Weird things with Will, please help (long)

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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)