newly diagnosed toddler- help with question

[Guest guest]

Hello to all. Have been reading your posts with great interest for

more information. Through a lot of advocating, aggressiveness and

persistance I finally have some answers on my two year old.

Suspected mitochondrial, confirmed energy metabolism disorder

pending muscle biopsy.She seems to be mildly affected, with some

brain malformations, probable cognitive impairment, lack of speech

and hypotonia-with no walking yet.Eye movement disorders etc.. We

seem very lucky , compared to many. Still learning a lot.

The last few days she has been sleeping a lot. 12 hours at night,

and 2 , 2.5-3 hour naps. A little fussier but still playful,lower

energy but not totally lathargic. diet average which isnt great,

fluids okay. She seems warmer than usual but no fever. Have been

keeping her out of the summer heat.. low Any ideas?? or thoughts

that could be helpful?? This is about 3 hours more than normal a day

for the last 2-3 days.

[Guest guest]

Hi and welcome to the group although I know you would rather be somewhere else.

Lets hope its just a plain ole growth spurt or something. Also, cutting teeth seems to be extra hard on mito kids so you might check her molars and make sure its not that. There's alway the wondering if there in an infection thats not visible yet. However, so much of mito medicine is a guessing game and dealing with the unknown on a daily basis.

My always felt hot, especially his hands...even when his temp was normal.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.com

[Guest guest]

The last few days she has been sleeping a lot. 12 hours at night, and 2 , 2.5-3 hour naps. A little fussier but still playful,lower energy but not totally lathargic. diet average which isnt great, fluids okay. She seems warmer than usual but no fever. Have been keeping her out of the summer heat.. low Any ideas?? or thoughts that could be helpful?? This is about 3 hours more than normal a day for the last 2-3 days.

Hi and welcome to the list! My daughter used to sleep this much on a daily basis, since weaning her off phenobarb, she is awake much more, and has cut out naps. She also tended to get more tired and lethargic with the heat and humidity. I have noticed that if her skin feels hot, she tends to be this way. She will also get sleepy and lethargic during the day with illnesses and ear infections, and allergy/asthma attacks, but then have trouble falling asleep at nite.

HTH

e, Chelsea's mom(nonspecific mito)