CVID, puberty, and constant low-grade illness and co-pay woes

[Guest guest]

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty