Dysautonomia & Parenting

[mattsmum]

Nother one here I had my child before I was diagnosed. And no not planning on having any more with POTS playing a factor.

I had 3 miscarriages prior to me having my son. Don't do anything stupid like fly in aeroplanes when you are pregnant even if the dr says you are safe to travel. I wonder often now if POTS and air pressure in planes played a part.

I really struggled with my son who was a bad sleeper and the whole sleepless thing and fatigue. Us POTS people need our sleep!

You want to see how cleaning up toys constantly picking up after kids does your head in literally makes you sooo dizzy.

But I wouldn't swap my son for the world he is priceless to me my little miracle.

All the best.

[Tammy]

I'm having a very hard time parenting a toddler while being ill. I guess what frustrates me the most is that since I'm too weak to do much more than get myself out of bed and out to the recliner, my two year old pretty much is on her own for the day, watching lots of disney movies / cartoons all day. We have child proofed the house beyond reason as getting out of my recliner to grab something from her that she got into every two or three minutes was unbearable and I just physically can't do it. We've had to put a lock on the fridge door, locks on all room doors high enough that she can't open to get into as since she was born, I haven't had the energy to child proof any other rooms other than the livingroom and kitchen that she has access to during the day. The chairs in the kitchen are tied to the table or she will take them and push them to the counter and climb up and get into everything. All the cabinets on her level have locks and we had to put a door onto our stairway so she couldn't get to the basement and get into all the stuff that's down there also. Going outside to play is impossible, so she only gets to go outside if my husband has the energy when he comes home (he works 14 hour days and is also shot by the time he gets home). She's two and a half and I know potty training is something that needs to be instigated soon, but I have no idea how I'll have to energy or ability to train her to do so, and she still uses a bottle as it keeps her more content throughout the day, but it's terrible on her teeth. Basically, I'm failing as a mother due to my health and don't have the strength to try and get help either - since I'm not formally diagnosed with POTS (dr felt I fall into the positive range but was only borderline on the tilt table test) and my new cardiologist seems to think I'm not as sick as I am, I don't qualify for assistance. We love her dearly, but her days are a far cry from what I had envisioned for our children. We can't afford day care at this time and all our relatives/friends either work, are too old/ill themselves, or just choose not to help out (for a while we had some support but since it's such an everyday thing for me, it just got to be too much for friends/family to continue helping). The only thing that gets me through during my worst parts of each day is prayer, it's all I have to give me strength to not give up.

- Tammy

[Mrs. Burschman]

I voted for "have chosen not to conceive." I think I was born without whatever gene it is that makes women want to be mothers. Acutally, I think my brother got my copy. He's always loved kids! He has one infant daughter and probably will have more.

But I have to admit, beyond that, I really don't want to pass on POTS to some unsuspecting kid. My anxiety is the worst part, and it seems like it gets worse with every generation of my family.

For now, I'm the proud owner of an IUD!

AMy

[Sunfish]

i would LOVE to have children but realistically don't expect this will be my reality. if by some miracle my health were to improve greatly i still very much doubt that i would ever choose to conceive for several reasons. these are MY reasons which i would never impose on anyone else as our situations are all different. but if i were to improve to the point of even being able to consider caring responsibly for a child, i wouldn't want to risk pregnancy in regard to my own health nor would i want to risk the chance of a genetic connection to my health issues over the years. i'm pretty sure that my docs will all concur on both fronts. i would, however, adopt in a heartbeat if my health were to allow it. realistically, though, i grieve the fact that parenting isn't likely in the cards for me, so i try to vicariously enjoy little ones that i'm lucky enough to have visit at times.

melissa

[stampingamy]

Thanks so much for this poll. I am 35 and have been married 11 years. When my dear husband and I were married we thought we would wait 5 years. 5 years came and we still didn't know. Part of my concern was that I need, and can now say need without reservations, 9 hours of sleep. I don't function well after a bad night's sleep and 2 in a row, life is tough. Being tired and not feeling well makes me cranky. I don't want to be that kind of parent. I love kids and have worked with them extensively in my job so I know what it takes to be a good parent. I didn't want to shortchange a kid. Many, even my husband, would say I would be a great mom, but they aren't in my body.

A few years ago we were considering baby roulette - just doing what we do and seeing what happens. Then my symptoms got worse and I was referred to a neuro and now have a dx and more information. I am currently learning more and more about managing my POTS and how that effects me and our life.

When I talked to my neuro about it he didn't have a good answer - go ahead and get pregnant if you want - for some people their symptons get better, some get worse, some stay the same during pregnancy. What about after I said - same answer. My ob/gyn had NO good info. She went so far to tell my my BP is fine and that is what matters. I explained what happens when I stand and her answer was to take my BP again and say it is fine. As my husband said when I told him this story "What part of postural doesn't she understand." Needless to say I am not going back to her.

The next thing my dear husband said was we would do what we needed to do to get me through a pregnancy. Being pregnant isn't the only issue - it is the energy and time it takes to raise the child. So... all that to say I have chosen at this time to not have a baby. My husband understands, but is disappointed. I do believe he understands though. Most of the time I feel good about my decision. Sometimes I worry it will be a regret. I have never been one who dreamed of her time to be a mother, but when I got married thought a child would at some point be part of the future. I agree with the post that said if you have POTS you need to really ask yourself can I do this? I admire those of you who have. It is a wonderful calling and job to be a parent and I admire you for doing it. My answer to that question asked in my head again and again has been - "no, I don't believe I can do this."

I appreciate all the posts and really have needed this discussion.

Amy

[Catelynnw3]

I got pregnant at 19, not intentionally, and had my daughter two days after I turned 20. Prior to that, I don't think I had POTS. I think back though and always remember being more tired and having less endurance than other kids/teens. After I had her, I struggled with a fast heartrate and other symptoms that went undiagnosed. I now debate whether I had postpartum thyroid issues or POTS that was never checked out. Anyway, I met my husband when my daughter was 1 1/2 years old and we married when she was almost 4. We decided we would try for another child immediately and had a son about 9+ months later. After I had him, I felt okay for a awhile, but then began to feel similar symptoms as after I had my daughter. The endocrinologist said I had subclinical hyperthyroidism. We decided to try for a third child about 2 years later, but I had three miscarriages. (the first was a partial molar pregnancy, the second and third were the result of genetic errors) Finally, about 4 years later I gave birth to our second son. After I had him I became hyperthyroid, but couldn't wean him so I could go on medication. Finally at 13 months, I was able to wean him but my thyroid went temporarily to normal then hypothyroid. I went on medication at that point, but from then on continued to suffer with the symptoms I have to this day.

I was recently diagnosed with POTS, 8 years later, and have found motherhood to be a big challenge at times, but I definitely have no regrets. My children see and know my struggles and sometimes get angry about them, but are compassionate, caring individuals. My daughter is almost 17 now and my boys are 12 and 8. I agree that having children forces me to get up and function every day, which is a good thing. They are very forgiving though and know when I need a break. They keep themselves entertained and I think that having siblings definitely helps in that area. I also push myself past my limits to be the best mom I can be for them. I guess kids can help us do that. I don't work now, and I don't feel that I could; but I have been so thankful to be able to be home and be a mom to them. I do remember some really difficult times though when they were younger and I had to literally struggle to get through each day. God sustained me through those times though, and I wouldn't change it for the world. My prayers go out to others who struggle with the decision of whether or not to have children, and those who have young children and are finding it difficult to take care of them.

[aclexis]

Hi all!

Thank you so much for putting this poll up, it's a topic that's been on my mind since I was dx'd just over two years ago. (Just after the doc told me he asked me not to have children anytime soon!) I've wanted kids ever since I can remember and due to some strange family circumstances I pretty much reared my younger brother for a period of years. Even then I knew that I would find happiness in having my own some day.

Before I was dx'd my vague plan was to wait til I have a career sorted (and maybe a man!), now I'm 24 just finishing a masters and in a relationship that seems to be heading in the serious direction and my younger sister is due with her first child in a month's time. I can't stop having debates in my head about having children. I adore them and think that my future without them would seem like a shell of what I have dreamed of since I was young BUT as previous posters have outlined, it's the responsible rearing of a child that makes all the difference. I fear being an absent or faraway mother simply because I can't get myself up outta bed and it would be the greatest cross in the world to bear if I was responsible for my child having pots or similar.

So I voted 'No and not planning' but I desperately wish my circumstances would change so that adoption would become a possibility.

[roxie]

HI!! I put "other" b.c I am confused and just don't know what God's plans for my furute are.

I have been ill since I was 12. Last year was the strongest I have been, but still no where near normal and not able to have a baby! Now I am struggling with my meds again trying to find the next things that helps me to get some strength.

Right now I am 22 and somedays I think that I would like a child SOMEDAY (def not near future) but then there are days I don't know. If I get stronger adoption is always an option and something I admire, but i just don't know.

I joke with one of my friends that I only want to have a biological baby if I marry a hot guy so I can have a son just like him, but the truth of the matter is I still have yet to find a guy that is going to stick around for more than a date or two when they realize I have a seriously altered life, so when it all comes down to it I JUST DON'T KNOW

I see all the stuff my mom has to do and I wonder how I would ever be a good mom b.c I just don't have stamina,

Madeline

[mom2amonkey]

Interesting topic. I got pregnant when I was 18. I was diagnosed with POTS when I was 13. I felt pretty good during my pregnancy and continued on my propanalol the whole 9 months. Since he was born, life has been one big roller coaster ride. He has had medical problems since the day he was born. At 13 months he had a feeding tube inserted because his stomach didn't work properly. As a toddler and preschooler he always complained his heart was "beeping" fast. I took him to cardiologist after cardiologist and I finally found one to listen to me. Even though the others had holtered him and he had documented heart rates of 200+ even while sleeping I was told he was fine. I decided to take him to Children's Hospital and he had a tilt test done and he passed out within minutes. He was then diagnosed with POTS and syncope. Braden is now 8 and struggles everyday just to even get out of bed. We have tried numerous medications with some relief but not enough. I feel guilty everyday knowing that I passed this on to my son. I just don't think I could do it again.

Those of you with children, do your children show any symptoms?

Elizabeth

[roxie]

WOW Elizabeth! How is your POTS doing?

[mom2amonkey]

WOW Elizabeth! How is your POTS doing?

Thanks for asking....my POTS is doing so-so. I have my good days and my bad days. If it weren't for the extreme fatigue I would probably feel much better

[Valentine]

Hi

Your story was interesting an inspiring regarding your children. I was lucky enough to have children before my POTS diagnosis. But thinking back i think i have probably had it for a long time. You talk of bad times earlier on - could you highlight some of the areas where things were particularly hard. Experiencing pain in the muscles is a great issue for many with sickness, migraines etc.

Do you think it is possible to ride the storm and things can become a little better. Some days it seems so hard to move your aching limbs about - having a rough time at the moment and my family just dont seem to understand.

Take care

Valentine

[ladyt]

Hi everyone..

This is an intresting subject.. i have not been abel to read and "undrestand" everyones post on this link, sorry..

I am at an age that the clock is tikking (early 30s)..

I dont have any children, and i whant to. But I can hardly take care of my self, how can ? then become a mother..? And what if I pass this one to the child..? I have read somewhere online that some women whit pots actually have gotten better during and after preg.. But i dont know if I am the gambling type..

I am trying to gett my healt in best posible shape, but.... And I dont know what my partner thinks, he dont whant to talk about it.. If i where to get preg, it would leave even more presure on him, and hi would have to get a new job (travels alot).. and Could we aford that..? sorry rambling now , but this is much on my mind.. and does not really have enyone to talk about it white..at leat not that might really understand..

[masumeh]

I said "other" because I had my daughter after onset, before diagnosis. Her pregnancy actually bolstered my recovery....I was totally downhill before, and I didn't know what was wrong with me (didn't know about POTS, nor did any of the -like- about forty doctors and specialists I saw). I was bedridden, getting worse exponentially over about a 6 month period...then I just decided that I didn't want to die without having a child, and got pregnant. I was hyperemic, but that was better than the constant braindead and in bed state I was at before the blood volume increase, hormone changes, etc. helped rid me (temporarily) of dizziness and fainting those first few months. Well...now that I am highly functional and fainting only rarely (four years and a thousand faints later, mind you), I really don't want to do it again (the hyperemia, I mean).

Thanks for the interesting topic!