Diane

[Guest guest]

Beth, Have you ever heard of the Michigan Sinus Center? It is part of U

of M but is located in Livonia. I found their website by accident, and

they don't take just anyone to be seen there, you have to meet certain

criteria (chronic sinus infection that isn't cleared up by antibiotics

is one, and being immunocompromised is another) which of course Kody

meets. I just wondered if they would be more understanding of the immune

deficiency in relationship to the sinus infection than say our local ENT

up here. I think it is still considered in Network by our insurance.What

do you think? Here is the website address

www.med.umich.edu/oto/misinus/ptinfo Livonia is close to Detroit, isn't

it? Just thinking that if I did take Kody there....we could meet for lunch!

Diane

[Guest guest]

Kody's appointment went well in that the ENT didn't do a scope on Kody.

I bribed him before we went in, just in case, and the poor kid was so

scared he just trembled in the examing chair. But his ENT is very good,

and also has young children so he was very patient and kind to Kody.

Here is what he said, he only had the ct scan reports there in his

office, and after reading them and examing Kody, he wants to see the

actual scans himself. I guess the report suggested polyps were there,

but on examing Kody, he doesn't see polyps at all. Also he said he will

want another ct scan done, because these were done at 5mm intervals, and

he wants 3mm or less for Kody. He said at 5mm it can miss a lot in

someone as small as Kody. He said he needs to see behind the frontal

sinuses to see what is going on there. And also, he said that fungus

infections can grow in like cluster balls (which would explain why the

report suggests polyps when Kody doesn't have polyps) and also that

fungus infections are uncommon enough that the person that read the ct

scan wouldn't be looking for them in a child. He said that Kody will

need the surgery regardless, because it just doesn't look good. It will

take an hour and a half, and he said it is a risky surgery because what

he has to do is very close to the brain. ( He said that if Kody does

well, he could go home the same day, but that he most likely will stay

overnight maybe longer depending on what he finds in there. He couldn't

culture it in the office, because the infection is just too far up. If

Kody had any drainage at all it would have been done, but the sinuses

are blocked too high to stick a swab that far up and it could do some

damage if he tried. When the surgery is done, then he'll take several

cultures he said. So, I am waiting for him to call me after he looks at

the ct scans. He said if I don't hear from him by Friday to call him

back. Whoever it was that said sinus infections require patience hit the

nail on the head big time! The ENT said that all the antibiotics and

combinations of antibiotics that we tried were entirely appropriate and

that we did all we could for it. The IV meds were the right choice as it

covered a broad range of bacteria's, and Kody was on them for 5 weeks, a

more than appropriate length of time the ENT said. As for Kody he is

doing as well as can be expected under the circumstances, but sleeping a

lot, he seems just drained of energy.

Diane, Mom to Kody

[Guest guest]

Diane,

Thanks for the update. I have been wondering about " the scope " . I'm happy

Kody didn't have to have that done, but I wish it hadn't come to this

(surgery). It seems like the only reasonable choice you have. Please let us

know when it will be, so we can have our friends be praying on that day. By

the way, I'm the one who said sinus infections take patience. I think you

must be up for a medal by now. I can't remember, has Kody had sinus surgery

before?

Sandi, 's Mom

[Guest guest]

Thanks Sandi. Kody hasn't had sinus surgery before, he has had his

tonsils an adenoids out (May '01) and at that time he had lots of gunk

up there so the ENT flushed out his sinuses at that time. This surgery

is more involved than that. I know that it is the only reasonable option

left right now, but I am still just not real comfortable with it. I keep

thinking of the things that could go wrong. I guess I have the " what if "

syndrome! I was relieved that Kody didn't have to have the scope too.

When we got there Kody just kept asking everyone he saw " I don't have to

have that thing up my nose, right? " so I know that his ENT was well

aware of how Kody felt about it. As we were leaving, Kody tells me " I

was really good cuz I was so scared about that thing up my nose so I sat

real still! " . It was sad though that he thought that would be a

punishment for being naughty. I can just see him saying " but I was

GOOD! " .... makes me wonder if he thinks other medical procedures that

he has had were punishments for being naughty too. I have never ever

hinted that, but I guess you just never know what goes through a kid's

head. A medal,huh? I'm thinking a trophy the size of the Stanley Cup!

(Since we are in Michigan, the Red Wings are a very big deal so the

Stanley Cup was the first thing I thought of!)!

Diane, Mom to Kody

[Guest guest]

Diane,

That is so wonderful that they let you hold Kody while they put him under.

That is always 's least favorite part of surgery. I wish our children's

hospital did that!! Maybe I will suggest it. They prefer to give the " date

rape " drug instead, so the kids don't actually remember anything. But it is

traumatizing for me. Do you have a routine that you go through during

surgery? By now, I imagine that you do. For some reason, this helps me a

little. Also, Bri take so long to wake up, I need to have things to keep me

busy. Or at least mildly distracted. I buy my favorite magazines that I

usually don't get to buy. Several of them, depending on how long the surgery

is going to be. I go to the bathroom (because I haven't had a chance until

then) and buy some water. I have usually taken my lunch or a snack. This is

the time I eat because I know I won't be able to later--Bri will need my full

attention. Once, I paid my bills, because I knew it would take a lot of

concentration! I had some funny looks on that day. But with magazines, it

doesn't take soooo much concentration but gives me something new to look at.

Books are too difficult during surgery. Well, those are a few of my tricks.

After all that, I just " get in the zone " . And wait. Although we can't be

there, we are thinking and praying for you guys! So, we are there in spirit.

Sandi, 's Mom

[Guest guest]

Hi . No it isn't Kody's first surgery. I actually haven't

mentioned it to him yet, I don't want him to sit and stew over it. I

will talk about it with him probably starting the starting the saturday

before. I know from before that he will be okay with it. I think because

going to the hospital and surgeries is nothing new to him and he just

isn't afraid of being there. I also like how our hospital does things. I

will be allowed to go back with the anesthesiologist and they have a

rocking chair there that I will be able to sit and hold Kody and rock

him while they put the mask to knock him out on. They also rub a scented

chap stick on the mask so that the gas smells better. I will be allowed

to hold him until he is completely under. And they let him take his

favorite blankie and stuffed doggie with him. I am the one that is

worrying! LOL Kody has had 5 ear tube surgeries, a knee biopsy surgery,

port placement surgery, 2 broviac insertion surgeries, tonsils and

adenoids out, and now this one. So he knows the routine pretty well now.

I am sorry to hear that both your kids have been so ill lately. Praying

for a time of wellness for you all!!

Diane, Mom to Kody

[Guest guest]

In a message dated 7/9/02 12:20:36 AM Eastern Daylight Time,

smilinggail@... writes:

> Glad you are home safe and sound Diane. Did you get a chance to meet anyone

>

> from the list on your travels?

>

I wish I could meet others on the list but this trip was strictly family. It

is hard to visit with the kids. They are not to friendly with other kids. I

did drop in on one friend who was on the way to Boston. Hadn't seen her kids

in 8 yrs and my children were very anti-social. But the adults had a nice

visit. Ahhh it is good to be back home.

When we got home in the evening. My son says " Wow who cleaned the house when

we were gone? " For once I had cleaned before we left.

Diane

[Guest guest]

In a message dated 7/10/02 2:18:13 PM Pacific Daylight Time,

dben937342@... writes:

<< When we got home in the evening. My son says " Wow who cleaned the house

when

we were gone? " For once I had cleaned before we left.

Diane >>

LOL Diane! Yeah, wouldn't it be nice to have the house fairies clean every

time we left? LOL

Gail :-)

[Guest guest]

Diane:

Just trying to catch up -- glad Kody's surgery is over with but sorry about

your burn! Someone may have answered this but one med I know for one that

causes susceptibility to sunburn is Bactrim, which is a sulfa abx, I think

they usually use it for UTIs.

I had a burn like that once, you know the kind where during the night all

your blisters open and you wake up soaking wet and peel that layer of skin

off and start over. Yuck. It left a greyish " tan " scar for a couple years but

faded. Listen to this!!! When it happened I was visiting my sister and she

had me follow my mom's old wives tale and to help the burn I was supposed to

" take the hottest bath you can stand " . Can you imagine? Is there a WORSE idea

on the planet??? HOT water on a burn???? Crazy. Maybe that's why I scarred, I

don't know.

Hope you're better now and Kody is recovering.

(mom to , age 3. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

Oh ow ! OWWW!!! I couldn't even stand a luke warm bath! Can't

imagine a hot bath!! Holy smokes! I am peeling now, and it is that awful

" wet " peel. I lean back in the chair and suddenly my back is soaked. I

have a feeling it will scar some, at least in spots. I hope like yours

not permanently. It is still painful, where it has peeled it feels like

it was burnt all over again. But at least more like a regular sunburn

and not like before. I did resort to some " old wives tales " out of

desperation....putting white vinegar on...bad idea...it HURTS! But

putting cloths soaked in cool tea was great. Very cooling and it

absorbed the heat. Worked the best for the pain was wrapping ice packs

in towels and just laying them on my back and chest. Couldn't move

around much but it sure helped the pain!! My problem was that I was on

prednisone, terbutilin (sp), and bactrim. Like a triple prescription for

a medicine sunburn!!! Ugh. But hey I am on the mend now if not slightly

unsightly!

Diane, Mom to Kody

[Guest guest]

Diane:

Something occured to me. Where was this spider bite? Because when Sandi said

it sounded odd for it to " come back " , it made me wonder if it wasn't

something else. I've mentioned those " erythema nodosum " nodules here before I

think, I get them a couple/few times a year, they are a severely painful,

red, hot swollen nodule. They turn into a bad bruise and linger for many many

weeks. They almost exclusively occur on the lower extremities though. Where

are your " bites " ?

(mom to , age 3. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

, my weird " owie " (LOL) is on my right hip. The first one

progressed so that it was HUGE at least 4 " X6 " . And it turned first

bright red then darkened to almost black and then over time a regular

brownish black and blue color as it was shrinking. The black skin never

" died " and came off like it shows in the spider bites. Right now it is

bigger about the size of a quarter now. And getting darker red. And very

sore. Not real swollen, mostly flat with a little dome shaped swelling.

See, I told you it was weird! LOL

Diane, Mom to Kody

[Guest guest]

Hi Diane,

Okay, I had another thought about Kody's double vision. Could the sinus

infection have caused swelling near his optic nerve? This happened to

once and caused uncontrollable blinking. I don't know if it can cause double

vision, but it's a thought.

Sandi, 's Mom

[Guest guest]

I will eventually be able to let go of the guilt. You know how it is, we

all do it, sit and wonder if I would have done this or that or acted

sooner....blah, blah, blah! ) And you are right about the wheel

chair...he is a boy and it does have wheels! LOL I'm going to call

around and get the info on renting one. I would think renting one for a

long weekend shouldn't be too expensive. I hope! I think Kody would

like Daddy to push him...Daddy has a tendancy to be a bit more daring

than Mommy!

Diane, Mom to Kody

[Guest guest]

Diane,

The other thing that helped me a lot was to be able to ask questions. I

know you will let Kody do this. When a person was trying to explain

something to me, I just couldn't get it unless I was able to ask the parts I

didn't understand. At the time, other people's words were so often confusing

to me. Asking questions helped me process a lot (my way).

Sandi, The King Of Sinus Infection Behavior's Mom

[Guest guest]

Sandi, that was one thing the audiologist said too, was that if I have

to repeat it for him, to use different words. Not to repeat it word for

word. See, I am already learning a lot! )

Diane, Mom to Kody

[Guest guest]

In a message dated 8/21/2002 10:33:46 PM Eastern Daylight Time,

dianegillings@... writes:

> Now I just hope all of

> this commotion will allow to keep swimming. It is the one

> therapy that we have actually seen results. She is learning to swim

> and absolutely loves it. Wish me luck. If there is an article I will

> share.

Hi Diane,

Way to go! I hope is on the front page. Can't wait to see the article.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Diane,

Your welcome!! I'm glad you got tested because without the dx. she

wouldn't be able to get the right therapy and etc.

You did the right thing by calling the reporter. Isn't it a crying shame how we

have to fight for outr kids? You go girl!!! Keep us posted!!

I have thought about having our local paper write an article on my Hannah. From

what I undewrstand she is the first DS child to be included in the our school

district. I wonder what the school would think about that? They would probably

love the publicity.

Take care and I'm glad you joined us over here!!! : )

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7

dianegillings wrote:---

Hey Pam,

Thanks for the welcome and I have to tell you that you are the reason

I found this list. I have been lurking on the multiples with DS list

and always reminded me of my . When you found out she was

autistic I knew that I needed to get tested! So thanks a bunch!

It's weird that instead of being depressed over her dual dx I am

actually feeling empowered. In fact just last night the pool that

takes adaptive swim lessons from handed out a letter to the

parents stating that the program was too expensive and they were

going to cut it. Our options are to either pay $18 an hour for

private lessons or have a group lesson and provide a personal aide.

Well our local paper had done an article not two days prior about

this pool and how they were costing the schoold district $180,000 a

year just to stay open. I called the paper and told them that there

solution for their mismanagement of the pool was to cut the adaptive

program for kids with special needs. The reporter now wants to do a

story about it and she is coming to the pool on Thursday to take pics

of swimming. How cool! might be front page news. That

will show them not to mess with me and my kid. Now I just hope all of

this commotion will allow to keep swimming. It is the one

therapy that we have actually seen results. She is learning to swim

and absolutely loves it. Wish me luck. If there is an article I will

share.

Diane

Adam 11, and (ds, ASD)6, 1 1/2

In @y..., Pam Houser

wrote:

>

> Hi, I think I missed welcoming some new people.

>

> I am Pam mother to identical twins Hannah (DS) and (DS-ASD).

They are seven years old. I also have two sons Josh and Dusty.

>

> The twins are in first grade. Hannah will be in regular ed with

pull outs and is in special ed with 3 mainstream classes.

Hannah has her own personal aide which they just hired. She is a

certified teacher who couldn't find a teaching job. I have met her

and she seems to be enjoying the twins so far. She will also be

helping with when needed.

>

> When I was pregnant I didn't know the twins would have DS and it

was a shock for me when the doctor told me. It took me a nearly 2

years to accept it and then I was in denial for about 2 more years.

But now it is totally part of my life and I have learned how to love

with a deeper part of me I never new existed.

>

> You will love this group!! You will learn from here and teach from

here. You will never feel alone again!!! These woman are great and a

true life saver.

>

> Oh yeah, we live in the great state of Tennessee.

>

> Again WELCOME!

>

>

>

>

>

> Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7,

Josh 21 and Dusty 16

>

>

>

> ---------------------------------

>

[Guest guest]

Brook was extremely allergic to rice as an infant. He would vomit and vomit

after he had had any, even minute amounts. Now he has outgrown it but once

we figured it out we avoided rice for years and years.

Marisa

Mom to Miles 15, Brook 12 and Genevieve 5

[Guest guest]

In a message dated 10/8/2002 12:42:12 PM Eastern Daylight Time,

dben937342@... writes:

> I just want

> someone else to work on all these things while I sit back and just be Mom.

>

Hi Diane,

I don't think you are in denial just tired of the same old same old. I just

want to be mom too but as soon as I let my guard down and think all is going

well that's when I get into a problem. I know I will always have to monitor

the school ed process to get my child an education. It's a job I hate but am

not allowed to quit.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Beth,

I very much wanted to go to the conference, but I have a visitor from

Brazil arriving at the same time. Can't very well leave her alone her

first weekend here without being able to speak english! LOL When I was

in high school we had an exchange student stay with us, he was supposed

to stay 6 months but he ended up staying 2 years. Anyhow, it is his baby

sister coming to visit for a few months. I can't wait. Eddie and his

family have come about once every 4 years to visit with us but this time

it is just his sister on her first trip to the US. I'd love to get the

Batman duo together too. Right now Kody has his first sinus infection

since his surgeries in July. I'm bummin' but Kody is dealing with it

just fine as usual.

Diane, Mom to Kody

[Guest guest]

In a message dated 10/15/2002 2:46:05 PM Eastern Daylight Time,

dben937342@... writes:

> Just sending you some {{{{{{{{{{{{hugs}}}}}}}}}}}}}!!! I am sure thats how

> teachers feel about me too!! They will learn from you despite themselves. I

> am giving myself the same pep talk. lololo

>

Hi Diane,

Thanks for the hugs. If I didn't share ideas or any info with the teachers

they would have another name for me. I just can't win. I have no intention of

changing my ways now.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Diane:

So an x-ray shows sinus infection too? Would that be cheaper or less of a big

deal than a sinus CT or culture? With all the sinus infections has had,

I've been surprised they haven't wanted to do something more to make sure she

had an infection rather than just douse her in more abx. I know one ped in

this practice really well (we have play dates!) and maybe I'll make sure to

see her next time, as I can talk to her better since we're friends, maybe

she'll agree to try something else.

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

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

other defs)

[Guest guest]

The exray would show if the sinus are full or occluded. Which if you

suspect the sinus infection is still there it is useful when there

aren't many of the usual symptoms like the green snot to make sure that

you are still dealing with infection in the sinuses. A CT scan is best

overall because it shows if there is a physical deformity in the

sinuses blocking them from draining or whatever. I think that an exray

is a good first step to take.

Diane, Mom to Kody

[Guest guest]

Sinus X-rays are useful mainly for showing " air-fluid " levels, so if

there's a true infection with goop in there, you can see a distinct line

across the sinuses, which looks like milk in a glass -- you can see the

delineation from the top of the milk to the air above it, and it holds

form because of the cup it's in. Essentially it's like looking at a

puddle or a pond from the side, looking for the presence or absence of

fluid in the puddle. But x-rays are not very reliable, and because of

scarring and such, can often be confusing. The basic, uncomplicated

sinus CT costs the same as an X-ray series and shows more complete info

(can distinguish scarring from acute infection, etc). The cultures are

important for figuring out exactly what you're treating, and I wouldn't

give those up, if possible, because if you have a young child with

chronic sinus problems, the last thing they need in the early years is

to breed crazy resistant strains of bacteria. Knowing what you're

dealing with and treating it completely is certainly better for the

long-term health of the child. Obviously, that's not always possible,

but there's merit in culturing that imaging cannot provide. In terms

of X-ray vs. CT, some of that depends on the age of the child, degree of

sinus disease, need for specific diagnosis, etc. If this is a child who

will not be able to stay still for a CT, an X-ray might provide more

info. If you know there's lots of scarring and always some degree of

junk pooling in the sinuses, or some degree of opacification in the

sinuses, X-rays aren't going to tell you much. Again, different docs

have different preferences, and different thresholds/criteria for

treatment. Hope that helps a bit.

Take care,

Diane Schmidt wrote:

>

> The exray would show if the sinus are full or occluded. Which if you

> suspect the sinus infection is still there it is useful when there

> aren't many of the usual symptoms like the green snot to make sure that

> you are still dealing with infection in the sinuses. A CT scan is best

> overall because it shows if there is a physical deformity in the

> sinuses blocking them from draining or whatever. I think that an exray

> is a good first step to take.

> Diane, Mom to Kody

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

>

>