Re: confusion on fevers

[Guest guest]

Just wanted to add - my son had great responses to Pneumovax at 1 month.  At 2

1/2 months he lost almost all protective levels.  You might want to retest at 3

months, then 6 months. 

________________________________

From: Jefferson <jamie@...>

Sent: Fri, November 5, 2010 12:13:45 PM

Subject: RE: confusion on fevers

 

HI,

He has been to Children’s Oakland for evaluation for IVIG. The immunologist

there ran a lot of tests which turned up the Specific Antibody Deficiency (no

titers to tetanus, prevnar, and one other) and is probably a reason he gets sick

so much. However, when they gave him pnuemovax as a test, he had a great

response (not sure exactly what it was, but that was how it was described to

me). She referred us to rheumatology about the rising ANA numbers and fevers.

She didn’t know the significance of that test, but according to rheumatology,

his limping must be arthralgias and not arthritis because there is no evidence

of it in his joints. (he did have one year long documented auto immune arthritis

episode, SED rate is now within normal range).

After being on this group & reading some postings, I wrote to her and asked to

retest his titer for pnuemovax in six months or a year to see if it holds steady

or if he is losing his responsiveness. They do not think he needs IG at this

time. We are set for retest in November. He has no active sinusitis. He does

have chronic asthma and coughing. He had pneumonia twice last year. I feel like

we/he are sort of on the fence and I don’t know when or which way it will go.

I

was hoping the fevers with no other symptoms was a sign of progress. I will look

into the periodic fever syndrome. I have not heard of it. Also he gets fevers

when it is hot out.

Thanks for your help.

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Thursday, November 04, 2010 10:54 PM

Subject: Re: confusion on fevers

He sounds like he has a classic immune disorder. Has he seen an Immunologist at

a major university or Childrens Hospital setting? How old is he? The symptoms

you describe are the ones most kids with PIDD present with and in many cases are

treated by Gamma Globulin and have MUCH better quality of life. If he were my

child I would try to get him a second opinion to see if there is anything else

you can do to protect his body for the future.

BARBIE

________________________________

From: Jefferson <jamie@... <mailto:jamie%40jefferson.org> >

<mailto:%40>

Sent: Thu, November 4, 2010 10:41:30 PM

Subject: confusion on fevers

Hello, I've been following the thread on Lacey and her recurrent fevers. I

have no answers to offer --but do express my sympathies. Reading the posts

on fevers led me to a question that I thought I would ask the group because

everyone seems to know so much about medicine. My son who has no formal PID

diagnosis but has immune system irregularities (low IGG, specific antibody

deficiencies, constant URIs) and inflammatory bowel disease, has recurrent

high fevers with no other symptoms. They typically come on quickly and last

about two to three days with fevers up to 104. We give him motrin, and the

fever drops but comes back for a couple days. This started about a year ago.

I thought this was progress in that at least he wasn't getting sick ie.

Coming down with something -- that perhaps his body is responding to a virus

and fighting it off and a sign his immune system is working better? Is this

possible? Or is it a problem/unusual? I would also add that we have seen two

rheumatologists because he has a history of auto immune arthritis (high ESR,

Pos and climbing ANA) and the episodes do often coincide with limping but no

swelling. Neither of them were impressed and send us home, telling me not to

worry. I virtually never see our pediatrician as they do not offer much

assistance or help. They would also just tell me its nothing. Is this

something to worry about?

Thanks,