Re: question regarding disease progression (to Lorianne)

[Guest guest]

Dear Loriann,

Thanks for your honest reply. I appreciate it. I'm sorry to hear of Lucas' struggles.

God be with you all,

Donna

Re: question regarding disease progression

Donna,I do not wish to scare you but Lucas has hadregression episodes. He started out with corticalvisual impairment, and global developmental delay. Helearned to walk when he was four but then he startedfurther decline. His pituitary gland stoppedproducing thyroid. His motility and gastric emptyingslowed. He ended up with a J-tube and a G-tube. Ayear ago his reflux became worse and now we vent hisG-tube 17-20 hours a day. His ataxia has varied attimes and currently his walking has not recoveredafter his bout with influenza on 2/10. Lucas was bornMar. 12, 1996. After his muscle biopsy in Aug of1998, we put him on the supplements. After gettinghis tubes we had difficulty giving some of thesupplements so we stopped some for a period of time. Now we have returned to at least giving Thiamine (B1),and we never really stopped his carnitor and CoEnzymeQ 10. We had been on Vitamin c as well as B-complexbut after clogging up tube extensions it was not worthit. HTH,Loriann-mom to and 12 yr old twins andLucas almost 9 with nonspecific mito disorder, FOD(LCHAD), hypothyroid secondary to pituitary gland,acute onset of febrile seizures, ataxia, J-J tube fed,GERD, abnormally slow motility, cortical visualimpairment, global developmental delays--- craigsstory wrote:> > > Hi all,> > Since I first posted Craig's been worsening. The> shakiness, > weakness, fatigue, ataxic episodes are resurfacing. > Thank goodness, > no seizures (yet?), but he has been "out of it" a> lot, and getting > that giddy, spacey look he gets (have any of you> seen that before?).> > How have you experienced the progression of the> disease? Does it > come in spurts? Have your kids seemed to be stable> for awhile, even > improving, and then it hits again? Do you find that> the supplements > work for a time, and then lose their effect? Do you> keep upping the > doses and, if you do, has it helped?> > So many questions, all of the sudden. Craig has> been so stable. I > hate to be back in the land of uncertainties and> fear, but here we > are again.> > I'm also wondering how many of you out there have a> child like Craig > who in so many ways is lucky to be so healthy. His> organs are not > affected (yet?), "just" his brain and muscles? He> is not truly sick > (my heart goes out to all who have children in and> out of the > hospital, on g- tubes, etc.), and yet he is so> affected by this > disease neurologically. > > Thanks for listening.> > Donna> > Mom to Craig (8 with unspecified mito) and Dalton (6> with possible > mito, but doing very well with treatment)> > > > > >