CIS and having children?

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ILikeTea
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CIS and having children?

Post by ILikeTea » Thu May 25, 2017 8:48 am

Hello, I’m new, and I’ve been looking for answers for a few years about having children. I hope someone can help me either way. And I'm sorry for all the text, I have a lot on my mind.

A bit about me:
I’ve been CIS for about 3 years, on Betaseron, and my neurologist said I was at an extremely high risk of having another event within the first year, based on my MRI scans. As far as I know, I’ve never had another event. I only have the numbness in my feet sometimes, not all the time (and other than feeling weird, I can walk, run, etc.), migraines occasionally, fatigue occasionally.

It’s not that I’m afraid that I can’t take care of a child, but I’m afraid of passing on my crummy genes and my child would have MS. While I am totally ok IMO (I go to work, drive a car, physically active, ect.), what if my child actually developed a case of debilitating MS? I know I can watch their vitamin D levels, supplement, and give nutritious foods, etc., but this “what if” keeps me awake at night. What if they end up in a wheelchair by the time they are twenty, unable to work, in pain all the time?

If the adoption process didn’t take so long, this wouldn’t be an issue. It’s common in international adoptions that the adopters have to give their full medical history, and anything that isn’t perfect kicks you out of the running. Apparently, some local CASs for public adoption might rule you out as a potential adopter if you aren’t perfectly healthy too (I’m in Ontario, Canada).

My husband is like, “we can adopt” but the more I look into it, it might not be possible. Plus, it can take years! He’s a handful of years younger than me, so he’s fine waiting, but I’d like to know now so I can plan and not worry about this so much. My neurologist is like, we're so close to a cure, have kids! But....how long have we been saying that, for MS and basically every thing else? My gyno says, ask your neurologist (lol).

If you read this all the way through, thank you! Any advice is greatly appreciated.

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lyndacarol
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Re: CIS and having children?

Post by lyndacarol » Thu May 25, 2017 10:02 am

ILikeTea wrote:Hello, I’m new,...

A bit about me:
I’ve been CIS for about 3 years, on Betaseron, and my neurologist said I was at an extremely high risk of having another event within the first year, based on my MRI scans. As far as I know, I’ve never had another event. I only have the numbness in my feet sometimes, not all the time (and other than feeling weird, I can walk, run, etc.), migraines occasionally, fatigue occasionally.

It’s not that I’m afraid that I can’t take care of a child, but I’m afraid of passing on my crummy genes and my child would have MS. While I am totally ok IMO (I go to work, drive a car, physically active, ect.), what if my child actually developed a case of debilitating MS? I know I can watch their vitamin D levels, supplement, and give nutritious foods, etc., but this “what if” keeps me awake at night. What if they end up in a wheelchair by the time they are twenty, unable to work, in pain all the time?
Welcome to ThisIsMS, ILikeTea.

Since your location is Ontario, Canada, you should be aware of the fact of vitamin D deficiency among Canadians, as The Vitamin Society tells it here:


The Vitamin D Society
http://www.vitamindsociety.org/

About Us:
The Vitamin D Society is a Canadian nonprofit group organized to:

Increase awareness of the many health conditions strongly linked to vitamin D deficiency.
Encourage all Canadians to be proactive in protecting their health and have their vitamin D blood levels tested annually.
Fund valuable vitamin D research.

97% of Canadians are vitamin D deficient at some point in the year, according to University of Calgary research. Worldwide, an estimated 1 billion people don't get enough of "the sunshine vitamin".


Even before becoming pregnant, it would be a good idea to ask your GP for the vitamin D blood test called "25-hydroxy D" for you.

Vitamin D Status during Pregnancy and Risk of Multiple Sclerosis in Offspring of Women in the Finnish Maternity Cohort, (March 2016)
http://archneur.jamanetwork.com/article ... id=2499458

Conclusions and Relevance  Insufficient maternal 25(OH)D during pregnancy may increase the risk of MS in offspring.


And, it would be a good idea to test the vitamin D level of the baby at birth (and continue to monitor the baby's levels, as you say). "Nutritious foods" are always good to offer, but there are very few food sources of vitamin D.

Low Vitamin D Levels at Birth May Influence MS Risk in Adults, Study Suggests, December 5, 2016
https://multiplesclerosisnewstoday.com/ ... -as-adults

The risk of developing multiple sclerosis (MS) later in life may be higher for babies born with low levels of vitamin D, according to a new study in the journal Neurology.

The study, “Neonatal Vitamin D Status And Risk Of Multiple Sclerosis – A Population-Based Case-Control Study,” was conducted by Nete Munk Nielsen, MD, PhD, with the State Serum Institute in Copenhagen, Denmark, and colleagues.

People with higher vitamin D levels, the researchers said, appeared to have a 47% lower risk of developing MS later in life, compared to those with the lowest levels.



YEARS ago, the advice to women with MS was that they should NOT have children. To my knowledge, there is no such recommendation today.

I had our son long before I was diagnosed with MS; I had been diagnosed with endometriosis earlier and almost missed the wonderful experience of motherhood. Examine your heart and your own situation; the decision can only be made by you and your husband. "What if" should not determine your choice.

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Re: CIS and having children?

Post by David1949 » Thu May 25, 2017 10:12 am

The risk of your children developing ms is less than 10% according to this article http://www.webmd.com/multiple-sclerosis ... sk-to-kids. So there is a much greater likelihood that your child will never develop MS. Furthermore the average age of onset for relapsing remitting MS is early to mid thirties. For primary progressive it's about 10 years later.

So it is unlikely that your child will develop ms but even if he does he will still probably have 30 - 40 good years before it strikes. You are smart in ignoring the neuro's claim about being so "close to a cure". But on the other hand there may actually be a cure in 30 - 40 years.

I'm 68 years old and I've had PPMS for 21 years. It's a horrible disease but I'm still grateful for the life I've had. I'd much prefer the life I've had rather than never being born at all. I think your children might see it the same way.

As for your ability to raise your children if you develop full blown ms that is tough to answer. MS affects different people differently. It could put you in a wheelchair very quickly or you could last for many years without much trouble. So far it sounds like you're doing well.

I hope that helps.

PS may I ask how old you are?

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Re: CIS and having children?

Post by Snoopy » Thu May 25, 2017 10:52 am

Hi ILikeTea,

To have children or not is a very personal decision and is something you and your husband will need to decide for yourselves. This is a topic that has been heatedly debated for a very long time. Some with this disease believe it's better if those with MS don't have children so the disease won't go any farther in the family line. Others don't feel the same way.

I was diagnosed 32 years ago at the age of 24. I had been married for four years and we didn't have children. We went on to have 2 children, our son is 27 and our daughter is 25. Having this disease and raising children can be challenging. When my children were 2 and 4 I had an exacerbation. This affected my mobility along with extreme pain and many other symptoms, although difficult I took care of my children and they didn't realize anything was wrong with me.

I have never regretted having children. If I had to do it all over again I would make the same choice. My children and the care of them allowed me to focus on them rather than the disease. My adult children know there is always a possibility that one or both of them could end up with MS. Both have told me they will deal with MS if they ever end up with it and are thankful for being born.

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ILikeTea
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Re: CIS and having children?

Post by ILikeTea » Fri May 26, 2017 5:35 am

Thank you all for the information and advice! It is very helpful.

David1949, I am 29. Now that I do the math, I've been CIS for about 4 years. I'm at the age where everyone is looking at me like, Why don't you have kids yet? If not now, when? What are you waiting for?

Does it matter that no one else in my family history (that anyone can remember), has/had MS? No one on my husband's side either, but we haven't specifically asked either (my own mother took it really badly, and she honestly gives me so much unneeded pity so I made the decision not to tell anyone else, including his family and our friends). Maybe I should tell them to inquire, but I honestly don't want them to look at me differently. Could it be possible that I'm just a "one off" in my family, and could I pass it down still?

Maybe this deserves a separate topic for another time, but has anyone here with MS adopted children? I'm afraid of going through the long process and being rejected. I think that would crush me.

Edit: I found the one thread from 2007, but it didn't say if they did try to adopt and what their experience was.

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Re: CIS and having children?

Post by David1949 » Fri May 26, 2017 11:58 am

ILikeTea
Did your neuro find lesions on your brain or spinal cord on the MRI?

Well anyway here' s a little advice on life in general. If you spend your life worrying about all the bad things that could happen you won't be able to live your life. And you'll miss all the good things life has to offer.

I used to worry about everything. But all that worry never did anything except keep me awake at night. (Sometimes I wonder if worry related stress caused MS)

I wish you well, whatever you decide
Your friend
David

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ILikeTea
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Re: CIS and having children?

Post by ILikeTea » Sat May 27, 2017 4:09 pm

David1949
I have lesions on my brain and spine. Apparently I have been doing very well since the event and the betaseron has helped.

My husband is amazing, but on this he's not interested in thinking about it too hard right now. Which drives me crazy because I need to plan things! I think we need to wait at least a year before we get going on anything. But there are so many avenues to choose: donor egg, surrogacy (without my egg), adoption (pubic, private, international), biological children...and some of these can take years and a lot of money that we'd have to save for. It seems that having biological children would be the easiest (and cheapest!) but it's still something we're going to have to talk about. And there is no easy answer for this, I see that now. I was hoping that someone, a random expert on the internet, would be able to just tell me what to do, but...that was stupid of me. I have to be an adult and make my own decision :P

Thank you, everyone, for the lovely advice. Not worrying about everything, and that children are thankful for existing, it means a lot to me.

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Re: CIS and having children?

Post by 1eye » Sat May 27, 2017 5:00 pm

From the viewpoint of 63 I love my kids, and wouldn't want them any other way. Definitely worth it. But your life will begin again once they have moved out. It could be a good one, especially if you get a 20 year head start.
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