Re: Trialing off

March 1, 2012

Have you redrawn her titers to the immunizations? Revaccinate and challenge her

system to respond. Unfortunately Macey nor Les get much sinus help from

infusions. They both did maintenance antibiotics which kept those infections

from draining down into chest infections.

Ursula

On Mar 1, 2012, at 11:58 AM, le Mina <daniellemina@...> wrote:

>

> Tristen, 7 was on subq for 3 years. She seemed to be doing better so we

decided to trial her off infusions. It's been 7 months and at first she was ok,

got mild sinus infections once a month, but now she's had more serious sinus

infections/bronchitis. The last 2 times she was off antibiotics for a week and

was sick again. (I'm trying to decide if she's failing the trial off or if it's

more to do with it being winter that she's sick more.) Her immuno and pedi

aren't convinced the infusions worked the first time around and aren't sure she

should go back on them. They both said it was my decision and I feel infusions

are the route to go, but I'm having a hard time making that decision on my own

without the backup of the dr's. Part of the issue is her IgG is within normal

range, but on the low side, mid 600's. That's what her numbers were before we

started infusions and that's what they are again after 6 months off infusions.

I did see a 2nd

> immuno at Stanford who was the one who said let's trial her off and her local

immuno agreed. I think it may be time to go back to the Stanford immuno and get

her opinion and maybe she will be the one to support my decision. I wish this

was easier!

>

> How do you know when you've failed your trial off?

>

> Just for reference: How often do your kids get sick while on treatment?

Tristen was still getting sinus/lung infections but they weren't so severe and

usually 1 round of antibiotics would clear it up.

>

> Thanks,

>

> le

>

March 1, 2012

My 6 year daughter madeline had been constantly sick from 3 mo old. The illness

would require 20 days of rx at a time would clear 90 percent of the way and

would come right back in 4 days, would turn from a sinus infection to a chest

infection.... She had staph/ strep infections but mostly sinus that would cause

her asthma to be so bad and chronic that it sounded like or was overtaking her

with lung congestion. She spent almost every winrer month in and out of the

hospital averaging 4 says at a stay. She was constantly on prednisone every

month and each time we would taper her it would get worse. She was on Iv pred

oral pred for 6 mo it was terrible. She was only well in the summer and that's

when she would get the skin infections instead that would land her on Iv rx in

the hospital. She was always tired and always had belly pains. She had a

stroller wheel chair because walking more than 4 minutes would cause the belly

and fatigue issues. After 2 IVIG 's her belly pain and fatigue were gone.

After her 2 nd IVIG she went 2 winter ki this with no rx and then had a simple

virus that went away in four days. Never had a simple virus ever. After 1 1/2

mo of IVIG she did get a cough / congestion that wouldn't go away so she took rx

but only ten days and has had 0 asthma complications and 0 prednisone doses

since beginning IVIG and SCIG.

Hope this helps at all. Mad's IVIG levels are in 300's and she made her pnemo

titters but they dropped quickly to low normal. Her doctor ran an avidity test

which showed the titters that were there we're not even working. They were all

in the zero range. Hope this helps at all for some comparison.

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