Children-pregnancy- any experience? Help!

[Tito]

I found this study http://www.wicfs-me.org/Pdf Files/IACFS 07 II Brain Genes Final.pdf
It's on page 6
I'm afraid it's not very encouraging news, but it gives the name of researchers in case anyone would want want to contact them.

 

[KathySkes]

I didn't vaccinate my kids either, I did not want to mess around with their immune systems. They are very healthy and rarely get sick. I personally believe vaccines may have played a role in my own illness. Again, though, to vaccinate or not is a personal decision. Do your own research and come to your own conclusions.

 

[Ocean]

I found this study http://www.wicfs-me.org/Pdf Files/IACFS 07 II Brain Genes Final.pdf
It's on page 6
I'm afraid it's not very encouraging news, but it gives the name of researchers in case anyone would want want to contact them.

I very strongly believe there's a genetic component and I'm not surprised at what was written there at all. I know my mother is ill as am I and I've had other health problems since youth that I believe are related as well. I've also heard that same idea about this being passed on from the mother but I'm not sure it's true that men can't also pass it on. I think there are some men on here who have kids who are also sick, if I remember correctly.

ETA:
I also found the mention of amyloidosis in that paper very interesting, since I had a close relative who had that. I found this when I looked up the connection between amyloidosis and CFS.
http://www.ncf-net.org/forum/amyloids.htm
Can't say I understand it really though. There was also an older thread on PR about it.
http://forums.phoenixrising.me/index.php?threads/differential-diagnosis-amyloidosis.10137/
I feel very certain that at least in my case there is a strong genetic component in my health probems.

 

[taniaaust1]

I have been sick for 3 years and i have always wanted children.

I don't know how to formulate this question... does anyone out there have kids? did you have them before or after you got sick? are the kids sick? or have autism or aspergergs?

If you are seeking advice or suggestions.. Id say wait. I say that as 3 years.. isnt long to have this illness and you could still find yourself get a remission. I also think it takes more then 3 years to come to terms with all the issues this illness has caused. It may not be long enough either to know if your ME/CS is going to stay stable.

There is a lot of people at this site including myself who also have Aspergers or have kids with autism or Aspergers. I personally think there may be some kind of genetic link between ME/CFS and the autism spectrum which makes some families susceptable to both things. The ME/CFS runs from my fathers side of my family my sister, me, and 2? of my dads nieces), same with the Aspergers (my father, me, my child).

I got ME/CFS when my kids were young.. my eldest daughter was only 9-10 when I got sick. After a year.. I crashed big time and became bedbound. My 10 year had to became my carer (look after the house.. and take on care of her little sister).

My youngest daughter (7? years old and who also had a serious physical disability due to birth defects).. took my lack of being able to care for her very badly and our relationship was destroyed over it as she thought me not being able to look after her (my body hurt to much for us even to be able to hug).. she thought it all meant I didnt love her. She was too young to understand. She's adult now and wont even talk to me... our relationship was never able to recover as I was very sick for most of the time she was growing up.

So if you are going to go ahead with a pregnancy.. you need to make sure if you ever break up with the partner you are with now and get sicker.. that the other will be able to step in and take over all the care of the children. Otherwise you could find yourself and any children could find themselves in a very very bad situation with young child having to care for you.

Also with ME/CFS .. one study was done in which showed we had HEAPS of polymorphisms (genetic faults or whatever one wants to call them) compared to people without this illness. My daughter was born disabled (similar issue to spina bifida) as I have a MTHFR polymorphism.. (this like this affect the methylation cycle and most with ME/CFS seem to have issues in the methylation cycle). A well known ME/CFS specialist once said that he's seen many very rare birth defects in children of his ME/CFS patients (eg babies born missing some of their brain and other stuff). So defects may be far more common then in the normal population.

All things to consider when deciding to go ahead and have children or not, possible increased risks are there. Also there is the risk of having to do more.. worsening your ME/CFS. So make sure you can cope with doing a lot more and how this is going to effect you before getting pregnant,( are you capable of doing more long term without getting sicker?) .

The statistic (coming from a well known ME specialist) is that a mother with ME/CFS has a 25% chance of having a child who will end up getting ME/CFS themselves.

If you do decide to get pregnant.. make sure you get checked first for MTHFR polymorphism as it causes an increased risk of miscarriage (its an extremely common cause of miscarriages) and actually is present in 9-17% of the normal population and I suspect rates may be far higher in those who have ME/CFS.
(IF you do have it and know you have it.. .. miscarriages may be preventable with taking baby asprin.. and serious disablities like my child has can be preventable with certain extra supplements during pregnancy). It would be something horrid to have and not know as possible issues with it a baby can be avoided with the right treatment if you know.

 

[LilacGardenia]

I'm following up with my previous post.

I wasn't aware you're outside the USA and that you can't adopt/foster. Sorry about that.
Could you become a godmother to a close friend or family member's child? Another idea would be volunteering. I know at my local hospital, people play music, do magic tricks, read books, coordinate art projects etc. for kids. I know it isn't the same as having a child to call your own, but you could still spend time with kids when you are able and not risk compromising your health. The kids would really appreciate it too--some of them spend MONTHS in the hospital. We have this guy that dresses up in goofy costumes and plays a guitar for the kids and the adult patients. It sounds like a small act of kindness, but after being away from the "world" cooped up in a hospital, undergoing all sorts of painful treatments and feeling horrible, it means a lot to them.

God bless you and all the best! <3

 

[CAcfs]

I would say DON'T make the decision to NOT have kids based on fear. I am sick, have done quite a bit of diff treatments over the years, (antibiotics, vitamins, ldn as you mentioned, etc)...doing a little better but it's not like I'm "cured" and I don't know if I ever will be. Haven't had kids yet, but will be trying soon. I have decided to not let FEAR control the decision, if there are no concrete facts.

There will always be studies that can point to this or that, but you have to take the study as one study, and not draw absolute *conclusions* beyond the associations/correlations made in the study (studies can point to correlations but they don't always PROVE things, and they may later be upheld or disproven with further scientific study...basically "correlation doesn't equal causation"....you can proven things are correlated but not that one causes the other), and again, my suggestion is to not let FEAR nudge you in one direction or the other. I have realized that the worst thing I could do is look back and realize I made a decision based on fear and not on reality. In other words, decide based on what you know, not what you fear.

The first response you got, seems to elicit a feeling of guilt (not pointing fingers at the poster though, and not saying that is what they intended, just using it as an example of the emotions that come from reading a post like that, then those emotions dominate the conversation, as opposed to facts and "knowns.") And I have decided not to let fear-of-future-guilt dominate too much of my decision, but then again, I tend to dwell on guilt, so I have to moderate it. If you don't feel guilt easily, maybe listen to it, but for me, it is not an accurate gauge of what I should do or not do. In general, I am avoiding guilt in the same way as fear, but that is a personal decision. I just don't see them as good driving forces for major life decisions, at least I have noticed that for my life. I don't do/not do things because I feel guilty, and I don't do or not do things because of fear, at least not if that is the ONLY reason.

So I wish you the best of luck. From what I gather, some infections can be passed mother-to-child, while some can't. There is an acronym TORCH which kind of sums it all up: http://en.wikipedia.org/wiki/TORCH_complex

Basically, I have decided all this on my own, so not sure how it's gonna go (no doctor instructed me to do all this specifically): get tested for mycoplasma, herpes viruses (including cytomegalovirus), lyme and babesia and bartonella, and possibly a few other infections, now, since I want to conceive soon. I have tested positive for many of those in the past, but have done a lot of treatment. Then I will treat based on the results before pregnancy. If I can't get things to then go negative, I'll consider treatment with something low-dose during pregnancy, if it's pregnancy safe, but I am kind of also considering not worrying about it. I already know my babesia is positive a lot, but transmission during pregnancy has only been documented a few times, vs many cases that have probably existed, and the drugs are so harsh, that I am not worrying about it.

Then I'll get my folate tested, and my D3, my B12, etc etc and make sure those levels are good. So far they are. I had a bad reaction to a DPT vaccine, so I am considering not vaccinating my kids, and I won't get any more, for sure.

Do you happen to know if LDN is safe during pregnancy? I have considered going back on it, at least before preg, but I dunno how I feel about it.

Also look into sleep disordered breathing.....it can lead to a lot of fatigue, and apneas only get worse during pregnancy as you gain weight. I am currently on CPAP, but I think I"m gonna try to switch to a dental device as treatment for apnea before preg, because I can't stand the cpap.

I am noticing what foods bother me, and cutting them out. Really cleaning up my diet. I am trying to exercise as much as possible, and will continue to do so while pregnant. Exercise is great, in my mind.

Anyways...hope that helps. Good luck!

 

[CAcfs]

ps---living in sweden, i wouldn't worry about lyme, babesia, bartonella

 

[Tito]

I think beyond the issue of having a child medically healthy there is also the issue of having a child who will enjoy his/her childhood. If a patient has severe ME, is that really reasonable to impose on him/her such a debilitating condition? I think we completely overlook the psychosocial aspect of that. For example, many people would disagree with a 70-year old having a baby, is the situation of a 30-year old moderate sufferer really different (let alone a severe sufferer)?
I guess it all depends on the severety of the illness. I've noticed that mild sufferers have no idea what it is to have severe ME and I don't blame them, this illness is so surreal...

 

[Tito]

ps---living in sweden, i wouldn't worry about lyme, babesia, bartonella

Well, studies showed that among IV drug users, bartonella was present in 39% of patients in Sweden against 12.5% in Los angeles. Sweden might look like a postcard country but bugs are there too. Lyme is also very prevalent in Sweden.

 

[justy]

I think beyond the issue of having a child medically healthy there is also the issue of having a child who will enjoy his/her childhood. If a patient has severe ME, is that really reasonable to impose on him/her such a debilitating condition? I think we completely overlook the psychosocial aspect of that. For example, many people would disagree with a 70-year old having a baby, is the situation of a 30-year old moderate sufferer really different (let alone a severe sufferer)?
I guess it all depends on the severety of the illness. I've noticed that mild sufferers have no idea what it is to have severe ME and I don't blame them, this illness is so surreal...

Alexa has stated quite clearly that she functions well enough to work. I don't imagine anyone who was severely affected with M.E would be able to seriously consider having a child.

 

[Tito]

I was not talking about Alexa specifically. I stated quite clearly I was refering to patients with severe conditions.
The reality is that ME is not a static condition. All ME people who are severely ill today were mildly ill before. As said by another poster, the severe deterioration of her condition led to a very difficult situation with her daughter. I think the emotional wellbeing of a child is a valid point to consider, don't you think?

 

[Athene]

Hi,

I haven't read all the other posts but I'm going to tell you my story.

I have a son of 6 who was conceived when I was in remisison. As soon as I weas pregnant and came out of remission and fell into horrendous relapse! I spent nine months feeling at death's door, vomiting on everyone I knew up to 20 times a day, passing out (fell down stairs once), having heart arrhythmia that I cold not control with drugs as they were dangerous for the baby (needed heart surgery after baby was born), having migraines that I just had to put up with as I could not take any painkillers, etc.

Baby was born and turned out to be autistic. He developed food allergies one after another and eventually reached the point where he was allergic to all food and was spoending his life in and out of hospital, in 3 countries, while they tried to firgure out what to do. He was fed nutrients intreavenously for a while, then progressed onto a synthetic liquid feed. He was clearly in constant pain and never slept more than 20 minutes in a stretch, to a total of 3 hours in a 24 hour period - that was for the first 3.5 years of his life. I spent those years sleeping in a deckchair beside his hospital bed half the time.
Having my heart surgery felt like a wonderful refreshing holiday in a health spa, as I got to spend 3 whole days and nights in bed thinking about nobody but me. When you're a mother, that is a rare treat. When you're the mother of an ill child, that is unimaginable!

Many women with CFS actually feel better when pregnant, according to Richvank. But the rest live those nine months like I did. So you're just taking a gamble, and you have to be psychologically and practically prepared for the worst case scenario. If you just assume it will al be fine, how will you handle it if the proverbial hits the fan? Either way, once the baby is born, there ain't nobody in the world who has an easy time!!!

If you want to know what it is like being a mother of a newborn, set your alarm clock to go off every three hours day and night, and every time it does, go downstairs and prepare a cup of hot milk and then sit up in bed in an uncomfortable position for 20 minutes. Then you can go back to sleep till next time you have to get up! (to be more realistic, actually you should push a pram to and fro around the bedroom singing a lullaby for half a hour THEN go to sleep, but I don't want to put you off too much...)

My life turned around when I discovered I have lyme disease and so does my son. He has been on antibiotics for the last 2 years and is no longer autistic, he has chronic lyme and CFS. He got a great school report, he is doing really well. I wish he could play sports a bit but at least he is not in a wheelchair like some kids with lyme. I am also a lot better after 18 months of antibiotics.

Apart from Lyme, there are many pathogens that cross over the placenta and are also found in breast milk. If you read up online you will find out, and you should get tested for the whole lot. Most definitely include a lyme western blot in your tests - according to research in the USA, Canada and Scotland, 90 percent of autistic kids have congenital lyme disease.

What I have said is not meant to tell you you should not have a child. My son is my whole life now and I would not change it if I could go back in time. There have been times when life seemed so bad I may have given up without him to make it worthwhile. So if you want a baby, have one. Don't let anyone stop you from doing what you want.

 

[Ocean]

I would say DON'T make the decision to NOT have kids based on fear. I am sick, have done quite a bit of diff treatments over the years, (antibiotics, vitamins, ldn as you mentioned, etc)...doing a little better but it's not like I'm "cured" and I don't know if I ever will be. Haven't had kids yet, but will be trying soon. I have decided to not let FEAR control the decision, if there are no concrete facts.

There will always be studies that can point to this or that, but you have to take the study as one study, and not draw absolute *conclusions* beyond the associations/correlations made in the study (studies can point to correlations but they don't always PROVE things, and they may later be upheld or disproven with further scientific study...basically "correlation doesn't equal causation"....you can proven things are correlated but not that one causes the other), and again, my suggestion is to not let FEAR nudge you in one direction or the other. I have realized that the worst thing I could do is look back and realize I made a decision based on fear and not on reality. In other words, decide based on what you know, not what you fear.

The first response you got, seems to elicit a feeling of guilt (not pointing fingers at the poster though, and not saying that is what they intended, just using it as an example of the emotions that come from reading a post like that, then those emotions dominate the conversation, as opposed to facts and "knowns.") And I have decided not to let fear-of-future-guilt dominate too much of my decision, but then again, I tend to dwell on guilt, so I have to moderate it. If you don't feel guilt easily, maybe listen to it, but for me, it is not an accurate gauge of what I should do or not do. In general, I am avoiding guilt in the same way as fear, but that is a personal decision. I just don't see them as good driving forces for major life decisions, at least I have noticed that for my life. I don't do/not do things because I feel guilty, and I don't do or not do things because of fear, at least not if that is the ONLY reason.

So I wish you the best of luck. From what I gather, some infections can be passed mother-to-child, while some can't. There is an acronym TORCH which kind of sums it all up: http://en.wikipedia.org/wiki/TORCH_complex

Basically, I have decided all this on my own, so not sure how it's gonna go (no doctor instructed me to do all this specifically): get tested for mycoplasma, herpes viruses (including cytomegalovirus), lyme and babesia and bartonella, and possibly a few other infections, now, since I want to conceive soon. I have tested positive for many of those in the past, but have done a lot of treatment. Then I will treat based on the results before pregnancy. If I can't get things to then go negative, I'll consider treatment with something low-dose during pregnancy, if it's pregnancy safe, but I am kind of also considering not worrying about it. I already know my babesia is positive a lot, but transmission during pregnancy has only been documented a few times, vs many cases that have probably existed, and the drugs are so harsh, that I am not worrying about it.

Then I'll get my folate tested, and my D3, my B12, etc etc and make sure those levels are good. So far they are. I had a bad reaction to a DPT vaccine, so I am considering not vaccinating my kids, and I won't get any more, for sure.

Do you happen to know if LDN is safe during pregnancy? I have considered going back on it, at least before preg, but I dunno how I feel about it.

Also look into sleep disordered breathing.....it can lead to a lot of fatigue, and apneas only get worse during pregnancy as you gain weight. I am currently on CPAP, but I think I"m gonna try to switch to a dental device as treatment for apnea before preg, because I can't stand the cpap.

I am noticing what foods bother me, and cutting them out. Really cleaning up my diet. I am trying to exercise as much as possible, and will continue to do so while pregnant. Exercise is great, in my mind.

Anyways...hope that helps. Good luck!

I don't think it's just a matter of passing on infections. I believe there are other genetic components, such as immune system issues, etc. This is just my belief, based on my own family history and anecdotal evidence. But I think there's more to all this than just infection.

 

[Ocean]

But what I yet have to see is children telling that they enjoyed having very ill/disabled parents...

But how many children with disabled parents do you know? I'd venture to guess there are many people out there who are just fine with having ill/disabled parents.

Here are just the first few links that came up when I searched:
http://media-dis-n-dat.blogspot.com/2009/01/growing-up-with-disabled-parents-and.html
http://www.independent.co.uk/life-s...or-a-disabled-parent-can-be-a-joy-761595.html
http://mandyf.wordpress.com/2012/05/16/growing-up-with-a-disabled-mother/

 

[CAcfs]

Lyme isn't "very prevalent" in Sweden, as state above by someone. But if you think there is a chance you have it, might as well get tested. If I lived in Sweden, I wouldn't worry about it personally, but no harm in getting tested, like with everything, esp if you think you could have it. Bartonella is a common infection among humans as well as pets, though it can cause symptoms. It was really only a concern for me because I knew I had Lyme and babesia along with it, so now I like to check and be sure it's staying negative, post-treatment. But if it's postiive, you might as well treat for it, of course. I am not sure if Bartonella can pass from mother-to-child. I know Lyme can, so better to be safe than sorry with Lyme. If you have Bart, you should def get it under control before pregnancy, but it isn't as serious as Lyme is. All Lyme doctors will tell you that Lyme is the most serious of those three infections when contemplating a pregnancy, but luckily for the original poster, it's rarer than Bartonella, esp in Scandanavia. Unless someone can show me data otherwise. Really the main concern with Lyme is the U.S., Canada, and perhaps Germany, as far as I know. And according to my very experienced LLMD, Lyme is the one you really want to worry about with pregnancy. Though of course you should treat them all pre-baby. Duh.

I was using my infections as an example of taking care of things you know you have, before pregnancy. Genetics.....can't control that. No sense letting that dominate the decision. I am assuming the original poster is asking the question based on her own self-knowledge of how she would be able to handle the burden of an infant. I am sure she has thought about that, just like I have. No one in their right mind would have a baby unless they thought they could handle it. It isn't something you just do for fun or because you're bored. If she wasn't taking the decision seriously, she wouldn't be on a forum talking about it.

 

[Ocean]

I think everyone has to decide for themselves if issues like genetics will be a big factor in their decision. I don't think just because it can't be changed means it shouldn't be a major factor to consider. For some it may not be an issue or may seem minor, for others it may be a major issue. It's different for everyone, as all our decisions really are.

 

[Tito]

It appears that Lyme is not restricted to some countries. It is a worlwide problem:
http://www.lymebook.com/africa-europe-canada-sweden-england-uk-united-kingdom
And indeed with people travelling, bugs become contaminated and then contaminate local population, etc. and bugs having a short lifespan, they multiply rapidly and they adapt and spread to new areas thanks to climate changes etc. For example, mosquitos and malaria seem to slowly disappear from some areas due to climate changes.

 

[Tito]

But how many children with disabled parents do you know? .

well, my father and his 2 siblings, then my sibling and myself, then my 2 nieces. Did I love my mother? Yes. Did I enjoy my childhood with her? Absolutely not. And for my father, the answers are no and no. But I guess anecdotal statements have very little relevance and nobody in my position will write a blog on this.

I know that my view on this issue is not politically correct and it is very revealing to be picked upon just to express it. But what I found extremely sad is that when a mother comes and tells a less than idealistic story, it is just brushed under the carpet and people consider this as 'just tough luck' when in fact real people (child and parent) with real pain are involved for years and years. We, ME patients, immensely suffer because others see in us 'just tough luck'. We just want (and deserve) to be acknowledged. Cannot we do the same with children of ME parents? It does not mean that their parents were not 'entitled' to have them. It does not mean ME parents are not doing their best. Cannot we give these children what we have been craving for sometimes for decades? Acknowledgment. Acknowledgment that we were robbed of our quality of life, acknowledgment that it is not about a little discomfort, acknowledgement that it affects us every day all day in every single aspect, acknowledgement that we are more than 'just tough luck'? What have we learned from these decades of suffering? Nothing?

 

[alexa]

there are so many unknows in this disease...

I have only been sick 3 years, and part of me realizes that i can wait... but i know that this disease breaks down the body and part of me wants the potential baby to get as much as the "pre ME wombs" as possible...

and even if i get into remission i might get a relapse after the baby is born

I talked to KDM about this and he thought i could have a child ( his daughter with ME has just given birth to her fist) but he was concerned with , autism, ME, and other immunological disorders and developmental delays... like people here have been talking about.

i am well enough to work, but just about, i collapse when i get home and i am in bed by 7:00 and the weekends are for sleeping and resting and planning food etc for the week. if i had a child i would quit my job and only take care of the child but i worry not only about my health and the babys health but also my sanity. i already feel so isolated and sad in my ME bubble of sickness that only taking care of a child and not having any energy for anything else scares me.

but i am taking this decision by fear, i am terrified, of having a sick child, of having a healthy child that resents me, of not having a child and regretting it....

i wish i could be part of other peoples children but my siblings live far away,

and my lovely husband, he has a sick wife..... will he also have to put up with a barren one...

 

[Athene]

Alexa,

Does your husband have any flexibility with working hours? Would you be able to cope financially if he reduced his hours and did a significant portion of the childcare to give you time off?

My husband managed to shift his hours around so he starts work at 7.30 am and gets home at 2.45 most days, there's only one day he works though till 6pm. It is terribly hard on him but we did get through like that, as it meant I could sleep for the afternoon. .

The really tough part lasted the first 4 years. If you have a healthy kid they become easier in less time that that.

What Tito said about having disabled parents is interesting and no doubt applies to a lot of people, but I suspect a lot of it may depend on personality, and how you react to being ill, as much as being ill in itself.
My mother went blind when I was 4 and got CFS when I was seven. She also suffered from such severe asthma that I saw her fall unconscious and get intubated three times.
Heaven knows how she coped, but her life was dedicated to making sure me and my 2 sisters had fun and got her undivided attention when we needed to open up to her. We lived on delicatessen meat and fruit that we picked out of the fridge ourselves, if the house ever got cleaned we did it ourselves, and when my little sister needed milk I prepared that while my older sister did the nappy changing (we were 4 and 6 years old). Yet I remember my childhood as blissfully happy, and carefree too. My mother literally never complained about her illnesses and somehow laid on so much entertainment for us that we were hardly aware of what she was going through.

2 weeks ago I was with my son at a fountain where people had thrown coins to make wishes, and my son asked for a coin. He threw it in and said "I wish my Mummy and I were all better and never have to take medicine ever again".
Yet he tells me at least 3 times a week "Mummy, you are the best mummy in the whole world". So despite noticing I have a lot wrong with me, and that I am nowhere near as brave as my own mother, he still thinks I am doing a good job.