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Back with a question?

It has been a while. Life has been busy.


I alsways seem to come back here with a whingy excuse as to why I have been missing. Sorry about that.

There just doesnt seem to be enough hours in the day to keep on top of everything.

Eve has been struggling a lot since March. She had an horrendous chest infection pneumonia over Christmas and it took a long tim eto shake it off. She has struggled with maintaing her airway in sitting since then and now spends most of her time laid down. We were fortunate to find a charity which would fund her a chair she can lie down in and stil be able to get out and about.

However this seems to be a more or less pernanent issue and we are going to be discussing this with her metabolic, neurology and Respiratory consultants this week. The Tracheostomy question has come to the fore again.

Is there anyone woth experience of making this decision? I really would like to know how it has worked for others, what the recovery time is, has it made a positive change to the quality of life?



alyssamcmoran's picture



my 9yr old son w/ mito has bouts of cyclic vomiting (about 2x's per month) lasting hours which worries me to no end. I had inquired about a compazine suppository as I used this for migraines/vomiting when I was young . Dr. was more comfortable prescribing sublingual zofran. This is not working at all, the vomiting continues inspite of the med. Any suggestions...has anyone used compazine & is this ok for mito kids or is there something else??