My darling boy is in hospital and I am struggling

[maxmissie]

I haven't posted many times before but really need some support and advice at the moment, my world has turned upside down in the last few days.

My 7 month old ds was v poorly on tuesday and gp didn't know what it was so sent him to A&E who also weren't sure and put him in the assessment unit overnight. During the night he had a fit and they thought it was probably meningitis (which has since been confirmed) so were treating him for that. They also did a ct scan which has shown a lump on his brain. They don't know what it is but are doing an mri scan next week to try and get more of an idea what it is.

He has been really poorly these last few days and it is breaking my heart seeing him like this. Everyone says to take one day at a time but all I can think of is what this lump might be and lots of horrible scenarios are running through my head. I am absolutely terrified about what might happen and am so sad that I can't protect him from all that is happening.

I am just about clinging onto normality as we have a 2.5 yr old dd who we are trying to keep life as normal as possible for but sometimes it is all too much.

My dd now almost 13 was diagnosed with a brain tumour when she was 18 months after being ill since 6 months old. Although at first they thought it might be malignant thankfully it was benign. She has had loads of MRI scans as a little bit of tumour couldn't be removed. She had her last one last year. When she was little she had injections, gas and medicine to knock her out before the MRI but recovered very quickly afterwards. At 7 she was expected to be awake and stay very still which she managed very well.

My heart goes out to you having to deal with the anxiety of it all maxmissee, mummee and wheredidmyoldlifego. Life is such a bitch at times.

Well spent most of the day in hospital but ds has had his lumbar puncture and MRI scan so now have to wait until next week at the earliest to hear back from consultant. He had both procedures done under one anaesthetic which they did in the MRI scanning place so that was good for him. He was fine after the general, I just get really upset when they put him to sleep.

Am annoyed that most of the day is taken up with waiting, dh was told to take him in for 8am but it turned out he wasn't being taken down until 10.30, the nurses were arranging it all out this morning once he arrived. So rather than having to starve him from 2am we could have done it from 4.30am and he wouldn't have been quite so miserable for most of the morning. Then had to wait two hours afterwards to make sure he had recovered OK which I don't mind so much because at least he's had the procedure! Am starting to realise that we are going to spend alot of time waiting around!

HarlotOTara - glad to hear about your dd, it helps alot to hear of positive outcomes as so many negative thoughts go through my head. Life is most definitely a bitch, hate the thought of any children having to deal with such horrible stuff, it is so unfair.

Maxmissie, I hope it is positive for your DS and glad the MRI is over. There is always a lot of waiting around sadly which doesn't help when you are feeling anxious and stressed. When are you seeing the consultant? Out of interest whereabouts are you? I am in South London and my DD was treated at Atkinson Morley in Wimbledon, now located at St. Georges in Tooting.

Just a very quick post and run as very tired and need to go to bed but will be back over the weekend...

Consultant rang on Tuesday to say that the lump appears to have got smaller but that they still don't know what it is. However they don't want to do anything more invasive at the moment in case it makes things worse. So on the basis that the drs aren't immediately worried they are going to monitor him and so he will have another MRI in three months time.

This is about as positive news as we could get, we're still abit in limbo because we still don't know what it is but we don't have to worry so much for the next few months. Although there is always a slight worry at the back of my mind that something could happen in the meantime but I know that's probably unlikely. So at least for now our lives can carry on as normal...and we just have to deal with the usual baby issues relating to eating and sleeping!

HarlotOTara we're in Nottingham so are at Queens Medical Centre which handily has a Children's Hospital and a Children's Brain Tumour Research Centre so thankfully we don't have to go too far.

maxmissie - I have just come back to this (you disappeared off my 'threads I'm on' for some reason). I just wanted to send you my very best wishes. I'm so pleased to hear that your little boy has made a good recovery, although obviously you are still in limbo with MRI's etc

How is your DS generally? Have you got back on track with sleep etc? I hope your DD is coping.

Take care of yourselves, and thanks for updating us

maxmissie what a hard time you have had of late. thoughts are with you. i remember thinking ds2 would miss out on so much and would never kick leaves in the park etc. he has heart problems and we've had quite a few hospital visits so know how you feel. but after 4 operations he's running around like any other 4 year old, well almost as he is mildly austic but thats a different story! i remember ds2 when he was 6 months old coming back from having his first pacemaker fitted. his brother who was 2.5 at the time wanted to know why they had painted his brother orange. it made us all laugh after a long day! does the hospital have a playroom on the ward? found that ds1 was able to play and talk to other children and staff about ds2 which helped him without realising.
i was also like you and found when you are driving to and from the hospital the hardest time when your mind wonders. just make sure you have tissues at hand! sometimes i also hated people asking how i was when all i could think of was that i was my baby who was having the operations but then sometimes i would say i was fine and then burst into tears.
my thoughts and prayers are with you and will look out for updates

Ds is fine in himself - apart from picking up every cold and cough going, teething alot and being grumpy, needing more attention than before going into hospital and not eating any solids at all for the last week and a half since his last general - he is nine months old and has approx 36oz milk a day!

Before he was ill he was increasing solids and reducing milk but being poorly has totally messed his weaning up and although he was improving again and we were reducing his milk he now won't eat anything at all - I think maybe starving him for the general has made him want his milk as a comfort even more and has given him a fear that he won't get anymore after each bottle, plus he had a bad bout of teething almost straight after. We've decided to stop spoon feeding him as he just isn't interested, he has nibbled some finger food today, whereas this time last week he wouldn't touch that either so at least he's made some progress. Don't think we can reduce his milk by much more without him eating more as he only has 5oz per bottle but after 2.5-3 hrs he is desperate for more and then is so upset won't eat any solids.

Sleepwise we had some bad nights a few weeks ago when he had a chest infection but now is waking twice for a bottle and goes off either straight away or within half an hour so not too bad. He slept through for the first time last weekend whilst we were away and my parents were looking after them! Typical!

Maxmissie that must be such a relief - don't think tumours get smaller on their own. Fingers crossed and let us know how it goes.

Don't know if anyone is still watching this as it's been a long time since my last post but took ds for a checkup at hospital today and the drs are really pleased with him.

There are no after-effects of the meningitis so he has completely recovered from that. He's put some weight on, even if only one pound in 2.5 months! He has to go back for another mri in July but the consultant's notes on the previous scan appear to be really positive as it had got smaller and its appearance had significantly improved. The dr we saw said that 'nasty' things, e.g. a tumour, don't get small by themselves so it appears that it might not be anything nasty but will have to wait for results of next scan to hopefully get more definite confirmation.

Life feels reasonably normal at the moment, just dealing with the usual baby things like weaning off night bottles and trying to get him to eat!!

I was just thinking about you today as well. Glad things are looking positive! I am always amazed by children's ability to bounce back

good luck with the eating and night weaning. Hopefully one will lead to an improvement in the other !

Maxmissie, thanks for the update. My thoughts are with you. I just hope its as good news in July!

Haven't posted for a while as ds had been fine...until three wks ago when he suddenly became very poorly (sick, lethargic) and then had a seizure. Ended up in A&E where he subsequently had about four more seizures - was admitted and given meds to stop them which worked. The drs thought he had a virus and because of his temp going up it was triggering the seizures, as he's more vulnerable due to the lump on his brain. I was feeling slightly more positive after the seizures stopped until one of the drs came to see me in middle of the night to say she thought he had meningitis and he needed a lumbar puncture and scans! I was pretty shocked and upset by this but they decided to leave him until the morning and when he woke at 6am he was OK for a few hours so the meningitis diagnosis went out of the window. Drs were happy it was just a nasty virus.

All this was pretty scary but wasn't helped by us visiting friends when it happened so we ended up in Birmingham Children's Hospital and had to be transferred back to Nottingham after one night there. Not easy when you are 15 mins drive from the nearest hospital but even worse when it's over an hours drive!!

Ds was discharged after two days and has pretty much been fine apart from a short trip to A&E on the day we were meant to be setting off on holiday for some unexplained 'episodes' - which lasted one morning and then went away.

It's been a stressful few weeks but he is OK now and just waiting for the next scan appointment to come through. Has made me scared about what the scan will show and what ds' prognosis will be but am trying to remain positive.

Hadn't read your thread before - so much has happened to your DS and family in the months the thread has been going. So many ups and downs - and always having the worry and 'what if s' of no definite diagnosis on the lump. Hope you get the scan appointment and good news soon.
Hope you don't mind prayers for your DS.

so sorry to hear about your setback. I really hope the rest of your summer is more peaceful.

Thanks for updating us (I often think of you) and take care

I have my fingers crossed for you. I am glad he is feeling better now.

I'm so sorry you're going through so much, that all sounds terrible! I'm pleased he is feeling better now, and really hope things improve and you have a lovely Summer. Stay Strong Honey! xxx

thanks for all the msgs, it's really helping me get through this time. am just keeping my fingers crossed for a positive outcome from next scan.

For anyone still interested in this thread - have good news about ds. He had another mri scan in early August. Dh spoke to one of the consultants two weeks ago who hasn't been directly involved with ds so she could only read out the radiologist's report on the results of the scan but basically the lump (which she called an oedema) has gone but it has left a lesion behind, presumably like scar tissue, so he doesn't need another mri until next August as they are not too concerned about this lesion, other than he still at risk from seizures, although he hasn't had any since his virus in June.

All good news, can't believe the lump has gone and feel so relieved that the drs aren't too worried about him anymore. We still have some questions about what the lump was and the possible implications in the future of the lesion and obviously there is always the potential for him to have seizures and that something else could always happen (you can tell I'm a pessimist!) but compared to six months ago when we thought it was a tumour and that he was going to end up having major surgery it is great not to have to worry about it quite so much.

Have an appointment with ds' consultant in November so hopefully he can give us a bit more detail.

Thanks again to everyone who has given me support whilst this has been going on and sorry for not updating sooner but there hasn't been much to say really as he's just a normal baby!

That's fantastic news maxmissie and thanks for updating us.

really pleased to hear this

Im so pleased for you, what a traumatic time you have had.

Hope the other poorly children are all doing wellx

Fab news!!!! xx