How do I cope..

[SharonAustralia]

Hi all,

My son is 30 yrs and was diagnosed with Cryptococcal meningitis around 3 months ago.

It has been a long journey for him and as he was previously a healthy adult without aides, organ transplant recipient or cancer, he was a rare case with doctors not knowing how to treat him and all of them saying he one the first or 1 of just a handful they had seen in their careers.

He spent 2 months in hospital, had 3 lumber drains, 23 Lumber punctures, excruciating ongoing headaches and head pain and when they were unable to get the pressure down, they performed an operation to put a shunt in his head and then sent him home 4 days later with an appointment 2 months down the track to check his progress.

They sent him home still confused on and off, hardly able to walk, terrible pain in his hips, with sores beginning to come up on several parts of his body which his GP learned later from swabs were Staph.

He was also experiencing sudden paralysis of his leg, arm and the side of his face on and off which they thought was nerve damage from the Lumber drains and would get better.

After 2 weeks at home he was obviously getting worse, he had times when he couldn't form words and started to sleep 23 hours a day.

Last friday I called an ambulance to take him back to hospital, they still have little idea what the cause is other than to know he has serious infections in his body, a swollen brain, his white blood cell count is down, his LP is abnormal and despite giving him 4 powerful antibiotics all together to cover all bases his condition is in decline.

Today the doctors called a meeting to say his prognosis is poor and we should prepare ourselves.

Today, he is semi conscious, only waking for a minute or 2, 3 times a day.

While i knew it would be a long journey i was not prepared for this, I dont know how I am going to cope, I need to be strong for him and I will.... but it is so hard.

I guess I am hoping someone who has a child with this disease can help me make sense of this , share experiences, I feel so alone.

How do others cope?... how do mums prepare to lose a child?

[Schmooschmoo]

Hi Sharon, I'm so sorry to hear that your son is having a difficult time & you are struggling with this. I see you live in Australia? Me too. Is your son in a Sydney hospital by any chance? I just wanted to say that you need to hang in there & stay strong, someone on here will read your message & will have some helpful advice for you. Meningiticical and meningitis cases are not very prominent in Australia & I find (as you may have already found yourself), that it is difficult to find a support network for meningitis issues. It can feel very lonely. Please be positive, your son is young and I truely hope that he pulls through.

Hugs to your son and your family.

[SharonAustralia in reply to Schmooschmoo]

Thank you for your thoughts it means a lot. Yes, Cryptococcal meningitis in healthy people is not very common. He was in Royal Brisbane Hospital , now in Nambour hospital.

[Summerhippy]

Hi Sharon, I am Thinking of you, this is a very stressful time for you as a mother, my late mother went through all the same feelings and thoughts you are having now when I was 4 years old, I will be 50 next year and I won't tell you lie's, life has been very tough at times but the bond you have with your child and what your son feels for you will only enrich your live's in the long term. If he is a fighter and determined to pull through your love and support will be crucial to his mending and understanding of what lays ahead. Hopefully he will have minimal damage and will recover. But if not all I can say is take every day, one day at a time and expect slow progress. Keep an eye on the hips though my bacteria went to my hips and all my life i have suffered severe pain and early onset arthritis which led me to having to have lots of surgery due to deformities of the sockets. I had a total hip replacement in 1999 and the other leg in 2011. The scaring in the brain has also given me depression and some anxiety issues also. But at the end of the day I am still here and have had a lot of love and a some good times in my life, wish you and your family well, tell your son to reach for the stars.......... nothing is impossible if you try hard enough. x

[SharonAustralia in reply to Summerhippy]

Thank you so much for the reply, it sounds like you are certainly a fighter. but sorry to hear of your challenges you have had to face.

Dis you have Cryptococcal meningitis?

I was very curious to hear you had hip pain, my son has had terrible hip pain for the last month and the doctors dont know what is causing it.

Unfortunately in Australia, Cryptococcal meningitis in a previously healthy person is quite rare with all his doctors having very limited or no experience.

2 days ago, I went to see him and he was awake and quite bright which amazed me as he had been so sick previously and we had a lovely day chatting.

The next day he was back to be unable to wake and when woken, was not lucid and having hallucinations.

They still dont know why he is deteriorating other than to say he has multiple infections, his brain is continuing to swell, had an abnormal LP, terrible hip and neck pain.

They said they will try steroids as a last resort as they could do more harm than good and will do so in the next couple of days.

The pain is so great i have no idea if I am going to be able to cope but I will.

Your comments mean a lot, thank you.

[Summerhippy in reply to SharonAustralia]

Chin up Sharon make sure your son is under a good neurologist and keep digging for information, it's a good tool to go in with. Dr's don't know everything. You know you're son. I had meningococcal septicaemia in 1971 there were no real definitions then. Tell your son people all over the world are thinking of him

[SharonAustralia in reply to Summerhippy]

Thank you so much for your kind thoughts xxx