Spastic Diplegia just diagnosed (PFB 11mths). Confused and need some support. Can u help?

[Peanut73]

Hi there

My PFB is 11.5 mths (corrected age 9 1/2 mths) Born at 33wks. Two days NICU, 14 days SCBU. One day CPAP.

All was going well, albeit late physical developmental milestones: needed help to roll, sat unsupported at 9 mths, started crawling at 11 mths (but does it well now).

Had to chase up hospital for follow up appointment as hadn't heard anything since 6wk check.

I mentioned that Charlie just started crawling but stood on tippy toes when pulled to standing. After doing reflex tests and stretching his hamstrings/archilles, the specialist said "you have a spastic boy". He went on to say that he had Spastic Diplegia and would need help to walk.

That was it. We have a follow up appointment in a month.

What can I do in the interim? The specialist mentioned an MRI - is this necessary if the diagnosis has been made? I don't want to put his little body through a GA if it's not absolutely necessary.

I have been stretching his tendons daily and they do loosen up a bit but he has no balance at all when pulled to standing and doesn't like it very much.

Okay, I'm flailing about here... just looking for anyone with a similar experience. I know there is a huge spectrum of symptoms, but anything would help as I feel totally bamboozled and go from one second thinking "we can do this, we will get through this" to sobbing uncontrollably at the thought of my PFB not walking.

nice specialist!!! You WILL get through it and your ds will do lots that you wont expect. If he doesnt walk he will still be a fantastic little boy who needs and will give you lots of love and rewards. Your paed will refer you to physios, ot's and maybe other therapists etc etc, and there will be times when you feel like its an endless rounds of therapy, drs and hosptital appt's. You will have dark days and weeks but you will also have so many good times aswell. have a look here. SCOPE is the national charity for people with CP. Stick with mumsnet as well-its full of practical real life advice form mums and dads who have been exactly where you are. enjoy that virtual glass of wine-think I'll join you! My ds is 7yo and has Angelman Syndrome- SLD, non-verbal, epilepsy, was told he wouldnt walk but he does, albeit a bit wobbly and tires/falls easily but he gets around, especially if you mention chocolate!! hope you feel abit better about things soon. Enjoy your baby and try to concentrate on what he CAN do and WILL do instead of the negatives even though I know its hard.

umm seems like you had the specialist similar to us that needs training in how to deliver diagnoses to concerned parents but forget that...
welcome and stop panicking- your little boy is still the same little boy that loves you just the same now as before you were told he had spastic diplegia and you most probably love him more now as you are doing what mums do best-protecting their children...
you have found a great site which will offer you lots of support and yes there may be tears along the way but there will also be highlights and these moments are more treasured(or at least in my household anyhow)

got to dash phone ringing back soonx

Hi peanut.

I have no experience of spastic diplegia but others on this board do so i am sure you will get great support here.

You have a shock and it will take some time to sink in. of course you're emotional. Try and concentrate on the positives and you are doing so well working on his little legs.

My dd was diagnosed 2 years ago with cystic fibrosis and this was a massive shock as no family history of it. I went through similiar emotions of i can cope with this to will she even reach 18 ( twice she has nearly died)

I have learnt to take each day at a time. To celebrate everything she does and not to compare her to other children. Not to think too far ahead and to do her exercises and physio.

we are all hear to help you. I am sure that others with experience will be on tomorrow

i will check back tomorrow to see how things are.

Thanks MMM. Yes, the consultant is a nightmare - no communication skills! The last time I dealt with him was in NICU when he tapped me on the shoulder and said "Are you Infant XYZ's mother?" When I said yes he said "don't go away, I have some bad news about his brain scan but have a lecture to give now so see you in two hours".

Anyway... I feel better already having had you reply... I'm not all alone, and he is a beautiful little boy. I think it's just that period of feeling robbed of a 'normal' baby, and I don't want to sound offensive it's just I have to readjust my whole way of thinking.

Thank you chatee and ilovepeppapig... i crossed posts with you (too slow).

Honestly, it feels incredible to have people reach out to me metaphorically through this forum. It feels a whole lot more personal than reading factsheets on websites.

aww am glad others have replied quickly for you too- need to disappear but will pop back tomorrow if you are around this time9or a little earlier and we can 'chat' if you want to

this board was a lifeline to me and provided me with so much info and positives that i hope you will find that too..

feel like i have the 'been there done that t.shirt on' iykwim

my little one was originally diagnosed spastic diplegia and then changed(oh and no one thought of telling us) to spastic quad!!

Hi Peanut,
My DS has spastic diplegia, he was born prem also but had a bit of a rough first few weeks when we think the brain damage happened. My DS is now 4.2 years old, he does not walk unaided but uses a walking frame and sticks to get around, he also has a wheelchair that he self propels. However he took his first independent steps on Friday so he may yet walk. DS 1 did not sit till over 1 or crawl till over 18 months so he has always been delayed physically. However he talks very well, is bright and inquisitive and a caring, kind boy.

Standing on tip toes is DS1's biggest problem and it is this that is hindering his walking. You need to ask for (and get!) regular physio input, it would be worth getting occupational therapy and speech therapy also, you may not think he needs all of these but if there is a waiting list it's best to be on it now, even a thorough assessment by each of these would be beneficial.
In the mean time a specific physio thing you could do (cause it always feels better to do something!) is to help and encourage him to stand as often as possible while gently pulling his ankles down so that his heels touch the floor. The more his heels tough the better the brain learns that this is the correct way to stand and the easier it is to reroute the brain around any damage. (A long way of saying it helps!)

With regards to the MRI, CP is usually only confirmed by an MRI as there are a couple of things that can mimic CP, however with your DS's history of being prem it is unlikely. The MRI can show and give some indication of where and how extensive the damage is but does not always give an indication of what the outcome will be for your specific child. Good physio is one of the best things that can help get a better outcome!

Sorrry this is such an essay, am watching TV also! I hope this is of some help, feel free to ask any more questions, there are a few of us on here with DC's with spastic diplegia. I think your consultant could have done with a better 'bedside manner' as that is quite a hard way to hear about a potential problem!

Take care

god that is so offensive referring to your ds as a 'spastic boy'. I know where you are now, shock, disbelief, confusion. But one think you are not is alone. There are so many people here with the knowledge, kindness and support to get you through. Although it might not seem that way now, it is great that he has been diagnosed at such a young age, he can get the help he needs much sooner. Crawling at 11 months is amazing . My dd has spastic diplegia - crawled at 18 months, walked with a walking frame at just over 2 and I am proud to say that this week at just over 3 years old, took her first steps on her own . Life is different, it is not what I had planned but you know, life is not bad at all. The biggest thing you will learn is to start being a pushy mum, ask for referrals to physio and OT and as Hairy said an MRI could be useful.

If there is anything at all I can do to help please let me know, don't want to bombard you with info but would really recommend you have a look at Conductive Education - we go to the Rainbow Centre in Fareham and is it amazing. www.rainbowcentre.org/

P.s the scope website is good but the forum is really slow and not that well used so I tend to ask most of my questions here!

OMG - HairyMaclary (great name by the way - I am a kiwi and those books are staples), and HangingBelly - thank you so much. I just read your responses to my husband and he too is in awe.

Can I just say massive congratulations to both of you seeing your DS and DD's first independent steps!! That must make you swell with pride and it brings a tear to my eye so it must've to yours too.

Just looked up the rainbow centre - it looks amazing. Why don't we get told these things, given a brochure or something?

Thank you!

Hi Peanut! they never tell you anything... that's what mumsnet is for! Glad to be of service, anytime.

I just looked at your pics-hes beautiful!

re Rainbow - Cond Ed., have a look here. www.cplondon.org.uk/
I have friends who use Cond. Ed for their children and they think its fantastic. You can get funding to attend form various charities and trusts. whilst I think about it, keep in mind that you can apply for DLA, Carers Allowance and help from the Family Fund-I'm not sure if age restrictions apply because your baby is so young??? It feels like a lifetime ago when I applied and my brain is frazzled now-sorry!!

Hi Peanut,
DS was born in NZ where we lived at the time, we love the books too!
Whereabouts are you, if anywhere near london we did conductive ed also, there are a lot of different therapies out there some excellent, some not so. The Bobath centre is another one, it is often the place where physios train in the NHS style of phsyio. WE also go to a place called footsteps that is very similar to the Bobath style of phsyio but with added extras! However private physio can be very expensive and it may not be necessary for your son, it is however good to know that there is stuff out there. our conductive ed place and I think the rainbow centre work as a charity and are therefore free or very cheap.
I'm going to stop know as I could just bombard you with stuff which may not be helpful, do ask though. As Hanging Belly says mumsnet is the place to find out all the things the professionals didn't tell you!

Hi there, my dd1 was born at 27 weeks, and is now 8. She was originally diagnosed with left hemiplegia, but as time went on it was obvious that both legs are involved, so now she is considered a child with diplegia with left arm involvement.

Can you self refer/get referred to portage locally? I found portage a great help, for dd and myself.

Our lifeline was ~(and remains) the most fabulous Physiotherapist at out local hospital. She knew dd as a prem infant on NICU, and is still her physio now, 8 years on. (She is an inspiration)

We are in SW London.

HI peanut my ds2 was born at 28 wks, he is 6 & has a dx of mild spatic diplegia, he also has ASD.

He is 6 now & walks very well unaided. He ahs never had an MRI his dx was given based on examination & history.

Monstermansmum - I looked up that site but I'm a bit confused... is it a school or can babies get treatment there? Forgive me if I'm being obtuse, my brain is fried.

Hairy - I am based in Islington, North London. Where did you do conductive education in London? We just found the Bobath Centre online and will ask our GP for a referral. Footsteps sounds good, esp if it has more to offer.

Pheasant - I had to look up portage on google to even find out what it was. I hope we can qualify for it... so much to look into. Glad to hear it helped you and your DD1.

Anon - That's wonderful that your DS2 is walking unaided... it gives me so much hope.

Quick question, and one I feel a bit weird asking... I was made redundant during my maternity leave (which is up this month) and so I have just applied for Jobseekers Allowance which I now realise isn't probably ideal with DS1 requiring so much help now.

Having had a brief look online it appears I can apply for DLA (not the mobility component)... does anyone have any advice on this?

Thanks - you are all amazing.

yes to dla, nightmare form but worth it. Good info here: www.cerebra.org.uk/parent_support/DLA_guide.htm.

Hi DS1 was diagnosed with spastic diplegic cerebral palsy at 19mo and has just started walking at 3 years-ish. He was born at 31w and is hypotonic, so his muscles tend to be weak rather than tight. The best things we found were lego duplo (to help his dexterity) and having a really good physio team who showed us how to do therapy through play. Swimming is good too.

We elected not to MRI, partly because of the general anasthetic it requires and partly because we don't want to know how extensive his damage is.

the conductive ed place we used was in SW London small steps

Definitely apply for DLA, has HBOB has said, the form is a nightmare and a bit(!) depressing but it is useful to have the extra help. If you are not working or only earning a small amount you can apply for carer's allowance once your son has DLA.

Re Bobath, not all PCTs will fund treatment at Bobath, our's won't on the grounds that all physios and OT's are trained in that method so we get the same input as we would there. They are conveniently ignoring the intensive input part of it! At the moment I would say your DS is too young for Footsteps and probably doesn't need that level of therapy and may never do, but it's something to store away for the future!

Good luck, but try not to get to bogged down with therapy, appointments, worry and forms! It's so easy to do and a trap I fell into that means that you forget to enjoy your gorgeous little boy while he is so little.

Hi Peanut,

Just wanted to say a quick hello and welcome. My DS is 3.7 and has spastic hemiplegia, although strictly speaking he should be classed as diplegic it?s just that as the left side of his body is far more affected he tends to get classed as hemi. Sounds like your DS is doing amazingly well so try not to get disheartened. DS never crawled, sat at 10 months and walked just after his second birthday. He had a brain haemorrhage due to incorrect and overuse of the ventouse. At a meeting to discuss what went wrong our consultant told us that he had killed babies with forceps as if this was meant to make us feel better

Going from one extreme to anther is very normal ? one minute I?d think bring it on I can handle whatever is thrown at me and the next I?d be crying wondering how on earth I?d ever cope. At this stage nobody can tell you how things will be and that can be the hardest part (everyone was very negative about DS. We were told by the specialist that his brain damage was severe however he is doing much better than I?d ever dared to hope). Do fill out the DLA form, as everyone says it is a nightmare but is useful if you want to pay for private physio etc. Bobath is great. DS has been to twice for block sessions and I found them a great help.

It is so overwhelming finding out that things aren?t going to be as you thought but it will get easier. Concentrate on your lovely boy and how well he is doing and please do remember that the medical professionals can be incredibly negative so whilst it?s not a good idea to disregard what they say it is impossible at this stage to predict anything. I?m in West London not that far from you if you ever fancy coffee and a chat.

Should have added, it's also best you prepare yourself for other people's responses.

Friends and family often need some explanation of what CP is and what it means. The worst one we got was 'DS1 has CP' and the person replying 'oh I'm sorry'. DH usually replies, 'why, did you cause it?', I usually introduce it with 'DS1 has CP. He also has brown eyes and is a Taurus'. It just normalises it a little. Our DS's CP is just as much a part of him and who he is as the fact he loves peas and hates chips.

Your LO is just as wonderful as he was before the diagnosis and as others have said, he's making great progress.

hi peanut

dd2 (5 weeks scbu) was diagnosed with spastic quadriplegia, sat at just past 12 months, crawled at about 16 months, used a standing frame from 12 months, walking frame from 20 months, and now mostly walks independently. she's 5 and goes to mainstream. her dx was changed later to athetoid cp and ataxia, but her whole body is affected.

ds sounds as though he's doing fabulously , and your consultant sounds like a numpty.

i won't say the first year or two after dx isn't hard work, but i will say you do get through it

dd2 is quite hilarious - having been told she wouldn't speak (we can't shut her up), wouldn't walk (she goes to ballet) and would probably have learning difficulties (she taught herself to read some time before school and is yg&t list lol), we now know that a large part of what doctors tell you is guess work. even when they have an mri in front of them.

ds's cp will be a very small part of who he is. the biggest part of our ski holiday at half term wasn't the adaptive instructor lol, it was dd2's first crush ...but if you're going to have a first love, a ski instructor is a good place to start, eh?

dd2 sees no boundaries, and wants to skateboard next.

sending you lots of strength whilst you work your way through the shock and awe x

Hi peanut, just read the thread, lots of good advice on here, your ds does sound as if he is doing very well.

My ds2 is very mobile now but didn't roll over or sit unaided until he was over a year old - he runs around now. Just uses a w/chair for distance & wears splints for support.

A good physio is essential, swimming is fantastic & the best advice we were given is to treat himas any other baby, tickles, rough & tumble all good at getting the muscles moving.

Also get an OT assessment as earlyas possible, ours helped so much witht hings like fine motor skills & also visual perception difficulties (which can sometimes effect children with cp) for ds2 he could not judge depth or distance etc.

Have youa good HV? Also look in to sn mother & toddler groups, not for your ds's beneift , but for you. It can help to speak face to face to others who may eb armed with lots of useful info.

Had forgotten about swimming, I used to take dd a lot when she was little, it was great.

Just wanted to say hello as I am in a similar place to you at the moment - my DS is only 5 months old and has CP although it is too early to know what type, seems his arms are more affected than his legs. It sounds like your LO is doing brilliantly. Sometimes I don't think I can cope but it is very helpful to read about all the responses on here and know that people do get through this time and come out the other side - I think the first couple of years are going to be hardest. I called the scope response line and they sent round their regional rep to visit us, she was really nice and helpful re all the things which are available in our area so would recommend contacting them. Have got DS on an introductory session at the Small Steps school which someone mentioned which I am looking forward to - although they have said in their letter that I should be aware that he will be the "tiniest tiny stepper" in the session so I think he will be a lot younger than all the others - I am obviously being a pushy mum already!

Thanks for the advice on DLA - I will do it asap. Weirdly I have this 'guilty' feeling about doing it, like I'm capitalising on DS's condition. But, having been made redundant whilst on maternity leave and now on Jobseeker's Allowance, it would take the pressure off having to go into Jobcentre Plus every two weeks! I've never claimed any benefit in my life until a week ago, how life changes! Thanks for the link to the Cerebra site HBB.

It's interesting hearing what people have to say about consultants. AAW I am in shock at your forceps story...

madwoman - your daughter is amazing. She sounds like such a character too.

anon - thanks for the recommendation to see an OT asap, I will look into that. I should also phone the health clinic. I've only ever seen the HV once when she came home when Charlie was out of SCBU.

badkitty - pleased to meet you. Sorry for my late reply, is it really Friday?? You have received a very early diagnosis. I will definitely call Scope after hearing that - thanks! Good on you - I think we are learning you've got to be pushy or you get pushed over.

Have great weekends all!