Your kids with genetic disease having children

[Pen]

I've seen first hand what hoping a stable spouse will do for the unstable spouse several times.  It was tragic.  I have seen first hand that an unstable parent living in a house with stable people wasn't the fail safe people wished for.

 

 

 

 

I have no idea whether the situation you have seen first hand that was tragic would be like that of Barb's dd and ?SILtobe. Maybe. Maybe not.

 

 

I have no idea whether Barb's dd is unstable in the way your niece (?) is.

 

Others on here are reporting that they have similar conditions, or were parented by someone with similar conditions and that it can be successful.

 

Clearly there is a range of how these things can manifest and what outcomes there can be.

 

That Barb's DD is talking with her Mom about her desires for children and willing to listen to advice and suggestions, makes me think she may well be in the group where it will work out reasonably well with sufficient planning and preparation.

 

2 loving parents, and at least one and maybe both sets of loving extended family is a lot more than a lot of children have.

[Pen]

Barb, I continue to be concerned about what you are reporting about ?SILtobe and his narcolepsy etc, -- particularly as it might affect dealing with an infant, both in terms of the care of the infant and in terms of the difficulties of a baby making his situation worse.  Maybe just to bring that up with your dd and she might think about it and have ideas for how to deal with it?

 

 

I think another subject  to discuss with your dd  is the assumptions that others will have about her. And if she does have children, not only how to make life good for the family, but also how to deal with the assumptions that others will make--as for example, if they have to go to the ER with a child with an injury, that probably assumptions that are negative about the dd and SIL will be made by at least some people there--regardless of actual reality.

 

Possibly, Barb, nanny school or other education specifically related to caring for babies, and/or some work in a daycare could be helpful prep?  Might it be possible for them to have an au pair or something like that to help them if they have children?

 

I have a friend whose Dad has cerebral palsy such that he could make a good living using his brains, but had a lot of limits physically.  Their family had a live in nanny / housekeeper type person while the children were growing up, so the parents were not the ones getting up in the middle of the night to deal with babies.

 

What about getting on online forums for people with bi-polar, EDS, and narcolepsy, and learning from them how people have coped with having children? 

[Barb_]

They've gone back and forth on whether I'm type 1 or 2. I definitely have more depressive episodes than manic episodes, although as I age, there's a theory that the mania presents as anxiety. But I have had pretty clear cut manic and mixed episodes, so probably type 1, although I'm currently doing well not on any classic mood stabilizers.

 

I may not be typical, however, because Neurontin was pretty much a miracle drug for me when the dosage got high enough. And probably not placebo since I went through a whole host of other drugs with no relief before we tried that one. Studies show that it doesn't work in bipolar, but there's really no doubt that it absolutely did for me. My psychiatrist says that he's had a few other patients for whom it has worked well, that the studies are probably right and that on average, it doesn't, but that there may be individuals who respond well to it. It's just that they are so few it's not going to show up on studies.

 

But nothing worked as well as pregnancy and lactation. I did stay on my meds, but it's the only time I've had rock solid control. I'm a good mother to tweens, but I was a GREAT mother to babies and toddlers.

That's why drug trials are so aggravating. Lamictol has proven absolutely necessary in my dd's case, but Concerta helps to keep her from sliding into a depressive episode. She's never been ADHD-maybe a little dreamy, but never hyperactive. They started her on it in the hospital to support the mood stabilizer and take the edge off of her depressive episodes. Her regular doctor was skeptical, but the combo seems to really work well to keep her stable.

[Barb_]

Barb, I continue to be concerned about what you are reporting about ?SILtobe and his narcolepsy etc, -- particularly as it might affect dealing with an infant, both in terms of the care of the infant and in terms of the difficulties of a baby making his situation worse. Maybe just to bring that up with your dd and she might think about it and have ideas for how to deal with it?

 

 

I think another subject to discuss with your dd is the assumptions that others will have about her. And if she does have children, not only how to make life good for the family, but also how to deal with the assumptions that others will make--as for example, if they have to go to the ER with a child with an injury, that probably assumptions that are negative about the dd and SIL will be made by at least some people there--regardless of actual reality.

 

Possibly, Barb, nanny school or other education specifically related to caring for babies, and/or some work in a daycare could be helpful prep? Might it be possible for them to have an au pair or something like that to help them if they have children?

 

I have a friend whose Dad has cerebral palsy such that he could make a good living using his brains, but had a lot of limits physically. Their family had a live in nanny / housekeeper type person while the children were growing up, so the parents were not the ones getting up in the middle of the night to deal with babies.

 

What about getting on online forums for people with bi-polar, EDS, and narcolepsy, and learning from them how people have coped with having children?

I have the same concerns. They are both good people--self aware, mature and responsible. Dd does have experience with babies and children due to her four younger sibs and years of babysitting. But illness is unpredictable. You brought up some interesting points and some good things to think about--thanks!

[Pen]

I have the same concerns. They are both good people--self aware, mature and responsible. Dd does have experience with babies and children due to her four younger sibs and years of babysitting. But illness is unpredictable. You brought up some interesting points and some good things to think about--thanks!

 

 

The people I have known best with bi-polar part of the various conditions your dd and ?SIL have, had some symptoms that were recognizable to others when things were getting off--which would be a good time to go get meds adjusted etc.  

 

But they themselves did not tend to recognize the warning signs, and or, once it started to go off kilter, either depression or hypo-mania setting in made getting assistance hard at that point.

 

Also, two people I know pretty well, one with diagnosed b-p, and one not diagnosed, but who seems similar but milder, seem to have some pretty consistent triggers for their emotional state to go "off"...     For the diagnosed one: Stress.   Eating crud food.   Like, every time he goes to a certain fast food type place, he ends up getting messed up emotionally and where his meds have to be adjusted.   For the other: same as the other plus especially: alcohol use, pot use (the diagnosed one does not drink or smoke).  Don't know if your dd would have anything at all predictable like this that could be rigorously avoided.

 

I'd also look up anything you can find on things like orthomolecular approaches to dealing with bi-polar etc. in case that could help.  Maybe fill in where meds leave off, or make meds less needed.

[Barb_]

They're in college, so there are definitely triggers. Dd takes better care of herself that the average college student, but she's still a college student. It's true that in a few years she should be able to grow more stable as she is able to nail down regular habits. Luckily she lives with one of her sisters and a roommate who is aware of her illness. She has asked them to tell her when her behavior is off. Their attention saved her during a mental health crisis last year. That finally got her to take it all more seriously and things have gotten better since then.

[Lawyer&Mom]

I have mild autism and mild EDS. I had no idea before I had kids. The best advice I could give would be to create as much external stability as possible before having kids. (So don't move to a new city in a new state 7 months pregnant...) Be settled in your home, in your jobs, in your community, because you are going to need extra support. I would also consider a smaller family. For me, two is all I can handle emotionally and physically.

[Terabith]

That's why drug trials are so aggravating. Lamictol has proven absolutely necessary in my dd's case, but Concerta helps to keep her from sliding into a depressive episode. She's never been ADHD-maybe a little dreamy, but never hyperactive. They started her on it in the hospital to support the mood stabilizer and take the edge off of her depressive episodes. Her regular doctor was skeptical, but the combo seems to really work well to keep her stable.

 

I took lamictal for years, more because it made my psychiatrist feel better to have me on a "real" mood stabilizer than because it made much of a difference.  Stimulants and ADHD meds are a proven treatment for preventing and treating depressive episodes, although they're about third line down.  I took Ritalin for awhile, and it did help, although I wasn't on it long term.  Supplementing thyroid hormone is also a legitimate strategy.

 

For all you people talking about the problems taking a child to the ER with an injury and the assumption being that because the parent is bipolar, that it's more likely to be abuse.....you're kinda nuts.  Why on earth would the ER doctor know that Mom is bipolar?  It's not like you walk around with your diagnosis on a tshirt.  If there are signs of abuse (and I agree that EDS could cause injuries that might raise red flags), then an investigation might turn up that fact, but if her psychiatrist writes a letter or makes a call saying she's a good mom and not a risk, it really isn't a problem.  But of all the things to worry about, that's REALLY far down the line!  Like, I really wouldn't worry about it.  Obviously, you want to be as stable as possible before you get pregnant and you want to know that the meds you are using are safe for pregnancy.  (And lamictal is.  Not sure about concerta, but probably.)  You want a supportive psychiatrist and OB.  But while everyone was watchful with me, being bipolar and pregnant was truly no big deal, and being bipolar and parenting has been just fine, too. 

[Element]

My dh has family members with EDS, bipolar, and narcolepsy. He, himself, was born with thrombocytopenia and without radius bones (and with a whole host of related issues) due to a genetic condition for which carrier status cannot be determined. He grew up thinking he would never have children, as no one would find him mate-worthy. 

My daughter has EDS, ADHD, a moderately life-altering arrhythmia, and is the funniest human I know. I thoroughly enjoy her, as do her grandparents. 

My son has Asperger's, dyspraxia, and sensory integration disorder. He's quite clever and I'm convinced that the world will be somehow improved on a grand scale someday, and this improvement will have something to do with him. His best friend, another Aspie, has a parent with bipolar disorder. Best friend has not developed this disorder as of yet, and shows no signs of future development. 

 

Neither of them have my husband's genetic condition. I think it is too early to say, definitively, that neither will ever have bipolar disorder or narcolepsy, but we've seen no signs of either condition so far.

I think I would not encourage nor would I discourage your daughter from beginning a family. You will adore your grandchildren, if and when they arrive. They will bring you heartbreak and joy, just like any grandchildren. There's really no way to tell what, if any, genetic disorders they may have. The mere fact that you're considering this now and debating saying anything about it means you will be there to support your daughter, no matter what.  :grouphug: 
 

Edited September 25, 2017 by Element

[Barb_]

My dh has family members with EDS, bipolar, and narcolepsy. He, himself, was born with thrombocytopenia and without radius bones (and with a whole host of related issues) due to a genetic condition for which carrier status cannot be determined. He grew up thinking he would never have children, as no one would find him mate-worthy.

 

My daughter has EDS, ADHD, a moderately life-altering arrhythmia, and is the funniest human I know. I thoroughly enjoy her, as do her grandparents.

 

My son has Asperger's, dyspraxia, and sensory integration disorder. He's quite clever and I'm convinced that the world will be somehow improved on a grand scale someday, and this improvement will have something to do with him. His best friend, another Aspie, has a parent with bipolar disorder. Best friend has not developed this disorder as of yet, and shows no signs of future development.

 

Neither of them have my husband's genetic condition. I think it is too early to say, definitively, that neither will ever have bipolar disorder or narcolepsy, but we've seen no signs of either condition so far.

 

I think I would not encourage nor would I discourage your daughter from beginning a family. You will adore your grandchildren, if and when they arrive. They will bring you heartbreak and joy, just like any grandchildren. There's really no way to tell what, if any, genetic disorders they may have. The mere fact that you're considering this now and debating saying anything about it means you will be there to support your daughter, no matter what. :grouphug:

 

That was beautiful, thank you.

[Pen]

I took lamictal for years, more because it made my psychiatrist feel better to have me on a "real" mood stabilizer than because it made much of a difference.  Stimulants and ADHD meds are a proven treatment for preventing and treating depressive episodes, although they're about third line down.  I took Ritalin for awhile, and it did help, although I wasn't on it long term.  Supplementing thyroid hormone is also a legitimate strategy.

 

For all you people talking about the problems taking a child to the ER with an injury and the assumption being that because the parent is bipolar, that it's more likely to be abuse.....you're kinda nuts.  Why on earth would the ER doctor know that Mom is bipolar?  It's not like you walk around with your diagnosis on a tshirt.  If there are signs of abuse (and I agree that EDS could cause injuries that might raise red flags), then an investigation might turn up that fact, but if her psychiatrist writes a letter or makes a call saying she's a good mom and not a risk, it really isn't a problem.  But of all the things to worry about, that's REALLY far down the line!  Like, I really wouldn't worry about it.  Obviously, you want to be as stable as possible before you get pregnant and you want to know that the meds you are using are safe for pregnancy.  (And lamictal is.  Not sure about concerta, but probably.)  You want a supportive psychiatrist and OB.  But while everyone was watchful with me, being bipolar and pregnant was truly no big deal, and being bipolar and parenting has been just fine, too. 

 

 

This may be different in different places, but at least in some cases the info is in computers that have patient records.  

 

Often there are question forms that ask about parental health issues. And at least in some places they include not only physical issues but also questions such as has parent ever been diagnosed with a mental disorder.  I suppose some locations do not have such forms. In our area they are pretty routine.

 

And obviously not everyone will jump to conclusions about it in any case. But some EDS patients tend to have things like dislocations, skin wounds and so on. Repeatedly. And that can raise alarm bells.  

 

In your scenario where investigation, a psychiatrist letter etc. would  show the mother to be fit to take care of the child, there might still be emotional trauma in the meantime of getting the investigation done, and the letter sent.  

[Terabith]

I can see how there might be issues, maybe.  My kids' pediatrician might have the health history form; the ER probably wouldn't.  But I just can't fathom deciding not to have children based on such a slim hypothetical.  IF the child has EDS and has injuries that look like abuse, and IF the ER somehow knows about mom's mental health history, and IF they decide to open an abuse case....  I mean, I'd probably take normal precautions (good relationship with psychiatrist and pediatrician), but that's just such a slim possibility. 

 

I hope if they decide to get married and they want to have children, that they do.  Children are such a blessing and such a source of joy.