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to have a baby or not

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panther
panther Community member Posts: 251 Courageous
Hi

I just wondered if there were any people on here that have got cp but are also parents, instead of parents wanting advice regarding their child with cp!!

I've got spastic diplegia cp I can walk but use a wheelchair some of the time. I've also got epilepsy.

My partner and I have decided that we want to try for a baby. Have been to see the gp and have had some of my medication stopped and am waiting to hear if I can carry on taking my dantrolene and my epilepsy medications or not.

Just wondered how other women with cp have got on during pregnancy did you have to stop medications, and how you've coped looking after a baby/child since.

Helen
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Comments

  • Tash026
    Tash026 Community member Posts: 10 Connected
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    I have spastic dipeglia cp, and my husband and I have been married for one year. We have decided not to have children, but there are lots of people with disabilities who do have them. Go with whats right for you. x
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
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    I am a mum of a 2 year old boy/girl twins, one with quad CP, and a 4 year old girl. I had IVF to have my family so not only was having kids an active choice, but a damned long and painful journey! I don't have a physical disability so I can't give advice on the practical problems you will need to overcome. What I can say is if you have love to give a child and you want to both want to be parents then as long as it wouldn't be detrimental to your health I would say GO FOR IT!! Alison Lapper doesn't have arms or legs and she is a great mother (see http://www.bbc.co.uk/ouch/interviews/child_of_our_time_alison_lapper_1037.shtml). You will find ways of overcoming problems, you will find people to help and you will meet the challenges head on - you do this because you will love your child. I know you have real challenges ahead - ones that I don't have to face, but I didn't think I could rise to the challenge of being a mum to 3 kids under the age of 4, one with a physical disability that means that he's not sitting unaided, crawling or walking. It's not easy, but I AM managing. Kids are accepting of the way things are and you will work together to make it work for you all.

    You have to make the right decision for you but I can only tell you that having kids was the BEST thing I ever did and they give me and my hubby such joy. I wish you lots of love and luck in coming to the right decision for you xxx
  • panther
    panther Community member Posts: 251 Courageous
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    Hi

    Thank you for your reply I will look at the link as well. Yes I know whatever happens it will be full of challenges but I guess there is just as many even if you become a parent and you don't have a disability.

    I think our decision has already been made we've seen the gp and I've come off of 2 of my tablets and in the process of coming off the 3rd (and suffering the side effects!!) but I keep in the back of my mind it is for a good reason.

    Unfortunately I can't come off all my medication as I've been advised to stay on my epilepsy medication, so we've been advised that if I do become pregnant we'd need to wait until the 20 week scan to rule out any problems caused by the tablets.

    So I guess it's now just a case of trying and seeing what happens. Fingers crossed etc lol!!
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
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    Wow - things are moving forward then! It sucks that you have to go through the side effects of coming off medication in order to make this happen - most parents to be don't have to deal with that. I can certainly comiserate - the drugs I took to make falling pregnant possible (and the daily injections into the muscles in my bottom) made me feel horrible. With regard to the epilepsy drugs - you have to take them so you'll just have to go with it and keep your fingers crossed. There are millions of epilepsy sufferers who have done the same and gone on to have successful pregnancies and healthy kids so just be positive and keep believing in miracles.

    Thinking of you at the start of your exciting journey xxxx
  • panther
    panther Community member Posts: 251 Courageous
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    Yes things have moved on in the last 3 weeks since I first put this post in lol! In one sense it's scarey but in another I know it's something my partner and I want to do so I'm sure we will find a way to cope.

    I think part of me is scared because it's the unkown and to be honest it's something I didn't think I would be in a position to try and do.
    I see the neurologist on the 13th August although he has said I need to stay on the epilepsy drugs he also mentioned to my gp if I wanted to come off them it's something he will discuss with us in clinic so we will see what he says.

    Will let you know if this journey actually gets started properly!! xxx
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
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    Wishing you tonnes of luck - parenthood is quite daunting, whatever your circumstances, but so so worth it! Good luck with the Neuro - he'll be able to talk through the pros and cons of the epilepsy drugs and then you can make a really informed choice.

    I've been at a Conductive Education holiday session with Tom this morning - a really exhausting 3 1/2 hour session for him but he worked SO hard. He's just starting to gain some sitting balance and now we are working on improving his core strength, his active sitting and trying hard to help him learn to crawl. He finds it really hard to weight bear on his arms so spends quite a lot of time face-planting the floor. Bless him.

    Keep me posted with any exciting news - and enjoy trying! xxx
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
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    Hi hon,

    Yes, cushions and mats are all over the house and if he's sitting still with his hands on his knees he can sit for ages, but as soon as he moves his hand or something on the tv makes him jump he's over! His twin knocks him over frequently too - sometimes accidentally and sometimes not! How does your CP affect you? Have you got any words of wisdom for us?!

    It is nice for me to have someone to talk to too - anytime I can help with anything just let me know.

    Hugs

    Maria x
  • panther
    panther Community member Posts: 251 Courageous
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    Thanks I will do it will be good to have someone to talk to.
    You talking about your son sitting reminds me of something my mum and dad say they had to do to help me learn to sit.

    Apparently they used to prop me up against the back of the sofa surrounded by cushions in case I tobbled over every day. I screamed the whole time according to them!! But it worked in the end

    Take care thank you for all your advice hope to talk some more soon xx
  • Katherine Hayward
    Katherine Hayward Community member Posts: 74 Listener
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    Hi I have quad cerebral palsy,hydrocephalus with a VP shunt, and am registered blind. I use an electric wheelchair and need help with everything. I have been with my partner for six years four months now and we are considering having a family. In my case , my birth was particularly traumatic because my mum did not know she was going to be having twins and my sister was born and then died nine days later. We were both born at 29 weeks, and the standard and quality of the care she, me and my sister received was not good. . I have also heard and read a lot of stories about disabled people having kids and I think that is what has inspired me. I've already talked to my neurologist, who thinks that with the right care and attention during all the stages of the pregnancy I should be okay but because of my shunt she advised me me that a Caesarian will be best for me. Of course I will have to take all the precautions regarding medication, but it is a real wish of mine to have children one day.

    Katherine
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Maria

    I have spastic diplegia cp that affects my both of my legs and my balance. As I've got older I've started to use a manual wheelchair with battery powered wheels when I go out, as I started to get a lot of fatigue.

    I don't remember much of very young childhood I remeber lots of physio both locally and at great ormand street hospital. I have got an older sister and I guess that made me push myself more because I wanted to do all that she was doing!!

    I think from my parents point of view everything just took alot of fight and determination on their part both on the medical side of things and with education when I started school. I suppose also alot of patience from them as well due to the amount of physio they were doing twice a day. My advice would be try and make any physio or things like that fun. I know as I got to about 4 or 5 I didn't like physio, maybe if I felt it had been more fun I might not of been such a nightmare while they were doing it!!

    I will think see if I can remember anything else that might be useful, though I think now there is alot more support and different things that can help than what there used to be. It's as you get older it gets harder to get the support and treatment.
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Katherine

    Your post was interesting one of the problems I have is although I see a neurologist I see him for my epilepsy and not for my cp.

    I haven't been under any medical person other than my gp since the age of 16. Although the gp asked the neurologist for advice on one of the tablets I take for my cp the neurologist ignored that part of his fax and only took notice of the part about my epilepsy. Even though I've spoken to his secretary every day for 2 weeks and my doctors surgery have tried to talk to him twice.

    I spoke to a different gp last week who advised I come off this particulary medication so I'm now off 3 different medications and am just taking the ones for my epilepsy.

    All my gp has advised is that the first 2 scans are going to be the most important for me because of the medication and because of the meds I may end up having to consider a termination if a serious problem is found in these early scans.

    Because at present I'm not getting much advice I decided to start this topic and see what others said.

    Helen
  • Katherine Hayward
    Katherine Hayward Community member Posts: 74 Listener
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    Hi Helen, thanks for your post. I've not talked to many people in a lot of detail about pregnancy-related issues yet, but when i do, I want to be sure I've got the right background info to make good decisions for me. What I've been advised on several occasions though is to take folic acid ( there's loads of info about it on the web) as hydrocephalus is a neural tube defect. It can help against the prevention of CP and other disabilities, but in my case, there were a lot of risk factors. I find NetDoctor is a great site for all things medical.
    I've been assured that there's no need for me to worry that the baby may have disabilities as my case was coincidence (ie my disabilities are not genetic) but there may be some chance I have twins, as there are twins in my family (my gran is a twin), I'm going to take all the precautions I can in any case. I'd also advise find out as much as possible about if there's disability in your family, twins etc so you can tell the Dr. Maybe you could go to another neurologist. Or a gynecologist?
    Katherine
  • redchicken43
    redchicken43 Community member Posts: 48 Pioneering
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    Im not a women so can't comment on coming off any kind of medication, but I do have CP with 2 healthy children. They are the best things in the world and would recommed being a parent to anybody who believes that they are physically fit to have them.

    Nobody knows what to do when you first have a baby, abled bodied or not, so everybody is in the same boat.

    Just go for it!!
  • redchicken43
    redchicken43 Community member Posts: 48 Pioneering
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    Hi Panther'

    I think that I am lucky in that my CP is mild and I try to not let it effect me too much, but I know that it probably will as I get older as the mechanics of how I move are very different to everybody elses, but for the moment its not too bad.

    Getting back to the issue of children its also not effected me greatly other than when they were smaller I was a little bit reluctant to carry them about, but its no show stopper.

    The kids have been great and understand that Dad walks differently to everybody else and their friends have been good as I was concerned that they would be picked on at school.

    Either way you will find that you have to adapt and you do the best that you can.

    I have always been a believer in that ones biggest weakness can also be their greatest strength.

    Nobody knows whats around the corner and the long-term effects of CP are unknown to me so I will probably face challenges in the years to come. But today at this moment in time, things are okay.

    My kids are 10 & 6.

    Hope this helps.
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Katherine

    The gp has already started me on folic acid so have got that one covered. Unfortunately I've been advised there aren't any really good neurologists in my area.

    Also the gp doesn't feel I need to see anyone medically for my cp as he feels everything that could be done has already been done in the past. Although the neurologist I see does try to interfer with my cp medication as he doesn't like the tablets I've been taking for the spasms in my legs and the tight muscles. He's also hopeless at getting back to you with any information we have been trying to get answers from him regarding my medication for over 2 weeks now. Normally he likes to complain about my cp medication but when the gp faxed him for advice he only answered the part about my epilepsy medication!!

    On the advice of another gp I have now come off all my cp medication I'm on my 2nd day of having no cp meds so have got to see how things go. This time of year isn't normally too bad, but the damp and cold are harder but hopefully it will be worth going through if I do become pregnant.

    Helen
  • Katherine Hayward
    Katherine Hayward Community member Posts: 74 Listener
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    Hi Helen, yes I agree the weather this time of year helps. I'm not sure what the dr will say re my meds as my spasms affect my whole body, but we will see. I really suffer in the winter re colds, aches and pains plus spasms. I have seizures all year round which havent been investigated yet. There's no one except me in my family who is disabled and a parent so there's no one there to ask about anything related to this. I've had ultrasounds which show everything's ok internally: this was checked due to my really irregular, heavy painful period cycle. Yes it's all ok , but some people seem surprised when we tell of our plan to have a baby. At least I know from what you're saying I'm on the right track re advice from drs. I wish you good luck.
    Katherine
  • panther
    panther Community member Posts: 251 Courageous
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    Hi redchicken

    Did you find you had to find different ways to do things with your children because of your cp? If you did what sort of things did you do?

    I don't know many people with cp and I don't know anyone with cp that has children I know things are strange to everyone with a first child. I'm just looking to get some ideas and solutions to some of the extra challenges I might face being a parent with cp.

    If you can throw any light on some of the possible issues and solutions I would be grateful
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Katherine

    Other than anyone on here that reads this post we have only told 2 close female friends, and the gp. As the gp contacted the neurologist he now knows we are trying to concieve.

    We have decided not to say anything to anyone else until I become pregnant. And if we are able to as long as I don't show too much we don't want to say anything until the 20 week scan has been done. Because the gp told us that scan will be the most important to us and we may have to after that make a decision on whether to terminate depending on if the scan shows any major problems because of my epilepsy medication.

    Good luck when you also start trying!!
    Helen
  • SpecialEdition
    SpecialEdition Community member Posts: 1 Listener
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    Hi Helen,

    I read your threat 'to have a baby or not' and I wanted to get in touch with you regarding a documentary I am developing.

    I am a producer at a television company called Special Edition Films and we specialise in access based documentaries for the BBC, ITV, Channel 4 and Channel 5. We have produced a number of sensitive medical based documentaries on subjects including heart transplantation, cystic fibrosis and treacher-collins syndrome.

    We are currently developing a new documentary for BBC3 about 'Disability, Pregnancy and Parenthood'. The documentary will highlight how pregnancy and parenthood are affected by disability and the trials and challenges that disabled parents face.

    We are currently looking to speak to people who are interested in talking to us about our documentary and who potentially might be interested in taking part. It is an opportunity to tell their story in their own words and help highlight an issues that needs addressing.

    We would like to speak to pregnant women and new mums who are affected by disability.

    if you are interested in talking to me please call me on 0208 960 1446 or email me on miles@specialeditionfilms.com.

    I look forward to hearing you.

    Best,

    Miles Blayden-Ryall
    Special Edition Films
  • panther
    panther Community member Posts: 251 Courageous
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    Hi All

    Jus a quick update on this post as many of you were interested, unfortunately we have had to make the decision to stop trying for a baby.

    We found when I was off all the medication for my cp major fatigue kicked in I was expecting pain but got fatigue instead and also I kept falling alot I was having up to 4 or 5 falls a day and was getting covered in bruises!!

    We talked about it at length and said the way things were going I could end up miscarrying if I was pregnant and how would I/we cope if that happened, because no doubt I would blame myself if it was to happen could I live with that.

    We knew there were things we could put in place to stop my falls like using my wheelchair more. But there was nothing we could put in place to stop my seizures.
    As I do things in my seizures that I have no knowledge of doing we said how would I know I hadn't put the babyat risk during a seizure and again how guilty would I feel if something was to happen.

    Recently I had a seizure were I walked out the front door, leaving it wide open in the early hours in the morning and started walking down the path in my nightdress. Again after that we decided there was nothing we could do to prevent me possibly doing that again when my partner wasn't at home and what if I did that leaving the baby in the house and again something happend. Could we cope with the possibilty that social services could end up involved and possibly take the baby into care.

    It was a hard decision to make but in the end we decided there were too many areas where I was either putting myself or a child at risk. Also my partner didn't like to see how I was off my medication because he knew there was nothing he could do to help prevent the overwelming fatigue and the number of falls. He said while he was at work he was constantly worried about how many falls I may be having and if I had ended up with any injuries well he wasn't there.

    Hope this post helps anyone who is considering trying for a baby to possibly see what a major affect coming off any medication you may be on could have. The affects for me certainly weren't what I was expecting. I lasted about a 2 months off medication then felt I had no choice but to go back on it as I really wasn't happy with the situation.

    It's been hard but I guess for us in the long run we've made the right decision. Good luck for anyone out there that is trying!

    Helen
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