Re: Weird things with Will, please help (long)

[Guest guest]

Oh, it all sounds so familiar.

do you have him on a pulse oximeter at night to monitor his saturation levels???

When Max gets sick, she usually starts with a snotty nose and within days she has pneumonia. The swetting/soaking is the same for her. Even when she does not run a fever. Last time she was also hallucinating. Also, Max's ketones go off the chart when she is sick. We are awaiting results from a skin biopsy which tested for SCOT,a rare ketone disorder. Her sugar is fine.

An overnight respiratory study may help and provide new information.

I can understand you considering hospitalization. Have they suggested it? And if so, what sould they do once he is in the hospital? I relate to your fear about sleeping. Been there many a night.

I guess the short answer to your question is, yes, we have seen the same thing. And no, no one can explain it. Max's team is reative to every new situation. they wish they could be proactive, but for the time being it is being reactive.

best regards,

rosy, Mum to Max 51/2

[Guest guest]

Oh, it all sounds so familiar.

do you have him on a pulse oximeter at night to monitor his saturation levels???

When Max gets sick, she usually starts with a snotty nose and within days she has pneumonia. The swetting/soaking is the same for her. Even when she does not run a fever. Last time she was also hallucinating. Also, Max's ketones go off the chart when she is sick. We are awaiting results from a skin biopsy which tested for SCOT,a rare ketone disorder. Her sugar is fine.

An overnight respiratory study may help and provide new information.

I can understand you considering hospitalization. Have they suggested it? And if so, what sould they do once he is in the hospital? I relate to your fear about sleeping. Been there many a night.

I guess the short answer to your question is, yes, we have seen the same thing. And no, no one can explain it. Max's team is reative to every new situation. they wish they could be proactive, but for the time being it is being reactive.

best regards,

rosy, Mum to Max 51/2

[Guest guest]

This is somewhat how Grace reacts when she is starting a mito crash. She will get very lethargic and odd, even without being dehydrated yet. She will get a complete personality change, however we have not seen rages and hallucinations how you described.

Maybe your doctors really should consider putting him in the hospital for some IV fluids and closer observation. With Grace we have always seen improvement within 24 hours of starting the fluids.

I hope he is feeling better really soon. Best wishes.

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[Guest guest]

I don't have any answers for you but wanted to let you know he will be in

our prayers and thoughts. I am sure it has been very scary for you and wish

there was more I could do to help. Make sure to get the rest you need as I

am sure it is harder to sleep when he is so restless and having these

issues.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Weird things with Will, please help (long)

>

> Hi Everyone,

> I hope someone has seen any of this or has any ideas, because our Dr's

> are confused and really don't know what to do next.

> Will (3) got sick the week before X-mas, just a runny nose that led to

> a cough to respiratory infection. We got him seen on the Monday after

> X-mas, and he had junky sounding lungs and a horrible ear infection. We

> started antibiotics, increased his inhalers and O2, and figured it

> would get better. On the Tues. night I went in to cover Will up after

> he fell asleep and found he had completely soaked his bed (normally

> this would have woken him up) I tried to get him to wake up so I could

> change his sheets and he wouldn't. I kept trying until my husband got

> the sheets changed and then just laid him back down. He slept

> restlessly the rest of the night and seemed ok in morning. Since then

> we have had 5 more of these episodes and we are also having what looks

> like hallucinations. He is arguing, running scared from, or having

> extended conversations with things that aren't there.

> We have been back into the Dr and they changed his antibiotic, because

> it wasn't working and his lungs were getting worse. We have done lots

> of labs and 2 chest x-rays now, but each set of labs is just weirder

> than the next. He also is having Ataxia for the first time, and an SLE

> that the Neuro has seen and acknowledged. His Apnea/Respiratory

> arrests are increasing as well. He is also really variable in his

> moods to the point he seems to have at least 3 personalities right now.

>

> He has elevated CO but our house detector has not been set off and no

> one else is sick.

> He is showing Ketones in his blood, but his Blood sugars are ok

> He has low CO2, is lower than is even normal for him.

> His Lactic acid is the last number for High normal, but it has been

> higher in the past.

> His Chest x-rays are showing Bronchial cuffing and perihilar

> bronchovascular and interstitial markings, these are new for us and we

> actually have had the same radiologist for the past 8 months of x-rays

> so we know he knows what's normal or new for Will. (Will has not had a

> normal CXR in over a year and a half).

>

> We are at the point of wanting to just take Will to the hospital,

> because 3 weeks of constant stress is wearing us all out. I'm not sure

> what they would do, but it's got to be better than being so scared to

> put Will down to sleep because we don't know if he's going to wake up.

> If any one has any ideas of things to look for, or to try we would love

> to hear them. Or just that someone else has seen any of this, it's

> just so weird.

>

> Thank you All,

>

> Mom to Will (still unknown if Mito or not, 50/50 with the Drs)

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

I don't have any answers for you but wanted to let you know he will be in

our prayers and thoughts. I am sure it has been very scary for you and wish

there was more I could do to help. Make sure to get the rest you need as I

am sure it is harder to sleep when he is so restless and having these

issues.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Weird things with Will, please help (long)

>

> Hi Everyone,

> I hope someone has seen any of this or has any ideas, because our Dr's

> are confused and really don't know what to do next.

> Will (3) got sick the week before X-mas, just a runny nose that led to

> a cough to respiratory infection. We got him seen on the Monday after

> X-mas, and he had junky sounding lungs and a horrible ear infection. We

> started antibiotics, increased his inhalers and O2, and figured it

> would get better. On the Tues. night I went in to cover Will up after

> he fell asleep and found he had completely soaked his bed (normally

> this would have woken him up) I tried to get him to wake up so I could

> change his sheets and he wouldn't. I kept trying until my husband got

> the sheets changed and then just laid him back down. He slept

> restlessly the rest of the night and seemed ok in morning. Since then

> we have had 5 more of these episodes and we are also having what looks

> like hallucinations. He is arguing, running scared from, or having

> extended conversations with things that aren't there.

> We have been back into the Dr and they changed his antibiotic, because

> it wasn't working and his lungs were getting worse. We have done lots

> of labs and 2 chest x-rays now, but each set of labs is just weirder

> than the next. He also is having Ataxia for the first time, and an SLE

> that the Neuro has seen and acknowledged. His Apnea/Respiratory

> arrests are increasing as well. He is also really variable in his

> moods to the point he seems to have at least 3 personalities right now.

>

> He has elevated CO but our house detector has not been set off and no

> one else is sick.

> He is showing Ketones in his blood, but his Blood sugars are ok

> He has low CO2, is lower than is even normal for him.

> His Lactic acid is the last number for High normal, but it has been

> higher in the past.

> His Chest x-rays are showing Bronchial cuffing and perihilar

> bronchovascular and interstitial markings, these are new for us and we

> actually have had the same radiologist for the past 8 months of x-rays

> so we know he knows what's normal or new for Will. (Will has not had a

> normal CXR in over a year and a half).

>

> We are at the point of wanting to just take Will to the hospital,

> because 3 weeks of constant stress is wearing us all out. I'm not sure

> what they would do, but it's got to be better than being so scared to

> put Will down to sleep because we don't know if he's going to wake up.

> If any one has any ideas of things to look for, or to try we would love

> to hear them. Or just that someone else has seen any of this, it's

> just so weird.

>

> Thank you All,

>

> Mom to Will (still unknown if Mito or not, 50/50 with the Drs)

>

>

>

>

> Please contact mito-owner with any problems or questions.

>