Viral meningitis

[Sylv1969]

My 17 year old daughter was diagnosed with viral meningitis last weekend and this was confirmed on Monday. Initially she was given antiviral and antibiotics because they was unsure if it was bacterial meningitis. She had been unwell for 5 or 6 weeks. Permanent headache that painkillers didn't touch. We had numerous visits to a&e , over the phone and in person consultations, a&e dr said it was a tension headache, family dr thought it was a migraine, migraine meds didn't clear it. Then I took her to opticians who discovered the swelling and bleeding around the optic nerve. Not only did she have a headache, but also vision disturbances, feeling and bring sick and neck pain. The headaches are milder, the visual disturbances are still happening but not as bad, neck pain gone. The other night she said her arms felt really heavy. We did go out for the day yesterday which resulted in really bad headache. She is wanting to just get on with life. Is all this normal? How long before she's fully fit and well. She had a lot of pressure around the brain and a lot of fluid had to be drained.

[Chri5ti]

I am so sorry she is going through this so young. I hope her age will help her bounce back quickly. Unfortunately the only thing about VM that is consistent is that your body tells you your limits. And we are all different. I am a recurrent VM person, 7x and counting over 20 years. She may never get it again, but you should keep that in the back of your mind just in case. At 17 it will be hard, but she needs to listen to her body. Rest a lot and not overdue it. You can suffer from headaches, brain fog and fatigue for several months. Sometimes less and sometimes more. But if she listens to her body, rests when she needs to, and doesn't overdue it hopefully she will bounce back quickly. Her youth might help with that!

[Sylv1969 in reply to Chri5ti]

Thank you.

[Bellesmom12]

I am so sorry for her illness. I do believe her youth will help in her recovery. The CDC says the viral should be gone in like two weeks. She and I are proof that is NOT true. I was like over a month with my symptoms ebbing at times and coming back worse. Third trip to ER I was finally diagnosed. This was after my vision doubled. I can’t even describe my symptoms at that time. Horrible. I was like 58. Now close 4 years later I still have symptoms. Numb spots and weak spots come and go. Especially when I get stressed. It has been life changing. I sometimes lose words, my thought process is scattered when I get tired. I need quiet time a lot more. I will say I know a couple young people who have had it and they have very minimal side effects. Possibly younger brain????? Lol. Just remember that the health care providers are totally clueless and the symptoms are real. Love and hugs to her and all your family. This illness is evil but there is hope. She will heal just don’t hurry and try to rest.

[Sylv1969 in reply to Bellesmom12]

Thank you. It's certainly been a nightmare trying to get to why she was so poorly. Sorry you endured all this too x

[LULUMOPIT in reply to Bellesmom12]

I totally agree with you, I was also diagnosed with VM in 2021 and am still experiencing some symptoms even now, I sometimes still loose balance when walking, there is still this numbness in my feet, forgetfulness ooh this illness is really evil. but there is still hope that one day all will be well.

[Bellesmom12 in reply to LULUMOPIT]

Yes I have hope too. Just trying to keep going. Grateful it wasn’t worse but kinda mad it happened at all. I just try to live by the old saying “fake it til you make it”. People have no idea I have no idea what I am talking about at times. Happy Thanksgiving!

[Grapesulike]

Hi,very sorry to hear this at such a young age, mine was bacterial meningitis and caught it plus other things nearly 12 months ago.The effects vary from person to person and unfortunately last as long as it takes each one. I had necrosis on fingers and toes and only just been discharged from podiatry with tops missing, also a stroke in my left arm.

The concensus of opinion is ,in my case, 2 plus years to recover but?

Any advice I can give is, keep positive, listen to your body,be very careful of the amount of antibiotics intake and accept that it will take time.

Very best of luck and health.

[MNClaireD Partner Meningitis Now]

Hi

Sorry to learn about your daughters experience. If you live in the UK, our nurse led helpline can provide you with more information about recovery and the support available. The helpline is available Mon-Thu 9am-4pm, Fri 9am -1pm by calling 0808 80 10 388 (UK only), or by email: [e-mail]

Claire

[Wizzy72]

I'm sorry to read this it just reminds me a lot about my son and how many doctors misdiagnosed the signs of meningitis. He suffered in January and is still recovering he has headache been told if he has sickness as well to bring him back to A&E he suffering with being tired, short temper we are now waiting for ibs test adhd and autism as he suffered brain damage. I wish your daughter a speedy recovery

[Sylv1969 in reply to Wizzy72]

Did your son have viral meningitis? My daughter had another episode of heavy arms and this time a finely sensation on one side of her face. Our gp spoke to the paediatrician and they have come to the conclusion it's a pre fainting stage, not sure if i believe that diagnosis.. Her blood pressure is at the lower end of normal and dipped when standing up. She gets tired easily, still has pixilated vision but this is improving. She has autism assessment at the end of this month, but she has had issues all through school, and it was hard work getting anyone to listen. She was self harming and tried to take her life a few times by overdosing on pain killers.

[TheBillman]

Hi Sylv1969- I am really sorry to hear about your daughter. She has to believe that her symptoms will improve with time. It sounds like things are moving in that direction with the improvements in vision but she just has to be patient. And like others have suggested, listen to her body and not over-do it. I was diagnosed with VM at the age of 37 while on a trip for work and wound up in the hospital for 4 days. It took me well over a month to recover but I still get headaches when something isn't right with my body - cold, flu, Covid, injury, etc. I would also suggest you call the helpline that Claire mentioned earlier since it's also taking a toll on her mental health. I wish her the best of luck and I know that she will get through it faster when having a positive outlook.

[Sylv1969]

The paediatrician isn't 100% certain that the viral meningitis caused the swelling and high pressure in her head. She's been diagnosed with idiopathic intracranial hypertension. The eye doctor at the hospital is monitoring my daughter closely, she has been put on acetazolamide as a precaution, to make sure swelling doesn't come back. The paediatrician has spoken to adult neurologist and they are going to see her to, they have requested she has a chest xray and mri with dye, also having a variety of blood tests. Lupus also got a mention. The meningitis took them by surprise because they say she didn't have the classic symptoms so thewant to make sure there is nothing else going on. She also has autism assessment on Tuesday after over 2 years on the waiting list. Have others had these tests? Not sure if this is a box ticking thing or they have a fair idea of what's going on. It's exhausting going backwards and forwards to hospital, twice this week and next week. I don't work but feel working full time would be a breeze compared to looking after one child with autism and one child with suspected autism alongside whatever ailment she has or had.

[Wizzy72]

My son had meningitis back in December and was misdiagnosed. He suffered brain damage. They had to put him in an induced coma. He now has to have regular mri scans. Too check the fluid isn't building up as he had to have two drains. He isn't eating and we have been to paediatrician, dietician, counselling you just have to monitor her. I was told the other day they could see a build up of fluid on the other side of his brain been told if he is being sick and complaining about headache I'm to take him back to A&E but teenagers like to cover up. He is constantly tired all the time and is very brave we are now waiting for test for adhd and autism. Just be there for her as it is confusing for her as much as for you. Always remind these doctors that she suffered with meningitis and you can ask at any time for advice. No one understands the pain a parent goes through seeing there child in pain