Follow up appointment, what to expect?

[MinkyD]

My 23 year old daughter had Men B 15 weeks ago. This week she has her follow up appointment with the consultant and we were wondering what to expect from this.

She is making a good recovery, but still has trouble walking any distance due to left sided weakness and balance problems; she has a blind spot in her left eye; she has headaches, pains in her head and all the way down her spine as well as several other symptoms.

She went to see the GP 5 weeks after having men B, he didn't offer much advice and basically said wait until you see the consultant.

She is attending a GP referral gym, where she does some light exercise classes and swimming, which is slowly helping to build her strength. But I'm wondering if she needs specialist physio to help with the left side weakness?

Thanks, in advance, for any information and help xx

[StrawberryCream]

Hi MinkyD

Am sorry to hear that your daughter has had Meningitis B. It is a very serious illness and 15 weeks is not long enough for her recovery. Unlike common illnesses like the flu or even things like chicken pox, recovery from meneningitis can take months or for some years. A few people continue to have ongoing/life long problems. G.P's frequently do not have much understanding of meningitis with far too many thinking that you should be fully recovered after just a few weeks! Unfortunately physio once discharged is often non existent as like lots of things in the community is over stretched and in short supply! However, she is doing the right thing to help herself by attending a light exercise class and swimming. The ongoing headaches are usual following Meningitis but hopefully will lessen with time. She does need to take painkillers regularly to keep them at bay or tolerable rather than wait till it is bad before taking them. Painkillers are then less effective. It is a bit of a postcode lottery as to how good and helpful the neurologist is. If your daughter was in a big specialist hospital in a city then you may find they have more understanding and experience and have access to other specialty follow up. I would definitely mention her balance problems, left sided weakness and eye problems but it maybe at this time it will be a wait and see. I had some similar problems and did end up referrred to ophthalmology and neuro ontology (balance Clinic).

I am wondering if you are in the U.K? If so I would suggest that you or your daughter ring the Meningitis Now helpline - Freephone 0808 80 10 388. They are a great source of support, understanding and can send you relevant information. They have other things you/your daughter can access as well such as a community support visit, alternative therapies, counselling etc. If you haven't already take a look at their website MeningitisNow.org

Very best wishes to your daughter and you. It has an impact on parents and husbands/partners too. It will have been an frightening and very emotionally difficult time for you seeing her so seriously ill.

[MinkyD in reply to StrawberryCream]

Thank you for the information. I realise it is still very early days and it can take years to recover.

We are in the UK, South East wales. I don't think they'll have much to offer in the way of physio etc. It seems like if you are a child and have meningitis, they offer alot more after care and a quicker follow-up. It's a shame that they don't offer this to a young person who has the ability to make a good recovery.

She wants to get to a state where she can return to work and contribute to society, but this is so difficult with out support. She tried to get ESA (employment support allowance) but has not received anything yet. Luckily she has a supportive boyfriend and a low rent (the benefits of living in South Wales!) so they are just about managing. We are helping out where we can, like paying for the exercise program.

We are so very thankful that she is still with us and has no severe after effects.

[AlyxLouise94]

Hi, I myself had Meningitis last February at the age of 21 so I can relate to what your daughter is going through.

I had right sided weakness and had to learn to walk and use my right arm again as well as deteration in my eye sight and just pain all over my body.

Going to the follow up appointment they ask how the recovery is going since the illness, explain to you again what you have been through and answer any questions you may have. In my case they took bloods because I also had 2 strokes so they may do that for your daughter to check her cell count.

I found my follow up very reasurring because it was as if I was finally getting past the whole thing. However a year on and I suffer from migraines which I never used to and at times struggle with my memory and speach but all things considering it could be a lot worse.

As for physio I had an early discharge team visit me twice a day for the first 3 weeks when I came out of hospital and then I had further physio at the hospital for 5 months after. If your daughters headaches persist make sure you keep going to the doctors for help if needed and if like my doctors they aren't listening start making a log of her headaches and how it effects her day to day life. That's what I've had to do for the last 3 months!

Tell your daughter it may seem never ending right now and that she will never get better, but she will! It may take a while but she's young like me and I found it so frustrating not being able to walk unaided or shower without my mum but now a year on I'm back to normal (mostly)!

If she would like someone to speak to about what's happened please feel free to message me on here.

Best wishes

Alyx

[MinkyD in reply to AlyxLouise94]

Thank you for your information, it's great to hear from someone with a similar story.

The follow up appointment was a little disappointing. The consultant is an immunologist, so he took bloods to see if she has a condition which predisposes her to get meningitis. He talked a lot about anxiety, and how most of her symptoms are caused by that, which we didn't really understand or agree with. She has suffered with anxiety in the past, but it never caused head, neck or back pain or one sided weakness.

Her ct scan in the hospital was ok, so no strokes, but he said all the tests showed that she was very poorly, with her kidneys, liver, clotting systems, lungs etc all failing due to the toxins. So this must have done some physical damage to her, which is causing her problems. She is, however, slowly improving every week, so we can be thankful for that and just be there to support her through it.

It would have been nice to see a dr who specialised in the after effects of meningitis, and not one who knows about the bug and how it infects us etc. But I expect they don't exist, and she'd have to see a different dr for each body part effected.

Best wishes with your recovery x