Re: needed to be Med-i-vacted by Ambulance

February 26, 2005

I'm new, but I had to respond. I hope is doing better now!

Orlando has wonderful hospitals, we've been to both and have been pleased!

I'm glad to hear that got such good care. He had to have been in such

pain, my heart goes out to him. Our kids have to be so tough, and its hard.

Now when things get calmed down it's time for Mommy to have a bubble

bath and a nap, and try to recoup yourself.

As I said, I hope is doing a lot better!

Lois

> [Original Message]

>

> To: >

> Date: 2/26/2005 11:46:32 PM

> Subject: needed to be Med-i-vacted by Ambulance

>

> It has been a crazy few days so this is the first chance I have to

> let you know what has been going on with . We had to take him

> to the Ped on Thursday morning because the head banging and screaming

> got much worse. His neurological symptoms got worse as well. He was

> getting much sicker right before our eyes. We got the to the Ped and

> she saw that he was severely dehydrated and needed to be hospitalized

> immediately! She contacted the local hospital but they had no beds

> available. While she was waiting for a bed he got worse and she

> decided that he should go to a hospital with a Ped ICU. We left for

> Orlando and were about half way there when the cell rang and told us

> to head back to our local hosp because that hosp was full too and

> they would make us wait in the ER for possibly 24 or more hrs! We

> turned around and were back on the highway when 's eyes rolled

> back and he became unresponsive and began seizing. We realized that

> we couldn't continue driving to our local hosp and wait to be seen in

> the ER so we got off at the next exit which happened to be ours! We

> called 911 and went by ambulance to the ER. We were able to get him

> to a room an hr or so later. He continued to get worse, banging his

> head, screaming, panting and having many seizures. The Doc ordered a

> CT Scan which ended up showing his sinuses were impacted (filled with

> fluid and infected). This is what was causing the pain and the pain

> was causing the increased seizure activity. Even though we learned

> what the cause of the problems were now, he was still getting worse

> and needed more medical care than the local hosp could provide. We

> were medivaced by ambulance at midnight to the hospital in Orlando we

> originally headed for earlier in the day. We saw a Ped Specialist and

> a Ped Neuro who actually studied with Dr Cohen our Mito Doc in

> Cleveland so she was well versed in what he could take and what

> protocol was needed for his care. I was very impressed by the Ped

> too. He was totally on board with listening to what I had to say

> about 's care and what I thought was going on and what we had

> done in the past for his care--refreshing to say the least!!! I even

> told him that :-) He has had experience with kids with Mito so he

> also understood that could go from bad to worse in the blink

> of an eye so his care had to be monitored carefully and closely. We

> stayed for 3 days and I am happy to say that we are home now.

> is doing MUCH better and I really think that the combination of meds

> for the sinus infection, additional seizure meds, and change to his g-

> tube feeds have made a world of difference. We plan to have him

> return to the medical school he attended before he started

> Kindergarten this fall for a few weeks until he regains his strength

> and we see that his immune system is stronger and the seizures are

> under control.

>

> Thanks for all the emails and concern, we truly appreciate it.

> and Dennis

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded

of their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

>

February 27, 2005

Oh, what an ordeal you have all gone through. I am so sorry and

his family had to endure so much before finding out what was wrong. I

will keep you all in my thoughts and prayers that the meds do the trick

in a timely manner.

Hugs,

mitomomtoo wrote:

>It has been a crazy few days so this is the first chance I have to

>let you know what has been going on with . We had to take him

>to the Ped on Thursday morning because the head banging and screaming

>got much worse. His neurological symptoms got worse as well. He was

>getting much sicker right before our eyes. We got the to the Ped and

>she saw that he was severely dehydrated and needed to be hospitalized

>immediately! She contacted the local hospital but they had no beds

>available. While she was waiting for a bed he got worse and she

>decided that he should go to a hospital with a Ped ICU. We left for

>Orlando and were about half way there when the cell rang and told us

>to head back to our local hosp because that hosp was full too and

>they would make us wait in the ER for possibly 24 or more hrs! We

>turned around and were back on the highway when 's eyes rolled

>back and he became unresponsive and began seizing. We realized that

>we couldn't continue driving to our local hosp and wait to be seen in

>the ER so we got off at the next exit which happened to be ours! We

>called 911 and went by ambulance to the ER. We were able to get him

>to a room an hr or so later. He continued to get worse, banging his

>head, screaming, panting and having many seizures. The Doc ordered a

>CT Scan which ended up showing his sinuses were impacted (filled with

>fluid and infected). This is what was causing the pain and the pain

>was causing the increased seizure activity. Even though we learned

>what the cause of the problems were now, he was still getting worse

>and needed more medical care than the local hosp could provide. We

>were medivaced by ambulance at midnight to the hospital in Orlando we

>originally headed for earlier in the day. We saw a Ped Specialist and

>a Ped Neuro who actually studied with Dr Cohen our Mito Doc in

>Cleveland so she was well versed in what he could take and what

>protocol was needed for his care. I was very impressed by the Ped

>too. He was totally on board with listening to what I had to say

>about 's care and what I thought was going on and what we had

>done in the past for his care--refreshing to say the least!!! I even

>told him that :-) He has had experience with kids with Mito so he

>also understood that could go from bad to worse in the blink

>of an eye so his care had to be monitored carefully and closely. We

>stayed for 3 days and I am happy to say that we are home now.

>is doing MUCH better and I really think that the combination of meds

>for the sinus infection, additional seizure meds, and change to his g-

>tube feeds have made a world of difference. We plan to have him

>return to the medical school he attended before he started

>Kindergarten this fall for a few weeks until he regains his strength

>and we see that his immune system is stronger and the seizures are

>under control.

>

>Thanks for all the emails and concern, we truly appreciate it.

> and Dennis

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

February 27, 2005

Wow, I can't believe all that you guys had to endure. I'm really

sorry that you had to go through all that, but hopefully is

on the mend. I'm also infuriated with your Ped for not sending him

by ambulance to begin with. It's unacceptable that they had you

drive him ! No hospital is ever closed to emergencies, even if they

say they don't have a bed they still have to treat you. Also, I

moved to be closer to a large University hospital because I knew the

local hospital wouldn't be able to handle my mito. You might want

to consider the same thing. Best of luck to you !

bug

February 27, 2005

oh my gosh !!

What a crazy couple of days you have had. I am so sorry that poor had to

go through so much until they figured out what was wrong with him.

Glad to hear that the hospital was good to you and the Peds and Peds Neuro knew

what they were doing. How neat that the Ped Neuro actually studied with Dr.

Cohen. That must have made you feel so much better, just knowing that the Mito

education was there.

Happy to hear that you are all home now. I hope that continuees to

improve and feels better. I can only imagine how hard it must have been on him,

I know that when I have what I call " Brain Pain " it is horrible. I cry and

scream b/cof the pain.

Please know that and your whole family are in my thoughts and prayers.

Hopefully you can now relax and settle down alittle.

Hugs,

Ann-Marie

needed to be Med-i-vacted by Ambulance

It has been a crazy few days so this is the first chance I have to

let you know what has been going on with . We had to take him

to the Ped on Thursday morning because the head banging and screaming

got much worse. His neurological symptoms got worse as well. He was

getting much sicker right before our eyes. We got the to the Ped and

she saw that he was severely dehydrated and needed to be hospitalized

immediately! She contacted the local hospital but they had no beds

available. While she was waiting for a bed he got worse and she

decided that he should go to a hospital with a Ped ICU. We left for

Orlando and were about half way there when the cell rang and told us

to head back to our local hosp because that hosp was full too and

they would make us wait in the ER for possibly 24 or more hrs! We

turned around and were back on the highway when 's eyes rolled

back and he became unresponsive and began seizing. We realized that

we couldn't continue driving to our local hosp and wait to be seen in

the ER so we got off at the next exit which happened to be ours! We

called 911 and went by ambulance to the ER. We were able to get him

to a room an hr or so later. He continued to get worse, banging his

head, screaming, panting and having many seizures. The Doc ordered a

CT Scan which ended up showing his sinuses were impacted (filled with

fluid and infected). This is what was causing the pain and the pain

was causing the increased seizure activity. Even though we learned

what the cause of the problems were now, he was still getting worse

and needed more medical care than the local hosp could provide. We

were medivaced by ambulance at midnight to the hospital in Orlando we

originally headed for earlier in the day. We saw a Ped Specialist and

a Ped Neuro who actually studied with Dr Cohen our Mito Doc in

Cleveland so she was well versed in what he could take and what

protocol was needed for his care. I was very impressed by the Ped

too. He was totally on board with listening to what I had to say

about 's care and what I thought was going on and what we had

done in the past for his care--refreshing to say the least!!! I even

told him that :-) He has had experience with kids with Mito so he

also understood that could go from bad to worse in the blink

of an eye so his care had to be monitored carefully and closely. We

stayed for 3 days and I am happy to say that we are home now.

is doing MUCH better and I really think that the combination of meds

for the sinus infection, additional seizure meds, and change to his g-

tube feeds have made a world of difference. We plan to have him

return to the medical school he attended before he started

Kindergarten this fall for a few weeks until he regains his strength

and we see that his immune system is stronger and the seizures are

under control.

Thanks for all the emails and concern, we truly appreciate it.

and Dennis

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

February 27, 2005

Thanks to all of you who have responded about 's

hospitalization. He is doing better today. Fatigued still, but

better :-) I came home to the usual house from H**L. Hubby had to

work and manage the 2 other kids and he just isn't able to juggle

everything like I have to, LOL! I am trying to get things back in

order and stay rested myself, but that is easier said than done. My

biggest priority has been for the last 2 weeks and he will

remain the most important until he is totally healthy and back to his

normal baseline.

It was very comforting to have such great docs treating him. The

Neuro who studied with Dr. Cohen was a BONUS and Blessing for SURE!

It was like having him with us right here in Florida. Only way it

could have been better would have been if we were in Cleveland!

Once again, thanks for all the Prayers and good wishes, we truly

appreciate them.

> oh my gosh !!

>

> What a crazy couple of days you have had. I am so sorry that poor

had to go through so much until they figured out what was

wrong with him.

>

> Glad to hear that the hospital was good to you and the Peds and

Peds Neuro knew what they were doing. How neat that the Ped Neuro

actually studied with Dr. Cohen. That must have made you feel so much

better, just knowing that the Mito education was there.

>

> Happy to hear that you are all home now. I hope that

continuees to improve and feels better. I can only imagine how hard

it must have been on him, I know that when I have what I call " Brain

Pain " it is horrible. I cry and scream b/cof the pain.

>

> Please know that and your whole family are in my thoughts

and prayers. Hopefully you can now relax and settle down alittle.

>

> Hugs,

> Ann-Marie

>

> needed to be Med-i-vacted by Ambulance

>

> It has been a crazy few days so this is the first chance I have

to

> let you know what has been going on with . We had to take

him

> to the Ped on Thursday morning because the head banging and

screaming

> got much worse. His neurological symptoms got worse as well. He

was

> getting much sicker right before our eyes. We got the to the Ped

and

> she saw that he was severely dehydrated and needed to be

hospitalized

> immediately! She contacted the local hospital but they had no

beds

> available. While she was waiting for a bed he got worse and she

> decided that he should go to a hospital with a Ped ICU. We left

for

> Orlando and were about half way there when the cell rang and told

us

> to head back to our local hosp because that hosp was full too and

> they would make us wait in the ER for possibly 24 or more hrs!

We

> turned around and were back on the highway when 's eyes

rolled

> back and he became unresponsive and began seizing. We realized

that

> we couldn't continue driving to our local hosp and wait to be

seen in

> the ER so we got off at the next exit which happened to be ours!

We

> called 911 and went by ambulance to the ER. We were able to get

him

> to a room an hr or so later. He continued to get worse, banging

his

> head, screaming, panting and having many seizures. The Doc

ordered a

> CT Scan which ended up showing his sinuses were impacted (filled

with

> fluid and infected). This is what was causing the pain and the

pain

> was causing the increased seizure activity. Even though we

learned

> what the cause of the problems were now, he was still getting

worse

> and needed more medical care than the local hosp could provide.

We

> were medivaced by ambulance at midnight to the hospital in

Orlando we

> originally headed for earlier in the day. We saw a Ped Specialist

and

> a Ped Neuro who actually studied with Dr Cohen our Mito Doc in

> Cleveland so she was well versed in what he could take and what

> protocol was needed for his care. I was very impressed by the Ped

> too. He was totally on board with listening to what I had to say

> about 's care and what I thought was going on and what we

had

> done in the past for his care--refreshing to say the least!!! I

even

> told him that :-) He has had experience with kids with Mito so

he

> also understood that could go from bad to worse in the

blink

> of an eye so his care had to be monitored carefully and closely.

We

> stayed for 3 days and I am happy to say that we are home now.

> is doing MUCH better and I really think that the combination of

meds

> for the sinus infection, additional seizure meds, and change to

his g-

> tube feeds have made a world of difference. We plan to have him

> return to the medical school he attended before he started

> Kindergarten this fall for a few weeks until he regains his

strength

> and we see that his immune system is stronger and the seizures

are

> under control.

>

> Thanks for all the emails and concern, we truly appreciate it.

> and Dennis

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

>

February 27, 2005

,

I am sorry this had to happen to . I am sure it has taken

it's toll on him and you. I am glad that you did have a doctor that was

willing to listen and knew something about Mito. That always helps.

You, and your family are in my thoughts and prayers. Please rest

when you can!

Hugs,

a

On Sun, 27 Feb 2005 04:46:23 -0000 " mitomomtoo " mitomomtoo@...>

writes: