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TOPIC: Dystonia and pregnancy

Dystonia and pregnancy 10 months 1 week ago #4129

I just wanted to share my experience to date of coping with dystonia during pregnancy. I know when I was looking for advice I couldn't really find anything and I would have appreciated this when I was thinking about trying to get pregnant and how dystonia might affect things.

Firstly, I would recommend talking to your neurologist. It is likely that they will be unwilling to provide treatment while you are pregnant, but they can give advice on genetic concerns etc. Although there is some evidence that botox does not have a harmful effect on the feotus, and treatment has been provided in extreme cases of dystonia, it is unlikely that a neurologist will be willing to provide treatment. They will probably advise that you stop treatment several months before trying to conceive.

I would also recommend talking to the dystonia helpline as they were able to give me a bit of information about botox, dystonia and pregnancy. In particular, there is some evidence that changes in hormones are likely to set off your dystonia, which is what has happened to me. I'm currently about 5 months in to my pregnancy and, having been stable, my dystonia has come back in the last month or so. If you are in contact with your neurologist/GP/midwife, they should also be able to refer you for physiotherapy to help you manage.

There isn't much information about giving birth and having dystonia. However, there is information about giving birth and other disabilities. I found the book 'The Disabled Woman's Guide to Pregnancy and Birth' very useful and wish I'd found it when I'd been considering starting a family. It is very reassuring to read about different disabled women's experiences of considering and starting a family. In particular, it's just reassuring to know that there are other people out there who have managed to have a positive pregnancy/birthing experience, despite having some physical restrictions. It would have given me things to consider when I was thinking about starting a family, which would have been very useful, and has given me some very useful pointers for what I should be thinking about for giving birth and having a family.

Another real lifeline I have found is joining an online birth group for my due date. Now that I am not very mobile, it has been invaluable to have a source of support online for all those questions and concerns that all women have, disabled or not. the one I joined was via mumsnet.

With regards to breastfeeding, I have contacted the breastfeeding drugs advice network and also la leche league. They were able to share with me several bits of information that suggest having botox while breastfeeding is safe. La leche league can also provide support and guidance on how to breastfeed when you may find it difficult to stay in a comfortable position.

If there are other sources of support (I might also look into the disabled parents network?) that others would recommend, then I would welcome more sources where I might seek guidance! From feeling very much alone when thinking about whether or not to try and start a family, I am now feeling more positive and able to cope because of the different forms of support I have found. I hope that this post is useful for others in a similar position. Hopefully, I will be able to report back in several months that I have successfully embarked on family life :)
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Dystonia and pregnancy 9 months 1 week ago #4141

One month on from my post and I just wanted to add a quick update. I'm happy to report that 2 weeks ago my dystonia suddenly got a lot better. I have been trying lots of different approaches to relieving the symptoms (stretching, baths with salts, TENs machine on my neck - get a physiotherapist to help you figure out how to use this, particularly if you are pregnant!), but my guess is that it is really down to changing hormones as it suddenly got much better and I am pretty much symptom free again. Perhaps something to do with going into the third trimester and changes nearing birth? Anyway, again, I wanted to share this so that if there are others out there with dystonia considering having a baby, they are aware that if things get worse it may not last for your entire pregnancy.
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