Brain lesion

[Albaba]

I have got 20 month old twin girls born at 33 weeks. I had Iugr, discordant growth and blood flow problems. Twin 1 has been late in meeting all her milestones and was diagnosed with developmental delays and low muscle tone. Has been attending physio for months. When she first started she couldn't even sit unaided but can now do this and pull to stand when holding on to setee or cot. She still however crawls by pulling and dragging. She also has a squint in her left eye. Had Mri scan and I had convinced myself that it would come back clear and that she was just a slow starter. Husband phoned consultant today and she said that it showed a lesion on her brain. To schedule a meeting with us to discuss. Does a lesion on the brain always mean cerebal palsy or can there be such a thing as a good brain lesion? I feel really guilty as her sister is walking and climbing. Ironically the affected twin was the bigger and stronger of the two. I feel really guilty that it was something I did or didn't do and am worried about what the future holds for her. Other than the movement issues no concerns. She is bright and uses more words than her sister.

My dd has suffered from brain trauma at birth, so I was where you are 5 years ago.

I am sure you have been told that before, but the brain is an unpredictable organ.

My dd has sn, but each child will progress differently- key word being progress

Make sure to track as much as possible, and enjoy your dc too.

Please don't panic. The fact your dd has a slight developmental delay would indicate at some point there was some damage causing this lesion in the brain. I know that sounds terrifying but damage caused before or at birth are stable, they don't change and they don't worsen. With physio and work this damage can be worked around and new connections form but its likely there will be some problems but its also possible these will be so minimal it does not affect her in a major way. Your daughter is doing well generally so to me this is very promising. It's probably PVL associated with walking difficulties but there are now major breakthroughs with this particular problem so the future is not bleak a all.

dd2 has brain damage, squint etc. (she does have cp)

20 months corrected?

Dd2 met all her milestones, just very late. The fact that dd1 is making this great progress at 20 mos (corrected or not) is fabulous, honestly. and the speech is great!!!

I don't think there is such a thing as a good brain lesion, if I'm honest, but cerebral palsy sounds a lot scarier than it often ends up being.

Do schedule a meeting with the consultant to discuss, but also ask for a debrief from the neurologist as well. Tis can be very helpful with brain related stuff, as often paed consultants don't have the specialist knowledge.

Keep up the physio etc - brain plasticity is amazing, and you are right in the thick of building up fabulous new pathways and creating development and ability.

Do make sure you discuss DLA with the consultant, if you are not already in receipt.

Thanks for your replies ladies. My daughter is 20 months old actual and 18 months old corrected. It is all just really frustrating. We had hoped that our daughter was just a slow starter and would get there eventually but having heard the news that she has a lesion on her brain this is looking unlikely and looking like she does have some sort of issues. In my head I am about 90% sure that she has cp. She is bright and if you said a word to her she would watch your mouth and repeat it back to you. No problems with her arms and she doesn't clench her fists at all. However she is weak on her lower limbs. Moves both legs and doesn't obviously favour one over the other. Can now pull herself up when holding on to furniture and we are working on side stepping. She just seems weak and can't hold herself up for very long. She is getting to the stage now were she is getting too heavy to carry. Her twin sister is also a permanent reminder of what they both should be like. She is now walking, climbing stairs and all over the furniture. I always imagined walking to nursery and school with one of them in either hand. It just all seems really unfair especially as they are twins it makes them obviously different. I think the affected twin gets frustrated too as she would cry quite easily. I have tried talking about it all to my husband. What if she can't walk? What if she has special needs? He just seems to be blanking it out and pretending that it is not happening. No-one else in real life knows about the brain lesion. Consultant to schedule a meeting with us in person. On one hand I hate the not knowing but on the other hand I am dreading what she is going to say. Our daughter had head scans when she was in NICU which didn't show anything. The Dr described these as crude scans. We had to wait 6 months for a MRI so it has been a very long drawn out process.

You sound just like me and my dd. she's 15 months and has slight brain damage from birth. She didn't sit till 13 months and can't move around at all luckily though she's still a bit light! (19lb)

My hubby is like yours. Doesn't want to talk about the future or what she might or might not be able to do. Frustrating isn't it?! I'm the kind of person that needs to know what's happening and when it's going to happen so the not knowing sends me crazy sometimes! I'm waiting for the report of her scan to be sent and every morning I nearly snatch the postmans hand of hoping the reports here. Could of smacked him yesterday when he gave me junk mail instead but I've learnt that at the end of the day she's who she is and I can't change it and I don't think I would. She's a proper little character. Currently sat on the sofa eating her toes she's as bright as a button and loves doing stuff to make you clap.

Does your other twin try and help her? Kind of like show her what to do? I met twins once who was like yours and the able twin was amazing with her sister so patient and helpful.

I agree with trying for DLA. We was given it on middle rate. We got help filling it in from her portage worker which might of helped us get it straight away

Thanks Beanypip. It's good to hear from someone who understands and is in the same position as us. My daughter too didn't sit until 13 months actual age, 11 corrected age. Was your baby premature or did you have complications?
My twins are completely different people. The affected twin is more reserved and cries quite easily. The other twin is like a dynamo and wouldn't sit still for two minutes. They don't really seem to interact much except to pull each others hair or hit each other over a toy!
No-one has mentioned DLA to us, what it is or how to go about getting it? I don't even know for certain that my daughter is disabled.

Your other twin sounds like a normal whirlwind toddler must be hard though them not being at the same stage.

Mine wasnt early (everyone always finds that hard to believe!) infact she was 11 days late. Was a hard labour for her ending in forceps and assisted breathing then pneumonia bless her.

Have your health visitor/gp been helpful? Have u been referred to any services? If you haven't heard anything about portage it might be worth asking your health visitor about them. They come to the house and learn through play and they take on what the physio advises they also have groups where u can meet other family's in the same position (well they do in the north east )

As for DLA I always thought we wouldn't get it for her as she wasn't classed as disabled but its for any child that needs extra care over a 'normal' child. Which mine (and yours) is classed as due to extra Hosp appt/physio etc. it's handy to have and save just in case she does need anything in the future. We have spent a fortune on toys that are to help her sit/stand/move in anyway. She normally sits there laughing at me trying to show her how to use it

Our DD is now 4, and at the age of 2 she was diagnosed with Spastic diplegic cerebral palsy. She was born at 27 weeks, and all the head scans in SCBU had come back clear. She sat at 9 months, crawled at 15 months, pulled to stand against furniture at 15 months as well, but never stood alone. In fact, a few days before we got her diagnosis she stood unaided for the first time and then took her first steps.

Diplegia means that both legs are equally affected, but arms usually unaffected, and for DD her muscles are tight (spastic). She hasn't actually had an MRI yet because she presents so typically. She now walks happily although has far less stamina than her peers. We also have a wheelchair for going any distance, and get nothing but positive comments about it (Bright pink with pink and purple bubble stickers on the wheels).

One thing our physio has mentioned is that the problems DD seems to have with shyness and being very reserved are part and parcel of her CP. She has to concentrate so hard on staying upright and moving to where she wants to go, that if there is a lot of bustle and movement around her she struggles to cope. Also she is aware of her own vulnerability, so when other children come too close to her, she tightens up and is more likely to fall. We now have 1-1 support at preschool for her which will continue at school when she goes. The 1-1 is not there for educational difficulties - she is above average at the moment cognitively - but to make sure she's sitting safely, to support her when she climbs the climbing frame, to check her in the toilet, etc. Purely physical needs.

I can see where your DH is coming from - he doesn't want there to be anything wrong and if he ignores it it might go away. Thing is, it probably won't. However, you will all grow to cope with it. I still hate CP and I see my beautiful, clever little girl frustrated because she can't keep up with her friends and my heart could break. However, it's her and nothing will change that - she is still a positive, sunny soul who wins everyone's heart!

I agree though, apply for DLA - your DD needs support over and above a 'typical' child her age.

(Sorry, mammoth post!)

When did your daughter get her wheelchair? Did u have to wait ages for one? We are worried about that for our dd as we are both classed as disabled with various physical problems so we are Hoping we won't have to be carrying her when she's 3 or 4!

I can't speak to DLA as we are not in the UK, but Bee has a significant brain lesion (she had a large stroke as a newborn, and a second one about a year and a half ago).

While I won't pretend that it has been smooth sailing, I can say without a doubt that no one holds a crystal ball. Be "should" have spastic hemiplegia (one side affected, hand more severely than the leg). She has mixed type diplegia instead (her legs are more affected than her arms, but all are affected, and she is mixed type - some spasticity, some pretty severe hypotonia, and significant ataxia). She is VERY verbal, despite the fact that the area of the brain that is "supposed" to be responsible for speech does not actually exist (there is a very large cleft where it used to be).

Don't allow anyone to dictate what your beautiful girl's future will look like. I have a dear friend who has twins, one with spastic tetraplegic CP (at the age of 6, she was already controlling her power wheelchair with a headrest switch array) and the other has a hearing loss, but is otherwise typical. She says the hardest part is not comparing them to one another, but if she had listened to what the doctors said about them and not encouraged them to find ways to do what they could, they would both be far worse off. She says most days that the "less disabled" twin is usually the more challenging child.

Bee is not "average", but in light of the fact that she had a rough start and things didn't end there - she is doing remarkably.

Beany, she got her wheelchair just before her 3rd birthday, having been assessed for it at 2.9. It was about a 10-12 week wait. We went for assessment for a SN pushchair (referred by OT) but asked whether we could have a wheelchair instead, as we felt it was easier for people to understand than a larger child in a pushchair.

I know what you mean about pushchair v wheelchair my cousins daughter needed help walking and her mum refused to get a wheelchair as it put a label on her daughter as being disabled but people comments about a 4 year old in a pushchair were worse. She couldn't leave the house without one bad comment about her being lazy so she got a wheelchair and everyone was really nice! Plus those sn pushchairs u can buy from mothercare are ugly I think. I'm assuming that wheelchairs also give more support than a standard wheelchair. My dd keeps giving me the bubbles to blow and telling me off for typing and not blowing!

Bee's first mobility device was a SN "stroller style" wheelchair (with lots of additional supports - laterals, foot straps, abductor) before she was 2. She was VERY small (19# at 3 1/2) and I would always get comments about her "fancy stroller". Finally I lost my patience and told one particularly prying woman "With a disabled child and $5000, you can have one, too!"

A couple of weeks later, we ordered Bee's first wheelchair. By the time she was 6, she was being trained with a power wheelchair, and now that is her main mode of transport outside of the house.

Did they notice straight away bee had her condition or was it over a length of time that she was diagnosed? I never know what to tell people when they ask what's wrong with her

Bee was 3 weeks old when she had her first stroke, had glasses before she was 6 months old, splints on both legs and one hand by the time she was 13 months. It kind of "said" itself.

I will be honest - the phrase "what is wrong with her" is not one I love for Bee... for several reasons. 1) it is not a simple answer. She has several rare conditions (mitochondrial encephalomyopathy, mastocytosis, epileptic encephalopathy, Fanconi syndrome, idiopathic coagulopathy, infantile ischemic stroke, myelodysplastic syndrome and so on...) but while all the medical professionals believe they are related, no one has been able to tell us how; 2) nothing is "wrong with her". She is different, but not defective, if you know what I mean. Bee is acutely aware that she is different from the kids who live in our area, but for now, she doesn't really care. I don't want her equating her differences with being somehow wrong or bad; and 3) if it is really their business, they will likely already know, I will have volunteered it - if it isn't, then why are they asking in the first place?

There is an unspoken rule within our little "community" that you just don't ask. Bee is a Special Olympian - aside from the athletes who have syndromes with characteristic facial features, I don't know what the diagnoses of the other athletes on her team are. I don't need to know, and don't ask. On her baseball team, same thing. Sometimes, while the players are on the field or in the dugout with their buddies, parents talk. We all "get it" and usually, if you want to know, you'll ask "what is your DC's primary diagnosis?". When we talk like that, it is usually to see if we share common physicians, or have equipment that can be shared if we no longer need it, or to talk about school accommodations.

You'll find what is the right thing to say for you, and frankly... who to say it TO. Not everyone needs to know, and you don't owe anyone an explanation. Before too long, you will be inundated by well meaning (and not so well meaning) people who will think it is their place to offer you unsolicited advice. You are not obligated to follow it, or even listen to it. You'll also start hearing what an angel you are, how amazing and strong. Be careful not to let people put you on a pedestal - all that means is that when you fall, it'll be a longer fall and a harder landing.

Welcome to the journey - it's a wild one.