taniaaust1
Senior Member
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- 13,054
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- Sth Australia
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.
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 @ http://www.anapsid.org/cnd/diagnosis/cheneyis.html
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.