Re: .

[Guest guest]

I just have to put my 2 cents worth on antibiotics. is almost 4.

She has spent her entire life pulling on her ears. Every time I took her to

the doctor he would look in her ears and say, all clear. Every time I

thought she might need medication he would say, I'll give it to you but she

doesn't need it. So, I listened to the doctor.

3 weeks ago when we our ENT did a CAT scan to rule out Mondini's, he found

that had the worst sinus infection he had ever seen in a child. He

thinks she may have had it for a very long time. So, for the first time we

put her on Augmenten. She was VERY ALLERGIC. But her ped diagnosed the

symptoms as Rosiola. We took her off the medicine any way. (We were away)

When we got home the ENT suggested Suprax. My husband (A Doctor) suspected

allergy's so we tried the Augmenten again to make sure. With in a few hours

she had a VERY BAD ALLERGIC REACTION. But, when she was on the antibiotic

her hearing was way up.

So she is now on Suprex. The ENT found her to be VERY Allergic to Cats. Of

course our cat sleeps with her. We got a Hepa Air filter cleaning system for

her room. Since the antibiotics and the air filter is doing much

better. Her hearing is better and she is a much happier child. Tonight we

went out for Christmas dinner and the family had 7 cats. By the end of the

night was laying on the floor crying and pulling her ears.

The point of my story is, I wish I would have know all this information

earlier. I wish I would have not been so afraid of the antibiotics. We

always thought she had allergies but her Ped, (head of allergy at s

Hopkins) would not listen. The Head Ped ENT at Hopkins didn't even think to

do a CAT scan although he did ask about sinuses but because she never showed

and symptoms except behavior we didn't know.

Does anyone have any suggestions as to what to do if we are going into an

Allergy Zone. I will be very upset if even a minimal exposure takes her

hearing away. And on top of it, loves animals. This is not an

emergency. Just wondering if anyone has been in my shoes.

Sheri

[Guest guest]

In a message dated 12/26/99 12:51:17 AM Eastern Standard Time,

SDunnstern@... writes:

<<

Does anyone have any suggestions as to what to do if we are going into an

Allergy Zone. I will be very upset if even a minimal exposure takes her

hearing away. And on top of it, loves animals. This is not an

emergency. Just wondering if anyone has been in my shoes.

Sheri >>

Sometimes I wonder about Crystal......she was fine when she was

younger.....but since......oh gosh....maybe 18 months.....she gets like

stuffed up and snores periodically.......without real " cold "

symptoms......should I take her in to get allergy tests??? should I ask them

to do a CTscan???? The doctors have never said anything........I know a few

of her more recent tymps have shown some negative ear pressure in her left

ear......but no signs of infection........should I try antibodics and just

see what happens??

I have been wondering about this......thanks for bringing it up

[Guest guest]

Hi...ok...been reading the postings with regards to ear infections/fluid

behind the ear...etc...figured at least for the ear infections I can't really

say too much because tommy hasn't had any real ear infections..a couple of

beginning ones that were caught...I have noticed that when pediatricians hear

that he is deaf they tend to all ask the same question...did he have a lot of

ear infections.

My interest was sorta piqued when the fluid behind the ear was

mentioned...just because it seems like ever now and then a pediatrician will

say something about a little clear fluid behind the ear but not to worry

sorta attitude. As to allergies..congestion...snoring....that area...Tommy

was born in SC...then at two we had to transfer to Colorado for 10

months...then transferred to San Diego. He has always had problems with nose

stuffed up...problems with drainage...which after a month now of sinus

headaches and drainage (me) and waking up with pressure in both ears..I

suspect he was having similar issues..our allergies tend to coincide...When

we got to San Diego the problem got worse...from October till about

March...The Santa Ana's...who knows...but he would get really congested,

wouldn't be able to sleep...we would think he had a cold..take him in..they

said it was probably allergies...didn't recommend a bunch of testing..This

went on for almost 3 years. When tommy reached 6 years old...this year in

Feb....we had had it. He had never slept thru the night...you could hear him

snoring clear in another room... constanty stopped up...about the only thing

with the ears was sometimes the clear fluid thing..maybe a borderline ear

infection a couple of times...

We finally got a referral for an ENT (during the time this was going on) and

they took one look with a scope up into his nose and discovered that his

adnoids were pretty much blocking his nasal passages...and as the dr. put it,

all the allergy stuff we were putting up his nose probably wasn't even making

past the adnoids.

In March of this year they removed his adnoids and went ahead and did the

tonsils...which were somewhat large. Once he recovered from the

surgery...guess what. He started sleeping thru the night for the first time.

He still has some obvious signs of allergies..just like me..but..the big

difference is that it is no where near as bad as previous years...and the

allergy spray is able to do what it is supposed to do.

As I mentioned in my first postings our big issue has been with the CP and

such...the deafness took a back seat...so we are trying to focus on it and

get info...but I would think that those years of constant allergies..adapting

to a new environment...drainage..fluid in ears..all that..would have had some

effect on tommy's little bit of hearing...Just in the last couple of

days..with the sinus pressure and pressure in my ears ..when it seems to

bother me more..I can tell a slight difference...a slight feeling of sound

trying to get thru something...

Sorry this is so long...I guess the thing I was trying to say is that Tommy

has always had allergies..but because the adnoids would get all swollen up

and whatever they do when he was having problems..they allergy symptoms and

such were much worse..and now without the adnoids it almost seems like his

allergy symptoms ..while still popping up...are not as bad. I bring up the

sleeping issue only because there were doctors that wanted to do sleep

studies...change his phenobarbitol...said it was related to the CP and brain

damage...wanted to do other tests...and it simply was that he couldn't breath

thru his nose most of his life..and if he closed his mouth he couldn't breath

period...an was waking up or partially waking up a half dozen times a nite

gasping for air...

Hope everyone is having a good day after christmas... E.

[Guest guest]

Hi Sherie....read your posting and it made me think...about cats...we had a

few...none since we had tommy...and the other day my husband an I were over

at a neighbors who has a cat...we got the cat next to tommy and took his hand

an petted the cat. My husband was petting the cat...and next thing he knew

he had a big time allergic reaction...looked awful. Went home changed his

shirt..washed his hands and face...reading your post made me realize that

with a son who is deaf/has cp...we can't just assume things...so...we

realized that when it comes time for him to have a dog...although he has been

around grandparents dogs and no problems as far as we know...we probably

though should make sure that there are no problems with regards to pets...

Sometimes that's the tough one about things...that we have 20/20

hindsight...and that we can't always know or associate one thing with

another...

Take care...have a good one.. E.

[Guest guest]

,

This really sounds like some of the symptoms that showed. Her

Ped put her on claritin last year to see if it would help and it does. As

far as doing ANYTHING medical I would strongly suggest going to a Regular old

ENT. We got the best results from avoiding the big shots at Hopkins.

Let me know what you decide.

Sheri

[Guest guest]

Just to update everyone,

woke up this morning with dark circles and her voice sounds

funny. I gave her clariton. This allergy stuff is really bad for the little

ones. She won't wear her aids either. She must be really stuffed up.

Sheri

[Guest guest]

In a message dated 12/25/99 11:30:31 PM Eastern Standard Time,

Kirsten.Elin@... writes:

> It's easy for me to say " don't put your kids on

> antibiotics unnecessarily " since his infections have been relatively mild.

> But

> I figured I'd just give my story to add to the pile.

>

> Good luck

>

> Kirsten

>

Kirsten, I was lucky that both of my family Dr's, in Ireland and in the

States, were sympathetic with my reluctance to put my kids on antibiotics

willy nilly! My daughter, now 12, had quite 5 or 6 for throat infections up

to the age of 2.6, and has only had one antibiotic since then at the age of 5

for a tooth infection (she had broken the tooth at 3 on a tiled step, and the

stump became infected, sigh). My son, now 6, has had a limited number of

antibiotics despite having fluid and so-called ear infections (my criteria,

if it was bad enough for an antibiotic, then it was an ear infection, didn't

mirror the ENT's, LOL). He had two intravenous antibiotics at birth which I

had no control over, but since then I always question does he REALLY need it.

Luckily, my Dr. will give me an antibiotic prescription and tell me, give

him 18 to 24 hours, if there is no improvement then I give him the antibiotic.

My Dad is a chemist and very wary of drugs, (my mother, back in 1962,

pregnant with twins (me and my brother) was prescribed Thalidamide and my Dad

told her NOT to take it, Lucky for us!!!) I always question whatever drug has

been prescribed and want to know what it is for and any side-effects etc. I

nearly had a stroke one time, I was home reading the literature for an

antibiotic my son had for one of his famous ear infections (actually this was

the SECOND one for the same infection) and I realised that he had been

prescribed the ADULT dose. I didn't start him on the medicine, I waited to

talk to the Dr. and he explained that the dose WAS an adult dose because the

infection had not responded the first time around. Poor kid was only 2.

Also, in Ireland, we use antibiotics slightly differently, you get a higher

dose for 5 days instead of a lower dose over 10 days. First time I got one

for 10 days I couldn't believe it. Called my Dad and we went over the dose

and figured out that it was the same amount of antibiotic, just spread out

over a different time!

Anyway, that's my saga, but my kids don't get an antibiotic unless they

REALLY need it!

Orla

[Guest guest]

In a message dated 12/26/99 11:15:44 AM Eastern Standard Time,

Acresx50@... writes:

<< Sorry this is so long...I guess the thing I was trying to say is that

Tommy

has always had allergies..but because the adnoids would get all swollen up

and whatever they do when he was having problems..they allergy symptoms and

such were much worse..and now without the adnoids it almost seems like his

allergy symptoms ..while still popping up...are not as bad. I bring up the

sleeping issue only because there were doctors that wanted to do sleep

studies...change his phenobarbitol...said it was related to the CP and brain

damage...wanted to do other tests...and it simply was that he couldn't

breath

thru his nose most of his life..and if he closed his mouth he couldn't

breath

period...an was waking up or partially waking up a half dozen times a nite

gasping for air...

>>

THanks for bring this all up .......I think I will take Crystal in and

ask about her adnoids etc......I am glad you finally found out what it

was......well part of it.

[Guest guest]

In a message dated 12/26/99 1:10:54 PM Eastern Standard Time,

SDunnstern@... writes:

<< ,

This really sounds like some of the symptoms that showed. Her

Ped put her on claritin last year to see if it would help and it does. As

far as doing ANYTHING medical I would strongly suggest going to a Regular

old

ENT. We got the best results from avoiding the big shots at Hopkins.

Let me know what you decide.

Sheri >>

Thanks Sheri.....I think we will go see the ENT. Also.....what sort of

behavior things did you notice????

[Guest guest]

> Does anyone have any suggestions as to what to do if we are going into an

> Allergy Zone. I will be very upset if even a minimal exposure takes her

> hearing away. And on top of it, loves animals. This is not an

> emergency. Just wondering if anyone has been in my shoes.

When JD was about 3, I noticed that no matter how clear he sounded before we

went for speech therapy, midway through therapy his speech got all nasal. We

took him in for allergy testing and found out he was allergic to dust mites,

as well as cats and dogs. He was put on Beconaise (he's since been switched

to Vancenase) which he sprays in his nose twice a day. I can usually tell

when he starts cheating (he doesn't like to do it so he fakes it at times)

because he'll get big black circles under his eyes. If it's a place I know

before hand where they have cats or dogs and there's fur all over the house,

then we don't go. I do explain the situation to the would-be hosts so they

don't feel slighted, but my son's ability to breath comes first. Usually if

it's somewhere where they use normal housecleaning skills (i.e., clean up

the fur on the furniture before guests arrive), there isn't a problem. If I

notice JD's having a problem, we make our excuses and leave.

Kay

[Guest guest]

In a message dated 12/26/99 11:15:31 PM Eastern Standard Time,

listenup@... writes:

<< When JD was about 3, I noticed that no matter how clear he sounded before

we

went for speech therapy, midway through therapy his speech got all nasal. We

took him in for allergy testing and found out he was allergic to dust mites,

as well as cats and dogs. >>

oh wow.......this is EXACTLY what we are going through. Her speech therapist

just said at the last visit...... " she sounds more nasal for some

reason? " ........huh......so this really could be allergies huh? I don't have

any and neither does my husband so we are unfamiliar with all this......did

the nasal spray really help Kay????

Thanks....

[Guest guest]

In a message dated 12/27/99 11:25:47 AM Eastern Standard Time,

listenup@... writes:

<< I guess he was about 3 years old when he had the skin patch test. >>

This is how old she is as well.......did it hurt? did he do ok?

Thanks,

ps. does insurance cover it?

[Guest guest]

,

Where do I start on behavior? Well, we used to think she was ignoring us

all the time and we would get upset with her and that would start a really

fun tantrum cycle usually between and my husband. It seemed like

is in a perpetual state of the terrible 2's. But now that we know

how to communicate with her a lot of the behavior went away. She still acts

like a spoiled brat and will fight to get what she wants but she knows that

No means No.

I have found that my words always have to mean what I say or they are

meaningless to her. One of our biggest problems before we got her aided is

that no one could figure out why she wasn't talking. To this day people are

shocked that she cannot hear. I always get the " But she looks so normal. "

Well, she is normal except for her ears.

Most of the other " odd " behaviors were addresses by a Developmental Ped

at Hopkins. This is one of the only doctors I really trust. She told me

that all children develop differently and was overwhelmingly normal.

I used to worry about the lining up of her toys but for some reason it seems

to help her feel in control and I limit it.

I think that is a very important thing to remember. Set limits and stick

to them. I remember I would do anything to avoid one of rebecca's tantrums.

She screams so loud. Once I started ignoring the tantrums, they went away.

Sometimes she still tests but she will scream and then laugh.

I think you have to trust you feelings and only address the behaviors

that SCARE YOU. Don't worry about what other people say. It's the Scary

Ones that you have to address. Let me know what behaviors you are worried

about and I will tell you if they were any we experienced. I really believe

most of them are developmental.

Sheri, Hi Lori

[Guest guest]

In a message dated 12/27/99 11:46:22 AM Eastern Standard Time,

SDunnstern@... writes:

<< I think that is a very important thing to remember. Set limits and

stick

to them. I remember I would do anything to avoid one of rebecca's tantrums.

She screams so loud. Once I started ignoring the tantrums, they went away.

Sometimes she still tests but she will scream and then laugh.

I think you have to trust you feelings and only address the behaviors

that SCARE YOU. Don't worry about what other people say. It's the Scary

Ones that you have to address. Let me know what behaviors you are worried

about and I will tell you if they were any we experienced. I really believe

most of them are developmental.

Sheri, Hi Lori >>

Well Crystal is quite LOUD.....she had " temper tantrums " at about age 15

months -20 months.......but nothing severe......and all seemed like age

appropriate.......but lately her tantrums have begun again......only a bit

more severe.....is this normal for a 39 month old???? She is bigger and

stronger now......so that is scary. The other day ( couple weeks ago) I

took her down to Childrens for therapy.....she did fine etc.....well when we

were leaving I had to go to the restroom.....so we went.....afterwards I was

washing my hands and she wanted to wash hers....fine. Well she felt her coat

was getting in the way so she took it off.....BIG MISTAKE. She would not put

it back on.....and its COLD here. So I had to physically hold her down to

get her coat on......and since I am fairly petite....and she is a tough

cookie.....it was a struggle! She does not attempt to bite me....ever.....or

hit me or something but she thrashes around.....tries to wiggle out of my

grasp and SCREAMS like I am killing her. We were bent down.....she ended

up kicking off the floor and I was behind her.....her head flew back and

smacked my lip....I had a little bruise for a while. Stuff like that.....I

am not sure if its her personality.....her age.....or the communication

factor??? I get soooooo embarrassed. And I am concerned for her. They are

not like everyday or anything but have increased in the recent month. She

also is stuffed up alot......so maybe the allergies thing?? Her therapist

asked me to look into allergies.....

Oh ....but her teacher at school says she is never like that for them??????

go figure.

Thanks....

[Guest guest]

In a message dated 12/27/99 12:05:32 PM Eastern Standard Time,

listenup@... writes:

<<

Here is a link that goes into a lot more detail about this test:

http://zingsolutions.com/ALLSA/appen9.htm

Kay

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

Thanks Kay!

[Guest guest]

In a message dated 12/27/99 11:46:22 AM Eastern Standard Time,

SDunnstern@... writes:

<< I used to worry about the lining up of her toys but for some reason it

seems

to help her feel in control and I limit it. >>

Crystal will line up toys as well.......and also likes to put stuff back in

the " proper " spot.......is this a good thing?????

[Guest guest]

In a message dated 12/27/99 1:40:01 PM Eastern Standard Time, dbozak@...

writes:

<<

Okay - I'm dropping in - hope its okay. Nic lines up his toys - and does

not like it if you mess them up. And puts things in their places as well

(including closing all the drawers and cabinets in the kitchen).

Donna

-----Original Message----- >>

Same here........and how old is he again?????

[Guest guest]

In a message dated 12/27/99 1:42:47 PM Eastern Standard Time, dbozak@...

writes:

<< He will be 2 in Jan. (less than 2 weeks!!! - yet another stress - a

birthday party to plan!)

Donna >>

Well a HAPPY BIRTHDAY to him!!!

[Guest guest]

In a message dated 12/27/99 1:43:01 PM Eastern Standard Time,

lavhome@... writes:

<<

I sure wish my kids were inflicted with that one. >>

LOL......when Crystal was opening her stocking stuff......she got nail polish

(little tiny bottle) and ran right over to put it up on the

refridgerator....where we keep the other bottle.....lol Then she got some

gum.......took that right over there as well....to put up in the candy dish.

I go " awh how sweet.....she wants to put it away right away " .....but my

husband goes " that may not be a good thing.....maybe the start of obsessive

compulsive disorder " . But maybe at this age they like order???

[Guest guest]

,

I have a great solution for the coat situation and you may think I am

crazy. Pick your battles, I would have said to her, It's cold outside and

it's your choice but I don't think you are making a good choice and then walk

out and don't let her wear her coat. This worked really well with .

It only took her one time of being cold to always make the right choice.

Sheri

[Guest guest]

you should E-mail me privately

Sdunnstern@aol

My husband still lines up his " toys " it's a little OCD but I think a little

OCD never hurt anybody. I was told if she wont go out of the hose because

she can't stop lining up her toys then you have a problem.

Sheri

[Guest guest]

I love having a neat daughter and husband.

But used to be a lot neater

Sheri

[Guest guest]

I hope you don't think I was making fun of OCD. I guess I just had a little

too much Holiday Cheer. I have a nephew that suffers terribly from OCD. He

breaks through double doses of medication and struggles daily with some of

the simplest activities. If any behavior controls the child I would RUN to a

specialist.

Sheri

[Guest guest]

Happy Birthday to NIC!!!

I am sure it will be fun!!!!

From,

Deb Rabideau

's Mom

[Guest guest]

> oh wow.......this is EXACTLY what we are going through. Her speech

therapist

> just said at the last visit...... " she sounds more nasal for some

> reason? " ........huh......so this really could be allergies huh? I don't

have

> any and neither does my husband so we are unfamiliar with all

this......did

> the nasal spray really help Kay????

Yes, the spray really helps him. He is still allergic to these things, but

it does help him to tolerate many environments that he couldn't otherwise.

As I mentioned before, I can tell when he tries to fake taking it because he

starts getting dark rings under his eyes, but I didn't mention that he gets

the sniffles as well. Of course, I still have to go through the regimen at

home for controlling dust, but with him using the spray, I don't have to be

quite as compulsive about it as I would otherwise have to be.

I guess he was about 3 years old when he had the skin patch test.

Here is a page about the different types of nose sprays available:

http://mayohealth.org/mayo/9506/htm/spra_tab.htm

And here's an interesting site I ran across while looking for something

about the nose sprays:

Practical ENT For Primary Care Physicians

http://icarus.med.utoronto.ca/carr/manual/outline.html

Hugs,

Kay