neurological changes and weakness don't know what to do

[Ellasmom]

Ella has been doing fairly well, until a few weeks ago. She has been going down hill physically since then. Her hands are tightly curled again and she struggles to open them...she was doing awesome with opening her hands fully, her arm is curled in...her eyes are turned out, one was straight/the other was better...her CVI has gotten worse...she can barely walk up steps, or walk across the room like she used to...her central sleep apnea is back...she has lost muscle mass...her foot is very turned in...she can barely rise to standing from sitting... she is "puffy". Oh, and is complaining of headaches and eye pain.

We have certainly seen all this before but not all together and she improved, this is just the worst we've seen her in a long time and we don't know why or if she is going to continue to slide further down.

Do I shorten her schooling? She loves to go and has made improvement in many ways, but perhaps it is too much? They are responsive to the way she is feeling any given day at her "school" and her program is tailored to her needs, but still, perhaps it is too much? Maybe has underlying illness that we aren't seeing? Maybe she's dehydrating?

Her docs are good, but we have no mito specialist right now and neuro and genetics are very far away. I'm not sure what to ask her doctor or which doctor to get a hold of. I just want to do something, but don't know what that is.

Thank you for listening...just feel panic trying to overwhelm me today.

[Ellasmom]

Going for blood work and to see the doctor later today. Maybe there is a simple explaination for her downturn.

[Lizzy]

I was going to suggest bloodwork which I see you're already doing. I'm sorry to hear she's struggling like that with no known explanation. I hope the bloodwork yields a reasonable explanation. Keep us updated.

Hang in there!

[noor117]

Homeschooling may be an option. Would certainly give opportunity for more rest.

[Ellasmom]

Thank you all for the hugs.

Looks like it's a sinus infection and not progression! Yay!!! Antibiotics yay!!! We are starting her on meds tonight and will watch to see how she does...will reduce her school hours while she recovers and then go from there.

Her metabolic bloodwork looks really good. I am thinking it may take a little bit, but I think she will regain the ground she's lost once the infection has cleared up. She has no real outward signs of sinus issues, but her sinuses are really, really full, according to her doctor.