wonderful support

for doctors who want to discuss such things. That number for your

doctor to call is 1-877-666-0866.

> I am just so tired of sickness - if I hear

>about another ilness, germ, infection, fungus or anything I might

>LOSE IT!!! UGH!

>

Yes, it feels that way. Probably everyone on this group has been there.

But, you know what -- when the going gets tough -- we all seem to come

up with another notch of energy and courage and strength to be the Moms

that God has called us to be. I can remember falling in bed at night

and telling my husband I was too tired to lift my head. But when that

" Mamma! " call comes ten minutes later -- who's the first one up?????

> Our teenager suffers from severa Asthma, and at his

>school physical last night our PED asked me if I knew he had a case

>of ringworm????! Well, supposedly he got it in CA (when he was

>visiting hisa real mom) and our neighbor told him about it two days

>ago, and not he, the neighbor, or his real mom bothered to tell me -

>well he has been handling the baby regularly, and imagine my

>surprise! I am fuming over the whole thing.

>

Have you set down with your older son and taught him about 's

problems? Sometimes we assume that they are not interested when in

fact, they would feel honored to be included and would love to do

something to help. It sounds like you need to enlist his help. I'm

not certain that your older son even knew what ringworm is -- it

certainly wouldn't look " contagious " to a teenager! Working with a

teenager is always tricky even when they grow up under your care. But,

connecting with them is just as vital as getting them medical care.

Keep working on ways to communicate and things will gradually find a new

normal.

> With s compromised

>

> immune problems, I dont need him getting anything else. I am not

>

>ready to be a full time mother to a teen, and lately I am not sure I

>am cut out to even be s mother! I went to bed last night in

>tears, I am so stressed and tired of discovering a new infection on

>what seems like a weekly basis! Does it ever end? Anyway, sorry to

>vent, I am deeply depressed.

>

I hear that loud and clear. That's why I want you to sit down with your

husband and possibly your teenager if that's possible and discuss ways

to take some of the stress off. It's going to take team-work in your

family if you all are going to survive this. Transitions are always

hard, but complicating it with medical problems is way past over-load.

I hope by now that you've had time to take a deep breath and realize

that life IS worth living and there will be a time when you look back on

this terrible time and realize that you have survived. If you continue

to feel depressed you need to talk with your family doctor about it.

He/She may want to give you medication to help you cope with this

particularly painful period of getting the diagnosis for and

transitioning to parenting a teen-ager. Both of those are worthy of a

major depression -- so ask your doctor for help if you need it.

> goes back next week to see if he

>responds to the prevnar vaccine again - we had no response last

>time. The Immuno said IVIGs might be in our future - I hope our

>insurance covers that.

>

Try not to bite off everything at once. Take things one at a time. A

lot of times when we feel out of control it is because we don't

concentrate on one thing at a time. In a mindfulness seminar I attended

to help Katy reduce her stress level, the instructor asked each one of

us to take a single raisin and chew it and to clear our minds of

anything except thinking about the raisin in our mouths - the texture,

the taste, the experience. She challenged us to start enjoying the

little bits of our day. 's hugs. When you are feeding him -- are

you really experiencing the full joy? When you hold him -- do you focus

on him or is your mind traveling at light speed wondering about the

future. Try to rein in your brain and force it to enjoy the little

moments that make up a day. That has really helped me when I feel

overwhelmed.

But, you raised a question about the future -- will the insurance cover

IVIG? There are numbers to call and people to contact if your insurance

doesn't cover it. There are resources to help you -- but let's take one

thing at a time. And the most important thing right now is to get Amy

feeling better.

> I just wish I could get through one week

>without being told about ANOTHER infection! The tunnel gets longer

>and longer with no end in sight. Anyone with any info on this shot

>would be greatly appreciated. Thanks for listening and God bless

>all your little ones!

>

>

Amy, you live in a wonderful time period when we now know how to give

these kids a wonderful life. There's no reason to give up hope. If he

needs IVIG, you'll adjust to that. He may outgrow all this illness.

But CVID is not a death sentence. It means he'll have to be more

careful about certain " germy " activities -- but he'll adjust to it and

so will you. I promise you, it's not a bad life. And there's lots more

joy to come -- skinned knees and broken arms just like all the other kids!

I'm sitting here praying for you right now -- praying for your peace and

comfort and yes, a little joy thrown in!

In His service,

Dale

[Guest guest]

Amy,

Davin is two now(as of May 21) and last november

through April he received the synagis shot monthly to

keep RSV either away or mild. It is rare for a

child(of normal immune response) to get RSV when

receiving the shot, but Davin was not normal. He was

in the hospital in December with RSV but the shot did

keep him from being hospitalized long term. We will

not get it this year because he is over the age of

two, so I am concerned that he will be ill again. As

of side effects, we didn't notice any. It didn't keep

him from getting everything else, or RSV for that

matter, so I am not 100 % that it really helped much.

Davin was born with asthma so we deal with lung

infections and his breathing regularly. I don't know

if this helped, but thought I would chime in.

Care

=====

Care Arrasmithmommy of is(6). Sebastian(3 years) and Davin(2 years)

__________________________________________________

[Guest guest]

Dear Amy:

I've been less-than-even-lurking lately, trying to adjust to this every day

Kindergarten thing!! But I just had to respond to your post.

I'm sorry things are so overwhelming right now, and I thought I'd pass along

a couple of things that have helped me. I have a little phrase I say in my

mind at moments of high stress or aggravation -- this is more when the kids are

being crazy and I'd love to scream and yell but know that's not the right

response, " Lord give me strength. " I'll say it in my head 20 times in a row if

necessary, but it just calms me at some point, like now that I've asked for help

it has to come.

Then the really really big help, when things are so crazy I just want to cry

my eyes out and crawl in a corner, when I think I can't take any of it

anymore, I go in a dark (to avoid seeing anything that will distract you, like

trim

that needs painting or laundry that needs folding, etc.) room and look up and

open my eyes and crying the whole time I " give " it all to God to handle. I say,

" God, please take my fear. God, please take my stress. God, please take my

feeling that I don't know what's going to happen next... " etc. etc., whatever

you are feeling. A list of hundreds of things if you like! The first time I did

that I was just so desperate for relief from all the negative emotions I was

feeling. I was absolutely amazed when I dropped my head back down and found

myself so relaxed and at peace, I just knew I had given it all to God. (sorry

about that, God!) I figure, He can handle it better than I can, and right now I

can't handle it at all!!!! It was amazing how that helped.

Anyway, the other thing is that sometimes we absolutely HAVE to get a break.

For me, I need to be out of the house, not take a break in earshot of all the

commotion or whatever. I go to Starbucks and read some of a book or magazine

with a DECAF cappucino for one hour, and I'm like a new person. Once when there

really wasn't time for me to leave or was sick and could have needed

me, I left DH in charge and went in our bedroom with EARPLUGS and read.

Or if it's during business hours I'll go to a thrift store and look for

treasures. That way, I'm satisfying my jones for shopping but not breaking the

bank. Anything great I find I feel like a genius because I got it for a song.

I suppose I could go for a walk instead, but I never have! And it's not that

often, unfortunately, but if you need it you have to ASK for it or demand it

if necessary. I use the term " burned out " with my husband " Honey, I'm feeling a

little burned out and really need a Starbucks night " , because that's a term

he's familiar with and puts stock in.

Or I'll have my MIL do it -- she's very understanding of needing a break. It

doesn't happen often but when it does it changes your whole outlook. We don't

have a " sitter " yet, haven't found anybody yet. I don't even know what the

going rate is!! But we're limping along with this method just fine.

I will never forget the stress though, back when was younger and

sicker. I hope your son improves like my daughter has.

Right now I'm waiting for that first shoe to drop -- 's been in K for a

whole week and I just know some illness or another is right around the corner

-- hard to convince my mind to be grateful for our current health and not

anticipate the turn. She woke up with a very sore throat Saturday and I figured

that was it, but she was fine later!!!!

Well, I hope some of that helps. And if you continue to feel depressed,

please ask for medication from your doctor, or find someone to talk things

through

with on a weekly basis. There are social workers that have sliding scales that

are very affordable. During a very rough period of my life I took Prozac for

almost a year, I'm convinced it saved my life. It got me far enough out of the

cellar I was able to handle and work through things (in therapy with one of

those low-cost social workers!), then I went off of it and have been great ever

since! I firmly believe that stress does something to the chemical balance in

your brain. Just my opinion but I think it's a wise move to take the

initiative to put that balance back if you're really suffering.

Hope that helps!

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)