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Becky,

Mono is really going around this year. I have several friends whose really

small children got it this year. I had never heard of it in such young

children. I had it at 21 and it was awful, I was sooo tired it was

ridiculous and felt awful due to enlarged liver and spleen.

I hope that Maddie is better soon!! Never heard of the rash here either....

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  • 1 month later...
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Becky ----

I'm sure happy that Maddie is getting some relief. That poor little angel, that

must have been so painful for her.

This will be like a whole new world for her. I bet she will really be feeling

better in no time.

Maddie

Well the ENT saw us first thing this mrning and when he put the

otoscope in her ear it popped the blister. You could see the look of

relief on Maddie's face. I know it got larger over the weekend

because we could barely get eardrops in and she was having trouble

hearing and eating. It even hurt to walk-all of the extra pressure.

So he gave us some cipro ear drops and sent us home. The ear fluid

had cleared as well, so she has been " cleared for takeoff! " I am so

relieved

Not only was the vacation worry there, but we have an appointment

tonight for a sleep study-we have had the appt. for 6 months and I

did not want to have to cancel-sad to say that I am looking forward

to sleeping in the chair at the hospital! Hopefully we will get some

answers to her lack of sleep problems!

Glad to hear that kids are starting to recover! I know the concerns

about being able to handle even a half day of school!

Becky in IN-13 days and counting!

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Becky ----

I'm sure happy that Maddie is getting some relief. That poor little angel, that

must have been so painful for her.

This will be like a whole new world for her. I bet she will really be feeling

better in no time.

Maddie

Well the ENT saw us first thing this mrning and when he put the

otoscope in her ear it popped the blister. You could see the look of

relief on Maddie's face. I know it got larger over the weekend

because we could barely get eardrops in and she was having trouble

hearing and eating. It even hurt to walk-all of the extra pressure.

So he gave us some cipro ear drops and sent us home. The ear fluid

had cleared as well, so she has been " cleared for takeoff! " I am so

relieved

Not only was the vacation worry there, but we have an appointment

tonight for a sleep study-we have had the appt. for 6 months and I

did not want to have to cancel-sad to say that I am looking forward

to sleeping in the chair at the hospital! Hopefully we will get some

answers to her lack of sleep problems!

Glad to hear that kids are starting to recover! I know the concerns

about being able to handle even a half day of school!

Becky in IN-13 days and counting!

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Becky,

Thinking of you and your little one. My son has had an endoscopy with

biopsies and it went ok. I hope they are able to get some information that will

help Maddie. I will say some prayers for Maddie,

you, and your mom. Best wishes.

Jan

Becky McClure wrote:

> Well, we go in tomorrow for an upper endoscopy. I just found out today that

they could fit us in. She is still coughing until she throws up, and her gi doc

thinks that reflux may be behind the sleep problems and maybe even the ear

infection problem. She has another one and we started antibiotics for it on

Tuesday. I am a little stressed tonight because my mom was supposed to be going

with me tomorrow, but she is stuck in the airport in Chicago. She is hoping to

get to Indy and to the doctors before we go in, but that will probably not

happen. My hubby can not get off work, and I hate going to things like this by

myself.

>

> Just keep us in your thoughts in the morning!

>

> Becky in IN-mom to Maddie, the 6 year old medical mysteryGet more from the

Web. FREE MSN Explorer download : http://explorer.msn.com

>

>

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Congrats to maddie on the goal! YEAH!

You all will be in our prayers.

pattie

-- Maddie

We finally got the test results back from her endoscopy and they were

inconclusive. The doctor felt that the spots that were removed are

pre-ulcerous. Her stomach is so FULL of acid. We are to continue

the prilosec and start with the miralax for constipation 2x a day-two

capfuls. They want her having extremely loose to watery stools for

the next month. She has been throwing up again, but the doctor feels

there is just no place else for the acid to go. She is only

comfortable to do her breathing treatments lying on her stomach on

the floor. She seems to keep her lunch down usually, it is just

dinner and breakfast. I just can not seem to get the timing down for

the prilosec and eating. The morning is especially hard. Once

school is out that should let up though.

We are going in for botox to the hamstrings tomorrow and see a new

neurologist in June. I am also breaking down adn going to my docotr

on Friday to see about going back on an antidepressant.

I try to check the board every so often and see what is going on!

Hope everyone is doing okay! Our highlight of the last few weeks is

that Maddie FINALLY scored a goal in soccer. It was like God just

decided it was her turn. One of the dads said it was like the Red

sea parting. All of a sudden the ball was htere and she had an empty

field in front of her. We all have no idea where the other players

were. You kind of expected the music from Chariots of Fire in the

background. It was a very special day and lots of Heppy tears were

shed!

Becky in IN

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Becky - how did the botox injections go? Do they put Maddie to sleep when they

do them? Macey had botox last year but

for other reasons, she was sore in the injection area but they gave her pain

meds in recovery. I hope this helps for a

while. How long do you usually see results from one set of injections? We were

told it should last 3 months. We only

did one round because they were unsuccessful.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

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Macey went under several times in a row in 2000. She had only mild

atelectasis which could have been prevented had we known to start incentive

spirometry in PACU and continue it for 2 or 3 days. Just a thought.

Another thought is to be careful at doing the tubes while there is an

ongoing infection. It would be awful to cut into that area to insert the

tubes and release all that infection and fluid into her system.

Ursula Holleman uahollem@... <mailto:uahollem@...>

and Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www..com

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  • 3 months later...

Becky:

I'm so sorry you have to wait for more information about Maddie. That must be

so hard. You're in our prayers --

(mom to , age 3-1/2. Currently has polysaccharide antibody def,

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

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In a message dated Tue, 10 Sep 2002 7:12:57 AM Eastern Standard Time,

beckymcclure825@... writes:

> he thinks there may be some type of spinal cord abnormality

> and the

Did he tell you what kind of abnormality he suspects?

le

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  • 1 month later...

Becky:

Is there any new med she's taking that could account for the headaches? Just

a thought. Hope she's doing better very soon!

(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)

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  • 1 month later...

At least MAddie's spirits were lifted with a trip to Target and for Chicken

Nuggets. Will are praying that the bite is not getting infected.Keep us

posted.

_________________________________________________________________

MSN 8 with e-mail virus protection service: 3 months FREE*.

http://join.msn.com/?page=features/virus & xAPID=42 & PS=47575 & PI=7324 & DI=7474 & SU=

http://www.hotmail.msn.com/cgi-bin/getmsg & HL=1216hotmailtaglines_eliminateviruse\

s_3mf

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In a message dated 3/26/03 8:16:23 AM Pacific Standard Time,

beckymcclure825@... writes:

> The ent said our tubes are in, but they are full of wax-does anyone know

> what they do about this?

Hi Becky,

An ENT (maybe call the one who put the tubes in) can flush out the tubes to

clear them. That way they can work properly.

Sandi, 's Mom

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Maddie

day, and she has a raging ear infection and is taking 250 mg of ceclor 3x a day.

The ent said our tubes are in, but they are full of wax-does anyone know what

they do about this

Becky,

I am so sorry to hear about all of this. s ears are always a mess, and

her ENT suctions them out with this long suction tube on a regular basis. It

does not hurt, but just feels like pressure. It is really helpful !! . Hang

in there. My husband reacted the same way when was first diagnosed. He

finally came around! Yours will too, it just seems as though that is how men

work things out versus women who need to express their feelings.

You and your family are in my prayers

Sharon

s mom, 11 Igg def

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Becky! I'm so sorry to hear that Maddie is sick again and I remember all

too well how we felt when we first got a diagnosis. That's probably how you

feel today. In your heart you knew that Maddie had a mitochondrion problem,

but to hear it said by a doctor hurts.

The best " advice " I have heard about handling news like this was to

recognize that everyone grieves at a different pace and in a different way.

That helped heal some problems in our family since my dh and I were handling

things completely differently.

You guys are in my prayers today! {{{BIG HUGS}}}

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Please keep us in your prayers, we need them.

Becky in IN-mom to Maddie IgA def, asthma, gerd, cp, ....

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In a message dated 3/27/03 4:33:29 PM Pacific Standard Time,

beckymcclure825@... writes:

> I think that is all from here for now. We have never really used ear drops

> except for following tube surgery-is it normal for them to hurt so bad-I

> have not heard her scream and cry like that for a really long time.

Hi Becky,

(who has a huge pain tolerance) screams when I put in ear drops. I

hate doing this!! But they are quite effective. When we used to have

roommates, I would always tell them first, and then use the ear drops. That

way they didn't think Bri had been injured. There is a type of drop that

does not hurt/burn, but some Docs prefer the Cipro. You could talk about it

with the Ped next time.

Sandi, 's Mom

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Sometimes they give Kody some ear drops to kind of melt the ear wax that is in

there.

Diane, Mom to Kody

Re: Maddie

In a message dated 3/26/03 8:16:23 AM Pacific Standard Time,

beckymcclure825@... writes:

> The ent said our tubes are in, but they are full of wax-does anyone know

> what they do about this?

Hi Becky,

An ENT (maybe call the one who put the tubes in) can flush out the tubes to

clear them. That way they can work properly.

Sandi, 's Mom

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  • 8 months later...

I'm so glad to hear that Maddie is better! Maybe the pox will stay away!

How irritating to be exposed right before Christmas!

Pam

wife to (16 years)

mother to , 10, Hannah, 7, Rebekah, 4, and Leah, 2

maddie

Just thought I would let you all know that Maddie is doing much better. I

know she is feeling better-she is back to being constipated! I never

thought I would be so happy to see that happen.

I think it is just going to be one of those winters though. I learned

yesterday that on Sunday she was exposed to chicken pox at church. We are

not in the sane school district as most that attend our church and the

chicken pox are really hitting the schools hard where we go to church. The

scary thing is, the kids that are getting them have had the vaccine. SO who

knows. Could be an interesting Christmas-and of course we are supposed to

go on vacation to Florida-leaving Christmas day.

Also found out that Super Dad has 2 stress fractures in his foot-he was

playing soccer with -our 13 year old-and her team in September and that

is when is happened. I tried to tell him that we are not made to keep up

with them anymore-but you all know men! So he is in a boot up to his

knee-and I thought he was miserable before-ughhhh!

Hope all are fairing better than us!

Becky in IN-mom to Maddie-age 7.5, IgA def, gerd, asthma, mild cp, and the

list goes on!

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  • 6 months later...
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from Dale, Mom to Katy, CVID, age 20

Becky, I'm praying not only for successful and safe surgery, but also

for good healing afterward. I'm also praying for Mom!

In His service,

Dale

Becky McClure wrote:

>Just wanted to let everyone know-because we can certainly use all the extra

prayers we can get-Maddie is undergoing some " elective " plastic surgery tomorrow

for a scar revision.

>

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