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Calvinball
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Mon Sep 17, 2018 4:04 pm

We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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Mon Sep 17, 2018 4:25 pm

Calvinball wrote:
Mon Sep 17, 2018 4:04 pm
We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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:( hope this one doesn't turn into anything worse
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Calvinball
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Mon Sep 17, 2018 4:53 pm

SAWCE wrote:
Calvinball wrote:
Mon Sep 17, 2018 4:04 pm
We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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:( hope this one doesn't turn into anything worse
They just decided they are going to start her on roids now, which will hopefully stave off the crazy decompensation like before.


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Mon Sep 17, 2018 4:56 pm

Calvinball wrote:
Mon Sep 17, 2018 4:53 pm
SAWCE wrote:
:( hope this one doesn't turn into anything worse
They just decided they are going to start her on roids now, which will hopefully stave off the crazy decompensation like before.


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Poor thing. Glad they at least have a plan of attack for when this starts to happen now in order to minimize it. Take the progress where you can. Keep us posted after you've got her all attended to, please.
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Mon Sep 17, 2018 6:26 pm

Freakin’ :bender: treating us like :neek: treats us.
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Mon Sep 17, 2018 7:01 pm

Calvinball wrote:
Mon Sep 17, 2018 4:04 pm
We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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DAng. :(

Good luck and keep us posted.
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Calvinball
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Tue Sep 18, 2018 9:59 pm

She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Tue Sep 18, 2018 11:13 pm

Calvinball wrote:
Tue Sep 18, 2018 9:59 pm
She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Thanks for the good news.

What is decompensation?
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Tue Sep 18, 2018 11:24 pm

wap wrote:
Calvinball wrote:
Tue Sep 18, 2018 9:59 pm
She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Thanks for the good news.

What is decompensation?
In medical terms? It’s when everything falls apart.


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Tue Sep 18, 2018 11:52 pm

Calvinball wrote:
Tue Sep 18, 2018 11:24 pm
wap wrote:
Thanks for the good news.

What is decompensation?
In medical terms? It’s when everything falls apart.


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Is that the definition in your context above?
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Wed Sep 19, 2018 11:50 am

wap wrote:
Calvinball wrote:
Tue Sep 18, 2018 11:24 pm
In medical terms? It’s when everything falls apart.


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Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Wed Sep 19, 2018 12:10 pm

Calvinball wrote:
Wed Sep 19, 2018 11:50 am
wap wrote:
Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Good to hear!

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Wed Sep 19, 2018 1:01 pm

Calvinball wrote:
Wed Sep 19, 2018 11:50 am
wap wrote:
Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Got it. :like: Very good to hear.
:wap: Where are these mangos?

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Wed Oct 03, 2018 12:44 pm

Update for everyone. Figured I should since she is now a financial investment for you guys.

She had appointments with CHOP’s metabolic team and neurology on Monday.

The metabolic team thinks it is unlikely that it’s a metabolic disorder. They are doing some further testing for an enzyme deficiency but more just to rule it out.

Her neurologist is also testing for another known condition but thinks it is unlikely to be the culprit.

So they are enrolling her in a research study. That opens the door to get all her genetic data looked at more closely for specific areas. The big test she already had done is very comprehensive, but isn’t 100% comprehensive. She also has been presenting Auds as a case study at all the conferences she goes to, and she’s looking to maybe find other cases around the country/world that are similar. As she put it, “Audrey is on the edge of science. If this were five years ago we already would have said there was nothing further we could do.”

So treatment plan stays in effect. If she gets a fever we contact her neurologist and typically will be admitting her to the hospital.

Thanks again for all the support, I will keep posting updates here for anyone who is interested.

As a buddy said, “that’s some real life House shit.”


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Wed Oct 03, 2018 12:56 pm

Calvinball wrote:
Wed Oct 03, 2018 12:44 pm
Update for everyone. Figured I should since she is now a financial investment for you guys.

She had appointments with CHOP’s metabolic team and neurology on Monday.

The metabolic team thinks it is unlikely that it’s a metabolic disorder. They are doing some further testing for an enzyme deficiency but more just to rule it out.

Her neurologist is also testing for another known condition but thinks it is unlikely to be the culprit.

So they are enrolling her in a research study. That opens the door to get all her genetic data looked at more closely for specific areas. The big test she already had done is very comprehensive, but isn’t 100% comprehensive. She also has been presenting Auds as a case study at all the conferences she goes to, and she’s looking to maybe find other cases around the country/world that are similar. As she put it, “Audrey is on the edge of science. If this were five years ago we already would have said there was nothing further we could do.”

So treatment plan stays in effect. If she gets a fever we contact her neurologist and typically will be admitting her to the hospital.

Thanks again for all the support, I will keep posting updates here for anyone who is interested.

As a buddy said, “that’s some real life House shit.”


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Really sorry that you're all going through this, but it is cool to think that people in the future could benefit from this as they learn more about what's going on with her and how to treat it.
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Wed Oct 03, 2018 1:04 pm

Appreciate the updates! Hoping for the best for the little one.

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Wed Oct 03, 2018 1:05 pm

SAWCE wrote:
Wed Oct 03, 2018 12:56 pm
Calvinball wrote:
Wed Oct 03, 2018 12:44 pm
Update for everyone. Figured I should since she is now a financial investment for you guys.

She had appointments with CHOP’s metabolic team and neurology on Monday.

The metabolic team thinks it is unlikely that it’s a metabolic disorder. They are doing some further testing for an enzyme deficiency but more just to rule it out.

Her neurologist is also testing for another known condition but thinks it is unlikely to be the culprit.

So they are enrolling her in a research study. That opens the door to get all her genetic data looked at more closely for specific areas. The big test she already had done is very comprehensive, but isn’t 100% comprehensive. She also has been presenting Auds as a case study at all the conferences she goes to, and she’s looking to maybe find other cases around the country/world that are similar. As she put it, “Audrey is on the edge of science. If this were five years ago we already would have said there was nothing further we could do.”

So treatment plan stays in effect. If she gets a fever we contact her neurologist and typically will be admitting her to the hospital.

Thanks again for all the support, I will keep posting updates here for anyone who is interested.

As a buddy said, “that’s some real life House shit.”


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Really sorry that you're all going through this, but it is cool to think that people in the future could benefit from this as they learn more about what's going on with her and how to treat it.
:dat:

From a purely :science: perspective it is really :neat: that she will be helping others down the road. Cold comfort for you guys, I know, but :nice: to see that her docs are really investing time into her condition. Continued good luck to her and her family.
:wap: Where are these mangos?

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Thu Nov 08, 2018 10:16 pm

Sorry I’m late to respond here. CHOP saved my life when I was an infant. They have some of the best doctors in the country. She’s in the best care that exists being there.

Hope you guys are getting through this ok. Going to the hospital every time there’s a fever must be hell, because kids get sick all the time.

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Calvinball
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Sun Nov 11, 2018 10:58 am

Johnny_P wrote:Sorry I’m late to respond here. CHOP saved my life when I was an infant. They have some of the best doctors in the country. She’s in the best care that exists being there.

Hope you guys are getting through this ok. Going to the hospital every time there’s a fever must be hell, because kids get sick all the time.
Yeah we’ve been down there twice since the major incident. Numerous panic attacks on the wife’s part.


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