Having Children

[Patricia Gallup]

Hello -

It's new that I am posting to this website, but I have been reading the posts for quite some time now, and I have seen the postings about children more times than I can stand without making a comment.

Prior to your replies to me - I want to give you my background. I am the mother of a teenager who has had POTS for 4 years. I haven't been formally diagnosed with any particular illness, but I have symptoms of dysautonomia. My daugher says she hates me because I knew my symptoms before her birth - and the last 4 years have been nothing but Dr visits, endless testing, and an almost completely bedridden life for my teen.

My husband and extended family are willing to do anything to get her the proper care and treatment she needs. I do everything to try to give her as fulfilling life as she can live, but there is still an underlying anger there.....she wishes she were never born......and despite counseling for years, she continues to feel very hateful towards me because I had control over whether I decided to have a child or not.

Please take the time to read and consider my statement prior to making comments due to emotion.

I am concerned about the attitude towards having children on this site.

It worries me because I am not confident that the best interest of a child is taken into consideration.

There's so much responsibility involved in raising a healthy baby by a healthy parent. The postings on this site encourage the right to have babies by individuals who are not healthy - and have genetic issues that have incredibly increased chances of being transferred to the children.

Why are you ok with these increased chances of passing on illness - just so you can feel more fulfilled in life?? Everyone on here realizes the uncomfortable nature of going to the Dr constantly, the number of Dr's that you have had to go through to be properly diagnosed - are you really happy having a child who may have to go through the same illnesses? Also, are you prepared to face the fact that your life may be shortened unexpectedly due to the illnesses and your children will grow older without a parent?

Have you considered adoption or fostering healthier children? I just think it would be great to give an otherwise "unwanted" (for lack of a better word) child a better chance at having their own life fulfilled.

Please just take this into consideration - I am not trying to make people upset - I just think there are a lot of people in the world who have children because it's convenient for them - and they don't take the future feelings of the kids (healthy or not) into consideration. It's great to go to an OB/GYN for high-risk pregnancy but do you think about the child's health and well-being for a long time afterwards? If nothing else - please take the time to visit a geneticist to see about the chances of passing on POTS.

If I would have read or received information like this 18 years ago - I would have put my unborn child before my own feelings towards wanting to fulfill my own life.

Again - please reply using logic rather than pure emotion. Thank you.

[MightyMouse]

Actually, at this point, we have no idea what the chance is of passing dysautonomia along to a child. For those with sudden viral onset as opposed to early childhood symptoms, the likelihood of passing it along is probably no different than that of a healthy woman.

Secondly--there are very, very few known genetic causes of dysautonomia. The majority of members here who do have children, have kids who are free of autonomic problems. There are several, though, for whom it's pretty clear that their child does have autonomic problems. The majority of these parents either did not know they could pass their illness on, were given diagnoses other than the correct one when they had kids, or may have even be asymptomatic when they got pregnant. It's usually not as simple as make a decision not to pass on an illness.

The leading researchers in this field, two of whom I've had as my personal physicians, suggest genetic counselling. Again, though, one has to know they HAVE a disorder in order to know to take that route. During my prime childbearing years, I had incorrect diagnoses and would have had now way to know the potential outcomes. Such is the way it is for many of us.

All that being said, some women will know their diagnosis, and will choose to have children knowing full well that there is a possibility of passing the disorder on. That is their decision to make--and while I respect your opinion, I wouldn't be suprised if you get some pretty heated replies. This is a very touchy, emotion-laden topic, so it will be unlike that members who do have kids, or are planning to, will easily separate the emotion from the logic.

I certainly understand your view point, and am saddened to hear of how your daughter is struggling with anger about being ill, and targetting you in that process. This site has no attitude toward having children. The views are highly individual, as individual as each member.

[Dawg Tired]

Patricia, I see and feel where you are coming from. Unfortunately, there are so many differing opinions on weather or not these conditions are passed on genetically that it is difficult to make a blanket statement. I know that hindsight is 20/20 and... If I had known then what I know now I might not have had my now 13-year-old son. He is so far healthy. In my family my mom, my dad and I all have pacemakers due to arrhythmias, both of my sisters are on meds for the same and my oldest sister went to a cardiologist who insists that these conditions are not passed genetically through the family! (what more proof does he need??) Add that to the number of doctors who don't even acknowledge these conditions exist to begin with and where does that put any of us?

I worry about the effect my chronic illness has on my son as far as the fact that I can't get out to do things I would like to do with him - is he ashamed of his mom for spending so much time laying on the couch?

These are things I leave in God's hands - while I don't wish to get into a theological discussion, suffice to say that if not for a strong faith many of us would not make it from day to day, much less from generation to generation.

[LisaColumbus]

Have you considered adoption or fostering healthier children? I just think it would be great to give an otherwise "unwanted" (for lack of a better word) child a better chance at having their own life fulfilled.

<{POST_SNAPBACK}>

In re: to adopting/fostering "healthier" children. Many of the kids that are in foster care or available for adoption will have lifelong emotional and/or health issues. Many are born drug or alcohol addicted or have been bounced around the system for so long that they suffer from RAD, PTSD, OCD, ODD among other issues. If you are lucky enough and have enough money for an adoption of a healthy newborn, most times you will need to be emotionally prepared to handle an open adoption. Many of the kids who are adopted, be it newborn or older child adoption, also go through wishing they hadn't been born or wishing they had been aborted. Being placed into a loving home is not a cure-all for the emotional issues these kids can face. Also, as far as being "unwanted", the many of the kids placed for adoption were in fact very much wanted. Their parents either couldn't or wouldn't raise them, which has nothing to do with being wanted.

[ethansmom]

This is definitely a topic that is difficult for someone like myself to answer. Both of our pregnancies, while very much welcome, were unplanned at the time. While we knew we wanted a family, each pregnancy happened before we had a chance to plan for it or seek any type of genetic counseling. I like to beleive that this happened for a reason each time, even if that reason isn't always apparent right away. I couldn't be more blessed than I am with my two beautiful and (so far) healthy boys. My doctors seem to think that my POTS was caused by Lyme Disease, which leaves virtually no chance that the kids will inherit it (the POTS, I mean). So little is known about this condition and how it is linked genetically, that I don't think at this point it is worth sacrificing the beautiful gift of having a child, and of giving that child the best life that we can. Until more research comes available on this topic, it is a decision that rests personally with each family to decide whether or not they want to have kids.

I am sorry that your daughter is facing many hardships at this tender age. I can't imagine what it must be like for her. But...it is certainly not your fault. Nobody in their right mind would have a child to purposely pass on a debilitating illness, and hopefully someday she will see that for what it is. Couldn't we all blame our parents in one way or another? What if we all hated the fact that we were born? That just wouldn't be fair to them. I wish you and your family the best, and hope that your daughter will one day enjoy life and all it has to offer.

[yogini]

From what I have read, most people with POTS give birth to healthy children. While you raise some important factors to consider, I don't think this is a topic that can be generalized. You have to remember that there are people with varying degrees of POTS and many whose POTS is not genetically related.

I am sorry your daughter is having a tough time. Although she feels that life with POTS may not be worth living, I think most people on this board would disagree. This site is filled with dysautonima patients who, despite their medical conditions, lead happy and productive lives. And science is constantly evolving to make our lives better.

I don't think we necessarily encourage people to have children on this site, rather we provide much-needed support for those who have made the decision to have children. In the end I think each person needs to make the decision based upon their own circumstances, and I would not judge anyone for their decision.

[taylortotmom]

Nina hit the nail on the head so I just want to make a couple of additional points. First, in my situation, I had no clue until I had my second child that there was anything wrong with me. Pregnancy oftentimes triggers dysautonomia and that appears to have been true in my case. A second point is about the adoption suggestion. Although I do not know this for a fact, I would think it would be hard for someone with chronic illness to have an adoption approved. And really, isn't it just as unfair to parent a child while sick regardless if it is your biological child? Of course, none of us want to be "sick" parents but that is the hand we have been dealt. And honestly, it has been a blessing in our family. My illness has made our family closer and I value every second I have with my children. Do I feel guilty that I might have passed on some bad DNA to my kids? Yes. But, so does my father. He feels like he "did" this to me. The truth is- things happen. Dysautonomia is just too unpredictable at this point to say - "don't have kids if you have it". It presents so differently in all of us- just read on the board at what all goes on with everyone. And... we're learning. My hope is that if my children do in fact have the "dysautonomia gene" that by the time it truly affects them we will no so much more about what to expect and how to treat it.

Carmen

[Ernie]

Hi,

I tried to adopt a child but it cost 20,000$ and we did not have the money for it.

My disorder is genetic and I decided not to have children.

Ernie

[DSM3KIDZ]

As a 28 yr old mother of three (6,3&1) I feel this is a very touchy subject. I personally feel with out my beautiful children there would be little meaning in my life to fight this illness as hard as I've been trying all year. My illness came on OVERNIGHT while I was already a mother of 3 small children. My son was 5months and I still have no idea how or why I got sick but I am and now I have to do the best for my kids that I can. My husband and family are great so regardless of how I feel on any certain day they feel loved, cared for, and special. My kids get more of me now that I have an illness than before when I was chasing a better financial future and worrying about the stupid little things in life. Since my illness my children have learned more compassion, patience, independence, self worth and family teamwork than anyone else I know in their age group. So illness ***** but good does come out of it if your not blinded by the obsticals

If I got my illness undercontrol there is no doubt in my mind that I would have another child.

You may choose to have kids or not but ultimately you don't decide. It's already been decided for you. So every child born to us or anyone with a chronic illness is born for a reason. It is a gift.

I'm sorry to hear your struggles with your daughter. She is also here for a reason she is a gift.

Dayna

[MightyMouse]

I just want to say how touched I am that all of you, Pattrica included, are able to articulate how you feel on this topic in such a sensative way. I know when I first read through Patricia's post, I got upset and thought "how dare anyone question another person's choice to have children"... but that passed almost as soon as it arrived, and I thought... "wow... that's a tough one".

Nina

[DSM3KIDZ]

oops

[sally]

Hello Patricia

Wow, this is a tough one. Everyone will certainly have a variety of different feelings on this subject pertaining to having children when you have any type of illness especially if it's genetic in nature.

Personally for myself, I believe in the old saying that there are no guarantees in life especially when it comes to health issues. You could adopt a perfectly healthy beautiful child and then find out that he/she has a terrible chronic illness or any type deadly disease such as cancer, which you were not aware of upon adoption. Most assuredly you would feel awful watching any child suffer from an illness/disease and feel totally helpless as a bystander. But for the love of the child or person you would most certainly stand strong as possible to help them through their personal trials while dealing with any terrible illness no matter what the condition or how long they lived because of the disease.

As far as the genetic issues, most people from what I've read when researching genetic disorders have at least 5 different genetic disorders. Most of which they don't even realize they have or know about until a later date as the diseases present themselves. I think the decision is a personal one and the potential parent should consider whether or not to proceed with having children depending on the disease that could pass down. If you have the benefit of knowledge beforehand you can go into the decision more aware. And yet there are still no guarantees, as in most genetic illness it's a gamble.

I'm very sorry about the trials you & your daughter are experiencing and the heartbreak you must be feeling while going through this along side her. Your daughter will realize differently as she gets older and more able to reflect on her situation that usually only comes with time. She in time will see the courage you display in facing a terrible life changing illness such as this one every time you take care of her needs while fighting tears and by the support you show. And she will see the love you give unconditionally to someone by listening to any fears & frustrations she may display towards you at this time in her life.

By having a chronic illness yourself, you also give the benefit of understanding towards the child, which is a biggie in my book. Most normal people who have never been ill cannot understand what it feels like. That is something special that you and your child share just at this basic level.

Believe me; I do understand what you are feeling. I, as many on here have dealt with long term chronic illness and having children who have received the same sentence with the same health problems due to genetics. It's a hard thing to contend with at times but I feel that no matter what, life is a gift and also is ever-changing. What is today, may not always be. My girls have taught me tons about life and courage.

I have been witness to my girls who have Ehlers Danlos Syndrome, chronic pain, chronic fatigue, Dysautonomia, Ulcerative colitis suffer terribly at times and fight the frustration of not being normal (whatever that is) but they have tremendous courage, compassion, twisted sense of humor, tremendous love for small things just as much as any large accomplishments, love for family, ability to weed out false friends, insincere people, just to mention a few lessons all due to having chronic health issues. These things are what having a chronic illness have taught them in their young life so far which I feel are positive qualities. These are qualities that alot of people never learn throughout their lifetime. And yes, sometimes they cry and wish things are different but I have always told them, Okay...this is what you are dealt now what can we all do to help you through it and lets see how we are going to make this work? And sometimes it means just listening to frustration.

I hope you understand what I'm trying to convey to you and I do hope I haven't offended you by any statements I have made on this subject but it's a subject that is dear to my heart. I do wish you and your daughter the best.

Many blessings,

sal

[funnyfrog]

Hi Patricia - I want to tell you that I have given much thought to what you have said on this topic over the past 3 plus years since I have been sick and though it is not easy to accept, I agree with your viewpoint. I am 36 and was getting ready to start a family before I got sick - I am happily married, going on almost 12 years now and I have consulted with my regular doctor, as well as cardiologist,gastro and neurologist and high risk ob/gyn and all of them do not feel that I could safely carry a baby to term without major complications happening - I spent around 5 months in the hospital 3 years ago and am on meds now to control my symptoms, but cannot work and am limited in my activities -Am I bitter? No, everything happens for a reason and I have looked into adoption, but we cannot afford private adoption and so maybe one day, we will try to adopt through the state program or maybe by some miracle I will wake up and I will be better-Who knows? As much as I want children, it is not fair for them to suffer the consequences of my illness, whether it is because of some medication that I needed to survive during a pregnancy that was not safe for a fetus, that they were born premature or because I have so many gastro problems from POTS and gastroparesis, that I needed TPN while pregnant and they didn't get enough nutrition while in me? Is this fair? I personally in my case do not think so and so that is why here I am, with my 2 cats, who I love dearly and they are 11 and 8 years old and are like children to me. Thanks for bringing the topic up - I know not too many people will agree with me either - Beth

[Patricia Gallup]

I had figured I would elicit some emotional responses, however, it was certainly not my intention to "offend" anyone.......being that who would I be to "throw stones from my glass house?"

I just have these kind of discussions with my daughter, and at family counseling, and I believe she's at an age, where she's entilted, and educated enough to have her own opinion, so I thought I would post.

We all do what we can do make it through life, what choice do we have? We LIVE, we deal with the hand of cards we've been dealt, it is simply her opinion that if she'd had the choice, she would have sat this hand out. It's heartbreaking to hear that yes, but she is her own person.

She now feels the need to speak up for those who don't yet have a voice.

I appreciate all your responses, and all the information this site has provided simply by being here.

Ernie, and FunnyFrog, I think as my daughter ages she will definitely relate to your decisions, and she's already taken kindly to pets. (not to make light of either of your situations by any means)

Sally, I appreciate your post, and probably related most to it, thank you for taking the time.

Everyone else, again, I was not trying to offend, just trying to give my daughter a voice, and provide thoughts on something I wish I had known years ago.

[JaneEyre9]

Patricia, I understand where you are coming from...

Just wanted to add a different perspective--

My mom was diagnosed with Multiple Sclerosis before I was born. I'm very, very grateful she made the choice to try to have me. Though I have health problems (some genetic, some not), I don't have MS yet. I do have a mother who understands chronic illness. She is one of the kindest and most compassionate people I've ever known, largely because of her own experiences with "invisible disability." Like Sally and others have mentioned-- illness can bring about greater and deeper blessings.

[Jenn202]

I havent been able to post in a while, but just logged on to read this post and must reply with my thoughts.

I agree with many that have replied here... Genetic cases of Dysautonomia are very rare....

The crux of my dysautonomia came from an undiagnosed case of Lyme Disease BUT my father also has dysautonomia as well as hypermobility ( which I also have) and has had his whole life.

Do I blame my father for my illness or wish I were never born?

Absolutely not......

I have struggled in my life, but in those struggles I believe I have become a much stronger understanding adult... I would not for a second blame my father for his passing this on to me. And in relaity has I not been effected with undiagnosed Lyme Disease I most likely would have not had a problem with the dysautonomia.

On to having children. I am truly sorry your ecperience has been a negative one... I cannot imagine how difficult it has been for you to see your daughter ill.....

But that also does not mean that others with chronic illness musy deny themselves the happiness of children. Nothing is guaranteed in this life....the healthiest of parents can have the sickest child... Havig failth in whatever you believe in and using the strength from what you have gone through is what shoudl be everyones gauge for their own personal decisions...

I have Lyme Disease , could I pass this on to a child? Its a possibility... BUT with proper anitbiotic treatment while pregnant, as well as avoiding breast feeding it brings my chances down to less than 10%

I guess what I am trying to get at is the decision to have a child is a vert personal one that should be between the parents, there family, and God or whomever their high beliefs are.

Adoption is wonderful, but again, its not for everyone either. And adoption can hold a slew of problems as well.

Anyway, I do wish you well and hope you and your daughter can find peace in your life at some point.

[steph37822]

oops

[avais1]

Sorry I am late, but wanted to respond. I do not yet have children, but am 31 and considering it. I don't really have any advice, but thought I would share from my own experiences, and how my views came from them. Please know, this is just my own experience. I am in no way judging others, nor would I think that if someone disagrees with decisions I have made, that they were "wrong". We are all entitled to our own viewpoint. Take what you can from my experience, and if it is all bad, then feel free to "dump it" .

I have suffered from dysautonomia "off and on" all of my life. The symptoms became apparent when I was in second grade and started fainting. It was hard, as my teachers and school nurses insisted I was a diabetic, even though repeated testing showed I was not. I always struggled with school attendence, which made teachers dislike me, and it was hard to make friends when "you're never there". I was lonely a lot. The other thing that made it difficult, was my illness tended to "wax and wane", so sometimes I could do things very well, in fact, believe it or not, in 4th, 5th , and 6th grade, I was the schools fastest female runner, and was always the "presidential patch" winner in the fitness tests. I was actually one **** of an athlete. Which is why, when the "spells" hit, nobody could understand how I was completely incapacitated. Of course, given I was in such excellent physical shape for a young girl, I was diagnosed with "nerves" and was "faking for attention". Luckily for me, my mother never believed that.

In junior high, I had one of my most embarrassing "pots" experiences (of course I didn't know it was pots then). I was in metal shop, and started feeling the "spell" come on. I knew I had about 3 minutes to make it to the nurse before "blackout" came. I was halfway down the hall, and I was losing it, so I laid down in the middle of the hallway. I was fading in and out of consciousness, while the kids in the next classroom stared at me and laughed. Not one of them offered help, and the teacher came out, looked at me, and CLOSED THE DOOR AND LEFT ME ALONE IN THE HALLWAY! After 5 minutes, I got up, ran to the nurse and collapsed in the bed. My mother was called because 1) I left metal shop without a hall pass 2) I had no pass to be in the nurses office, and did not check in with the nurse (I literally ran to the cot as I was passing out again) 3) They insisted I be screened for drug use.

So now, everyone in the school thought I was a drug addict, and being "ultra-thin" didn't help that illusion any. Needless to say, I was angry, hurt, confused, depressed, you name it. It was hard enough being a teenager, let alone deal with this crap. I was crying, alone in my bedroom, when my mother came in. She was crying too. That was when she told me. She told me she had been ill like that when she was a kid, and sometimes even now, and that she was sorry, because she thought I "got this thing" from her. I didn't know what to think, say, or do, so we just sat there, holding on to each other and crying.

I have two brothers, and neither one of them have this issue. I was the "lucky one". So there I was, 15 years old, completely wallowing around in my own self pity (unfortunately, I have ALWAYS been good at doing that ). And YES, I sometimes wondered why I was even born. I admit it. And YES, at that time, I was a little angry with my Mother, but that changed over time.

I realized I had a decision to make. I was already "here" meaning, "born", so that was a pointless thing to ponder to me. I had to decide what to do NOW. I decided rather than constantly getting "beat up", physically by POTS, mentally by myself and others, and emotionally by everything, I was going to fight back. I became sort of the "class clown" at school. When I would walk to the front because the teacher would call on me, I would joke "Now, you realize if I don't know the answer I am going to faint on you..." and the class, including my teacher, would laugh. I would joke with the choir teacher on days I couldn't stand and sing "Watch out, and don't push me, or you'll see the human domino effect when I faint and take every row out with me." It got so routine that Mr. Phelps would ask me, "Robyn, are we playing dominoes today?" and we'd laugh. I started making friends, in a bizarre way, almost BECAUSE of my illness. I even once faked a faint, for one of my girlfreinds, so I could create a diversion in class so she could run out into the hallway to talk to a cute guy who later became her boyfriend . I still had the illness, but was dealing with it differently.

Then, at 20, it hit me hard. I was laid out flat for 5 months, and it took me two full years to recover. It was scary, I thought I was dying, and I still had no dx. My mother was scared she was going to lose me. She felt terrible guilt over the whole ordeal. I had 5 years of a "remission" if you will, and then it hit me again at 28. This time, I was about to become engaged, was talking about starting a family, had started a new job, and was trying to finish my bachelors degree. The spells were horrific. I got ill at my mothers, and was too sick to return home, so she had me for two weeks of ****. She held the cold wash rag to my head (I'm a puker - hooray ). She held my hand, like so many times before. She would comfort me when I asked her if I was dying. She would spoon broth into my mouth, as I was too sick to lift my head. She brought in new pillows and blankets to the bathroom floor for me. She cleaned up my mess when I lost control of my bowels and bladder. And she cried. Not in front of me, but I could tell. She apologized over and over to me, and said if she could go through it for me she would. And I knew that she would. I wasn't angry at her anymore. It wasn't her fault. She suffered just as much as I did, perhaps even more.

After this last bout, I finally found Dr. Low at Mayo. I was driving to his office to see if I had just POTS/Partial Dysautonomia, or if I was progressing to PAF or MSA. I remember how blue the sky looked that day. How the grass looked so much greener. How beautiful everything was, and how sad I was that I may not see these things much longer. I thought about all of the people I had loved, and those who had loved me. But most of all, I felt guilty. Guilty for ever thinking about giving up. Guilty for feeling selfish, about complaining "why me" when there was so much I had taken for granted while feeling sorry for myself. Guilty for the blame I laid on others, especially my mother. I realized while at Mayo how so many others had things FAR WORSE than I did. How dare I complain? I realized how much of a fool I had been. A fool for ever "wishing" I had never existed, because here I was at that moment, begging God for another chance at life.

I got my wish. I am happy to be here. I love my mother more than ever, and we are closer than ever. We have a stronger bond than most, because WE HAVE gone through **** together. I do not regret her having me. I am happy she did.

Now, will I have children? I have not yet decided, but not just because of POTS. I DO NOT want my child to go through this hellish experience. At the same time, I recognize I would not be who I am without it. So, for right now, I am undecided.

Anyway, blessings and good health to all of you. I wish you all the best NO MATTER WHAT YOU DECIDE.

[MomtoGiuliana]

This is such a very sensitive subject and everyone has handled their responses with such insight and maturity.

First, Patricia, I am so very sorry for your daughter's struggle with dysautonomia. I know it is painful for you that your daughter is so ill, and angry. It is natural for your daughter to be angry. Of course you are asking these questions. I'm glad you have a place to come to, to discuss this.

I agree with Nina that we do not at this time know the risk of passing dysautonomia on to the next generation(s). I was even just discussing this topic with my specialist this weekend at my regular appointment with him. He used to be a researcher in the field--now he just treats autonomic dysfunction. He says that it is very likely to be 20 years before we will understand some of the most basic things about POTS--the different mechanisms that cause it (clearly there are multiple mechanisms, but they are poorly understood), how to successfully treat all cases of it, what is the long-term prognosis for POTS patients, are there genetic forms (btw, there is no way a geneticist can tell you the chances you will pass POTS to your child, unfortunately). He said it wasn't until the 80's that POTS was even recognized as a medical problem. He cannot even tell me the risk of me again developing severe symptoms should I choose another pregnancy (which I have already decided against, despite lack of information.) There is anecdotal evidence, but no other kind of data available to answer any of these kinds questions.

There is and was (when you chose to have your daughter) not any way to assess risk, even if you had a diagnosis yourself at that time. No way to assess the risk that offspring would be afflicted at all, not to mention whether they would be afflicted severely. As we all know from this forum, POTS presents in a variety of levels of severity--some of us have never been bedridden and even run marathons, others are quite ill for many years. Also, MANY people with POTS eventually RECOVER to a good to excellent level of function. This is a statement my specialist makes again and again.

I do understand your daughter's anger. When I became very ill with POTS during late pregnancy and post partum, I wanted an explanation, and I also felt angry with my mother. The reason--she had used some questionable medications during her pregnancy with me; she had not breastfed me -- and I believed these things could have played a role. This was not really fair--for one thing she made these decisions with the best information she had then available. Secondly, no one yet knows what causes POTS!

We each can only make decisions based on the best information available to us. For those of us with several cases of dysautonomia in our family, a genetic link appears quite likely, and in those cases, this might play a role in making a decision about having our own children, particuarly if the cases are severe. I think many of us do not see an obvious genetic pattern, and as I said, there is no way at this time to assess risk--e.g., genetic counseling, even if you think it could run in your family.

When it comes to having children, it is true that logical thinking can take a back seat to biological drive. I know many cases of this--outside of the POTS "community"--in situations where people are risking passing on far more serious (e.g., life-threatening) conditions. And I agree there are so many children in this world living in terrible conditions--just turn on the nightly news--Niger, Sudan, etc. Adoption is a beautiful answer that will work for some people, but it is not a simple solution either, for many reasons.

In my case, I did not know I had POTS until I became pregnant and became severely ill. I will not have another pregnancy following this experience--primarily b/c I fear becoming incapacitated for months--or who knows, perhaps longer--which we cannot afford financially (I have to work), nor do I feel it is fair to my daughter. Also, I fear it causing complications with the pregnancy since I am older (late 30s). Also, I do not want to have to take drugs during a pregnancy and risk effects on my unborn child. My smallest fear is possibly passing POTS to my child--but that concern is also there. We may adopt a child in the future--something that excites me. This is my story--but I would not judge anyone who made different decisions.

Take care, Patricia. Thank you for sharing your thoughts. I hope it helps you to read the variety of responses. There is nothing so heavy as a mother's feelings of guilt, even if she knows she did the best she could.

Katherine

[dizzygirl]

I have a few questions actually since we are talking about the subject of parents and pots and kids..

I myself have pots.. and strongly believe that both of my parents are also affected my POts or some type of dysautonomia as well..

I have a brother and sister and they are both perfectly healthy..

I feel so badly for my parents.. my father is unable to work due to health related issues, and has been denied for SSD, and my mother god bless her.. she works in a very HOT kitchen as a cook.. well they do not have insurance.. and cannot afford to go to the doctor to be checked out or tested for POTS.

BUt anyways.. my father suffers from episodes were he feels like he is going to passout.. He gets so white, and his skinn gets very cold..and he breaks out in a severe sweat sometimes.. and his heart rate get quite low.. and he suffers from chest pain..he has said that his heart feels like it stops sometimes.. and probably feels more.. but does not divulge alot of info..

my mom.. her symptoms are more like mine.. she is terribly heat intolerant.. she gets bad nausea, and dizziness.. and has had syncope spells in the past.. and more recently has come very close to passing out.. she has digestive problems, and sufffers from sever complex migraines.. her heart beats very fast.. she says that if she is laying in bed that she can see her shirt moving up and down.. her heart beats so fast... both of my parents have issues with low BP.. my dad has a combo of high and low BP..

my father also has some kind of muscle?joint disease.. but I cannot think of the name of it.. he was born with it.. and as a youngster had to wear braces on his legs... his knees would lock up..

my mom has been diagnosed woith fibromyalgia

In my situation I have to wonder if there isnt some kind of genetic component involved in my diagnosis of POTS. We believe that I have had POTS since birth.. only it has gotten more progressive over the past 3 yrs or so.

Does what I have described of my parents sound like it could be pots?? or dysautonomia or some sort??

I think that it does.. my mom thinks that she has POTS..but like I said they cant afford treatment or testing.. I have given my parents information on non medical treatments for dysautonomia..they have increased there salt of fluid intake..

but I am wondering if any of you have an other suggestion..

thanks a bunch..

[Aprilmarie52]

My grandmother has POTs as well as I do. She was not diagnosed until after I was, but I never regret being born. I truly believe that everyone is put on this earth for a reason. I was not a planned pregnancy, but my mother decided to have me anyway. I have a 6 month old daughter and she is happy and healthy. I also plan on having at least one more child in the future. I understand where you are coming from and I respect you for speaking your mind, but disagree whole heartedly. I am very sorry for what you and your daughter are going through right now. I hope that both you and her can find some support on this board.

[OCsunshine]

Hello,

I am new to this discussion site (this is my first post, please excuse me if I make any technical errors), and this particular post caught my eye.

The situation you are in sounds so painful and sad, I'm sorry your daughter is feeling angry at you and dealing with such a hard time in her life. When dealing with this illness it is common to feel angry and bitter, and it's often hard to find a place to "vent" that anger, or rather a place to "aim" it. Her teen years are without a doubt the most difficult time to be going through this disease.

My perspective is a little different from yours. My mom has OI and has had it her entire life. Even going through grade-school she was known as "Kathy the Fainter" and that was just part of who she was. She didn't get a diagnosis until later on, of course, but she knew her symptoms. Her mother (my grandmother) also had low blood pressure, although not as severe. My mom's sister also has OI and CFIDS. She has always struggled with blackouts, racing heart, dizziness, nausea, fatigue, and many other symptoms of course. My mom had me, and at 13 years old I became suddenly ill with OI and CFIDS and have an even more severe form than my mom and aunt. So, as you can see, the disease seems to be worsening through the generations.

I don't blame my mom one bit for wanting a child even though her health was quite peculiar and it was probable to pass the problems onto her children. Through the years of being bedridden, back and forth to major medical institutions, put on many treatment plans, and just wading through all of the suffering... I am GLAD to be alive. I feel that this illness, although difficult for me to deal with, has given me so many opportunities I would not have otherwise had. I have met many people- other patients and tons of doctors, I have learned what it's liked to be labeled as "disabled" and therefore learned to have compassion on other people that also struggle. I have learned to trust in my Creator and take things day to day, and always have hope for tomorrow.

If I would have spent my whole life healthy and not surrounded by patients & family members with OI and CFIDS, I am afraid I would be living the life of the ignorant, not knowing about all of these mysterious illnesses and not knowing so many of the people that have conquered them and suffered through them. I would probably feel uncomfortable around people with sicknesses, people in wheelchairs, people with disabilities... but instead I feel connected to them, able to identify with them and treat them like a 'human being' and not be one to just pretend they aren't there.

Even though this life has been hard on me, I feel that I have gotten a lot out of it. I wouldn't change much if I could go back in a time machine. And as I go forward into the future, I want to have children and instill in them the hope that I have.

Sincerely,

Rachel

[joyrose]

For our family, painful illness and suffering was always there but we learned the greatest lessons of our lives in those circumstances.

I was raised in a home where my mom was "sick" all the time. She was either in the hospital for an operation or she had migraines or something that made her hurt, later diagnosed to be fibromyalgia. My sister and brother and I grew up handling the home, comforting Mom and learning to be sensitive to those in pain.

When Mom could, she was organizing a non-profit ministry that could help families who were hurting.

My sister and I both have bodies that are in constant pain and have many of the problems she had but she didn't know when she young and first married. Every family has something. If it is not illness, then there are going to be other trials. There are difficult decisions.

The people we are most drawn to in life are usually the ones who have suffered the most and can use those experiences to comfort those around them. It's a process.

My sister became a social worker before she had her 3 children. The oldest has cystic fibrosis and my sister has spent the last 23 years taking care of her son, but she also takes care of me when she can and we laugh and cry more than any two sisters could.

My brother has 5 healthy children and they often are reaching out to families who have illness.

And me. I became an RN. I'm married to a man (an RN) who knew that I wasn't strong but he chose me. His love and example is priceless. I worked until we had our two sons. The second son was 3 months early and had barely a chance of living. No chance of normal. My health was so bad I had 12 surgeries in his first 10 years. I had pneumonia over and over.

Then I got POTS, autonomic neuropathy, peripheral neuropathy, autonomic dysfunction, recurrent spinal fluid leak, migraines, fibro, head injury, and seizures. My goal is to project graciousness throughout this time.

We taught the boys to value everyone and that "survival of the fittest" only applies to animals, not people.

We homeschooled them (yes, I wore my PJ's) in an attempt to keep our family together, so they could see that illness does not mean worthless.

Now, the oldest son is married and is an RN in a neonatal intensive care unit, taking care of premature babies in the same unit where his brother was for 3 months.

Our younger son, has had a rough time with his health but is now 20 years old and a senior in college.

It's a family with an extraordinary amount of pain and compassion. We cry. Pain hurts. It's been worth having kids. We knew our parents never regretted having us.

-Debi

[lthomas521]

I'm glad that everyone is being so thoughtful and sensitive on this topic. It's an emotional minefield for a lot of people.

I was saddened to read that Patricia's daughter has been making hateful comments to her. I hope that these comments are just an occasional manifestation of irritability, which POTS is notorious for causing. Does she make these remarks at random times, or only when she's being pushed beyond her physical limits? If it's the latter, it may be best to wait until her vital signs are stable and then discuss the matter like adults, to help her find appropriate ways to express her needs.

The daughter's behavior might be a manifestation of depression. But it might be simpler than that. The problem might not be the daughter's anger, but her incorrect belief that it is acceptable for her to verbally abuse her mother. In other words, the daughter might be indulging in bullying behavior, with her mother as a captive target. If you ignore bullying, it is likely to get worse, because it is reinforced by the satisfying sense of dominance the bully experiences as a result. Bullying is a natural behavior among children. They have to be taught that it is immoral and that they are responsible for the moral choices that they make. If the daughter doesn't learn that her feelings aren't a license for her to be nasty to people, she could grow up to be a truly unpleasant adult.

Unfortunately, traits that make one a decent human being also make one a tempting target for bullies. If Patricia didn't care about her daughter's well-being, the hateful remarks would miss their intended target, and the daughter could get little or no satisfaction out of making them.

It sounds as if the daughter has been getting "anger management" counseling. I'm skeptical about the value of that kind of therapy. It seems to be a popular (but spectacularly unsuccessful) approach to dealing with domestic violence. However, the problem in domestic violence is not that the abusers cannot control their anger (they seem to control it just fine in public), but that they feel entitled to abuse their victims. Patricia's daughter may be laboring under a similar misconception. If the girl's counselor is following an "anger management" approach, it may be time to find a new counselor, preferably one who understands bullying-related issues.

If the problem is bullying, the most important thing is to avoid reinforcing it. Don't give the bully the satisfaction of seeing the reaction that she expects. Never allow the bully to achieve her goals through behavior that you find reprehensible. Also, don't counterattack, because that just provides a model of appalling behavior for her to imitate. There are plenty of Web sites on this issue. They can be found under the keyword "bullying."

I almost hope that the problem is just bullying. It's much more easily managed than the alternatives.

[MomtoGiuliana]

lthomas521

Your comments are interesting, valuable and I hope helpful.

My perspective on this (and I am not trained in psychology!) is that it is so very easy for a parent to feel guilt when his/her child is very ill--even when there is not any basis for it. This may or may not be caused by a child's behavior--e.g., expressions of anger. It is also natural for a teenager to express feelings without processing them the way an adult would--even more so when the child does not feel well. I can see how this combination could result in extreme angst on the part of the parent, driving her to question her past decisions.

I also hope they can find resolution in their relationship and improvement in the daughter's severe and disabling symptoms. One can only hope that adversity can at least also be a growth experience.

Katherine