Re Meningococcal

[Guest guest]

It was one long weekend, and I am glad to be at Monday night with the children

both tucked in bed.

Yes, I found myself worrying over possible pneumococcal meningitis or

meningococcal infection the past few days, but after writing my last post to the

group and then going on to read what I could off the net on meningococcal I was

able to relax on that score. The reason for my worry, besides recent

meningococcal cases here in my area, was began complaining of neck pain

early Saturday., being ok to bend his chin to his chest but not wanting to move

it sideways or tip back at all. As the day wore on he was acting so weird and

being sick already with the pneumonia I couldnt even fathon what was going on.

His behavior was erratic and so excessively active with no signs of enjoyment

from what he was doing, it was distressing to watch. Sunday he attempted to do

much the same but his body just wouldnt do what he wanted of it, and finally he

fell asleep just after 3.30 and remained sleeping until thismorning.

s lungs have not improved since starting antibiotics last Wednesday, and

in fact he is worse off. Today his dr switched antibiotics so hopefully we're

on the right track this time. By the time of my appt I was not worried in the

least it could be meningococcal, of course, but still felt there was every

chance we'd end up in hospital. With any luck that wont be happening.

I was told the neck pain would not be related to the current infection at all,

and cannot even assume it is tied in to swollen glands/sore throat as his throat

is only a little red and although some glands are up, they are not excessive.

Rather that it was more probable it was his neck JOINTS, and this has terrified

me! It seems the rheumatologist has impressed upon our dr that whatever she

works out may be s problem, she regards his case very seriously, and

where I might have been fobbed off when mentioning joint pain in the past, that

is certainly not the case now. There have been mornings this past week

has hopped or hobbled around because his knees hurt so badly. But the neck pain

I would never have thought to explain by arthralgia!

As for s lungs, I have never heard them sound so bad, and I am truly

scared by what all this may be leading to for him in the long term.

[Guest guest]

,

Please know that I am praying for you guys--especially . I just

wanted to mention that the first place my arthritis showed up was my neck.

Even before my fingers! Also, I see a connection with an overload on the

immune system and breathing/lungs. I think PID kids (or adults) have immune

systems that can only be loaded with so much, and then something has to give.

Does that make sense??

Which tests has the Rheumy done on ? Do you know what they are

looking for? I was looking into some of the Polymyositis info, and it

mentions weakness with chest muscles. That would not be a good combination

with asthma or lung infection. If he's not able to move enough air in the

first place, his lungs would be even more susceptible to infection as a

result of lack of oxygen. Do you still suspect Polymyositis?

Hang in there--

Sandi, 's Mom