Maddie and a couple of questions

[Guest guest]

Becky,

It sounds like SINUS INFECTION BEHAVIOR to me. And, I consider myself

somewhat of an expert on this--no one does it better than my son! Grumpy is

a very polite way to call his behavior when he is infected. Belligerent with

a mean twist is closer to the truth. I'm glad Maddie had fun before she got

sick. Good for you in letting her go!!

Sandi, 's Mom

[Guest guest]

Well I was a very brave mom last week and let Maddie go on vacation

to the lake with my parents. Where they went it was MUCH cooler than

it was here, and to be really honest-I could use the break. It was

the first time in 6 years that they had offered to take her-they have

been taking her sister since she was 2(she is now 12!) I let her go

on the promise that they would carefully adhere to her meds schedule

and really watch what she eats. Well all was great until she was

ready to come home. She played in the lake and loved the cool

weather. The last day-my nephew-who was there with his parents

developed some type of cold and now that Mad is home she is sick. It

was both of their first times swimming in the lake and I am wondering

if she got something from the water. Her asthma is not responding to

treatment and she has yucky green snot-she even asked for an

albuterol treatment so she must be struggling. THe only thing is

there is no fever. I do not know if I should call her pediatrician

or wait until Friday when she already has her standing appointment

with her pulmonlogist. She has been tired and VERY grumpy since she

has been home, but I know she played hard and had a really good time

while she was gone! Just wondered if any of you had any thoughts on

this!

Becky in IN-mom to (the big 12 year old who got that really

special present of womanhood for her birthday-she asked if she could

return it(HAHA!) and Maddie-IgA def., mild cp, hyperglycemic,

hypercholesteroloemia.....and on and on

[Guest guest]

Pam,

My feel for you!!! In our house, we have had SINUS INFECTION BEHAVIOR for

two weeks now. Jeez!! is even being mean to the new tutor--just

great--what an impression to make. I can't figure that one out, she is very

pretty and nice. So, if he's mean to her, he must be feeling horrible.

Today, we see the Ped for a follow-up. I only make follow up appointments

when I am sure whatever med he gives Bri is not going to work. This is

definitely a " fix it or keep it day " . 's Ped is a personal friend of

mine, and he takes me seriously when I say this!!! Plus, he just got

divorced, so I tell him he needs the company

Reading about Rebekah makes me feel better--not alone, anyway. Before this

group, I would go in and say, he has S.I.B. again!!! Now, you guys recognize

it and I feel validated. I just wish they could give our kids meds when we

start seeing their behavior change, I think it would be easier to fight the

infection.

is on Clindamycin currently. If this fails, we are literally out of

antibiotics that are approved in children under 13 years of age. I have no

idea where we go from here. Starting to get scary. A port for IV's is out

because of his heart. Okay, deep breath, one day at a time.

One of the few things I have found that helps S.I.B. is distraction and

lots of it. Often, right after he is diagnosed with a new infection, after

picking up the RX's, we go straight to the movie store. We rent five movies

he has never seen before. TV has it's place--for us, this is one of them.

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

Grumpy is

a very polite way to call his behavior when he is infected. Belligerent

with

a mean twist is closer to the truth.

Sandi! Your son sounds like my dd! Rebekah is just flat out cruel at

times. I find that I can't let her and the baby be out of my sight at the

same time. It makes it hard to get anything done that way. Plus, when we

start homeschooling in the next few days here, I think that needing to watch

one or both constantly will drive me bonkers!

Pam

[Guest guest]

Hello,

One more thing, I try to give Advil (this works better for ) before

bedtime. He seems to suffer the most pain when he lays down--his Ped says

because his sinuses are so full. So, I find it helps him sleep. Sleep

depravation is one of the major problems we deal with due to sinus infection.

It certainly doesn't help with the behavior!

Sandi, 's Mom

[Guest guest]

Okay, I guess one more thing. doesn't watch a lot of TV. I just find

it a useful tool while he is infected. Renting the movies is a special treat

for him, and when we get to the point in the day that I feel like I need a

break, that's when I pop in a movie for him. I didn't want anyone to get the

idea that I just put him in front of the TV all day. I went so far as to buy

a huge cabinet to put the TV away in. My Landlord calls it the outhouse!!!

Sandi, 's Mom

[Guest guest]

Rebekah is on day 11 on a high dose of cefzil. We didn't see our regular

ped, but I did convince the guy to give us a high dose and a 10 day refill.

We will definitely be using the refill. After 8 days, we THINK we see some

improvement in behavior. We have also started giving her tylenol each

morning to take care of headaches. Then, after her nap, we give her another

dose of tylenol and try to make it through the evening.

She is too young to watch a lot of TV and, with three other kids, I can't

give her buckets of attention. I can honestly say that all of the kids are

suffering because of Rebekah's demands on the parents' time.

I, too, am deeply grateful that other recognize and have lived through sinus

infection behavior. Even our ped agrees that Rebekah's aggression toward

the baby is a valid sign of an infection. What a crazy thing we are living

through!

Pam

Re: Maddie and a couple of questions

Pam,

My feel for you!!! In our house, we have had SINUS INFECTION BEHAVIOR for

two weeks now. Jeez!! is even being mean to the new tutor--just

great--what an impression to make. I can't figure that one out, she is very

pretty and nice. So, if he's mean to her, he must be feeling horrible.

[Guest guest]

Dear Sandi,

I'm so sorry that the antibiotic doesn't seem to be working. I know

that it is really scary when you are on clindamycin and they tell you that if

it doesn't work then the pediatrician says IV medications (we were there once

before). Especially since has had endocarditis and you have been

through all that before. I remember a similar conversation with an ID doc and

he did mention at that time that sometimes they try combinations of oral

antibiotics when clindamycin fails for sinus infections. I don't know if

this was something they were experimenting with or whether it was part of

standard protocol--but it did make me feel better to hear that at the time.

Perhaps your doctor who is probably in communication with an ID doctor can

advise you --it may help relieve your fears. I will be praying for and

you.

Martha (mom to Chrissy IgA deficiency etc.)

[Guest guest]

Sandi,

You sound like me--I'm forever going through the house turning off the TV.

The kids don't mind it as long as they get their 2 hours on Saturday

morning. They'd rather be in the yard playing or dancing to the radio.

is the TV addict in our house. I've finally convinced him to wait

until the kids go to bed--most nights he does. The kids tell me they don't

like his shows anyway. Movies we rent are a special treat & we only do that

once in a blue moon--the vcr broke & I'm too broke to get it fixed. Maybe

next month.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (14 months)

[Guest guest]

I feel so bad for all you moms with doctors who don't listen to you. My

kids primary doctor is a GP who has been my doctor for 30 years. He knows

that I know when my son is sick and will prescribe accordingly (he also

knows that I HATE medicating, so he can trust that I'm not going to suggest

antibiotics unless I'm pretty certain about Sam's need for them.) Of

course, since he's been on daily abx our need for them has dropped

considerably. He's in his 60's now, and all I can say is that I dread the

day he retires and I have to find someone else. I always feel so blessed

to have him (he's the one that the kids will occationally exaggerate their

symptoms just so they can go see him, ....of course that doesn't work

unless mom has to see him anyway).

W

[Guest guest]

often did not run a temperature with sinus infection. Usually the

green stuff means infection.

We asked his immunologist about whether or not he should swim in a lake.

He said that as long as it was not stagnant water, he could. He said that

of course there is some risk to it, but that risk would be minimized if we

put bactroban in his nose before and after swimming. Unless has a

current infection, we always opt to give him as normal a life as possible.

Sometimes it's tough to make that choice, because I always know how much

I'll regret it if he ends up sick. If I know I've taken all the reasonable

precautions that I can (such as the antibiotic cream in the nose), I say

let him have fun.

Maddie probably caught it from her cousin, and even if she had stayed at

home there is no guarantee that she would not have been exposed to someone

there.

Maddie is very lucky to have such a brave mom. 8-) And it is great

that you got a chance to get a break. We all need them and are usually

better moms afterwards.

Tell that we all share her desire to return that particular gift!

Keep us posted on Maddie.

God bless,

Wenoka (AMY - 7, Sam - 5 1/2 - Hyper IgM, Sensory Integration Disorder,

Christi - 20 months - terminally cute)