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JPatricia

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Loved one DX
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henrietta
My boyfreind of 6 years who is 27 is seeing als specialist who says it looks like he has als neurologist already said his diagnosis is early stages of als. So we have lately been having a lot of discussion about if we should have another baby we already have one little boy who is 20 months(i am 24 about to be 25). We have always wanted 2 kids a boy and a girl but now we don't know if it would be in this potential babys best interest or even for myself of something does happen to him, if i knew we had 20 years i would do it without hesitation but knowing tht it could be as little as 2 years scares me. Theres just a lot of thoughts good and bad about if we should have another baby im just looking for what anyone else thinks or anyone who has gone through it what your experience was
 
Can I just ask first if you would please use paragraphs so your text can be read without running together?

Your question - very personal decision only you can make. My Chris was gone 11 months after diagnosis, so I can't imagine coping with his high level of care and a pregnancy, birth and baby.

Others are slower progressing and I've known people to do this.

I think you have to weigh up however the high level of care needed for a baby, and the high level of care needed for a PALS. Compare this to how much help will you have physically, and how much will this take from you emotionally?

I don't know the answer, only you do.

ALS doesn't run in 'stages' so a diagnosis of early stages of ALS is not a true diagnosis.
 
That is indeed a hard decision but one that goes far beyond his life expectancy. I personally would not even consider having another child until his diagnosis includes testing to see if he has the familial form of ALS. If it is, his children will have a 50% chance of inheriting it.
 
I am 18 months into onset of symptoms and have a 7, 3.5 year olds and a 15 month old.

My partner is essentially a single parent. We have loads of support from family and friends.

I think you need to look at the support you have, your finances and your capacity to be a parent and a CALS.

I would make the assumption that he will need full time care in 12 months. He may be slow progressing but i would not bank on that.
 
With all due respect, I'm going to be blunt. This is my opinion only. I might be wrong. That said:

There's no way I would add another human being to an ALS situation.

FYI: My wife lived 9 months after first symptom. I didn't sleep while caring for her. I would take naps while sitting at stop lights.

What if the pregnancy has its own difficulties?
Once you're big and waddling, how are you going to pick your PALS up off the floor and support his windpipe when he falls?
Then, when your PALS passes on, you'll be single with two young ones. (And a job?)
So many variables, it's just asking for trouble.

Perhaps my opinion is all washed up. Just trying to help.

In the final analysis, it's your decision and no one knows what it's like to be in your shoes, so I don't think anyone would judge you, no matter what you do.
 
Diane makes a great point about the genetics piece.

Here is the thing...your husband may have a year, he may have 10. No one knows. He may slowly progressing today but tomorrow starts rapid progression that doesnt stop. What we know is plateaus and fast progression are intermixed and no one can give you a "time" answer.

I have just went thru the loss of my husband with a 13 year old. I am so thankful we had him but the toll this disease took on him runs deep. Again each situation is unique.

I know I didnt have the ability to take care of a baby while taking care of my husband. ALS became all consuming between care, advocating, paperwork,etc. My son says he was not loved very much during this time. Something to consider.
 
sorry, butt ditto mike.
 
Ditto Mike! Yes! I am sorry this reality is facing you at your age. No matter how it turns out for my husband and I, we have had 8 great years and he has a great life and has already had 66 years of it. In my opinion it would not be responsible to bring another child by choice into an ALS family situation. You will see/hear other perspectives for sure. A book was written by a woman who got married and had a child while dealing with ALS.
 
I agree with Mike. I would focus on your toddler and your boyfriend. It will be very hard to get through this with a pre-school child. You will need all the energy you can get. I hope you have a very strong support system in place.
 
Ditto what everyone else said. I understand that this is a jolt and in truth you are still adjusting, learning, absorbing or you would not be asking, honestly.

There are a few cases out there but no one adding a newborn to a toddler that I can think of. Even if, I can't imagine anything close to that being a good idea. It comes down to this, J. You are going to have to gradually re-adjust your vision for your family to the realities that are coming down the road. This may be the first large adjustment that you make, but it is an important one.

Best,
Laurie
 
What everyone else has said. Genetic testing he's awfully young for an ALS diagnosis. Diane may correct me but I think familial ALS, which is genetic, starts earlier than the sporadic kind. Caring for anALS patient is a more than full time job. How can you take care of young kids too. Not to mention they have a 50% chance of having the worst disease on earth. Do you really want to do that to your kids.
It's one thing if you don't know, but doing it with the foreknowledge? Get genetic testing first.
 
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