Re: Ursula* immuno update n

[Guest guest]

In a message dated 4/7/2006 1:04:39 PM Central Standard Time,

dietdoc@... writes:

> [, were there any tricks you did to keep Em comfortable and on the

> mend quickly?]

>

>

:

Can they give her a different antiviral? There are two other flu meds, I

believe. had Tamiflu on board within 9 hours of her first symptom... I

think

that really helped the most in battling the flu. A neighbor's 7 yr old got

the flu (nasal swab-confirmed) and within 24 hours of starting Tamiflu was

fever-free!!!

was at 102 while ON Advil the first day, so the meds barely kept the

fever at bay. She really did much better overall than I expected, but again, she

was fully dosed with Tamiflu. If you can't keep the fever down, I know you

can rotate Advil and Tylenol so they overlap, ask the ped what dose they would

have you do that if they approve.

Other than that, I'm all for popsicles and tepid baths if necessary to keep

comfortable. Slushies... anything cold continuously going. The other thing I

found is that if you wait until a fever spikes to medicate, it is harder than if

you stay on a continuous schedule with the fever meds (obeying the limits of

course).

I sure hope she's doing better soon.

's big fevers were gone within a couple days, but she stayed close to

100 for the next 3-1/2 weeks (her non-PID little sis had the same temps, which

is why I didn't do anything about it other than buy a new thermometer to make

sure!). She finally had normal temps this Tues, Wed, Thurs,... then today it's

back flirting with 100 again (little sis is still normal)!! Arrrrgh!! She felt

just fine during all that, so we held tight.

Urgh. Funny, she didn't have any fevers for a year or so, sick or well. But

now ever since the flu she's had elevated temps yet didn't seem sick. Though

I'm sure she's battling a little something now because she's clearing her

throat, having little coughs and complaining of sore throat (it looks perfect)

and

" boogers stuck in my throat " .

Okay, really went off on a tangent! Watch for secondary infections with flu

-- ears, sinus and lungs. We'll be thinking of you.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Ursula -

I am glad that to know that Macey's check-up went smoothly and really

appreciate you posting the details. In many ways, my daughter is following a

similar trajectory and we learn so much from Macey. I hope her height/weight

stabilize and her gut gets back in shape quickly.

la has a virus (the doc thinks) and was started on Tamiflu yesterday.

She had an adverse reaction (vomiting, nose bleed, bloody tissue in vomit) and,

when I called the pharm, he said " this has never happened before, maybe it is

the virus " . So aggravating. We did not give her the 2nd dose and within 2

hours, she was not vomiting and has not since. We are rather concerned about

her as her fever is creaping up among other things -- we are checking in with

immuno every 12 or so hours... [, were there any tricks you did to keep Em

comfortable and on the mend quickly?]

Quickly, I am offering you a few more thoughts in response to your query for

topic requestions. We are not in the SE but perhaps there will be one in the

west again soon.

1. New best practices in immuno, new research findings...

2. Securing access to IgG therapy

3. Promoting the best possible outcomes for our kids (interdisciplinary

support areas such as GI, pulmonary, nutrition, etc.)

4. Schooling: in home and out of home (a balanced and unbiased discussion of

how to make schooling happen such as legal aspects in whatever setting the

parents choose).

5. Roundtable or open forum where parents/patients and physicans/researchers

can do Q & A

6. A forum where parents/patients ask questions in advance of the " talk "

(index cards) -- I always find that there is not enough time for Q & A and the

more aggressive parents tend to get their questions answered.

Running to my hot potato...

mom to CVIDer