Re: RSS and ear infections

[Guest guest]

Tammy,

My son, , had ear infections all the time. Our pediatrician

sent us to an ENT who told us would need tubes placed in his

ears if we ever wanted him to be (or try to be) infection free. They

just have smaller canals, and fluid tends to just build up there so

easily and stay. After it is there so long it becomes infected.

And, with , it didn't need to be there very long before it got

infected. Shoot, there were times the doctors couldn't even see

fluid build-up, but could see how bulging his ear drums were and how

red they were. I was afraid to have tubes placed too. There is

always a chance that they won't help. Some kids it helps, othres it

doesn't seem to help all that much. Luckily is one of those

kids that it has helped. He got the tubes placed this past January

and he didn't have any more infections. We will see how this fall

and winter go, but so far so good. He got the tubes that are

supposed to be the longest lasting tubes. So, hopefully he won't

have to have them replaced so often. They are called T tubes. Why

are you so hesitant to have tubes placed? It is not a major

surgery. was sedated and his surgery took 10 minutes at the

most. We were back home within a few hours. And the only reason it

took that long is because we live far from the hospital. But, he was

fine right after the surgery. He never had the first problem. I

just hated for him to have to deal with those awful infections. Ask

any adult hear that has dealt with an ear infection how painful it

is. Just imagine when your ear is so infected that it is on the

verge of bursting! I hated that for and if I could help him

not have to deal with that, I wanted to do whatever needed to be

done. So, that is why I decided to try the tubes. Even though I

knew there was a chance they wouldn't work.

As far as an allergist goes, I think they can diagnose an infection,

but they aren't as specialized as an ENT is. Maybe your ped. is

thinking she is getting infections due to allergies??? I would

totally go with the ENT first, and then worry about allergies. I am

inclined to think that the infections aren't from allergies, but

simply from your daughters diagnosis of RSS. Small canal and sinus

passages create this problem.

Sorry this is so long. But, I hope I have helped in some way.

Jodi R.

, 3, RSS

> Hey Everyone,

>

> Yesterday, slept all day and this morning she started

> throwing up. I took her to the doctor immediately due her getting

> dehydrated so quickly and didn't want to take any chances.

>

> She has another double ear infection. She had 4 this past winter

> and I wanted to take her to an ENT, but her pediatrician said to

> hold off till the end of winter that sometimes they will not have

> any during the summer time. She also suggested maybe taking her to

> an allergist instead, since she gets alot of colds.

>

> I know that ear infections are pretty common in RSS kids. Can

> anyone offer any advice as to what you would do. I don't want to

do

> the ear tube thing, but if it will help her from being sick I will

> do it. Also, can an allergist help with ear infections.

>

> Thanks,

> Tammy

> Mom to 19mos 14lbs 13oz, RSS/SGA, GERD and fundoplication

> (which doesn't work) and g-tube

[Guest guest]

Jodi,

I'm hesitant, because she has already been through so much in her young life,

that I just don't want to put her through another procedure. But, on the other

hand, I want her get better and a little 10 minute procedure is alot better than

having one ear infection after another. Thanks, for the advice.

Tammy

Jodi wrote:

Tammy,

My son, , had ear infections all the time. Our pediatrician

sent us to an ENT who told us would need tubes placed in his

ears if we ever wanted him to be (or try to be) infection free. They

just have smaller canals, and fluid tends to just build up there so

easily and stay. After it is there so long it becomes infected.

And, with , it didn't need to be there very long before it got

infected. Shoot, there were times the doctors couldn't even see

fluid build-up, but could see how bulging his ear drums were and how

red they were. I was afraid to have tubes placed too. There is

always a chance that they won't help. Some kids it helps, othres it

doesn't seem to help all that much. Luckily is one of those

kids that it has helped. He got the tubes placed this past January

and he didn't have any more infections. We will see how this fall

and winter go, but so far so good. He got the tubes that are

supposed to be the longest lasting tubes. So, hopefully he won't

have to have them replaced so often. They are called T tubes. Why

are you so hesitant to have tubes placed? It is not a major

surgery. was sedated and his surgery took 10 minutes at the

most. We were back home within a few hours. And the only reason it

took that long is because we live far from the hospital. But, he was

fine right after the surgery. He never had the first problem. I

just hated for him to have to deal with those awful infections. Ask

any adult hear that has dealt with an ear infection how painful it

is. Just imagine when your ear is so infected that it is on the

verge of bursting! I hated that for and if I could help him

not have to deal with that, I wanted to do whatever needed to be

done. So, that is why I decided to try the tubes. Even though I

knew there was a chance they wouldn't work.

As far as an allergist goes, I think they can diagnose an infection,

but they aren't as specialized as an ENT is. Maybe your ped. is

thinking she is getting infections due to allergies??? I would

totally go with the ENT first, and then worry about allergies. I am

inclined to think that the infections aren't from allergies, but

simply from your daughters diagnosis of RSS. Small canal and sinus

passages create this problem.

Sorry this is so long. But, I hope I have helped in some way.

Jodi R.

, 3, RSS

> Hey Everyone,

>

> Yesterday, slept all day and this morning she started

> throwing up. I took her to the doctor immediately due her getting

> dehydrated so quickly and didn't want to take any chances.

>

> She has another double ear infection. She had 4 this past winter

> and I wanted to take her to an ENT, but her pediatrician said to

> hold off till the end of winter that sometimes they will not have

> any during the summer time. She also suggested maybe taking her to

> an allergist instead, since she gets alot of colds.

>

> I know that ear infections are pretty common in RSS kids. Can

> anyone offer any advice as to what you would do. I don't want to

do

> the ear tube thing, but if it will help her from being sick I will

> do it. Also, can an allergist help with ear infections.

>

> Thanks,

> Tammy

> Mom to 19mos 14lbs 13oz, RSS/SGA, GERD and fundoplication

> (which doesn't work) and g-tube

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

[Guest guest]

--I THOUGHT I WOULD RESPOND SINCE I AM ON THE OTHER END OF THE STICK,

SO TO SPEAK, KYLA HAS HAD 3 SETS OF TUBES AND THEY HAVE NOT HELPED

HER ONE BIT, SHE GETS THE TUBES, AND WITHIN A FEW WEEKS SHE HAS

ANOTHER EAR INFECTION, THIS LAST TIME SHE HAD TUBES IN THEY REMOVED

HER ADNOIDS TO HELP WITH HER SINUS INFECTIONS, AND IT HAS A LOT....MY

SUGGESTION IS TELL YOUR PEDIATRICIAN YOU WANT TO SEE A ENT, IF YOU

NEED A REFERRAL PUSH THE ISSUE UNTIL YOU GET IT....SEE WHAT THE ENT

THINKS, I WOULD DEFINATELY GET A SET OF TUBES AND SEE IF IT HELPS,

OUR ENT WANTS TO DO A 4TH SET AND GOT MAD WHEN I REFUSED, ITS A WASTE

OF TIME BECAUSE IT DON;T HELP US, BUT MAYBE YOU WILL BE LUCKY AND

THEY WILL HELP LIKE THEY DID ANDREW, AS FAR AS THE ALLERGIST, WE HAVE

NEVER BEEN TO ONE SO I HAVE NO SOLUTIONS, HOPE THIS HELPS, STEPHANIE

KYLA 4 RSS JONATHAN 19 MONTHS BAD BOY

- In RSS-Support , " t_mayeaux " <t_mayeaux@y...> wrote:

> Hey Everyone,

>

> Yesterday, slept all day and this morning she started

> throwing up. I took her to the doctor immediately due her getting

> dehydrated so quickly and didn't want to take any chances.

>

> She has another double ear infection. She had 4 this past winter

> and I wanted to take her to an ENT, but her pediatrician said to

> hold off till the end of winter that sometimes they will not have

> any during the summer time. She also suggested maybe taking her to

> an allergist instead, since she gets alot of colds.

>

> I know that ear infections are pretty common in RSS kids. Can

> anyone offer any advice as to what you would do. I don't want to

do

> the ear tube thing, but if it will help her from being sick I will

> do it. Also, can an allergist help with ear infections.

>

> Thanks,

> Tammy

> Mom to 19mos 14lbs 13oz, RSS/SGA, GERD and fundoplication

> (which doesn't work) and g-tube

[Guest guest]

Tammy,

I know a lot of people prefer not to get ear tubes, but they have

saved my 9 year old RSS son from many a rough winter. The constant

throwing up actually is what made his ears infected and then he would

get a cold from the infection. It's worth looking in to!!! (He had 12

ear infections in 12 months between the ages of 5 months and 18

months!!!) After the ear tubes he had one ear infection in 18 months

until his tubes fell out and he started the cycle all over again. I

hope this gives you a little insight!!!

Blessings,

Carmen, mom to Storm, 9y10m, RSS, 49.5 inches and 59 pounds. And mom

to a host of others.

[Guest guest]

Here are my experiences with tubes. All 4 of my kids have had tubes.

Coby my son with rss is on his 3rd set now. My oldest daughter did

not sleep all night until she was 12 months old and it was the day she

had her tubes placed. She had a constant ear infection from 3 months

old until she got her tubes. That was over 9 yrs ago and I think she

has had 2 or 3 ear infections since then. My son that does not have

rss had fluid in his middle ear and was sent to an allergist and had

tubes place. The allergist did a lot of testing and never found

anything. He also has had only 2 infections in the 7 yrs since then.

Coby's twin sister had tubes done with Coby on his 2nd set and she has

had 1 ear infection since then and that was over a year ago. So if

you are counting %'s then my family is a perfect example of tubes

working.

However, with Coby it is more difficult. A set of tubes will stay in

an average childs ears for 6 months to a year, I believe. That is

long enough to allow the child to grow and their canals to handle the

fluid. With our children with rss, they do not grow as fast and they

have low set ears so the structure of their canals are working against

them as well. Coby has not had an infection while his tubes have been

in place, but the moment his tubes come out he immediately gets an

infection.

I have been through a total of 6 sets of tubes now with my kids and

every time they have came home in a better mood and feeling better

then they did when the went into for the procedure. They don't seem

to remember any of it and finally the presure is relieved.

I hope this helps you. Good luck!

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twin terrors!

[Guest guest]

Hi Tammy,

had tubes put in at age 3. They have worked wonders. No more

infections (well actually, they can still get infections but

everything drains right away so no antibiotics and no pain).

I highly recommend going that way.

BTW, I myself had two sets of tubes as a child.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

le,

Did Coby see an ENT at all. My pediatrician wants to go to an

allergist, but I've been thinking she needs to see an ENT. Although, she does

have alot of congestion, which I'm sure is from allergies and if the congestion

is causing her ear infections then an Allergist sounds more like the answer.

Can an Allergist prescribe tubes?

Thanks,

Tammy

Mom to 19 mos 14lbs 13oz RSS/SGA, GERD, g-tube and just starting GHT and

6 yrs ADHD

le wrote:

Here are my experiences with tubes. All 4 of my kids have had tubes.

Coby my son with rss is on his 3rd set now. My oldest daughter did

not sleep all night until she was 12 months old and it was the day she

had her tubes placed. She had a constant ear infection from 3 months

old until she got her tubes. That was over 9 yrs ago and I think she

has had 2 or 3 ear infections since then. My son that does not have

rss had fluid in his middle ear and was sent to an allergist and had

tubes place. The allergist did a lot of testing and never found

anything. He also has had only 2 infections in the 7 yrs since then.

Coby's twin sister had tubes done with Coby on his 2nd set and she has

had 1 ear infection since then and that was over a year ago. So if

you are counting %'s then my family is a perfect example of tubes

working.

However, with Coby it is more difficult. A set of tubes will stay in

an average childs ears for 6 months to a year, I believe. That is

long enough to allow the child to grow and their canals to handle the

fluid. With our children with rss, they do not grow as fast and they

have low set ears so the structure of their canals are working against

them as well. Coby has not had an infection while his tubes have been

in place, but the moment his tubes come out he immediately gets an

infection.

I have been through a total of 6 sets of tubes now with my kids and

every time they have came home in a better mood and feeling better

then they did when the went into for the procedure. They don't seem

to remember any of it and finally the presure is relieved.

I hope this helps you. Good luck!

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twin terrors!

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

[Guest guest]

It was my 8 yr old son that saw the allergist when he was 2. The ENT

we saw at that time had an allergy dept as well. Although, if I'm not

mistaken I think that ENT work hand in hand with allergies. My only

worry is that they spend so much time on allergies and never really

figure anything out and your still fighting the ear infections the

whole time. What they finally did with my son was place the tubes and

then he started taking Zyrtec (allergy meds) and it cleared EVERYTHING

up. Still to this day I give Brock Zyrtec as needed and his tubes are

long gone and the infections as well.

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twins

[Guest guest]

Hi all!

I have been out of town and I am trying to catch up on everything. I just

wanted to comment that Zoe has had two sets of tubes and they are a blessing!

She also had half of her adenoids removed last time. This combined with the

fact that our ENT and Immunologist work together has really helped. We found

out that Zoe was allergic to like 12 things and had to put her on a special diet

for a while. We have now added back some foods that she was only slightly

allergic to (wow, does that make life easier!). Anyway, I just want to say that

Zoe has been 15 months now without antibiotics. She has been a little sick from

time to time but she gets over it in a few days. The difference in incredible.

Up until last year Zoe had been on antibiotics since she was a few months old.

One thing after another it seemed like. The best part is that once they are

healthy these kids really take off developmentally. It used to be that an ear

infection or sinus infection would throw her back a

few months and she could never catch up.

I just highly recommend seeing and ENT and an Immunologist. Find out what is

going on and take care of it as soon as possible. I wish I wouldn't have been

so overwhelmed and waited so long.

(mom to Zoe 3yrs 3months)

le wrote:

It was my 8 yr old son that saw the allergist when he was 2. The ENT

we saw at that time had an allergy dept as well. Although, if I'm not

mistaken I think that ENT work hand in hand with allergies. My only

worry is that they spend so much time on allergies and never really

figure anything out and your still fighting the ear infections the

whole time. What they finally did with my son was place the tubes and

then he started taking Zyrtec (allergy meds) and it cleared EVERYTHING

up. Still to this day I give Brock Zyrtec as needed and his tubes are

long gone and the infections as well.

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twins

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

[Guest guest]

,

What kind(s) of test(s) did Zoe need to take to find out about her allergies?

I have taken those horrible skin prick tests, but Tim just had a blood test and

just found dust allergies several years ago. I'm wondering if he's allergic

to more than that. I haven't been able to get the doctors to give me a

satisfactory explanation of why a person should choose the skin or blood tests,

but it seems the allergists always used the skin tests, which are terribly

uncomfortable!

Inga

At 01:32 PM 6/21/2005 -0700, you wrote:

>

> Hi all!

> I have been out of town and I am trying to catch up on everything. I just

> wanted to comment that Zoe has had two sets of tubes and they are a

> blessing! She also had half of her adenoids removed last time. This

> combined with the fact that our ENT and Immunologist work together has really

> helped. We found out that Zoe was allergic to like 12 things and had to put

> her on a special diet for a while. We have now added back some foods that

> she was only slightly allergic to (wow, does that make life easier!).

> Anyway, I just want to say that Zoe has been 15 months now without

> antibiotics. She has been a little sick from time to time but she gets over

> it in a few days. The difference in incredible. Up until last year Zoe had

> been on antibiotics since she was a few months old. One thing after another

> it seemed like. The best part is that once they are healthy these kids

> really take off developmentally. It used to be that a few months and she

> could never catch up.

>

> I just highly recommend seeing and ENT and an Immunologist. Find out what is

> going on and take care of it as soon as possible. I wish I wouldn't have

> been so overwhelmed and waited so long.

>

>

> (mom to Zoe 3yrs 3months)

> le wrote:

> It was my 8 yr old son that saw the allergist when he was 2. The ENT

> we saw at that time had an allergy dept as well. Although, if I'm not

> mistaken I think that ENT work hand in hand with allergies. My only

> worry is that they spend so much time on allergies and never really

> figure anything out and your still fighting the ear infections the

> whole time. What they finally did with my son was place the tubes and

> then he started taking Zyrtec (allergy meds) and it cleared EVERYTHING

> up. Still to this day I give Brock Zyrtec as needed and his tubes are

> long gone and the infections as well.

>

> le, mom to:

> Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twins

>

>

>

>

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

>

[Guest guest]

Inga,

Zoe's doctor started with the skin prick tests and then followed those results

up with the blood test. For example, Zoe was allergic to garlic and soy

according to the prick test so they tested her blood only for those two

allergens to see if the tests both showed the same result as far as how

sensitive she was. In this example she was highly allergic (can't remember if

it was a 5 on the scale) to soy in both tests. After we cut soy and garlic out

she was still having sickness although her reflux was better. The doctor then

performed a new test called Patch Testing which involves taking a sample of a

food and putting it on a disc and then taping the disc to her back. She had

about 20 (something) discs on her back for a few days. Boy did she stink!

So, they take the discs off and look at the results. In the areas where Zoe was

allergic to a food there was blistering and scabs. Some of the mild allergens

were like an eczema patch. They used the earlier test results from the soy and

garlic to " test " the results. Sure enough, the soy patch was just terrible. Zoe

was " allergic " to a whole bunch of foods according to this test. What my

husband was upset about is that reading the test is a matter of opinion. The

doctor first added milk to the list and then when we freaked out he then

retracted and said maybe the result wasn't strong enough to constitute an

" allergic reaction " . My husband was very upset by the list of things they said

Zoe was allergic to and he likes to have a more scientific reading. Anyway, it

worked. We removed those foods from her diet and then added back the ones she

was only mildly allergic to and she is fine now. We are supposed to go back and

have the test done again but Jeff doesn't want to. (Hint

here - my husband is in denial).

It was terrible when we were going through it but we all ate a lot healthier and

we lost a bunch of weight. We ended up adding foods back earlier than we were

supposed to because we couldn't get enough calories in Zoe on the extremely

restricted diet (not enough selection to make her want to even eat).

Inga wrote:

,

What kind(s) of test(s) did Zoe need to take to find out about her allergies?

I have taken those horrible skin prick tests, but Tim just had a blood test and

just found dust allergies several years ago. I'm wondering if he's allergic

to more than that. I haven't been able to get the doctors to give me a

satisfactory explanation of why a person should choose the skin or blood tests,

but it seems the allergists always used the skin tests, which are terribly

uncomfortable!

Inga

At 01:32 PM 6/21/2005 -0700, you wrote:

>

> Hi all!

> I have been out of town and I am trying to catch up on everything. I just

> wanted to comment that Zoe has had two sets of tubes and they are a

> blessing! She also had half of her adenoids removed last time. This

> combined with the fact that our ENT and Immunologist work together has really

> helped. We found out that Zoe was allergic to like 12 things and had to put

> her on a special diet for a while. We have now added back some foods that

> she was only slightly allergic to (wow, does that make life easier!).

> Anyway, I just want to say that Zoe has been 15 months now without

> antibiotics. She has been a little sick from time to time but she gets over

> it in a few days. The difference in incredible. Up until last year Zoe had

> been on antibiotics since she was a few months old. One thing after another

> it seemed like. The best part is that once they are healthy these kids

> really take off developmentally. It used to be that a few months and she

> could never catch up.

>

> I just highly recommend seeing and ENT and an Immunologist. Find out what is

> going on and take care of it as soon as possible. I wish I wouldn't have

> been so overwhelmed and waited so long.

>

>

> (mom to Zoe 3yrs 3months)

> le wrote:

> It was my 8 yr old son that saw the allergist when he was 2. The ENT

> we saw at that time had an allergy dept as well. Although, if I'm not

> mistaken I think that ENT work hand in hand with allergies. My only

> worry is that they spend so much time on allergies and never really

> figure anything out and your still fighting the ear infections the

> whole time. What they finally did with my son was place the tubes and

> then he started taking Zyrtec (allergy meds) and it cleared EVERYTHING

> up. Still to this day I give Brock Zyrtec as needed and his tubes are

> long gone and the infections as well.

>

> le, mom to:

> Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twins

>

>

>

>

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

>