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Help... nort sure what to do... :-(

Had my amazing little boy on 3rd Feb and after coming home, found out when he was 13 days old he has a rare and major heart defect. At 16 days old he had open heart surgery. Thankfully hes recovered well and 2 weeks later we are home! We have 2 more operations to have in the next 2 years though!

Its all been a lot to deal with having a baby plus everything with his heart… Obviously its been a lot of stress. I had steroids 7 weeks ago, which improved but didnt eliminate my symptoms… but NOW… theyve suddenly gotten worse than ever! Im not in full and proper contact with my neurologist yet, but i have called his secretary to try and push the matter.

My dilema is… what do i DO in the meantime?? Do I just see my GP? I dont think she will be able to do anything… are there any medicines other than steroids that can reduce the feelinga of numbness or ease spasticity or the bad balance! Ive done so well with everything up till now, but its really starting to get me down that I can no longer do so much, I cant even drive my car properly and safely! :frowning:

Hello,

First, congratulations on the birth of your little boy! (Same birthday as my sister). I’m so sorry you have learnt he has a major health issue, but glad the initial treatment has been successful, and he’s recovering well.

I haven’t had a pregnancy, with or without MS, but I gather it’s quite common for the MS to calm down during the pregnancy, but flare up soon after the birth. Of course, the stress won’t be helping, but the worsening of symptoms may be primarily due to natural, post-natal changes to your immune system - not to the stress itself.

I think you’re right that the main treatment would be steroids, but that doesn’t mean there’s nothing your doctor can do for the symptoms in the meantime. There are definitely drugs for symptomatic relief of spasticity (baclofen’s the first line one), and possibly for some of the other stuff too, although I don’t think there’s anything for numbness.

Certainly worth a chat to the doc, I would have thought.

Tina

Thanks Anitra… maybe i’ll try get to see doc soon… unfortunately my symptoms began in pregnancy and I was diagnosed shortly before giving birth. But yeah, was definitely prepared that there mmight be some kind of relapse after birth… just wish the rest of them had gone before this one started… I feel like the symptoms are just ‘stacking’ as opposed to coming and going! I cant wait to see my neurologist properly and see what will happen!

congratulations firstly, and so sorry your baby has heart problems, what a shock it must have been,for you.

Its quite common to have a relaspe after giving birth, i had a big one when my daughter was born,when she was 6 weeks old, and with al the added stress you have been having its not suprising,you must rest when you can, and get as much help as you can,for the next few months,and you should start to recover after a few weeks,it took me 4 months,but after, i did recover i didnt have another relapse for 8 years.

jaki xx

Thanks Jaki… there is hope this could go away… easy to feel like your stuck like this forever!!