Re: Re: mitochondrial brown outs?/Darla

[Guest guest]

The "brown out" sounds very similar to your daughters experiences with the SLE's but from what Dr.Cohen said they can be caused from more than just viruses, and she never had a decline on only one side (it was equal delays on both sides.) He said overheating, not eating, viruses or any other major stress can bring one on. I was told they happen when there is just no energy left to work on, therefore shutting down to only the basic necessities for life (heartbeat, breathing, ect.) He also said some people with mito never have one, some only once, but usually if you have one you are higer risk to have more. With Gracies experience from this one, she had a drop in her gross motor skills (became very clumbsy, and fell alot), she also had a drop in her oral control (alot of choking and swallowing issues), her speech had a noticable decline (although normally very below age level) and her GI system has drastically declined. I started noticing changes soon after she started having migranes, in late Feb. and have just started to notice improvement within the past two weeks.

He gave me another situation of someone else, who had one from overheating. He said that it was only about 80 and this individual was at a picnic, took a nap in the shade, and ended up in coma for almost a week. He said that it took almost a year for her to walk again. I guess he wanted me to be very aware of the danger of heat, because Gracie already has serious heat issues.

He is going to do a MRI to check for any permanant damage. He said that it will show up in the white matter of her brain, if there is permanant damage. He also told me to let him know if she starts getting clumbsy again, I guess this is the first symptom of this. I do not know if there is any treatment if they do happen. I hope this clears this up. I, too, was pretty unaware of this term. I did think it sounded like many of the stories of children in this group. I am still shocked how long it took to see improvement, but we still cannot pinpoint what brought it on.