Meningitis-- when mums right and docs are wrong( long story)

[cantseemyfeet]

I have just endured 5 days of hell and I am going to explain why in the hope it might urge other parents to use their gut feeling rather than rely on doctors advice.

On Thursday morning my 3 yr old son became unwell with a high temperature, I assumed it was just a bug going round and gave him Calpol and let him sleep.
When his temp hit 39 I took him to my GP who checked him over and told me he seemed ok but had swollen glands, he adviced me to keep him cool and gave me Brufen to bring his temp down.
By Thursday night he had developed a blotchy looking rash and his temp wasnt going down so I rang the emergency out of hours surgery, explained that he had seen a doctor already and that he was still very poorly with a rash now.I asked the doctor if he would come to my home to see him as I was getting worried.
The doctor told me I would have to bring my son to him if I wanted him to be seen and despite the fact I argued that I had a 5 month old son asleep and no way to get there as I was on my own (the surgery is 5 miles away)I was then forced to haul friends and family out of bed to look after my other children and then drag my son out into the cold to see the doctor.

Once there the doctor briefly checked him over and told me it was probably chickenpox. I said I was worried it was Meningitis and was told that it certainly WAS NOT Meningitis. The rash he had was multiplying by the minute which I questioned, as chickenpox tends to have spots that appear over a couple of days but I was assuered it was just a viral rash and was told to go home and let him rest.

The next morning I expected to find him covered in blisters, I even got some calamine lotion for him but, the spots were the same, not dark but blotchy and his temp was still high. Deep down I knew something was wrong but you put your trust in the doctors dont you and I didnt think they could be wrong.

I really began to panic when he started vomiting and although he was sleeping alot I found myself constantly checking him. I desperatly wanted to call the doctor again but when 2 of them have told you he is ok you dont want to become hysterical and tell them they are wrong. Then I saw it....that one spot. The one you dread ever finding but KNOW EXACTLY what it is. It was dark red and as soon as I saw it I rang the medical emergency number. It took 45 minutes for a doctor to arrive but the minute he saw him he told me he was going to inject him with peniccilin and call an ambulance.

The next half an hour was the scariest of my life. The ambulance was there within minutes but my son was going downhill fast, he was so sleepy, he was grey and spent most of the ambulance journey vomiting or being kept awake by the paramedics, who I have to say were fantastic.
By the time he got to hospital his hands and feet were so cold they couldnt find a vein to put a drip in but thankfully once treatment started he began to make a recovery. Hewas very poorly for the first couple of days but thanks to the wonderful nurses and doctors at the hospital he was allowed home with me today. He still has to have IV antibiotics every day but it was the best feeling in the world bringing him home.
Sorry this story is so long but I appeal to all parents, if your child is sick and you dont think your doctor is right PLEASE PLEASE take them to A&E. The consultant couldnt believe that I was told it was chickenpox as the first rash he got was a sign of Meningitis, along with the cold feet and hands. She told me I should of just brought him to A&E on Thursday night but praised me for going with my insticts and constantly checking him because if I had let him "sleep it off" I would now be arranging my sons funeral.
I can forgive my GP for not realising because he had no real symptoms at start but the out of hours surgery was a disgrace and I am going to kick up such a fuss about it.
I am so grateful that my son is alive and making a recovery but it is only because I know him and I knew something wasnt right. If you feel the same when your child is very unwell then I urge you to do the same!

Wow sounds like you have had a tough time hugs defo complain to doctors surgery practice management.

Iwish your son a speedy recovery.

Thanx LyndaG,

Am scouring the net to find out how to make proper complaint.
I feel like going to the surgery and screaming at the doctor (ALTHOUGH WONT)
I just dont want this to happen to anyone else. I was lucky, the next ones might not be.

Definitely complain.

Hope he feels lots better soon - and you too - it must have been so scary.

I am no longer in the uk, but my last couple of experiences with out of hour surgeries were so appalling that I stopped even bothering. If I thought I needed a doctor, I took my children straight to a paediatric a&e that was about 1/2 hour away by car. It wasn't my local hospital, but the extra time I spent in the taxi was more than made up for by the fact that they were immediately seen by paediatric doctors rather than being shuffled around from one person to the next in regular a&e until we found someone who could remember what they learned about childhood diseases in medical school. (Once had to wait 4 hours and see 6 different doctors before got one who knew how to look in an 18 month old's ear to see if he had the ear infection I was sure he had...of course he did have it in the end).

ps. So glad to hear your story had a happy ending.

God how scary. You would thinks at this stage that docs would routinely suspect meningitis. I WOULD go and scream at him tbh. In front of a surgery full of patients too.

Well I prob wouldn't but I would def go an see him and suggest he goes back to med school.

OMG I'm so sorry to hear your story.......my worst nightmare. I so pleased your DS if getting better.

A the son of a friend of mine had meningitis. She rang me in the morning to ask me if I could look after her older daughter as she wanted to take DS to the drs. She was so calm and ended the request by saying "...but if you're busy don't worry" I had something planned that morning and had just dropped DD off at nursery so I said "No"

I had no idea how unwell her DS was and she was so calm I didn't even think for a moment it was so serious. I have never forgiven myself and have never said "No" again

He pulled through after a stay in hospital and we are still friends

Anyway that was a little off the point. I think you should complain about the out of hours doctor. I can understand the original Doctor's management of your DS but not the OOH Dr. He needs to know what he missed so it doesn't happen again!!!!!!!

how awful that the doctors failed to spot how ill your son was. And that you had to wait 45 minutes for the emergency doctor to arrive - that could have cost him his life. That purple spot you saw is a sign of septaceamia and means that the menigitis is in the last stages, and that treatment is an absolute emergency - 45 minutes is far too long to wait.

Well done for not letting him 'sleep it off', and you didn't just 'let him rest' as the night doctor had told you.

Thanks for all the reply guys,

I have had to take DS back to hospital today because he foot was swelling where his catheter was so he has had to have another one put in his hand now. So I havent really had time to do anything about the complaint yet but believe me I will.

Had no idea the spots were a sign meningitis was in last stages so I will also be kicking off about the fact it took 45 minutes to get an emergency doc here too.

It amazes me just how many stories I have heard about people who have been sent home with sick children and later been in the same situation as me and found out their child has this deadly infection. One mother actually lost her little boy because the doctor told her he had a bad bout of flu!!

I am the first to admit that I flap the minute my kids have a temp or a slight rash. We all know that they are going to catch various nasties flying about at school but it dosent stop you worrying that it could develop into something else.
Meningitis is every parents worst nightmare and I know I have gone and grabbed the tumbler on more than one occasion when all the poor kids have had was a heat rash but after this I certainly wont think twice about going straight to hospital if I believe my son is really sick.

We put our childrens lifes in their hands because we believe they are the profesionals and will know what to do. After last week I doubt I will ever trust a doctor again.

The thought of meningitis brings me out in a cold sweat. One of the kids I taught was dead in 24 hours from it, and I've never forgotten the horror.

In defence of the medical profession it is a notoriously difficult diagnosis - but this only serves to reinforce the need to go with your gut instinct and get your child to hospital if you are worried!!!

Well done cantseemyfeet. Your story brought a tear of fear to my eye. I hope your LO makes a quick and complete recovery.

XX

hi cantseemyfeet, you know, i had a similar exp but diff illness although i live in Spain.My 14m dd was vomiting any fluids i gave her all day but there was a bug going round so i thought keep a close eye and if she wasnt better after a while i would take her to docs.around bedtime she had some milk and she kept it down and seemed herself so she went to bed as normal.i woke early in the morn and went to check on her and she wasnt responding, she was breathing but limp and had a strange gurgling noise in her throat so i assumed she was choking or something.we panicked as you do,i didnt have a clue what to do. dp rushed her to a and e, only a minutes drive from the house if that.when i got there after my neighbour rushed me down following dp i was could hear her crying in a room.i was told she was fine and she was given to me but we were told we would stay for a few hrs for observ.we were summoned into a docs room and were told that we over reacted and that we shouldntve panicked, it was noted when dd arrived that she was just sleepy.i mean COME ON!!! you know when something isnt right with your own bloody child.went bk to room with dd and i was giving her a cuddle and next thing you know she went stiff and her eyes started to roll.it was terrifying, doctors shooing us out, nurses running about everywhere.
we were told she had had a seizure and was taken up to the childrens ward as they thought it was strange as she didnt have a fever which is obv the normal cause for this in kids.she had 3 more seizures that day and we were kept in for a week having brain scans etc.she was diagnosed with mild epilepsy which dp and his sis used to suffer from.hopefully she will grow out of it but needs medication twice daily for at least the next 5 years.id love to see that stupid woman doctor again and let her tell me we over reacted
like you say, ALWAYS trust your instincts.
im so sorry for what happened to your lo, glad hes ok now.sorry this is V.long!!!

sorry for the lack of gaps!! oops

Hello again,

Had a fairly drama free day today, he is still very tired but the catheter has stayed in and hopefully he will have it taken out tommorow(fingers crossed).

TMD Thanx for your post, I think when you know someone who it has happened to it makes the fear even worse ESPECIALLY when the poor little boy didnt make it. I count myself so, so lucky that he pulled through but I will never stop worrying. My Neice had the same type of Meningitis when she was 2 and I have always been aware of the signs but you panic with every fever and spot, if it does actually happen you immediatly think am I over reacting again?
I know that it is a difficult illness to spot which is why I can totally understand why the first doc didnt spot it, but the OOH doc DIDNT even take his temperature, DIDNT feel his hands and feet (which were cold) and couldnt get me out of the surgery quick enough. And to tell me it certainly wasnt meningitis was just damn right irresponsible and I am making a formal complaint to our health trust about it.

Bourbon, it sounds like you know EXACTLY how I felt last week. To be so scared and KNOW that your child is really sick is bad enough but to be told you are over reacting is just terrible. I would be hysterical if one of my kids had been strange gurgling noises and was limp, what you did was certainly not over reacting and I know I would of been furious if some doctor had told me that. I really feel like tracking this doctor down(it was an on call locum) and going crackers with them but it wouldnt do any good and I would probably end up in court so I will just make the complaint and hope that it makes them more aware if another child comes in with the same symptoms. What part of Spain are you in? My parents have an apartment over there and are thinking about moving out there, is medical service out there always like that or was it just one bad experience?

Ps. Bourbon is your little one ok now?

God, what a horrible experience. Glad that you trusted your instincts and got him to hospital in time.

I am a bit surprised that the emergency doc did not call an ambulance immediately instead of wasting the hour to come and see for himself.

Message withdrawn

OMG, well done for acting on your instinsts. Glad your little one os recovering well.

So awfull!

Lodge a formal complaint AND go kick a fuss in front of a roomfull of patients.
Gosh I would be fuming! I would even be thinking of putting flyers in local postboxes to tell people not to bother with this out of hours surgery and go straight to A&E!

Take care

sending you lots of hugs

well done for keep checking your lo and trusting your instints
make sure you send a formal complaint in this dr need to know hes done wrong

if i ever feel fobbed off with dd ill follow your advice and taker her to a and e

just so i know what is classed as a high temp over 38?
also what brand of thermoniter should i buy ive only got a forehead one and its a bit useless

bloody hech you too lisa, that is shocking at a childrens hospital aswell

Well done, sorry to hear you had to go through this and hope your son is feeling much better soon.

dd1 was sent home with a wrong diagnosis from A&E and spent 2 years with further surgery to correct the damage caused by the delay in diagnosis, she and I will live with the mistake they made.

It makes me so sad, but could have been worse as 'I made a fuss ' and wanted a second opinion.

OMG Lisalisa what a horrendous time you must off had, especially with a newborn. Would you believe only 5 months ago I was going through the same with my 5 month old son. When he was 4days old he developed a high temp and we rushed him to hospital, they discharged him a day later only to be rushed back in the next day and they found he had Group B strep in his cord! It took a week of IV anti biotics and A LOT of worry because his temp kept souring before he was well enough to bring home. They joked that I would have to start paying board and lodgings at the hospital if I came back after my 2nd son was discharged. So glad your LO made a full recovery, does he have any problems now because of the meningitis (hearing, teeth,etc). I was told by the consultant to watch out for any stiffness in joints because that could be a sign of secondry meningitis? Were you told about this because I am unsure how long I have to be cautious of this? Surely it would of happened by now if there was still infection after a week??? I did ask the community nurses that do his IVAB today but they werent sure.
Smallwhite cat, I only wish that your mam was my GP, if there was more like her then maybe there wouldnt be so many being sent home when they are seriously ill.
Slim22; If I knew where this doctor practiced I WOULD kick off in the surgery but our OOH is in an unused milatry hospital that is grubby and I swear to God you would think you were back in the 70s the second you walk in there. I have no idea where they get their emergency Docs from but I intend to find out, as for the flyers, I am seriously contemplating going to the papers with this because I dont think these doctors are the slightest bit interested in the patients, the fact they refused to come out to me when he was so ill has REALLY got me annoyed but to send himhome with "chickenpox" only to be rushed to hospital 12 hours later has got me so mad I cant sleep for thinking about it and what could of happened.
RRB. Glad you have taken story on board and will take your lo to A&E if yr really concerned, I just hope you never have to. I am unsure what the exact temp is but I know anything over 38 is a high temp and Doc told me anything over 39 is enough to cause a fit. I think normal is around 36-37 but someone else could probably tell you exactly what the correct temps are.
I was told the fever scan thermometers (the head ones) wernt that accurate so I got a digital one that goes under the arm. They only cost about £6 from boots and are fairly accurate. I am thinking of investing in the ear ones that read temp within seconds but not sure if they are as good (anyone got one???)
Wotz. So sorry your dd has had to suffer because of wrong diagnosis, I hope that she is ok now. I am worried that the Meningitis will affect him later on, my neice had real problems with her memory, hearing and teeth (no enamel) because she had it but only time will tell. I pray that he will make full recovery and wont have any lasting effects but it is the time that was wasted that makes me wonder just how bad was he?? Obviously I know he was very ill but I wasnt told if the delay would of caused a huge difference or not. Have a follow up appointment next month so can ask then.

your post was chilling cantseemyfeet.

I can't believe the ooh doc dismissed your instincts .

All the dr's I've ever seen with my children have said that they listen to mother's instincts first.

This doctor really does need a wake up call!

I am so glad he is ok CSMF. I remember sitting in A&E with Dd2 as she had a rash that was purple and multipling as we were sitting there, other people were shocked that they left me sitting there and were watching the rash cover her face and head. when we finally saw someone we were not allowed in the children's A&E and were taken to a room. I was so scared it was meningitis, but luckily for us it wasn't, it was an allergic reaction to something, but I was shocked that they left a baby with a purple rash that was covering her body very fast out in a waiting room for at least 1/2 hour...

I knew a mum whose 5 year old daughter came home from school very cold and started developing a purple blotchy rash. She phoned her GP who said someone would come out later.

The mum kept phoning from time to time for 5 hours, giving what she later realised were details of classic symptoms of meningococcal septicaemia. She was given an apology for the delay, bu was told that the GP was tied up 'on an emergency'.

When he eventually arrived he immediately called blues & twos ambulance. Child was ruched to Great Ormond Street but died later that night.

That was around 12 years ago. You do wonder whether things will ever change, don't you? This woman has since campaigned tirelessly to raise awareness of the condition. She has had to live with the fact that her faith in the medical profession when she was describing the symptoms over the phone and the woman on the other end was telling her not to worry the GP would be out as soon as he could ultimately led to the death of her daughter.