brian216
1 post
27-Aug-2008
7:33 PM
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My wife and I have twins with neonatal mg. They are currently five weeks old and still at the NICU. They are receiving mestonin daily. They were both born with finger contractures. One of them also had a club foot. The one with the club foot, we have found out, has about 3.5 times the level of antibodies in his system. Also, they are the result of IVF (my wife's sister's eggs). My wife was diagnosed with MG about 14 years ago (ocular form) and has been in remission for years. We never even thought about the MG during pregnancy, not knowing that the babies could be impacted in any way. I was just wondering if anyone has had a baby with neonatal mg, and their experience. Both of our children have made a lot of progress so far. Their fingers have loosened considerably and my boy's club foot has also made drastic improvement. Their biggest struggle at this point is swallowing and my boy has some respiratory issues that he is still working on (treated by nasal cannula). Again, just wondering if anyone has gone through this with their child and if they have any advice for treatment/what to expect etc...
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Rita
99 post s
28-Aug-2008
1:49 AM
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I don't know if this will be of help but it is a tip passed on by a mum who had a baby born with MG. She found that a car seat(or similar) was ideal to put the baby in at night so that he was always in a fairly upright position to help with his breathing. She placed the seat next to her bed so that she had very easy access to him.
There was a very interesting article on BBC South Today last night about a new treatment for club foot - you may be able to access this via their website.
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willingham72
11 post s
1-Sep-2008
8:19 AM
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Hi
I am mum to IVF twins. My son has congenital myasthenia I know not the same but they do share many symptoms. Lucas was born with hand and feet contractures, aponea at birth, very poor suck swallow he is now 100% gastrostomy fed. He also has multiple other problems. I played with Lucass hand and feet constantly doing lots of stretches and they have nearly resolved. The twins are now 14 months old it is hard work but so enjoyable more than I could of ever imagined. Lucas had to be upright after every feed and could not tolerate laying flat so we elevated the end of his cot telephone directories under the cot and towels under the mattress. He couldnt tolerate a car seat as he also has laryngealmalacia (floopy larynx)and severe reflux the angle of the head was not good for him and he over heats very quickly. I hope the babies are doing well and you will all be home as a family soon. If you feel you have any more questions please ask.
Rachel
Last Edited on 1-Sep-2008 8:22 AM
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brian216
2 post s
3-Sep-2008
3:43 AM
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Thank you for your response. Both of our children our having some digestion issues. Although they are digesting their formula, they don't seem to be digesting as fast as the doctors would like. Also, my son seems to spit up a lot more. They started both of them on Reglan, but the medicine didn't seem to work. Maybe we will start working with their positioning following feeding. Sounds like it has helped other babies with similar problems digesting.
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linnea1
24 post s
3-Sep-2008
2:15 PM
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HI brian.Congratulations on the birth of your twins.I will say a prayer for them and for you both.As a woman with mg and trying for a baby can i ask if docters advised your wife to stop her medication as i am geting conflicting advise about and dont know if i should take them or not.Apologies if this seems inapproiate to ask when you going through a tough time.Take care.
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brian216
3 post s
4-Sep-2008
11:21 AM
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My wife was not on any medication during her pregnancy had no symptoms of mg. She hasn't had any symptoms since she was 17 years old (she is now 30) and we never even thought about myasthnia gravis once throughout the pregnancy. We never even knew it was possible for her to have the antibodies or to pass them to our children.
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