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Re: Myers Update

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Dear Lori-

I wish I could get there and give you a hug. I'm sure you'd rather have

respite.

I just don't understand why nobody can get a grip on the fever. do they

feel this

is her norm? That some people have a slightly elevated temp all the time?

Has she ever had a spinal tap?

Have you tried a different medical facility? A different hospital?

---

I just don't understand how they can keep turning you back out with no

answers. I'm disgusted and heartbroken and furious all at the same time.

---

I, too, hope so much the respiradol (sp) gives relief.

Much love to you and your family,

in Ma. (, 21 yrs)

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My heart goes out to you. I'll pray that the Risperdal will help and

give you both some peace.

mom to (31)

>

> For those of you who are interested......

>

> I started on Risperdal today. We are all hoping it helps

with her aggression and eye gouging. Meanwhile, she still has a low

grade fever and needs Motrin every day. I'm exploring sinus fungi as

the culprit. I feel liked a whipped dog and I just want to cry. I

wish I could do more for my child. However, if it is a positive

change for her, it will dramatically improve our quality of life -

but I'm too afraid to hope.

>

> Lori Myers

> Spouse - Trent, Children - (9), (6, CHARGE Syndrome,

Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12

days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button,

partial hearing loss, walking as of 12/22/04!, and Emma (4).

>

> Dallas, Texas

>

>

>

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Lori,

I hope the Risperdal works wonders for , and that you also get some

answers on the sinus stuff. You sound worn out, and I know it can be hard. I

feel like that too a lot lately with all of 's seizure troubles. You just

want answers and a way to make your child more comfortable. Hang in there!

I'll be hoping for good results for both you and .

, mom to (5)

http://kauffmanlak.blogspot.com/

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

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q & A.

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I'm taking all of your suggestions and researching them. Her temp was normal

after sinus surgery - for a week until she got a sinus and double ear infection!

I really think it is a fungal sinus infection - so I'm working with the ENT and

possibly allergy/immunologist to, if nothing else, rule it out.

Thank you all so much for your ideas and constant support - you guys, and my

friend Ruth, are the reasons I don't feel so alone!

Lori

Re: Myers Update

Dear Lori-

I wish I could get there and give you a hug. I'm sure you'd rather have

respite.

I just don't understand why nobody can get a grip on the fever. do they

feel this

is her norm? That some people have a slightly elevated temp all the time?

Has she ever had a spinal tap?

Have you tried a different medical facility? A different hospital?

---

I just don't understand how they can keep turning you back out with no

answers. I'm disgusted and heartbroken and furious all at the same time.

---

I, too, hope so much the respiradol (sp) gives relief.

Much love to you and your family,

in Ma. (, 21 yrs)

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Lori,

I hope this works for , as well!! You both sound like you need a break!!

Keep us posted on the little one.

pam

Myers Update

For those of you who are interested......

I started on Risperdal today. We are all hoping it helps with her

aggression and eye gouging. Meanwhile, she still has a low grade fever and

needs Motrin every day. I'm exploring sinus fungi as the culprit. I feel liked

a whipped dog and I just want to cry. I wish I could do more for my child.

However, if it is a positive change for her, it will dramatically improve our

quality of life - but I'm too afraid to hope.

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (4).

Dallas, Texas

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