Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Children-pregnancy- any experience? Help!

Discussion in 'General Treatment' started by alexa, Jul 14, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    It was so sad reading about your son. I too spent the first two years of my daughters life basically living at the hospital with her too due to what the MTHFR polymorphism caused.. (sacral agnesis/caudal regression syndrome which she had only happens in 1 in every 25,000 live births). Both of my children had/have severe medical issues which were transmitted or caused by my HIDDEN UNKNOWN TO ME at the time issues.. that was even before I got the ME/CFS.

    What I didnt mention in my other post was about my other daughter.
    My other healthy looking daughter, she caught HPV from me at birth and needed 16-18 surgeries due to it as it got into her throat and caused Laryngeal papillomatosis and would of blocked her airways and killed her if it wasnt for all the surgery... this issue is EXTREMELY RARE . something like 1 in every 250,000 births and can progress to cancer.

    Most peoples bodies would fight that off but obviously my daughters didnt so when a young child from what she caught from me at birth (unknown to us at the time)..she then developed all the growths which had to have high risk surgery to remove (every surgery carried a risk to her voice where the growths were of being permently damaged).. so obviously a sign that there is probably something different about the way her immune system functions.. she developed a MAJOR issue from something which most of us carry, her system couldnt fight it of normally at all. (3-4 years of surgery every few months as her body couldnt fight it.. interestingly we ended up solving the issue via taking her to an accupuncturist and geting accupuncture done)

    She may be TH2 dominant just like I was even BEFORE getting ME/CFS. Something may be faulty in this Th1/Th2 area and hence predisposing some of us to ME/CFS. If HPV is a TH2 dominant illness just like ME is, I believe, due to what my daughter has already experienced as a child with that.. .. I must of already passed the same hidden immune defect or whatever causes the TH2 predominant state be it a virus or otherwise.. down to her, which would predispose her also now to developing ME/CFS. For more on TH1/TH2 and ME read Dr Cheney's take on this @

    So sadly..not just one but BOTH of my kids ended up with SEVERE issues caused by my genetics.. with the one child being unfortuntely also being hit with the Aspergers as well as the rare caudal regresssion syndrome.

    So its hard not for me to believe what Ive heard said by well known ME expert that they often see rare issues in the children of those who have ME. Of cause it is possible to have healthy children too, its really like a game of dice.

    (note Im talking about ME cases and not general CFS cases.. those who arent of the ME subgroup of CFS probably dont have to worry much about transmitting issues to children and polymorphisms etc etc)

    edit. I just noticed that the poster after me mentions she had a "failure to thrive" child.. I didnt mention it but my non Aspie child who had the HPV growth issues due to some unknown immune disorder, was a failure to thrive child too (completely unrelated to the other thing). She had to spend a whole week in hospital while doctors tried to work out why she wouldnt eat but they were unable to work it out. (she was like a 2 year old with annorexia).

    She ended up being put on dangerous meds (i think it was steriods) to force her to have an appetite and she had to be put on a very special diet. At 3 years old.. she only weighed like what an 18mth old usually weighs (she developed the issue at about 16mths old and from there didnt put on weight)... she was basically starving herself.

    Fortunately her eatting issues and whatever reason was behind that, were gone by the time she was 4 (but then a few years later she then developed the other issue needing constant surgery).

    I also didnt meation that I almost lost my other daughter (the Aspergers one) at 6 weeks old.. what they called near miss cot death.. She suddenly heamorraged from nose and stopped breathing and had to be resusitated back with CPR. (I only have the two children.. but both had multiple severe issues). Doctors too couldnt work out what caused that issue at the time.
  2. Shell

    Shell Senior Member

    Like others here I can't say "do this" or "don't do that," but I can answer some of your questions with my own story.

    I became ill during my 4th pregnancy. I was put on co-codamol and told it was safe. My son had some withdrawal after birth, which was upsetting but I was breastfeeding him so it was less severe than it might have been. He recovered within a couple of weeks. My son is healthy but is blind in one eye with iodpathic cataract. He did spend 10 days in hospt when he was 18mths old with viral meningitis but has been fine since.

    I was told there was nothing seriously wrong with me and "It will just go away," so I had no idea how sick I really was. We had another baby.
    She had problems from birth I'm afriad. She needed resus and was back in the Children's at 8 days old. She and I spent the first 3 years of her life in and out of the Children's. She had failure to thrive, repetitive infection and was so ill all the time. I nearly lost her when she was just past age 1.
    She's on a gluten free diet now and growing well. She's only mildly under weight and very healthy otherwise. God forbid she ends up like me.
    I lost two babies after that. One at 12 weeks and the next at 8 weeks.
    Fortunately I chart and saw I had luteul phase defect which is fixable with diet and EPO and so I fixed it and had another baby girl.
    Pregnancy with her was fine until the end when I had to be admitted. She got into serious stress, probably because I had an out of control chest infection. I had an emerency c section and she was fine. She is healthy, happy and growing well.
    I lost another baby at 5 weeks after that.
    I have not ovulated since then.

    I went into remission with the pregnancies with the girls and for the beginning of the pregnancy I lost at 12 weeks. In fact the first clue I had that he had died was the onset of symptoms and I'd stopped throwing up. I stayed in remission until the girls were about 3mths old and then crashed. No idea why.

    I was only dx with FM three years ago (my youngest is 5) and ME last month. I've been ill 10 years, but in the UK getting a proper assessment is difficult. All the docs I saw said it was nothing and would go away, so I didn't really see the pregancies as a problem.

    Would I have had the girls if I'd known? Would I have risked it if I'd also known ME could be contagious? I don't know. I love all my children dearly, and I am glad they are here, so it's hard to say.

    None of my kids have been angry or miserable about my disability. The older three have taken it in their stride and the younger three have never known it different. (My oldest has type 1 diabetes so we have a kind of family black humour about chronic illness)
    You don't have to be able to run around and climb trees to be a good mum.

    However over the last 2 years I've become much worse and it's getting worse as time goes on. If my adult children didn't help out a bit, and if my younger ones weren't so good I wouldn't cope.

    If you have good family support and if you and your husband have a plan for bad times - you will be surprised how well you'll do.
    Hope that answers some questions.
    taniaaust1 and Ocean like this.
  3. CAcfs

    CAcfs Senior Member

    Alexa, I also think you need to be able to "picture" or "imagine" your life as a parent (even though it will probably not be how you envision it, once it happens!) Like for us, I know we will be able to survive financially without me working, so knowing that helps. We are trying to save up and get rid of debt, and make sacrifices now, so we will be able to afford a cleaning person when I need it, or a babysitter for the afternoon, etc. I think those things will make the burden easier. Me not working will help. My mom worked, and she was soooo busy that a lot of corners had to be cut with us (microwave meals, time spent unsupervised and not leaving the yard etc, so of course our childhood wasn't picture-perfect. I don't think anyone has a perfect Mom.

    I know a Mom who has MS and has 5 children who are now adults. She deals with a lot of fatigue, and doesn't work, but she is still a good mom and a good grandmother to all those kids. I think she was healthier when they were younger, but I notice that her illness doesn't affect her family life as much as you would think.....everyone just works around it, and she does what she can.

    Having a disabled child would be very rough, but I don't think it should be a factor in the decision, personally, unless you already have a child that is disabled, so in that case you are already caring for one child who needs extra help. That is an opinion. I don't take the decision lightly, of has been a LOT of thought on my part. It's easy for people to say our genes or sickness should or shouldn't be a factor, until they actually have to make the decision. You'd be surprised how your opinions change when it's your life, and how what you think you would do, is not how you feel when slapped with the decision. I have been pregnant twice, so I know how it feels to not know what your child is going to turn out like, when you are a sick pregnant woman. There is fear but also hope and love. It is a tough decision. Some people should just not have kids, I really can't be the one to tell you though. I still haven't decided for myself if I am 100% sure I want to try for another pregnancy, or if I'd rather not have children. I think it takes a lot of reflection. But honestly, I feel like 90% of the advice I've been given has been bad advice, though people mean well. But when I analyze my life, none of the advice feels right to me, and I have to then look within.
    taniaaust1 and Athene like this.
  4. alexa


    CAcfs: this resonates with me, i spend a lot of time trying to picture what my life would be with a child, and planning financially ( i have a baby fund, but we will se if it will be a travel fund if i leave the baby plans)
    growing up both of my parents were very busy with their carreers and we had live in nannys, al though i wished that my kids would only be raised by me and my husband i realize that i need to plan for an extensive net of support. My mom is willing to basically move in if i had a baby, and i know my husbands parents would help. but my mom is 68 and i worry if i wait many more years i would loose that support. ( the fact that i wont be able to care for my ageing parents as i had planned makes me so sad)

    you say you have been pregnant, but have no children? i fear for this as well, the strain it takes on the relationship and the pain,

    i have been thinking lately if it is only my genes that is the problem ( then could i use a donor egg? ) or the problem of a bad enviroment inutero ( so i could use a surrogacy with my egg) but of course we have no answers for that...
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    That is certainly a big factor for a decision for having a baby as it rules out so many issues if you had extra help there available in case you ME/CFS declined after giving birth etc . Its really not usually a big issue of having a disabled child IF that did unfortunately happen, if you could still love and and have them cared for regardless.

    Weigh up all the postives with the negatives and then just do whatever feels right FOR YOU.

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