Re: Tubes in ears???

[Guest guest]

Just a couple of thoughts here - does your dd have sensory issues? Could the

balance issues be a sensory-vestibular problem? As for the ear infections,

sometimes kids with sensory issues (and many kids who don't have sensory issues)

never complain about ear infections - she may have been having them but the pain

didn't register with her.

When Josh was about 1 1/2 yo (he's 9.5 now), he started getting ear infections

(and let everyone know about them!). We got tubes when he was just about 2.

They fell out, as they are supposed to, within about a year, and he has never

had an ear infection since.

So, there's nothing wrong with getting a second opinion, and I suppose waiting

a couple of weeks really wouldn't hurt anything, but I don't see anything wrong

with going ahead to have the tubes to relieve the fluid build-up (which, in and

of itself, can cause balance issues - I've got Meniere's disease which is caused

by fluctuations in the fluid in my inner ear).

Sherry and Josh

Tara Romanowich <tvromanowich@...> wrote:

When we had our NACD evaluation, the evaluator suggested that my

dd...who has a diagnosis of global apraxia...almost 3...not walking or no

speech...get a tympanogram done. we went today and the results showed some fluid

in her ears. The doctor (at CHOP) reccomended tubes in her ears. She did had a

cold last week and is still congested. i was surprised she suggested it so

quickly. I think I would feel more comfortable to retest to see if the fluid is

there in a few weeks and then make a decision. Has anyone done this for their

child? My dd has never had an ear infection that we know about. But she does

have major balance issues... Thanks tara

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[Guest guest]

My problem is this: we got them with no infection (color of fluid

tells that story). It was solely build up. Doubled his vocabulary day

after surgery. Lost all vocabulary next day. Anesthesia was the

culprit. Avoid fluorine and nitrous oxide at all costs. Dairy

removal, the ENT now agrees, was the better solution. Stinks for me

now doesn't it. BUT if you really need the tubes and your story is

different there are safer anesthesia alternatives.

> When we had our NACD evaluation, the evaluator suggested

that my dd...who has a diagnosis of global apraxia...almost 3...not

walking or no speech...get a tympanogram done. we went today and the

results showed some fluid in her ears. The doctor (at CHOP)

reccomended tubes in her ears. She did had a cold last week and is

still congested. i was surprised she suggested it so quickly. I think

I would feel more comfortable to retest to see if the fluid is there

in a few weeks and then make a decision. Has anyone done this for

their child? My dd has never had an ear infection that we know about.

But she does have major balance issues... Thanks tara

>

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

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[Guest guest]

They may have jumped the gun b/c it is easy to do and with a child

that has no speech it is very hard to test hearing. ENTs really like

tubes for kids with no speech b/c then everyone KNOWS it's not

hearing loss causing the speech delay....ugh. My son had no speech,

not walking at three -- it was very hard to do hearing test. They do

have a way to do it where they have speakers in the room and play low

sounds or parts of songs and if the child turns toward the sound -

then they've " heard it " . I would push for a hearing test - they will

do a tympanogram on that day too (or they SHOULD) just to see if

there is fluid that day. If there is any hearing loss then you can

arrange the tubes. As always - take their suggestions and make your

own decisions.

>

> When we had our NACD evaluation, the evaluator suggested that my

dd...who has a diagnosis of global apraxia...almost 3...not walking

or no speech...get a tympanogram done. we went today and the results

showed some fluid in her ears. The doctor (at CHOP) reccomended tubes

in her ears. She did had a cold last week and is still congested. i

was surprised she suggested it so quickly. I think I would feel more

comfortable to retest to see if the fluid is there in a few weeks and

then make a decision. Has anyone done this for their child? My dd

has never had an ear infection that we know about. But she does have

major balance issues... Thanks tara

>

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

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>

[Guest guest]

Exactly, one of the telling things was he had good hearing with the

fluid. I think the ENT did the tubes to address future peekaboo

fluid. Nice idea but as he now agrees, allergin removal would have

done the same thing.

> >

> > When we had our NACD evaluation, the evaluator suggested that my

> dd...who has a diagnosis of global apraxia...almost 3...not walking

> or no speech...get a tympanogram done. we went today and the

results

> showed some fluid in her ears. The doctor (at CHOP) reccomended

tubes

> in her ears. She did had a cold last week and is still congested.

i

> was surprised she suggested it so quickly. I think I would feel

more

> comfortable to retest to see if the fluid is there in a few weeks

and

> then make a decision. Has anyone done this for their child? My dd

> has never had an ear infection that we know about. But she does

have

> major balance issues... Thanks tara

> >

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

> > Never miss a thing. Make your homepage.

> >

> >

[Guest guest]

I would get the tubes if a re-test shows fluid in the ears. This is

a very common reason for auditory processing issues. Also, I forget -

- are you dairy free? We haven't had any congestion since we gave up

dairy. In the NACD dvd " Learning and Attention Problems " , Bob Doman

suggests getting a tympanagram every two weeks for two months to see

if chronic fluid is a problem (vs. related to a cold virus, etc.)

That might be the way to go before tubes.

I always want to know the CAUSE of the problem, too. Tubes fix the

symptom, not the cause. Is it dairy? Is it structural? Is it

another allergy?

in NJ

>

> When we had our NACD evaluation, the evaluator suggested that my

dd...who has a diagnosis of global apraxia...almost 3...not walking

or no speech...get a tympanogram done. we went today and the results

showed some fluid in her ears. The doctor (at CHOP) reccomended tubes

in her ears. She did had a cold last week and is still congested. i

was surprised she suggested it so quickly. I think I would feel more

comfortable to retest to see if the fluid is there in a few weeks and

then make a decision. Has anyone done this for their child? My dd

has never had an ear infection that we know about. But she does have

major balance issues... Thanks tara

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

Thanks to everyoe for your posts. It may make sense what Sherry said, Eva does

have sensory issues...she is not walking at almost three...some days her balance

seems worse than others...and she DOES pull at het ears a lot and also itch her

nose constantly (don't know what that means), but she's never had an ear

infection that I've known about. But you have a good point, maybe she has had a

lot, but the pain just never registered the way it would for a neurotypical

child. Another thing that is strange...she loves to lean back in the tib with

her ears under the water....I tried this one time and thought it was such an

uncomfortable feeling in my ears...this is one of the reasons why she loves her

baths so much. And Lizzy, we don't have any casein in her diet.. and also, what

would be the alternative to nitrous oxide if we would do the surgery? Thanks so

much.

:-) tara

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[Guest guest]

Another consideration is genetic. Hubby and both kids have a specific

ear wax gene allegedly. Did not play into this for us though.

> >

> > When we had our NACD evaluation, the evaluator suggested that my

> dd...who has a diagnosis of global apraxia...almost 3...not walking

> or no speech...get a tympanogram done. we went today and the

results

> showed some fluid in her ears. The doctor (at CHOP) reccomended

tubes

> in her ears. She did had a cold last week and is still congested.

i

> was surprised she suggested it so quickly. I think I would feel

more

> comfortable to retest to see if the fluid is there in a few weeks

and

> then make a decision. Has anyone done this for their child? My dd

> has never had an ear infection that we know about. But she does

have

> major balance issues... Thanks tara

> >

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

> > Never miss a thing. Make your homepage.

> >

> >

[Guest guest]

Itchy nose could be allergy or metals. In my daughter we do think it

was metals. There is reading on that. I did not chase the reading as

it left.

>

> Thanks to everyoe for your posts. It may make sense what Sherry

said, Eva does have sensory issues...she is not walking at almost

three...some days her balance seems worse than others...and she DOES

pull at het ears a lot and also itch her nose constantly (don't know

what that means), but she's never had an ear infection that I've

known about. But you have a good point, maybe she has had a lot, but

the pain just never registered the way it would for a neurotypical

child. Another thing that is strange...she loves to lean back in the

tib with her ears under the water....I tried this one time and

thought it was such an uncomfortable feeling in my ears...this is one

of the reasons why she loves her baths so much. And Lizzy, we don't

have any casein in her diet.. and also, what would be the alternative

to nitrous oxide if we would do the surgery? Thanks so much.

> :-) tara

>

>

>

>

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

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>

>

[Guest guest]

and Lizzy, She is off all casein, gluten and soy and all her allergy

testing showed nothing. Could the cause be maybe a structural thing? I'm all

about finding the cause too things...I totally agree. Lizzy,I'm not sure what

you mean about the " off pain response " by claudia. I searched it, but I think I

need more specific key words. thanks. tara

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[Guest guest]

Allergy testing in immature immune systems is not always reliable.

Feast Without Yeast is a book that will help you sort of test diet to

see what issues are involved. Another book, Is this your child? by

Doris Rapp, covers atypical allergy reactions. It may help you see

things that were her norm in a whole new light.

I will do my best to find a recent message from Dr. that sort of

explains it more. For testing I think it is in the Apraxia labs folder.

Yeast can be an aggravator so while the diet she is on may help her not

produce as much overgrowth she may need to be treated for what is in

there. That I cannot know. There is a checklist in the book The Yeast

Connection that may be helpful. If yeast is part of the puzzle a whole

food diet would help your cause but that would not be the panacea, just

another part of this. Are you seeing Dr. Agin? She could help more I

think if this is your deal.

I will find the post and that may help you further.

[Guest guest]

I don't think I've gotten all the emails in this thread but I'm going to chime

in again - usually the reason a young kid gets ear infections or gets fluid

build-up is because there is a structural immaturity - the ear canal is aimed in

the wrong direction so it causes fluid to build, and thus infections to set in -

a good ENT will have explained that all to you and used those wonderful pictures

they have on the office walls! LOL! Whether the kid has a sensory issue on top

of that, affecting whether s/he can feel the pain, is another story and aspect

to the whole thing.

Sherry and Josh

Tara Romanowich <tvromanowich@...> wrote:

and Lizzy, She is off all casein, gluten and soy and all her

allergy testing showed nothing. Could the cause be maybe a structural thing? I'm

all about finding the cause too things...I totally agree. Lizzy,I'm not sure

what you mean about the " off pain response " by claudia. I searched it, but I

think I need more specific key words. thanks. tara

---------------------------------

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[Guest guest]

My first son had so much fluid in his ears that he wasn't hearing

correctly. In hindsight, I would have pushed more at 9mo for tubes

when he wasn't sitting up and not rolling over etc... than saying oh

he's a big boy lets wait. UGH

I ended up with a 2 yr old with the verbal skills of a 9 mo old. We

didn't really start to see progress with therapy until we got 100%

casin free; vit e,carnintine and fish oil. We are now 2 yrs into very

intensive therapy and are making progress but no where near where we

could be.

I know this as the baby (3rd son) got tubes at 9 months and is now

speaking in 2-3 word utterances at 17 months. Just amazing at the

turnaround since getting tubes in the baby and giving up casin. Our

Ped said the baby is " 1000 times better " than when she first met him

last April at 7 mo. no supplements for the baby.

Second son has had 2 sets of tubes and is doing much better off of

dairy as well. no supplements

It is hard to make progress and learn if you do not feel well. the

vestibular sense is such an important one, that if it doesn't develop

correctly - be prepared for YEARS of therapy to recover it.

>

> When we had our NACD evaluation, the evaluator suggested that my

dd...who has a diagnosis of global apraxia...almost 3...not walking or

no speech...get a tympanogram done. we went today and the results

showed some fluid in her ears. The doctor (at CHOP) reccomended tubes

in her ears. She did had a cold last week and is still congested. i

was surprised she suggested it so quickly. I think I would feel more

comfortable to retest to see if the fluid is there in a few weeks and

then make a decision. Has anyone done this for their child? My dd has

never had an ear infection that we know about. But she does have

major balance issues... Thanks tara

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

On the diet, figuring out the supplements, tubes in there now, TLP in

progress and language coming along. Fluoride is part of our beat. Any

hope for me avoiding a second set?

> >

> > When we had our NACD evaluation, the evaluator suggested that my

> dd...who has a diagnosis of global apraxia...almost 3...not walking

or

> no speech...get a tympanogram done. we went today and the results

> showed some fluid in her ears. The doctor (at CHOP) reccomended

tubes

> in her ears. She did had a cold last week and is still congested.

i

> was surprised she suggested it so quickly. I think I would feel

more

> comfortable to retest to see if the fluid is there in a few weeks

and

> then make a decision. Has anyone done this for their child? My dd

has

> never had an ear infection that we know about. But she does have

> major balance issues... Thanks tara

> >

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

> > Never miss a thing. Make your homepage.

> >

> >

[Guest guest]

Apparently I did not have a good ENT from the explaining part. Could

he tell me, now that tubes are in there, id there is an abnormality?

We had fluid but no infection and tubes were inserted.

> and Lizzy, She is off all casein, gluten and soy

and all her allergy testing showed nothing. Could the cause be maybe

a structural thing? I'm all about finding the cause too things...I

totally agree. Lizzy,I'm not sure what you mean about the " off pain

response " by claudia. I searched it, but I think I need more specific

key words. thanks. tara

>

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

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>

[Guest guest]

I thought you were already on the diet. Hmmm. What else could it be?

I don't know enough about this topic, but perhaps environmental

allergies? My (limited) understanding is that congestion leads to

fluid, so it could be anything that causes congestion: allergies of

any kind, cold viruses, etc. I do think anatomy plays a part, though.

Many/most kids outgrow this fluid problem around six years old, I think

because the angle of the middle ear changes over time from horizontal

to more diagonal/vertical, allowing for drainage. (Does that sound

right to someone who knows about these things?)

My son had congestion for about six months of the year for a

couple of years. Allergy testing came up with nothing, so we went to a

homeopathic (also medical) doctor in Rumson who was recommended by a

friend of mine. I'm not a true believer in homeopathy, but what he did

worked for . We started seeing him in May, which is the end of

's congestion season. He gave us something like nine different

things to take (two liquids and seven of those tiny pellets), and

NEVER HAD CONGESTION AGAIN! My friend and I call him the witch

doctor -- we don't know why it works, but it does. That said, I

stopped seeing him when he prescribed what is basically arsenic and

mercury for 's GI issues and other delays. Maybe he would be

over all this by now if we stuck with it, but I lost my trust.

in NJ

>

> and Lizzy, She is off all casein, gluten and soy and all her

allergy testing showed nothing. Could the cause be maybe a structural

thing? I'm all about finding the cause too things...I totally agree.

Lizzy,I'm not sure what you mean about the " off pain response " by

claudia. I searched it, but I think I need more specific key words.

thanks. tara

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

I put coconut oil on the ears to help with congestion. Not a cure all

but seemed to do something.

> >

> > and Lizzy, She is off all casein, gluten and soy and all

her

> allergy testing showed nothing. Could the cause be maybe a

structural

> thing? I'm all about finding the cause too things...I totally

agree.

> Lizzy,I'm not sure what you mean about the " off pain response " by

> claudia. I searched it, but I think I need more specific key

words.

> thanks. tara

> >

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

> > Looking for last minute shopping deals? Find them fast with

> Search.

> >

> >

[Guest guest]

I don't know, I am just a mom, BUT I honestly believe that if I had

gotten #2 son off of milk he wouldn't have gotten either set. The

first set was due to upper respiratory distress and 6 double ear

infections over a 2 month period.

The milk really added congestion and he has a predisposition to upper

respiratory distress. We had another ER visit at the beg of January.

#2 son is not on the supplements as he is an Ear infection kid which I

think is different from an ear fluid kid - which #1 son is.

I do know since going casin free we haven't been to either the new

great ped or our fab. ENT except for well baby checks. Which has been

fab on the pocket book.

I just wish the lousy ped dr I went to with those two had gotten to

the underlying symptom of the eczema rather than give me several very

expensive topical creams to clear it up.

I wish someone had said to me, Just try dairy free for two weeks to

see if you notice a difference 4 yrs 10 months ago. Maybe I could

have a " normal " preschooler right now. Not to mention all that extra

cash since I wouldn't be paying for intensive therapy!!!

[Guest guest]

Gosh, everyone has been so helpful. Thank you for ALL of your responses. We

have decided to go ahread with the surgery and get the tubes. I was considering

checking a few more times with a tympanogram, but there are too many things that

point to fluid in the ears being a problem, and with the level of delays she

has....it just seems like the right choice. I am now on the abmd board figuring

out alternatives to nitrous oxide. i am learning so much. Aren't we all

leanring so much from our kids.... thanks again. tara

---------------------------------

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[Guest guest]

While I warned you at first I learned a lot. I think you made the right

choice and I think you can find the right anesthesia. Hang tough and

keep us posted.

>

> Gosh, everyone has been so helpful. Thank you for ALL of your

responses. We have decided to go ahread with the surgery and get the

tubes. I was considering checking a few more times with a tympanogram,

but there are too many things that point to fluid in the ears being a

problem, and with the level of delays she has....it just seems like the

right choice. I am now on the abmd board figuring out alternatives to

nitrous oxide. i am learning so much. Aren't we all leanring so much

from our kids.... thanks again. tara

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

NO KIDDING!!!!

I so wish that I knew the things back when my child was 2 that I know now.....

my son's life would be 100% different!

I blame lousy professionals with their continuous 'wait and see' attitude....

now I 'SEE'.... I really do.

Janice

Mother of Mark, 13

[Guest guest]

Tara - where are you having the surgery? I think you and I chatted a

while back about doctors. Are you in NJ? We went to Dr Samadi at

Hackensack University. Awesome guy - highly recommended.

tina in NJ

>

> Gosh, everyone has been so helpful. Thank you for ALL of your

responses. We have decided to go ahread with the surgery and get the

tubes. I was considering checking a few more times with a tympanogram,

but there are too many things that point to fluid in the ears being a

problem, and with the level of delays she has....it just seems like the

right choice. I am now on the abmd board figuring out alternatives to

nitrous oxide. i am learning so much. Aren't we all leanring so much

from our kids.... thanks again. tara

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

I ended up going to CHOP... Dr. Zur. I do muscle testing and I had 4 people

respond to my post with 4 different doctors, so I just tested and the doctor

from CHOP came up strong...

All the doctors seemed great from what I read about them. :-) tara

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[Guest guest]

We've seen two ENTs from CHOP, and both were excellent. We've seen a

number of other docs there, too, and I really liked all of them except

Spergel in allergy.

in NJ

>

> I ended up going to CHOP... Dr. Zur. I do muscle testing and I had 4

people respond to my post with 4 different doctors, so I just tested

and the doctor from CHOP came up strong...

>

> All the doctors seemed great from what I read about them. :-) tara

>

>

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

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Try it now.

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>