Re: elevated ammonia symptoms

[Guest guest]

Krystena,

I am sorry to hear that you are having to go thru all of this. Know

that you are in my prayers for a restful sleep tonight.

Shirley, mom to and Jordan

> Has anyone ever seen the following symptoms in their child with

> elevated ammonia?

>  

> headache

> blurred vision

> uncoordinated

> pounding heart beat

> feeling of " fogginess "

> did I say bad headache??

> Insomnia with Nightmares

> low grade temp 99-100

>  

> I know most everything I read says lethargy but I am guessing that is

> with extremely high ammonia levels. Carsen was pretty lethargic at

> 285.

> Mine blood ammonia is 174 tonight. I just came from the ER and all

> labs were good except for my ammonia level. It was put directly on ice

> right in front of me too.

>  

> I have been unable to fall asleep for 3 nights! I litterly have not

> slept for 3 full nights. If I do fall asleep, my brain keeps going and

> having nightmares and the thought process seems to continue. I wake

> right back up after dosing off.

> I am pretty disoriented but am mentally aware of what's going on.

> Just feel really off balance.

> You think the insomnia is just " my " response. I know everyone

> responds to elevated ammonia differently.

> I have NOT done this in 4 years! My brain is working over time and

> cannot get any rest. It's affecting my whole body

>  

> My head is hurting really bad and my heart feels like a cement block

> is on it.

> My ECG was abnormal too. I knew I had a right bundle branch blockage

> which showed up but so did some other things like: early

> transition....QRS positive in V2 & Supraventricular interpolated

> complex. I can feel every beat my heart makes. So scary feeling.

> I was given one dose of lactulose for tonight(oral soln) 20g/30ml.  I

> really hope this works. I go back tomorrow for a repeat ammonia level

> to see if it's down. I also developed a low grade temp. at 99.8.

>  

> Anyone with any information on this? The ER doc. didn't think my

> symptoms went along with elevated ammonia but treated me with

> lactulose anyway. All of my symptoms do go with high ammonia except

> for the insomnia from what I understand ???? 

>  

> I am going to my boys ped. cardiologist in the morning to see what she

> can do for me. I feel like my body is falling apart.

>  

> Krystena s

>  

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

[Guest guest]

Hi Krystena,

I am so sorry that you are having difficulties, I hope things improve

quickly, prayers for healing to you. Just wanted to say that it was

a pleasure meeting you last week. You are the first mito family that

we have met. Your children are beautiful (and so well behaved

compared to mine---I am embarrassed but they always get like that

when under stress). Do you think the stress of travel triggered

this? My boys are also in a bit of a crisis from being sick and then

Mayo.

I hope things improve and that your boys are doing well.

Best wishes,

Kris

Cole and Zack

> Has anyone ever seen the following symptoms in their child with

elevated ammonia?

>

> headache

> blurred vision

> uncoordinated

> pounding heart beat

> feeling of " fogginess "

> did I say bad headache??

> Insomnia with Nightmares

> low grade temp 99-100

>

> I know most everything I read says lethargy but I am guessing that

is with extremely high ammonia levels. Carsen was pretty lethargic at

285.

> Mine blood ammonia is 174 tonight. I just came from the ER and all

labs were good except for my ammonia level. It was put directly on

ice right in front of me too.

>

> I have been unable to fall asleep for 3 nights! I litterly have not

slept for 3 full nights. If I do fall asleep, my brain keeps going

and having nightmares and the thought process seems to continue. I

wake right back up after dosing off.

> I am pretty disoriented but am mentally aware of what's going on.

Just feel really off balance.

> You think the insomnia is just " my " response. I know everyone

responds to elevated ammonia differently.

> I have NOT done this in 4 years! My brain is working over time and

cannot get any rest. It's affecting my whole body

>

> My head is hurting really bad and my heart feels like a cement

block is on it.

> My ECG was abnormal too. I knew I had a right bundle branch

blockage which showed up but so did some other things like: early

transition....QRS positive in V2 & Supraventricular interpolated

complex. I can feel every beat my heart makes. So scary feeling.

> I was given one dose of lactulose for tonight(oral soln) 20g/30ml.

I really hope this works. I go back tomorrow for a repeat ammonia

level to see if it's down. I also developed a low grade temp. at

99.8.

>

> Anyone with any information on this? The ER doc. didn't think my

symptoms went along with elevated ammonia but treated me with

lactulose anyway. All of my symptoms do go with high ammonia except

for the insomnia from what I understand ????

>

> I am going to my boys ped. cardiologist in the morning to see what

she can do for me. I feel like my body is falling apart.

>

> Krystena s

[Guest guest]

Krystena,

How are you doing? I have been thinking about you all day and

wanted to hear back from you before leaving for Mayo early in the

morning, but my computer was being a HUGE pain and I spent hours on

the phone with a service guy trying to fix it so I could go online

again. If you are still up and see this message, let me know how you

are doing. If not, just know I will be thinking and praying about

you while up at Mayo. I will not be able to get to a computer until

we get into the McSonald house and the waiting list had 9 last

I knew so it may be a while before we get in there. We will get on

the list ASAP tomorrow morning after arriving to town. Make sure to

take it easy and get lots of rest. You know you need it! I will

write back soon.

Darla

> > Has anyone ever seen the following symptoms in their child with

> elevated ammonia?

> >

> > headache

> > blurred vision

> > uncoordinated

> > pounding heart beat

> > feeling of " fogginess "

> > did I say bad headache??

> > Insomnia with Nightmares

> > low grade temp 99-100

> >

> > I know most everything I read says lethargy but I am guessing

that

> is with extremely high ammonia levels. Carsen was pretty lethargic

at

> 285.

> > Mine blood ammonia is 174 tonight. I just came from the ER and

all

> labs were good except for my ammonia level. It was put directly on

> ice right in front of me too.

> >

> > I have been unable to fall asleep for 3 nights! I litterly have

not

> slept for 3 full nights. If I do fall asleep, my brain keeps going

> and having nightmares and the thought process seems to continue. I

> wake right back up after dosing off.

> > I am pretty disoriented but am mentally aware of what's going on.

> Just feel really off balance.

> > You think the insomnia is just " my " response. I know everyone

> responds to elevated ammonia differently.

> > I have NOT done this in 4 years! My brain is working over time

and

> cannot get any rest. It's affecting my whole body

> >

> > My head is hurting really bad and my heart feels like a cement

> block is on it.

> > My ECG was abnormal too. I knew I had a right bundle branch

> blockage which showed up but so did some other things like: early

> transition....QRS positive in V2 & Supraventricular interpolated

> complex. I can feel every beat my heart makes. So scary feeling.

> > I was given one dose of lactulose for tonight(oral soln)

20g/30ml.

> I really hope this works. I go back tomorrow for a repeat ammonia

> level to see if it's down. I also developed a low grade temp. at

> 99.8.

> >

> > Anyone with any information on this? The ER doc. didn't think my

> symptoms went along with elevated ammonia but treated me with

> lactulose anyway. All of my symptoms do go with high ammonia except

> for the insomnia from what I understand ????

> >

> > I am going to my boys ped. cardiologist in the morning to see

what

> she can do for me. I feel like my body is falling apart.

> >

> > Krystena s