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Old 11.09.2015, 19:48
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Genetic testing toddler

Our daughter has been experiencing some developmental delays and now our pediatric neurologist is encouraging us to press forward for a diagnosis. For the last 15 months we've been going to various therapies but circumstances have changed and they think we should push for more answers.

We have a referral with a genetic counsellor/doctor next week, but I would be interested in hearing stories and experiences from anyone on what we can expect. I know it's only a blood draw, but it's more the results. We're terrified that they will tell us she has a terminal illness and we won't know where to go from there. While we've been assured the chance of this is incredibly small, it brings me to tears to think about it.

Happy to have PMs if someone doesn't want to share publicly. I have no friends in a similar position so I feel alone sometimes and my head just spins which makes it worse.

Thanks
Jane
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Old 11.09.2015, 20:05
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Re: Genetic testing toddler

You are going to love your genetic counselor. We had one on our staff when I worked in a large, teaching hospital in the US in the High Risk Pregnancy unit. She was not a doctor, but she had a Master's degree in Genetic Counseling. She was like a combination social worker/doctor.

Her job was to meet with couples who had already been diagnosed during the pregnancy and knew that there was going to be a genetic problem with the baby. All of our patients who had to meet with her just thought she was awesome.

She served as a liaison between the doctors (highly technical and often rushed) and the patients. She took the time to explain everything in great detail in language that the patients could really understand. If you have been asked to see a genetic counselor, don't be afraid, be glad. This person will be a huge, positive resource for you as you move forward. Good luck in your onward journey!
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Old 11.09.2015, 20:14
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Re: Genetic testing toddler

That's really rough. Must be a nerve shattering time for you.
Sometimes it is really better to know the worst than to worry about it constantly though.
Can't help much but I worked with boys with a terminal illness for several years (Duchene muscular dystrophy) and also with a lovely girl with a brain tumour.
One thing we learned to keep in mind. There is a life BEFORE death. This is true whether the child has a terminal illness or 'just' a severe disability.
Thinking of you.
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