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My 7 month old baby has atrophy and i have now been told he has a metabolic disorder?


My 7 month old baby has atrophy and i have now been told he has a metabolic disorder?

Your baby is still beautiful, the horrible long words doctors use doesn't change that. Try speaking to your practice nurse, she will be able to spend more time explaining what these things mean for your baby and you.

Is it ALS or something else? What kind of metabolic disorder? Keep strong. My thoughts and prayers are with you.

when you talk to you doctor about this take a notebook and pen and list any questions you want to ask and then write the answers down so you can go back over them afterwards
Most people are totally bewildered by medical terms and forget everything they are told. Doctors do not mind if you take notes it means you are really paying attention and oyou have a reference point so that you can answer the enquiries of other worried family members.

I am thinking of you and your family. This is a hard time for you all. Get al the information you can about your babys condition - ask the consultant and your general practitioner. Your midwife/ health visitor should have a list of help groups for parents with children with metabolic disorders. If you are up to it, try and make contact with a parent of a child with the same condition. They have been through it and can tell you what really to expect and can share their experience and advice. I found other parents had more practical advice and were more supportive than the medical proffessionals. All the best.

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