Checking in...

March 1, 2012

My son Justus, now 4, made the change from ivig to sub-q today! We switched

because he was having bad reactions to the ivig. The infusion went great. No

reaction yesterday aside being sleepy on and off all day. The nurse trained me

and will come to our house to walk me through another. It was not as bad as I

had pictured in in my head. The numbing cream works so well for my little guy

that he didn't even feel the little pokes! It was a good day.

We just found out yesterday, it was a big day, that his 7 yo brother

will start infusions this month. We have been just hitting him hard with

antibiotics when he has an infection and just monitoring because his #'s seemed

to be rising and we we hoping he was outgrowing the deficiency. has had

the hardest to get rid of sinus infection as of late and our immune decided that

switching the antibiotic again didn't make since because this last round of

testing showed a dip in his Igg and he's lost some of his titers to pneumovax.

(@7 he started with zero, gained 10 upon the vaccine challenge, and now those 10

are falling) I still hope they can outgrow this, but it sure is starting to feel

like it's sticking around....

Anyway, at least the boys will have a buddy to infuse with. I also have big, big

hope for a healthier future.hopefully this gets us on track and past all these

darn infections. I know all of you can relate when I say I am terrified of all

the germs out there we can't fight on our own. It will be a relief to get those

#'s up to a more protective level...I doubt I'll ever stop worrying about germs,

though;)

Thanks for the guidance and support over the last year,

Liz

March 1, 2012

Do keep in mind it is not so much the IgG number but the function of the immune

system. Sometimes the number is hollow or empty and is deceiving. I think the

research is showing more and more that you have to dig deeper and look at

function and that is why there are so many more Immune Deficiency diseases that

are being identified. We really know so little about how the body uses the

integrated system to protect itself. When my 16 year old son was diagnosed in

the mid 90s there were about 30 disease identified. I know now with research

that they have identified over 150 variations. I hope one day with a blood test

they will be able to identify which ones and how to best treat them. I also hope

it will be MUCH shorter a time than 10 years to diagnose kids so that they do

not have suffer for all of those years. I know for my son his developmental,

mental and emotional health was severely thwarted by not getting a diagnosis and

treatment at an earlier age. But we are in a MUCH better place than we were 40

years ago when more kids died from the disease. Just keep advocating for your

kids, getting to LARGER Univeristy setting or Childrens Hospitals for evalutions

when things do not seem to be going well or CHANGING doctors when you are not

being able to communicate with them. It is how we better the system as we go.

BARBIE Lucas 16 CVID, Bipolar etc.

From: pencesiding@...

Date: Thu, 1 Mar 2012 12:27:07 +0000

Subject: Checking in...

My son Justus, now 4, made the change from ivig to sub-q today! We

switched because he was having bad reactions to the ivig. The infusion went

great. No reaction yesterday aside being sleepy on and off all day. The nurse

trained me and will come to our house to walk me through another. It was not as

bad as I had pictured in in my head. The numbing cream works so well for my

little guy that he didn't even feel the little pokes! It was a good day.