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MS (multiple sclerosis) and pregnancy

(17 Posts)
comeagainforbigfudge Tue 09-Dec-14 09:45:35

Morning all

I'm hoping someone out there in the wonderful world of mums net has some good advice for me.

I'm 13 weeks with my 1st child. I was diagnosed with MS fairly recently and don't really know anyone else of a similar age/situation as me.

My question is to do with breastfeeding.

Essentially my MS Nurse explained that quite often ladies have a relapse about 3 months after birth. So they advise new mums not to breast feed. Rather, they should formula feed and go back on their meds. To get them back in system.

I hadn't really thought too much about this other than "will try to but if needs must will bottle feed". Have family who's dc's had major food intolerances from get go. Needing special formula etc so I'm quite relaxed in that way. (As in I understand that sometimes it just doesn't work out the way the powers that be think it should).

I completely understand what my nurse is saying but I was wondering what other MS mums think? Or anyone actually.

Thanks in advance

LittleBairn Tue 09-Dec-14 10:03:07

If its mostly about BF I would ask in the BF section there are a lot of very experienced posters who might have some suggestions.
My own personal suggestion would be that even a few weeks of BF would be worth it especially the early days for colostrum.

I just wanted to say my sister was diagnosed a few years ago she's doing really well and the early intervention meds they have now a days are giving amazing results.

comeagainforbigfudge Tue 09-Dec-14 10:07:00

Oh thanks little bairn. I'm still finding my way round this site. Not even noticed a be section yet!

Need to pop out just now but will find it later n post.

Thanks again

comeagainforbigfudge Tue 09-Dec-14 10:07:39

*bf! Bloomin auto correct!

ElphabaTheGreen Tue 09-Dec-14 10:12:36

comeagain You need to phone the Breastfeeding Network's medication helpline on 0844 412 4665. Most HCPs know nothing about medications and breastfeeding, so will just take the easiest/least litigious route (for them) which is 'don't breastfeed'. The BfN helpline is run by a pharmacist who is also a breastfeeding supporter. She will be the very best person to help you with your queries. smile

Needtoemigrate Tue 09-Dec-14 10:12:54

Sorry to de rail can I ask what led to diagnosis for each as I m currently being queried regarding it

ElphabaTheGreen Tue 09-Dec-14 10:21:26

Also, WRT relapses and managing a baby in a relapse, it depends on what your symptoms are - fatigue is a given, but visual problems? Limb weakness? Poor gait? None of these are reasons not to breastfeed, as these would all make bottle feeding just as difficult. The obvious answer is lots of support, really, and getting on top of your pacing and energy conservation strategies. It might be worth a chat with an MS OT if your specialist nurse can refer you to one, if she hasn't already done so. Generally co-sleeping is a big help with BFing in the early days, but that probably isn't a good idea with MS-related fatigue, but plenty of women manage to breastfeed without co-sleeping, so it's a case of working around your baby and your condition. Babies have a funny way of adapting quickly to a mum's long-term condition. Needs must. smile

LittleBairn Tue 09-Dec-14 10:26:51

need I'm not the OP but I can tell you about my sister. From her very early 20s she started to have numbness down one arm and disturbed vision, feeling a bit clumsy and forgetful. She used to get a strange rash down her bad arm too.
After being fobbed off for years her new GP sent her for an emergency appointment at the hospital and she was told a few days later she had MS. Her initial reaction was relief she though she had a brain tumour and had started writing her goodbye letters to her kids.
That's not to say its been easy for her its a devastating illness but she's going really good 5 years on.

Needtoemigrate Tue 09-Dec-14 10:43:52

Thank you, I ve got the clumsy and forgetful and foggy brain and my Mri show lots of lesions but no other signs. Feel in limbo

comeagainforbigfudge Tue 09-Dec-14 10:54:20

Arrghh!! Had a lovely long reply telling you my symptoms but stupid Internet just crashed and I lost it!!! Don't have time to type it again just now but I promise to come back later to tell you needtoemigrate

Thanks for the info elphaba will investigate that later on.

Cheers fsmile

ElphabaTheGreen Tue 09-Dec-14 11:11:56

Needtoemigrate I'm sure if your MRI has shown lots of lesions there will be plans for further investigations to find out what they are and what is causing them. MS is just one possible diagnosis of many, and everyone's symptoms can vary considerably. I'm sure the waiting and not knowing is horrible sad I hope you're under the care of a good neurologist. thanks for you during this stressful time.

Needtoemigrate Tue 09-Dec-14 12:42:21

Thank you , I ve just had the test with all the electrode type things and seeing Ms team in week or two

helloelo Tue 09-Dec-14 15:19:42

Hello and congrats on your pregnancy!
First, let me tell you that you are not alone and loads of women with MS have children without anything being more problematic than it already is in itself smile

The very good news is that during the pg, it seems our autoimmune system is on standby so it generally is a great time to do loads.

That's what I'm currently experiencing at 35 weeks: great mood, loads of energy, some of my long lasting symptoms even have regressed (bladder control, yeah!). I am not usually medicated though (I have a non aggressive mild form of MS) so I didn't have to change anything to my routine.

I was warned that I could relapse within 3 months of the birth of my DS but, again as I'm not usually on meds, I've adopted the wait and see attitude and I plan on bf for as long as I can. If symptoms do appear and I need to be admited for corticoids, this is my plan:

*med info related to my type of MS and my evaluation of risks, please check with your neuro for your specific case*

My neuro said bf and Solumedrol (methylprednisolone) is fine if <50mg/day as 1% or less is passed in bmilk. If dose is >50mg/day, to wait 4 hours after the end of the drip to bf.

So for the 5 or so days I'll need much higher doses (around 1g/day usually), I'll use stored bmilk and a specific bottle that reduces nipple confusion, and as soon as my doses are lowered (I'm usually at about 50mg within 10 days) I'll bf again.

I've bought a greensheep co-sleeper and plan on renting a good electrical double breast pump. If I'm exhausted after the main part of the treatment, I'll ask for help with the baby, my friends and family are all aware it might happen. If all fails, well, let's say I would have tried my very best in these not so easy circumstances so I'll give myself a break and go have a pedicure to cheer me up.

I'd recommend you get in touch with a MS patient support group as you're very likely to meet fellow mums who will have loads of tips on how to manage bf, fatigue and potentially reduced coordination. Also, remeber that MS is not a tragic illness, many people live with it with minimal issues, having kids is great smile

comeagainforbigfudge Tue 09-Dec-14 16:31:00

Hello all. Managed to get back on. Hopefully my Internet won't crash again.

So need to emigrate, I consider myself very lucky in that my symptoms were numbness from chest down with pins and needles sensations in extremities. This took several weeks/months to resolve and indeed I'm left with pins n needles at times in my hands.

I would also say that I was lucky in that my go was fantastic and took me at my word. Thought it was a virus, sent me away for a week to see if improved (just incase!). It didn't so he referred me straight to neuro.

I had an mri as well as the electrode test (watch the red dot one).

Mri showed lesions in my brain and several at my neck.

thankfully I've not had any bladder/incontinence issues and I'm still working full time albeit in a slightly less stressful environment.

I prefer not to over think my diagnosis. It is what it is and a)it's not cancer and b) I could get hit by a bus tomorrow, game over!

I have a habit of underselling my health issues but it's my survival technique!

Helloelo thank for your time and wonderful advice. I sadly have/had to take copaxone injections. Not at the moment obviously. However I dread the thought of going back on them. I have a neuro appoint in Feb so will have my list of questions at the ready!

I will need to add co-sleeping to my list of things to read up on! As well as ms patient support groups. Although at my last ms nurse appoint we did discuss groups but as most were for people who were at later stages (ie older/undiagnosed until too late) we agreed that they weren't the right place for me. I'm practical and forward thinking. Don't want to dwell on what I can't change. Instead want to see how other people adapt etc.does any of that make sense?

Anyways that's enough about me fwink

can anyone point me to the breast feeding section? I can't see it! Thanks xx

ElphabaTheGreen Tue 09-Dec-14 16:58:35

Breastfeeding board. It's called 'Infant Feeding' under 'Feed the World'. You'll probably get pointed towards the BfN medications helpline there as well smile Definitely check with the helpline if you're given anymore 'don't breastfeed' advice. MS specialist nurses and neurologists don't know anything about BFing, mainly, as you have already discovered, women of child-bearing age aren't necessarily their stock-in-trade, and as I said upthread, their first line of advice is going to be 'don't do it' which would be a pity.

Here is the NCT advice on safe co-sleeping. They hire out (or sell if you wish to buy) co-sleeper cots which are absolutely brilliant. Safety of a cot with the convenience of co-sleeping, although I did find with both of mine they needed full co-sleeping (basically sleeping with their faces in my boobs grin) for the first few weeks before they'd accept any kind of cot. If your baby is a furious cluster-feeder, it may be the only way you can get any kind of sleep in the first few weeks. Many newborns do not like being off mummy for quite a while which makes sleep tricky! 'Third trimester' is a handy thing to Google to fore-arm yourself for this rather exhausting stage.

ElphabaTheGreen Tue 09-Dec-14 17:03:11

Beg pardon...Google FOURTH trimester blush Third trimester is already fairly well documented grin

comeagainforbigfudge Tue 09-Dec-14 17:04:47

Thank you elephaba! So helpful.

I'm away to find the infant feeding board and scour it for more useful tips fsmile

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