willingham72
8 posts
Jun 27, 2008
1:33 AM
|
My little boy 11 months old diagnosed with CMS by emg and tensilon test which showed a definite response. He has been on a low dose of mesotonin drs have not been able to push this as he also has epilepsy and trouble with his secretions he aspirates and is fully fed by gastrostomy. The past couple week his secretion have been troublesome and an increase in choking episodes. He is on hyoscine patches for this and we have increased the dose. I spoke to his neuro yesterday who has instructed us to stop the mesotonin. We are currently waiting for results from gene testing we do know he has not got the rapsyn mutation so they are looking for others. The dr mentiones that he may hae a type that doesnt respond to mesotonin but why did he have a positive response to tensilon. I do not understand does anybody have any thoughts. He still cant hold his head up or sit i find it very distressing as his twin sister is now on the verge of walking and is meeting all milestones. We are seeing the neuros and genetics team again shortly at GOS.
Thanks for reading
Rachel
|
brian216
4 posts
Sep 04, 2008
11:40 AM
|
My boy also has a hard time clearing his secretions. He just had a very bad choking episode yesterday. He is still at the NICU and they suction him on a regular basis. Our doctors aren't giving him any medications to handle the secretions and think that the mestinon may be increasing the amount of secretions he has to deal with.
|
willingham72
12 posts
Sep 04, 2008
1:04 PM
|
Hi Brian
We still struggle with secretions but we are now on max mesitonin. WE saw a neuro muscular doctor who recommended atropine four times a day to be given at the same times apparently they work well together.Increase in secretions is a common side effect of meds coupled with a poor swallow is not good combination. He still has choking episodes but we cope home suction and we do not allow anybody with coughs or colds near him.Choking aponea episodes are incredibly frightening ensure you are both trained in resuscitation techniques dont mean to frighten you but better to be prepared.
All the best
Rachel
|
