Maddie

[Guest guest]

In a message dated 12/3/2004 3:46:28 PM Pacific Standard Time,

beckymcclure825@... writes:

Well I am hoping for some sleep this weekend-We are camping Maddie out in the

recliner to see if that helps.

Becky,

I'm praying for Maddie, and you, of course. I just wanted to ask if you

have an air purifier in her room--one with a Hepa filter?? This has helped my

asthma to an incredible degree--and I'm the difficult one in that category.

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

[Guest guest]

In a message dated 2/2/2005 4:51:13 PM Central Standard Time,

beckymcclure825@... writes:

> 875 mg of Augmentin 2x

Becky: Wow -- what a dose! Make certain she takes that on a full stomach.

Sorry she's got the sinus infection AND the lovely behavior... I don't miss

that,

changed over to all ear infections this year while she had all sinus

infections last year. Ear infection behavior isn't great, but it sure beats

SINUS BEHAVIOR!!!!! Ahhhh!!! I used to say to the ped when he walked in (this

was

years ago when she was younger and didn't understand what I was saying), " We

either need antibiotics or an exorcist! "

I had to start chanting in my head " Lord give me strength " over and over and

over and waiting to respond to her behavior so I didn't stay so mad.

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 2/2/2005 4:51:13 PM Central Standard Time,

beckymcclure825@... writes:

> 875 mg of Augmentin 2x

Becky: Wow -- what a dose! Make certain she takes that on a full stomach.

Sorry she's got the sinus infection AND the lovely behavior... I don't miss

that,

changed over to all ear infections this year while she had all sinus

infections last year. Ear infection behavior isn't great, but it sure beats

SINUS BEHAVIOR!!!!! Ahhhh!!! I used to say to the ped when he walked in (this

was

years ago when she was younger and didn't understand what I was saying), " We

either need antibiotics or an exorcist! "

I had to start chanting in my head " Lord give me strength " over and over and

over and waiting to respond to her behavior so I didn't stay so mad.

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

becky: how old is ur daughter???

does anybodys children get yeast overgrowth from some of the antibiotics? how

do they treat it?

thanks

maggie

[Guest guest]

becky: how old is ur daughter???

does anybodys children get yeast overgrowth from some of the antibiotics? how

do they treat it?

thanks

maggie

[Guest guest]

In a message dated 2/3/2005 11:29:50 AM Eastern Standard Time,

thedonicoherd@... writes:

does anybodys children get yeast overgrowth from some of the antibiotics?

how

do they treat it?

Brittany does, she is on Diflucan. Plus I give her Probiotics.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 2/3/2005 11:29:50 AM Eastern Standard Time,

thedonicoherd@... writes:

does anybodys children get yeast overgrowth from some of the antibiotics?

how

do they treat it?

Brittany does, she is on Diflucan. Plus I give her Probiotics.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Sorry to hear that Maddie is so sick, I hope she responds quickly to the

augmentin. Did Dr. B say much about Maddie's IgA def?

How old is ? I hope you take pics of her in this dress for us! By the

way, Kelsey was almost named after my grandmother, but I thought

would make her sound like she had a speech disorder :-)

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

immunodeficiency-CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, asthma and mild hearing loss/unaided),

and Kelsey - surviving triplet (8 going on 18!)

[Guest guest]

Sorry to hear that Maddie is so sick, I hope she responds quickly to the

augmentin. Did Dr. B say much about Maddie's IgA def?

How old is ? I hope you take pics of her in this dress for us! By the

way, Kelsey was almost named after my grandmother, but I thought

would make her sound like she had a speech disorder :-)

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

immunodeficiency-CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, asthma and mild hearing loss/unaided),

and Kelsey - surviving triplet (8 going on 18!)

[Guest guest]

In a message dated 2/3/2005 8:30:08 AM Pacific Standard Time,

thedonicoherd@... writes:

does anybodys children get yeast overgrowth from some of the antibiotics? how

do they treat it?

Maggie,

My son had yeast in his ears from so many antibiotic ear drops. It was

treated with Diflucan because there is nothing topical for yeast that can be

used

in the ears.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

[Guest guest]

I'm so sorry you have to miss the presentation.

I don't think it ever stops, from bigger things like this to the little things,

like both kids (or even all three) having their ballgames all at the same time.

8-(

Hope your mom and dad can take lots of pictures and video. Perhaps you can send

a special card/gift/letter with them for her so that she can know how very proud

of her you are.

Let us know how the endoscopy goes. I've had one of those myself. The

procedure was never uncomfortable at all - I had a migraine size headache that

day that those drugs just pushed right out of my head - but my throat was sore

afterwards for several days.

God bless,

Wenoka

Maddie

Well the appt. at the pulmono went well yesterday-her lung function was

great-but when he examined her-she has fluid on one ear, and blister type things

in her throat-not a strep blister-something different. So, off to the gastro

today-who also ordered a sinus xray-and we also have a sinus infection

brewing-and she wants us to go back tomorrow for an endoscopy to find out what

is going on. UGHHHH!

So the gastro is now trying to get a hold of the infectious disease dr and it

is all a big confusing mess-and I was supposed to go and pick my oldest up from

a very selective science camp tomorrow-only 30 girls from IN were chosen for the

week-and they have been working all week on presentations for tomorrow-so the

mommy guilt is HUGE right now. My husband can not get off of work-with everyone

else on vacation right now-so my mom and dad have to go and get her.

I just hope we can figure out what is going on-and we can do something about

it.

Becky in IN-mom to Maddie, IgA def, all IgG low, gerd, asthma, constipation,

chronic sinus....

[Guest guest]

In a message dated 6/23/2005 5:09:43 PM Central Standard Time,

beckymcclure825@... writes:

> so my mom and dad have to go and get her

Becky:

I'm so sorry you have to miss the presentation/pick-up. But it's wonderful

that Grandma and Grandpa will be there!! So try to look at it that way... stinks

though for you.

The blisters on the throat -- did they mention coxsackie virus? gets

blisters all over her soft palate frequently. I was told it's a member of the

coxsackie family, which is the type of virus that causes Hand Foot & Mouth. You

can have a coxsackie virus that's NOT HFM, it's just a similar bug and I

assume there are lots of different strains. These blisters that gets are

teeny, clear, very visible with a flashlight though.

Pretty much every time has a virus that leaves her feeling crummy but

you can't see any outer signs (cold symptoms), I find those blisters.

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 6/23/2005 3:10:03 PM Pacific Standard Time,

beckymcclure825@... writes:

I just hope we can figure out what is going on-and we can do something about

it.

Becky,

I hope so, too. Please let us know when you do. It's so frustrating to

have to wait for tests and test results; especially when they're sick.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Becky, my son has acid reflux which didn't help his lungs or his ears...He

did end up with ear tubes and several, several lung issues as well. We

have a great gi in Boston. It's a travel for us but he's worth it....Dawn

mother to

--- Becky McClure <beckymcclure825@...> wrote:

> Well the appt. at the pulmono went well yesterday-her lung function was

> great-but when he examined her-she has fluid on one ear, and blister

> type things in her throat-not a strep blister-something different. So,

> off to the gastro today-who also ordered a sinus xray-and we also have a

> sinus infection brewing-and she wants us to go back tomorrow for an

> endoscopy to find out what is going on. UGHHHH!

>

> So the gastro is now trying to get a hold of the infectious disease dr

> and it is all a big confusing mess-and I was supposed to go and pick my

> oldest up from a very selective science camp tomorrow-only 30 girls from

> IN were chosen for the week-and they have been working all week on

> presentations for tomorrow-so the mommy guilt is HUGE right now. My

> husband can not get off of work-with everyone else on vacation right

> now-so my mom and dad have to go and get her.

>

> I just hope we can figure out what is going on-and we can do something

> about it.

>

> Becky in IN-mom to Maddie, IgA def, all IgG low, gerd, asthma,

> constipation, chronic sinus....

>

>

[Guest guest]

In a message dated 7/26/2005 3:16:24 PM Pacific Standard Time,

beckymcclure825@... writes:

So-now mom pays the price-I should have gone with my gut instinct and made

her take antibiotics with her-but she just wanted to go and have fun.

Becky,

Isn't that the way...live and learn for us moms! I'm sorry she's sick but

happy she had a wonderful time! I think you'll find the steroids will help

her sinuses clear really fast in conjunction with the abx.

When Bri was getting strep chronically, he would complain of headaches with

the strep--and also " jello legs " as he calls them.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Becky McClure wrote:

>

> -especially when I got to work and found out

> that all of a sudden my attendance is an issue-never has been before-and

> that I may lose my job.

Becky, you might want to call IDF and ask about what rights a parent has

in the work place to care for a sick child. I can't remember the name

of the agency that helps people with that -- maybe Ursula would know.

But, please don't give up. Hang in there and keep doing your job as

long as they will let you. I do believe that there are laws to protect

you as long as these absences are legitimate needs of your child.

Look into it. Get armed and then inform your boss if you have to, that

you have rights and your child has needs.

It's hard to juggle everybody's needs when everything comes crashing

down at once.

That's when I go to my Refuge and Strength, my Rock and my Fortress. He

alone carries me through those tough times.

In His service,

dale

[Guest guest]

Becky,

You need to fill out the form that all employers must have. It is call

family leave act. Most employers think it is for an extended time off work

but if you read all the paper work it includes chronic sickness. If you

child is unable to care for themselves you must be released from work

without penalty.

Lorri

_____

From: [mailto: ] On Behalf Of

Dale Weatherford

Sent: Tuesday, November 28, 2006 3:56 PM

Subject: Re: Maddie

Becky McClure wrote:

>

> -especially when I got to work and found out

> that all of a sudden my attendance is an issue-never has been before-and

> that I may lose my job.

Becky, you might want to call IDF and ask about what rights a parent has

in the work place to care for a sick child. I can't remember the name

of the agency that helps people with that -- maybe Ursula would know.

But, please don't give up. Hang in there and keep doing your job as

long as they will let you. I do believe that there are laws to protect

you as long as these absences are legitimate needs of your child.

Look into it. Get armed and then inform your boss if you have to, that

you have rights and your child has needs.

It's hard to juggle everybody's needs when everything comes crashing

down at once.

That's when I go to my Refuge and Strength, my Rock and my Fortress. He

alone carries me through those tough times.

In His service,

dale

[Guest guest]

Maddie, did you check on the group site?  There are a number of super

specialists all over this great country...  folks who have had myotomies have

posted their emails and phone numbers also so you can email them or call them.

 

Dr Patti email is... MARCO PATTI<mpatti@...>,

 

please check out the group site!

 

Carolyn

mom to Cameron. in CA

 

>

> HI to all, it has been a long 2 months, the last GI doc did endo w/botox

didn't work he said, " I have NEVER seen an Esophagus tug and ppull on my scope

in my entire career! Let me see if I can find a surgeon 4 a myotomy. So here we

are, we had to CALL HIM BACK, and he said, Oh yeah coulldnt find anyone!! I AM

SO DANG AGGRAVATED, Mom is in a BAD episode, shes been on sofa for 4 days cant

eat, do anything and in pain!!

>

> I was wondering if someone here could PLEASE GIVE ME the ENTIRE emails for Dr.

Rice, Dr. Patti. And we are in South Carolina, she went to Mayo and dr she saw

said he couldnt do it. unsure of name she has seen SO many! So what about

Savannah? Just curious Google doesnt show anything. but who knows. Also

Vanderbilt Travel is HARD but we have NO choice now!!

>

> THanks all I will wait, and god bless u all!

>

>

> Maddie Connies Daughter

>