Newborn with aseptic meningitis

[laurelm]

Hi. My newborn was diagnosed with meningitis on day 5. He was treated for 7 days and watched closely in the hospital. He had nothing abnormal in his blood or urine. His LP showed elevated levels of white blood in the 500's. Nothing ever grew from his cultures and they said he had aseptic meningitis. He is now 6 weeks old and I still worry about every little thing. Does anyone have similar experience? I'm looking for some support as I'm sick with worry for him all the time.

[Jules101]

Hi my newborn developed parecho viral meningitis at 6 days old, in February last year. After a week of him being severely unwell the results came in that parecho virus was found in his CFS from the lumbar puncture that they did on day six when he had seizures and stopped breathing and end up being transferred to a NICU as he was ventilated. He had seizure activity on EEGs there and an MRI scan which showed white matter abnormalities. He came home at three weeks old, and then suffered from severe silent reflux which caused oxygen desats and he also had sleep myoclonus seizures. I was absolutely terrified throughout it all, and the first six months of his life were very stressful to say the least, and living with the uncertainty about what the future might hold was very unsettling. I'm so sorry to read you are going through something similar and can understand some of what you might be feeling. Samuel is now 18 months old and had just started walking and seems to be developing really well, although a little more slowly than his peers. He was also born 4 weeks prematurely as well though. He is still under routine review from a paediatrician for his neouological development but we are feeling much more hopeful and relaxed now. Meningitis Now charity were extremely helped in providing me with lots of information and emotional support, if you haven't been in touch with them already? Feel free to contact me if you have any other questions etc.

[laurelm in reply to Jules101]

Thank you for replying. Im sorry you went through this too. It helps to talk with someone who's experience is similar. Samuel's healthy development gives me hope for Levi. He also has bad reflux but im not sure how it affects his o2. When in hospital his o2 levels would get down to 75 but then he would recover on his own and never needed to be ventilated. How did you find out about his seizures and o2 levels? Were they very recognizable? I'm always concerned I'm not seeing something and different care providers seem to have different views.

[Jules101 in reply to laurelm]

Hi, sorry for my delay replying, I would say the most important thing is to trust your instincts and insist (& re insist) that the doctors listen to you and check things out if you're worried. After what you've been through that's the very least they can do anyway, as you've got genuine reasons to be concered, more than just the usual 'new mum' sleep deprived anxiety. With Samuels seizures and oxygen drops due to the meningitis / encephalitis, he was thankfully already in the neonatal unit when it happened so they had him on monitors which showed his oxygen desats. With his seizures, I'm not sure if I would have spotted them, especially at first, as it was noted by a doctor that he was lip smacking (I might have just thought he was hungry/rooting), but later on it became more obvious with a limb jerking and him stopping breathing totally. Even 18 months on its hard to write and think about that day.

Anyway, my main point is I just knew in my bones that something really wasn't right with him for about 2-3 days before that and I kept asking them to review him, and they kept pretty much dismissing my concerns, or playing them down, but thankfully a wonderful consultant took me seriously and admitted him to the neonatal unit just in time so he was monitored and they were right there to act on it straight away. I dread to think what would have happened otherwise.

With his reflux desats after he came home having recovered from the acute phase of the meningitis, I again just knew something wasn't right. And again had to fight quite hard to get the doctors, and even my husband and family to listen and take me seriously as they thought i was just being paranoid after what he'd just gone through with the meningitis. But basically he would go a bit floppy and limp after feeds ( he usually fell asleep while breastfeeding anyway) and at times his skin above his upper lip would go a bit blue / dusky which I was told could just be trapped wind, but sure enough when he was finally hooked up to monitors he was dropping to low 80s / high 70s at times in oxygen sats. He also had quite obvious limb jerks and twitches ( the sleep myoclonus seizures). He thankfully always self recovered from the reflux oxygen desats without them needing to intervene but he spent two nights in HDU under close observation, and needed reflux meds to stop them, and make him more comfortable overall. We went through a long time where I couldn't lay him down at all as he'd cry and squirm and his nostrils would flare due to the reflux pain. I ended up videoing his behaviour after feeds, and his sleep myoclonic seizures on my phone to show his paediatrician. She found this really helpful in diagnosing him and finally prescribing a reflux med that worked really well ( omperazole) after we went through a lot that didn't work for him. It didn't help his reflux was silent too, so there was no obvious puking etc. With newborns and small babies it is so hard to know what's wrong, and figure out exactly what's going on as things can present non specifically and be hard to recognise, but I firmly believe most mothers know when their babies aren't right, and need help. Instinct is a very powerful thing,

I also had to fight my corner again in feb this year when he got quite poorly with bronchiolitis, and ended up in hospital for a week needing oxygen, I was aware quite early on he was going downhill but had to go through the usual rigmarole of being dismissed and discharged from hospital before he got bad enough that they took notice! I think us mummy's notice issues with our kids often very early on, like an early warning system that I sometimes wish doctors would take more notice of.

Anyway I hope that helps a bit, sorry for the long reply. I hope Levi is doing well, and believe in yourself as his Mummy.

X

[jbloocher]

My eldest son went through the same experience. He was in intensive care within 2 days of birth. I've had 4 children since and I have suffered constant anxiety with all of them. I did lose my brother to meningitisb though so it may make it worse. I just wanted to say that he never got I'll again. Ever. Didn't even miss a single day of school. Currently he's a strapping, bright 19 year old man, travelling on a gap year before university. It's incredibly hard, but you will get through the worry. It doesn't go, but you become more able to talk yourself down from the ledge when they get ill. Im actually on here becausei was up last night worrying about my 4 month old. It's crazy almost, but we have to stay confident that this won't strike us again. It's exhausting all the anxiety, but it gets easier as they get older. Promise. I'm so sorry you are going through this.