Bacterial meningitis in the PICU … 5 days in.

[CharliesMama]

Hi. I’m Kellie, and I’m currently in the PICU with my 13 year old son Charlie who is on the Autism spectrum and has been diagnosed with Bacterial Meningitis.

Charlie started having a headache in the beginning of March and after 3 weeks, 4 pediatrician visits, 1 urgent care visit, and 2 emergency room visits, we discovered his sinus infection had progressed to BM. For 3 weeks, despite having a fever, everyone tried to convince me that he was having migraines. On Monday morning, I was awoken at 5:30 am to a crash in the bathroom. I ran in to find charlie laying in the bathtub having fallen and pulled the curtain and rod down on himself. He told me he slid on the rug and for the time being, I dismissed it. Later that evening, again I heard banging in the bathroom, and went in to find him repeatedly falling into the wall. He said “something was trying to keep him down”. By morning, he was in excruciating pain, the lethargy was apparent, his fever was high, he seemed confused, and his balance was off, so I got him in the car and made the 45 minute trek to Children’s National Hospital.

In less than an hour after arriving, Charlie was admitted to the PICU and we were informed of the meningitis. We are currently 5 days into fighting this illness. Presently Charlie has excess cerebral spinal fluid putting pressure on his brain along with a CSF clot. Additionally, he’s having Cerebral vasospasms. Yesterday he had sinus surgery to get infection away from his brain and we’re hoping that will help to combat the infection, but his white count is now slightly higher than it’s previously been. They did tell us that because of the severity of the infection, it would probably get worse before it gets better.

As a mother, watching your child suffer is excruciating. Reading all the stories on MeningitisNow has been of great comfort, so I wanted to introduce myself and welcome any insights, experiences, thoughts, advice, or wisdom. Thanks in advance.

Kellie

[Mads1975]

Hello, I really feel for you, it’s awful to suffer personally but must be even worse when it’s your child.

I was diagnosed with TB meningitis in 2008 as a result of contracting HIV when k lost my virginity to my girlfriend who later became my wife.

The meningitis was horrendous but fortunately I didn’t suffer from headaches. For me it’s left me with reduced concentration and has made finding work much harder. However as a psychologist that I was seeing told me, I’m alive and are far better equipped than many sadly end up. I was fortunate because they managed to diagnose me in time and it sounds like your son’s has been caught before it has got any worse and caused any more cognitive damage.

I would recommend ensuring that you fight for every bit of aftercare you can get after your son ‘recovers’ as I found the hospital I was in looked purely at ensuring that I was physically well and I had to seek out support post discharge myself.

Headway were so helpful for me. I wish you both all the best x

[beenish_6]

I can feel you I was suffering from the same. I hope your kid is fine now

[Tfarms]

Best of luck to you mama & your baby. This is a tough fight but he can do it! I was on deaths doorstep just a few months ago & with the proper diagnosis & treatment I'm so much better! Keep fighting for him & his care, gotta stay on top of it as the health care system lacks when it comes to meningitis. Good luck, God speed.

[Wizzy72]

Omg reading your post brought memories and tears to my eyes I'm reliving my 13 year old stories. I'm here if you want to speak I feel your pain my son had meningitis at 13 and I'm still trying to cope especially hard for single parents. I totally feel your pain and want to give you a big hug x