Re: loree and the pediatrician

August 30, 2002

>

> You are absolutely right becky. I do have a developmental ped, but she

> wasn't there and i had to take who was on call. I will tell you however

> that your post is extremely timely because my ped ENT called after all her

> surgery today (God Bless her) and she told me that what concerns her the

> most is that he has had one infection after another since June (two ear

> infections one eye infection and pneumonia) and that he doesn't manifest in

> the normal way (he never has nasal drainage etc., in fact when he was in

> the hospital in January with pneumonia he never had a fever or any other

> symptom, cough, runny nose etc. he just was lethargic and my gut said he

> was ill) With ear infections and , eye infection the same thing.

My daughter has chronic sinus infections and is basically asymptomatic. One

time it took a CAT scan to make the dx (chronic infection in 2 sets of

sinuses). When a sinus infection goes from acute (active symptoms) to

chronic, the cilia (hairs) inside the nasal and sinus passages die off and

there is nothing the body can do to flush it out naturally. The infection

just remains impacted... and can even lead to much worse

problems...pneumonia, eye infections and even brain infections.

He is not sick beforehand. and remember before we could adopt him he had to

spend 5 weeks in hospital as a

> newborn for meningitis. She thinks he should possibly see an infectious

> disease doctor to find out why he gets so many infections.

YEAH!

For example, if the infection imbedded in the sinus is particularly virulent,

you may never actually be getting rid of it during the course of antibiotics.

That's what was happening to us. We ended up going on antibiotics for 90

days straight. If that didn't work, then the ENT was going to have to go in

and scrape them out. (BTW my dh had THAT procedure 3 times before we met....

now he uses the steam room at the gym on a regular basis and every time he

gets a cold he gets on antibiotics.... it's almost guarenteed that within a

day or two he will have an infection going. His sinuses have been

compromised so often he has no resistance).

She also could not believe I was told to just let him bang his head and asked

me who it was, and you can believe i

> told her.-Anyway at least i spoke with someone today that made some sense in

> the medical world.

DOUBLE YEAH! Isn't it great to be validated?

As always you guys make all the sense in the world. I will say your post

kind of scares me. don't worry I am

> keeping close watch on him. Thanks. loree--

>

You go, girl! What a mom!

- Becky

August 30, 2002

You are absolutely right becky. I do have a developmental ped, but she wasn't

there and i had to take who was on call. I will tell you however that your post

is extremely timely because my ped ENT called after all her surgery today (God

Bless her) and she told me that what concerns her the most is that he has had

one infection after another since June (two ear infections one eye infection and

pneumonia) and that he doesn't manifest in the normal way (he never has nasal

drainage etc., in fact when he was in the hospital in January with pneumonia he

never had a fever or any other symptom, cough, runny nose etc. he just was

lethargic and my gut said he was ill) With ear infections and , eye infection

the same thing. He is not sick beforehand. and remember before we could adopt

him he had to spend 5 weeks in hospital as a newborn for meningitis. She thinks

he should possibly see an infectious disease doctor to find out why he gets so

many infections. She also could not believe I was told to just let him bang his

head and asked me who it was, and you can believe i told her.-Anyway at least i

spoke with someone today that made some sense in the medical world. As always

you guys make all the sense in the world. I will say your post kind of scares

me. don't worry I am keeping close watch on him. Thanks. loree---- Original

Message -----

From: RSYOSH@...

Sent: Friday, August 30, 2002 3:13 PM

Subject: loree and the pediatrician

In a message dated 8/30/02 12:48:27 PM Pacific Daylight Time,

loree5@... writes:

>

> Well everybody I just got back from the peds. and it was a totally wasted

> trip. She said she couldn't see an infection, although she could only see

> a tiny bit in one ear, so I don't know how she could rule it out. I

> questioned her about fluid and she said that even if he did have fluid they

> wouldn't put him on an antibiotic. So I told her I wanted a tympanogram

> done. There machine didn't work because the ink was dry. (They don't use

> it often I was told. No kidding Sherlock) Anyway, she told me to put him

> on a decongestant to see if it would help. When I said that I was told

> that it usually didn't dry up fluid in the ear, she agreed and said it was

> worth trying (agreed). When I questioned her about what to do with the

> head banging I was told " Just let him bang his head, when it hurts enough

> he will stop " This advice from someone loking at my child with a huge

> bruise and bump on his head (egg). I said " well he is not stopping " and

> she said " He will " . I told my husband in the car. " I wonder when we get

> arrested for child abuse is she going to say she told us to just let him

> bang his head " I just could not believe my ears. I have put in another

> call to ped. ENT to get their advice. (Doctor is in surgery all day). You

> know even if this is behavioral, how can I let a child whose pain sensors

> are dulled just continue to bang his head. I am so frustrated and angry

> right now. She said " You know alot of these kids have this head banging

> behavior " Excuse me; so you just discount him entirely!! My husband asked

> her how she could discount his irritability and she couldn't answer him.

> So I am back to square one as to what to do. I'm sorry this is so long,

> but it is just unbelievable that to get any help today you have to be

> almost dead first!!! I just got off the phone with the ENT " s secretary.

> She said that she checked with one of the other ENT's who said fluid

> wouldn't cause pain or discomfort thus the head banging. Gee i don't know

> about you but when I get fluid in my ears from the pool it drives me crazy

> and all i do is go around hitting the side of my head, trying to dislodge

> the water. I am really in a lousy position. So there you have it. Any

> more advice would be greatly appreciated cause I am at a loss. Thanks my

> friends!! Loree

>

CHANGE PEDIATRICIANS ASAP!!!

Get to somebody... anybody ... who sees a LOT of DS kids. DO you have a DS

parent group near you and can ask for a referral?

Our first pediatrician told us he went to a conference where one of the

lecturers was a researcher in sinus infections. He said that if a young

child has nasal drainage for more than 10 days then there is a VERY high

chance (I forget the exact number but it was over 80%) that a bacterial

infection has evolved.... even if the original cause was not bacterial.

Continuous fluid has a VERY high change of evolving into a secondary

infection.

I have several friends (on with a DS child, the rest without) whose kids had

persistent drainage and the doctor refused to put them on antibiotics.... and

the kids developed pneumonia. There is such a drive away from using

antibiotics.... and it is even WORSE to not use antibiotics when they are

called for. This business of " I can't see the eardrum clearly therefore

there can't be any problem " is negligence.

I moved to this area 3 1/2 years ago... and FINALLY this spring got a new

pediatrician that specializes in DS. But even his partner knew relatively

nothing about sinus/ear infections (I did a lot of research on Medline when

pitching a magaizine article and spoke to a medical researcher .... so I DO

know what I'm talking about..... and can tell when the doctor doesn't...)

Bottom line - trust your gut instinct as a mom. YOU know there is something

wrong... don't take " no " for an answer.

TRUE STORY - from one of my neighbors.

Her oldest developed a rare form of pneumonia around his third birthday. It

is a form that only attacks people with autoimmune disorders, and the doctors

couldn't figure it out. Her son ended up dying (she was 8th months pregnant

with #2 at the time). Several months later it was finally determined that he

had inherited a rare genetic sex-linked disorder from his mom due to a

mutated gene she carried.

Fast forward 3 years. Her second child tests clear of the gene. He developes

a cold that won't quit. Mom is sure it's pneumonia. She took him to the

doctor who told her that she was just panicking because #2 was the same age

as #1 when he died of pneumonia and that it's all in her head. She goes

home, rants to hubby that night, he backs her and says " whatever you think is

right I trust you. " They drive him to the emergency room at s

Hopkins.... and he ends up hospitalized for 3 weeks with pneumonia

(fortunately not the same kind and he recovers).

TRUST YOUR INSTINCTS.

- Becky

August 31, 2002

In a message dated 8/30/2002 7:10:21 PM Eastern Daylight Time,

loree5@... writes:

<< I will tell you however that your post is extremely timely because my ped

ENT called after all her surgery today (God Bless her) and she told me that

what concerns her the most is that he has had one infection after another

since June (two ear infections one eye infection and pneumonia) and that he

doesn't manifest in the normal way (he never has nasal drainage etc., in fact

when he was in the hospital in January with pneumonia he never had a fever or

any other symptom, cough, runny nose etc. he just was lethargic and my gut

said he was ill) >>

Loree,

I sent you privately some phone numbers, but it occurred to me... Did Micah

get the pneumoccocal vacine? I think it's called Prevnar. It lessened the

number of ear infections Liam got.

Kathy, Liam's mom(4)

August 31, 2002

In a message dated 8/30/2002 4:15:10 PM Eastern Daylight Time, RSYOSH@...

writes:

<< Our first pediatrician told us he went to a conference where one of the

lecturers was a researcher in sinus infections. He said that if a young

child has nasal drainage for more than 10 days then there is a VERY high

chance (I forget the exact number but it was over 80%) that a bacterial

infection has evolved.... even if the original cause was not bacterial.

Continuous fluid has a VERY high change of evolving into a secondary

infection.

I have several friends (on with a DS child, the rest without) whose kids had

persistent drainage and the doctor refused to put them on antibiotics....

and

the kids developed pneumonia. >>

Becky,

So true. Sometimes when I don't agree witht the pediatrician or ENT, I take

him to his pulmonologist. She's the most agressive about medication, because

she's the one who will treat him when it does develop into pneumonia.

Kathy, Liam's mom(4)

August 31, 2002

In a message dated 8/31/02 11:16:18 AM Pacific Daylight Time,

loree5@... writes:

>

> I am going to question the pediatrician about this when I speak with her

> on Tuesday. You know he has also been on a low dose antibiotic since birth

> because of the kidney reflux he has to prevent an infection but my husband

> and I always felt this could be a double edged sword because you do develop

> immunity to antibiotics after a long period of use. But when you are

> between a rock and a hard place you opt for the best choice at the time

> (Not that we really were given a choice as we were told it was a must or he

> could get the meningitis again) Anyway, thanks for the info because I would

> never have known that you could develop asymptomatic sinus problems, that's

> why this list is the best. When in doubt don't ask the ped. ask another

> mom cause she knows what's going on!!! LOL!! Thanks Becky and everyone.

>

> Loree

>

was on a prophylatic does of antibiotics too when she was little for

UTI. The pediatrician told me that won't knock back a sinus infection

however. Sinus infections are a lot tougher.

A couple of years ago I returned from vacation with both a UTI and a sinus

infection. My doctor also told me that the UTI was easy to treat, but the

sinusitis takes a longer stronger round of antibiotics.

This last time around Augmentin wasn't good enough to take care of my

daughter's sinus infections.

- Becky

August 31, 2002

I am going to question the pediatrician about this when I speak with her on

Tuesday. You know he has also been on a low dose antibiotic since birth because

of the kidney reflux he has to prevent an infection but my husband and I always

felt this could be a double edged sword because you do develop immunity to

antibiotics after a long period of use. But when you are between a rock and a

hard place you opt for the best choice at the time (Not that we really were

given a choice as we were told it was a must or he could get the meningitis

again) Anyway, thanks for the info because I would never have known that you

could develop asymptomatic sinus problems, that's why this list is the best.

When in doubt don't ask the ped. ask another mom cause she knows what's going

on!!! LOL!! Thanks Becky and everyone.

Loree