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Old 05-24-2012, 07:34 PM   #1
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jackie607 HB Userjackie607 HB User
myotubular myopathy

My grandson (5 weeks old) has been diagnosed with myotubular myopathy. He is on a ventilator and his parents are struggling with whether or not to allow the doctors to do a tracheostomy. Does anybody have any suggestions, comments, or words of wisdom? Does anybody have a longterm survivor with this disease? What is the potential quality of life?

 
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Old 05-28-2012, 05:50 AM   #2
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Re: myotubular myopathy

Dear Jackie. I hope your grandson is managing to do very well - congratulations on becoming a grandparent. I'm so sorry that I have only just found your post. Just to introduce myself I have a 16 year old with x myotubular myopathy who is doing very well.

for our son Zak and family, things were very difficult in the early days - particularly with Zak's chest and swallowing, he has managed to get stronger over the years and even achieved eating by mouth and walking until the age of 14. It is worth noting that some older children with trachs can also achieve eating by mouth too, but I dont know of a case where a young child is trached and manages to come off that. As you know trach can cause it's own complications - but is very helpful when a child is permanently ventilated (so nice to be able to kiss a clear face) and if they are really strugging with breathing. Just to give you some insight - Zak is currently only ventilated at night and just had successful spine surgery to correct a curve, although with some complications with his ventilation afterwards and delayed extubation.

We were told that because of this he would now need trach - but we resisted largely because his breathign was stable before surgery. With some gentle perseverence and being in the right hands he's back on the right track now and back to where he was with his breathing - if not more improved since scoliosis was corrected. The best advice I can give is to follow your gut feeling, hopefully your grandson will be well supported by his medical team, and you are doing exactly the right thing by exploring everything first before making a decision. If you can, delay and think about it before allowing them to jump in become over-medicalised things (as our children respond well to natural things too) and keep positive too if you can. As parents we learn to live for every day rather than look ahead, and our children surprise us all the time with their achievements and turn a corner when we least expect it.

Some really nice things you can be doing now with your grandson is baby massage to get those arms and legs moving and warm baths. Moving around and daily 'exercise' his really helpful to help them get stronger, and taking care of his chest by moving him regularly (2 hourly) positional draining to clear secretions. NIV is great and might mean that they don't ever need to trach him - there are children whove successfully come off NIV during the day at least, as they get older, and I know some children whove managed to come off NIV both day and night. (Zak only went onto NIV as a teenager when he lost his mobility and to help with night=time hypoventilation). I would be pleased to help answer more questions so please post here Take care all of you - we can really understand what you're all going through now. Wendy

Last edited by Administrator; 05-28-2012 at 08:29 AM.

 
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Old 05-28-2012, 08:41 AM   #3
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Re: myotubular myopathy

Jackie,

I'm here to help you any way I can as it can feel a very lonely place when your child is born with such a rare condition. I'm willing to share my 16 years of expertise of this condition with you.

All the best. Wendy

Last edited by moderator2; 05-28-2012 at 09:14 AM. Reason: posted disallowed website

 
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Old 05-28-2012, 10:26 PM   #4
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Re: myotubular myopathy

Wendy, Thanks so much for your reply. There is so much we don't know. The bad thing is that I live 1,500 from my son and his wife and my new grandson. I feel so helpless. It is good to know that your son is 16 and that he is doing fairly well.

 
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Old 05-29-2012, 04:02 AM   #5
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Re: myotubular myopathy

Hi Jackie, I know (personally) several boys who are surviving into their teens and twenties with trachs and who have a good quality of life. Hopefully your son and his wife will be well supported by their medical team.

All the best. Wendy

Last edited by Administrator; 05-29-2012 at 06:19 AM.

 
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