Fighting to save my sons life from recurring meningitis.

[mommyof123b]

Hello,

Just three weeks ago my 17month old son was admitted to hospital then airlifted to a children's hospital with meningitis. It is now his second time in just over a year. For when he was only two weeks old he got ill with bacterial meningitis. This time was a lot different thou. It took the Dr's 38 hours to even do a lumbar puncture even when he had classic signs and symptoms (fever stiff neck, he would only uses his eyes to look around, un-blanching rash, in and out of conscious as well as loss of appetite) the reason his older brother had influenza a week prior and they waited the 24 hours for the influenza test to come back negative. How come I needed to fight so hard to save my sons life for the second time. Why are the Drs constantly making the se mistakes over and over agen when all the signs and symptoms are their.

[SunflowerGirl]

Hi mommyof123b,

Do you know if he was treated with intravenous antibacterial and antiviral immediately? Do you also know if he was treated with intravenous steroids immediately? If he was treated with these straight away, then it is normal to wait until it is safe to do so, to do the lumbar puncture.

I completely agree and sympathise with your frustration. Meningitis is rare, and doctors do take the diagnosis as a medical emergency, but there seems to be a general lack of awareness of the urgency of treatment to reduce the chances of damages. Doctors seem to be more aware of the urgency of child cases compared to adult cases.

I am currently suffering bacterial meningitis, the second time in 3 years. The first time, the doctors at the A&E were very slow to recognise and treat me, despite the clear signs and symptoms, (treatment did not start till 9 hours after arrival at the hospital). My hearing was damaged after last time, so last week when it all happened again and I went to A&E I was very assertive and clear with the treatment that I wanted. Despite this they were reluctant to treat me. Possibly seeing the potential medical negligence case notes on the top of my medical notes from last time, motivated them. I received antiviral, antibacterial and steroids within an hour of getting to the A&E this time. It was an excellent decision and this time I have no damages.

My experience has taught me that it is worthwhile to speak up, say your concerns, and be assertive. Fast treatment is very important. I hope that your son makes a good recovery.

[mommyof123b]

Hello sunflower girl.

Thank you for sharing your story with me.

I live in Canada BC and when my son was only two weeks old they has started him on antiviral as well as antibiotics right away for it is mandatory to in children under the age of three months with a fever. This time however they waited the 38 hours to do the lumbar puncher then another 8 hours before starting treatment with antiviral and antibiotics after I had lost it and demanded them to start treatment for I was not waiting the 72 hours it can take for the results to come back.

A child's firs defence agents meningitis it how quickly a parent respons to how ill their child I'd gitting. The next it how efficiently the Dr's treat. You would thing especially with a child that has already had meningitis the Dr's would be listening to the voice of the parents. Why did I need to become crazy to save my sons life. Why did he need to get so bad before the Dr's would listen to me. I know first hand how fast meningitis can steal a life for my god daughters life was taken within only 12h of first symptoms 6 months prior to my son first becoming ill.

I count my blessing everyday for being able to kiss my some good night. But the devastation that is left behind for the lack of action will affect my family for the rest of our life.

[JohnFionaEllie]

Firstly, I hope your little boy is recovering and you are managing to hold things together at this very worrying and stressful time. I feel for you all, I really do. Our little girl has recurrent pneumococcal meningitis brought on by a head injury when she was 4years old. She is now 9 and has had it twice now with a couple of pneumococcal infections inbetween. The first time we had no idea and it never even crossed our mind she had meningitis. She was very poorly but as she had no rash, we didn't suspect it. The second time was worse and we nearly lost her. I had to plead with the doctors to trust me that I knew what it was...I recognised the symptoms from the early onset, sickness, neck pain, headache etc but again there was no rash. Both times they started her on aciclovir and ceftriaxone together but did a lumber puncture once they had stabilised her. The third time, again I had to plead for the hospital to begin ceftriaxone treatment immediately but this time it did not turn into full blown meningitis...more of a bacterial infection they said. I think in this day and age you have to be forceful but also confident in stating the facts to the doctors, that you know your child better than anyone and keep badgering them. Threaten to sue if anything happens to your child if you have to. Our children are the most precious things in our world and our job as parents is to keep them safe and if that means getting forceful and constantly reminding them (doctors or hospital) that we know our children better than anyone else PLUS don't forget you have been there before and know the signs.....we know how important it is to get the drugs in quickly and I really can't stress enough for anyone to be vocal and get your point across. On one of our daughters periods in hospital the nurses and doctors actually told us that they rely somewhat on parents to keep them informed as they cannot be everywhere at once and know everything or every symptom of every child. I hope this gives you the courage to continue being strong for your boy and making yourself heard and wish you well for the future. Xx

[SunflowerGirl]

Hi JohnFionaEllie,

I also had a head injury, (18 years ago) and this injury allows a passage for the pneumococcal bacteria to the meningies where the infection causes meningitis. Pneumococcal meningitis is the most common type of meningitis after a head injury. Have the doctors given you information about preventing future infections? Is there a chance to repair the damage to your daughters head in order to prevent further infections? Steroids given at or before the first dose of Ceftriaxione in suspected pneumococcal meningitis is indicated in most protocols. This is theorised to prevent swelling and damage to the brain. It's worth suggesting/asking about this if it ever happens again.

All the very best for your daughter.

[mommyof123b]

Well the first time my son had meningitis it was bacterial, this resent time was viral but strain unknown. He had not had any previous head injury prior to.gitting meningitis this time.