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Baby son - MRI bad news

(29 Posts)
biglill Tue 30-Jul-13 16:37:24

Hope this is the right place to come, apologies if it is not.
My baby boy contracted group B strep meningitis at birth 10 weeks ago, he was ravaged with it and we came close to losing him. He fought hard and did however pull through. We then had the MRI and were not prepared for the news we received. From what I managed to take in, there is damage to the basal ganglia and elsewhere which was described as 'startling', they predict spastic quadriplegia, severe CP and learning difficulties, in fact they seemed to think we should be prepared for anything and were unsure if he would be able to even swallow etc.

I have never been so frightened and lost in all my life and ten weeks on can only hope I have misunderstood or it is all just the worst of bad dreams.

After five weeks in hospital (and another meningitis scare), he is making (I think) good progress. He breastfeeds (which they didn't think he would manage) and has just started smiling at me occasionally, is tracking better with eyes - although he prefers looking to his right and does this most of the time. He still has no head control.

I'm not sure what I want to hear, I guess some words of positivity from people who might actually understand. I was told I would go through a grieving process and should allow myself to 'fall apart'. I don't want to do this though as I have a two and four year old who need me to be strong, my baby needs me to be strong and positive surely too and why grieve when my beautiful boy is here with me and smiling? I do get very sad though of course and can't bare to think what the future might hold for him, I just feel so sad for him and angry too that I wasn't tested for this infection.

Bluebirdonmyshoulder Tue 30-Jul-13 16:42:02

So sorry to hear about what you've been through.

I'm not in any way medical but the progress you mention is surely a positive sign?

What support are you getting at the moment? Have you been referred to services like portage for the future in case it's needed?

zzzzz Tue 30-Jul-13 16:59:26

I have never done the "grieving for the child you thought you had". It doesn't sit in my understanding of the world and how our family works. I get the idea, but couldn't and didn't need to embrace it.

When my youngest was 10 months old she and her siblings got strep, the others went on to develop scarletina. They were ill for about a week and then got better. Dd had a seizure, and then another and another and another. It took 57 days to control the seizures. She "forgot" how to use her left side and she could no longer recognise faces (or at one point me). Finally we found a drug that would work. It took more than 6 months to wean her from the cocktail of drugs that didn't work. She has had several relapses since and the drugs to control her epilepsy have side effects including selective mutism, anxiety, reduced ability to learn, slowing of processing speeds, tingling and pain in her hands and feet, anorexia, and innability to regulate body temperature.

She has done better than could ever have been imagined, certainly better than those early days seemed to suggest. She is extraordinary and very loved.

I know you are in a dark place, the hospital alone is hard to bear let alone the worry. How you cope and how you rationalise it will and should depend on you. Dd's last stint in HDU was only 18months ago, but I already find it hard to remember those bleary days.

I'm not sure why I've posted or how to help, but I have been there (or somewhere near??) and our outcome was good.

biglill Tue 30-Jul-13 17:31:53

I've never heard of portage. What is this? With regards to support I just have the HV who has said 'we are here if you need us', we also have open access to the hospital ward. I don't know whether the progress is good tbh, I tell myself it is to help me get through but I try not to get ahead of myself as from my understanding it can be one step forward and two steps back. As stupid as it sounds I just don't know what to expect and am deliberately not asking questions as i'm so scared of what the answer might be, don't feel I can take any more bad news.
zzzzz it sounds like you have also had a right ordeal and it is definitely helpful and interesting to hear of other people's experiences, just good to know i'm not the only one. Particularly nice to hear that your dd has exceeded expectations.

beautifulgirls Tue 30-Jul-13 18:59:37

Please get in touch with the meningitis research foundation. They have a large number of people who can answer questions and support you through this difficult time. DD3 had strep A septicaemia (no meningitis with it) two years ago now and they were so helpful to us in the days after she came home. They will have people who have been there too if you would like a contact family to liase with and have some more personal type support too.

Babies are learning and changing all the time - I really hope your little boy is going to be able to show the professionals how wrong they can be sometimes. There were days I never thought DD3 would do the things she does (she lost half of her foot through it) but she is an amazing little girl now and lets nothing stop her.

cansu Tue 30-Jul-13 20:42:20

i think the grieving came later for me. I never fell apart publically when my ds was diagnosed with autism but I was a mess in private. I also kept myself quite deliberately ignorant because I just wasn't ready to know too much about the future. I can totally understand the need to be positive but would also advise you to find someone you can share your worries with. I kept everything under wraps and the result was panic attacks and I also now stammer a little when stressed. I believe this is the result of the stress I have been through. I suppose the most positive thing I can tell you is that you will adapt and your ds little triumphs will be v special to you. I was over the moon when dd (also autistic) first called me mummy. I am also always really pleased when ds does something age appropriate - we were really proud when he managed to eat at Mcdonalds after years of refusing most known foods! My life is not what I expected but I have survived and am probably a more compassionate person than I would have been. Take care of yourself as well as your ds.

Bluebirdonmyshoulder Tue 30-Jul-13 22:55:52

Portage is very early education for children with, or who are likely to have, special needs. It is excellent and really makes a difference. It's basically very targeted forms of play.

If you have a community paediatrician then ask them for a referral. If not ask the health visitors or actually maybe the ward. Do not take no for an answer - your DS may not need it but at least get in the system to cut down on waiting times.

If you get no luck then ring your local authority (portage is an education service, not a medical service) and ask for the Early Years team or something like that.

lougle Wed 31-Jul-13 13:47:06

Hi Biglill, congratulations on the birth of your lovely DS. I know that his early days haven't been as you expected, but have hope that he can make progress.

Do get portage on board if you can. You may well be able to self-refer.

Scans don't always make great predictions. I know of people with very minor disturbance, or none, on scans with quite profound difficulties. Equally, children with quite devastating MRIs can be practically normal in development.

It sounds like you're already aware of the things your DS is lagging slightly in. If he prefers to look to the right, you may want to try and hold things to his left, just in sight, so that he is drawn to them.

Hang around here - tell us about your DS. I bet he's gorgeous!

Madge72 Wed 31-Jul-13 23:04:11

Please don't despair! My DD has CP and is quadriplegic and although that sounds really scary and she can't crawl or walk (aged 5), she has progressed so much since birth. She was premature at 2lb 11oz and we have been through some tough times with her already. However, she is so unique and special to us and everyone around us. Adorable and smart too. She gives us so much joy and we cherish her so much that we spoil her too much at times.

We didn't go through that grieving process either as she is the child that she is to be, but obviously the initial shock and fear of the future is very scary. It's still scary and I guess we will always worry about her future like all parents but she changes and we don't know what the future holds either. Nothing ever stays the same forever and we make plans but live in the here and now. It's also important to us to make the here and now fun and normal and not to be anxious all the time as we would only miss out on enjoying her childhood. It's a different parenthood to the average able bodied child, but it's her quality of life we focus on which in turn has enhanced our lives.

I know what you must feel and it can feel lonely but once you know you are doing the right thing by your child, which you will, as there are some hard decisions at times, your outlook will become more positive and your child will thrive off that and the environment you provide and you will be surprised by what he will achieve.

You are not alone and there are so many great support groups and forums where people share their experiences and it will get better. It just takes time to see how your child will grow, how you will grow with them and time to understand and educate yourself on what you can give them as a parent.

Sorry if I sound direct, but I feel like the stronger parent that I probably wouldn't have been if I had not had my daughter (if that makes sense?)

I wish you all the best on your journey and by sharing your concerns already, I think you are already taking steps to be prepared, even if you may not need to be.

xx

ImStickingWithYou Thu 01-Aug-13 09:12:22

My son also contracted Group B Strep meningitis but pulled through, just! We were in hospital for 3 months and he couldn't feed anymore so was fed through a tube until he was 6.

They tend to give you worst case scenario because they don't really know. They can prove damage has been done but can't always predict how that will affect each individual baby. I remember having to go back to hospital a month later and saw one of the doctors who gasped when ds smiled at him! They didn't think that would even be achievable but they hadn't told me that!

You probably already know of this charity, but just in case, contact the Group B Strep Support charity at www.gbss.org.uk

If you need to chat more, pm me.

Oh btw, my ds is now 11 and about to start secondary. He is doing so much better than we ever expected. The meningitis only left him with some minor problems but he is a complicated boy who has other, more severe, medical complications! However, even with these he is doing better than expected and I am proud to say (boast, boast) he just got Level 5 SATS when he had surgery only a week before taking them!

Also, congratulations on your new baby boy. Although this is a whole different start than you were expecting it is still the start of a wonderful new life.

xx

inappropriatelyemployed Thu 01-Aug-13 13:51:56

Firstly congratulations on the birth of your son but I am so sorry to hear about the distressing and traumatic experience you have all suffered.

I think the advice to contact organisations with more in-depth knowledge is good. Don't be afraid of asking all the questions you need to and ask again and again until you are happy with the answers.

I don't know if it will help but my older brother had meningitis as a baby. The prognosis was grim and they thought he would never walk or talk.

Today, he has his own flat, although he needs support, he has a job, friend and way too many hassles in his love life for me to cope with. He pays his bills, goes to the pub, reads, writes, plays football

All I am trying to say is no one's future is certain. No one's. Try and take this one step at a time and get all the support you need.

inappropriatelyemployed Thu 01-Aug-13 13:52:38

should be friends not friend..

PolterGoose Thu 01-Aug-13 14:01:27

Congratulations from me too, your ds sounds very lucky to have you flowers

PolterGoose Thu 01-Aug-13 14:04:27

Sorry that probably sounded a bit dismissive, I meant to add that I don't have anything to add to what others say as they know more than me, and send you best wishes for the future flowers

beldaran Thu 01-Aug-13 15:06:51

Congratulations on the birth of your son!

My DD also has spastic/athetoid quad CP following a subdural haematoma during birth. She was in hospital for 3 weeks and was diagnosed following an MRI like yourselves. We were also advised that they couldnt tell us how badly it would affect her as cerebral palsy is a huge umbrella of a condition but we were advised that the damage shown indicated it was very severe(no motor skills, vegetative state) and the consultant was quite surprised by how different to her diagnosis she was. She still has gross/minor motor skills issues (cant walk, sit, stand or feed herself) but her intelligence is off the chart (pfb moment there sorry), chatty, sociable, outgoing and active.

I know this is unmumsnetty but i am going to give you a hug as i have been that frightened mother wondering if my precious DD would die and i know how hard it is and how scary it can be.

I don't think i've "grieved" as i havent really lost anything, but people process things in different ways. I did find that at around 6 months old, when all of the support was gone and people had gone back to their lives that i suffered (and still do) with post natal depression and i have had counselling and i am still on anti depressants. I want you to know that if you need to ask for help with the mental and emotional side of things then ask sooner rather than later and it will not make you any less of a person.

My DD is almost 7 years old and had intensive physiotherapy from around 2 months old, followed by a placement at a conductive education nursery and is now in a special school and has just won the summer term merit award for hard work.

I hope this helps reassure you somewhat that there are people out here who understand and will always be here to help you.

biglill Thu 01-Aug-13 15:27:26

Thanks so much ladies. I can't tell you how good it feels to finally talk about things with people who understand. The fact that you speak with such positivity about your loved ones helps me to realise that I will be able to do that one day too. It is wonderful to hear of their achievements and allows me to actually dare to be excited about what my little man might also achieve. He has just had a physio session and managed to lift his head clear of the ground for a very short moment which made me so proud and has given me hope. Thanks also for the advice on the services I should be aware of, the hospital and paed have been great but their has definitely been a lack of information put forward so far on what is out there for us to access.

Thereonthestair Thu 01-Aug-13 16:23:45

well done lillbiglill. that's a really good sign.

Another one here with a DS with CP. We never had an mri because we didn't know there was likely to be a problem, and then by the time we did we knew the mri woudln't tell us anything about what the future would hold. In effect we believed then, and believe now that although an mri may tell us about damage, it wouldn't tell us about function. because when babies are babies noboday really knows.

the main tip i remember from when DS were diagnosed is never cancel anything fun for physio or therapy.

I just wanted to offer you a hug, and to tell you that you and your son are in my thoughts, and I am sending you lots of positive vibes.

MaccaPacca123 Thu 01-Aug-13 20:51:18

Hiya. Just popped in to say you should apply for DLA if you haven't already. It's meant to go towards the extra costs of disability, so not means-tested.

Carers allowance is linked to it, and there's an additional disability allowance if you get tax credits. If you google 'Cerebra DLA guide' it tells you the sort of information DWP would like, to help them decide whether a dc is entitled to DLA, and if so, which rate.

Most people wait till they have a quiet day for the form. If you do that, remember to write how things are on a typical or average day. And include anything care needed at 'night' too (eg 11pm-7am, or whatever it is in your house).

MaccaPacca123 Thu 01-Aug-13 20:56:25

Btw, don't 'not' claim. It's your ds's money, if you're lucky enough not to need it right now, save it for something useful. You'll soon have the cost of a few physio sessions, some music therapy, or the occasional 'switch' operated toy.

TOWIELA Thu 01-Aug-13 20:57:06

congratulations on the birth of your beautiful boy!

Take little steps and one day at time.

The ladies on this board are fantastic. Kind, generous and highly knowledgeable. Keep coming back and telling us your DS's progress.

On hols, on phone so can't respond in full but wanted you to know that yesterday I met a 17yr old with 3/5 of his brain missing. He has just got an NVQ level 2, been offered a Job in John Lewis where he was doing some voluntary charity work, has a variety of hobbies and was surrounded by friends.

I'm so sorry that you have to cope with both the MRI results AND the belief that it coukd have been avoidable. That must at times be unbearable though it will get easier.

marchduck Fri 02-Aug-13 01:21:55

Just wanted to say hello biglill, and congratulations on the birth of your DS. Sounds good that he is already exceeding some expectations - so brilliant that he is breastfeeding, and proving them wrong already! (I tried to breastfeed mine but gave up with both after one day blush). Your DS is a wee fighter.
It's hard when SN comes to your door. I never expected it; but it arrived, suited and booted. I can completely understand why some parents/carers feel it is like a grieving process. I didn't ever feel like that myself, but I did feel sorrow and fear. That said, DD is the apple of our eyes, and we have a great life.
This is such a good place to read and to talk. Do you have any support from family or friends - it must be so hard to be dealing with this as well as looking after your two older DC? I have seen recommendations on here before about SureStart being very helpful, if it's in your area.
Please look after yourself, and all the best to you all.

hazeyjane Fri 02-Aug-13 06:51:28

Just wanted to say hello, congratulations on your beautiful baby boy, and I am glad you have found mnsn boards, I have found so much support and friendship here since having ds, and hope you do too.

It should be possible to self refer for portage (google your local service) - our portage worker has been fantastic, and pointed us in the direction of lots of other support.

Tootsandblanket Fri 02-Aug-13 16:22:41

Hello and congratulations on your little boy! I can't add anything really to all the great advice that's already been posted, I'll just add my little story of DD who we were told would not be capable of meaningful movement at all...well she is in front of me scaring her life out of me by climbing up and down the sofa and back step!
Tap into all the therapies you can- you mentioned phsio, how about SALT? Portage has already been mentioned. We had music therapy for DD from 6 months and this has helped her enormously.
Be kind to yourself . It's alot to take in.

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