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Hydrocephalus at birth and brain damage(11 Posts)
Does anyone have a child who had hydrocephalus at birth and subsequent brain damage- in our case because it wasn't detected for a few weeks? My DD is 10 now, and has a range of cognitive, social, academic and physical issues because of this. But she is currently being tested for ASD as well. I'm trying to work out which bits of her is just her personality, which bits are asd and which bits are due to the hydrocephalus. I don't know many people whose children have had this problem so I would be grateful for any experiences or any descriptions of what problems your child has so I can get a bigger picture Thanks!
Not personally but a good friend has a child who had hydrocephalus at birth. He's a similar age now. He is bright probably above average, but definitely has brain damage. He is visually impaired and very uncoordinated, but not dyspraxia. He has a shunt and also struggles with sensory stuff especially I ally noise. He is also physically delayed. So for example he's only just learnt to ride a bike at 10, but he has learnt. He has not got asd as well, but if I didn't know asd had been ruled out I would think he did have asd. He's the child I know who makes me think labels aren't the key to anything much and because he doesn't have asd the parents really had to fight for his statement.
Not really sure what you want to know but will answer if I can....
DS2 has hydrocephalus due to prematurity and brain bleeds. He had a shunt at 5 months. No trouble with shunt and he's now 4.5.
As he approached school age, it became clear he wasn't ready. Behind physically and emotionally but more at the low end of typical IYSWIM. We delayed his start and he is working with an OT on physical side. First, we thought it was dyspraxia, but now seems to be low muscle tone and sensory processing disorder.
As more demands are placed on him at school, his behaviour is getting worse and I think some of the things he does - his inflexibility, his shutting down when overwhelmed - are common to children who have ASD. But they could also be caused by his sensory problems.
We have seen enormous progress physically since the OT started working with him and his nursery who are very supportive. But he does behave like a younger child and things I think he should have grown out of seem to hang around much longer. I have two older DC as well. I feel like I should know what I'm doing, but it is like parenting for the first time again.
I cannot separate out what is his personality, his prematurity or his hydrocephalus.
Ds is 15. His hydrocephalus was discovered "in utero". It is described as severe.
Where would you like me to start with his list of problems...
And yes, sometimes I wonder if some of his traits are asd: but then they might not be
My son had ventriculomegaly in uteri and at 2yrs old he was dx with Autism. My research into ventriculomegaly which is also fluid on the brain, has links to Autism and Schizophrenia. My DS is 7 now, and is non verbal.
Thanks for your replies!
DD is definitely delayed by the hydrocephalus/ brain damage from it, but there are so many over laps between that and autism... but then DH also has a lot of autistic traits, and on these things him and DD are very similar- he has never been diagnosed, but having worked with autistic people before I met him, I could see traits quite early on... so maybe there is a genetic factor in there.
I guess the easiest way is to break things into categories as others have been kind enough to write about some of their childs problems I will do the same so people can maybe see if their children are similar, so this is a very basic description of how she is now at 10:
Motor skills: She can run but it's a bit wobbly and slow, she can't ride a bike but can ride a 3 wheel scooter, though I think if we were to get her a 2 wheel she'd manage that now. She struggles with coordination, so she struggles in PE, she can throw relatively well, but can only catch a big ball if it is thrown accurately, and usually not a small ball. She is generally clumsy- she is guaranteed to knock over a cup of tea if someone puts it next to the sofa. She also sometimes struggles with buttons or poppers, but this is improving with practice.
Sensory: She flinches big time if you touch her without warning (maybe from behind or if she is distracted) and gets annoyed. She may even cry at a sudden loud noise if she doesn't expect it and struggles walking by a loud busy road. She often repetitively stroke textures she likes. She can be quite sensitive to light at times.
Academic- She is achieving quite below her class and is already a year behind at school. She makes big improvements every day but the memory of this doesn't often stick- so she may figure out how to do a maths problem at school, but then need to work it out all over again every time she sees it again, regardless of how many times. Her reading is of a 5 or 6 year old. She gets very impatient reading so she can't cope with a long book, but she is starting to improve since I started making her flash cards so she has the word imprinted in her memory, as the sounding out she was doing at school was not helping much as english has so many different possibilities- she is still encouraged to sound out too, but now she can read more sentences without sounding out every word. Her spelling and handwriting are just about legible but she struggles a lot with spelling correctly. She is currently working on her 5 times tables after cracking her 10 and 2 times tables She is much better at practical work than having to be academic.
Social- she has no sense of personal space and will hug absolutely everyone she meets, sometimes even a stranger on the bus if I have exchanged pleasantries with them as she thinks we know them then. She only remembers names after meeting a person at least 3 or 4 times within say a month, if the person is mentioned regularly to remind her of them. She sometimes understands other peoples emotions, but not when she is emotional- if she has an argument at school she will not understand if or why the other person is upset or how what she did upset them if she didn't intend to upset them- she says they shouldn't be because I wasn't trying to. The concept of people getting upset even if you don't mean to upset them is something she will appear to grasp after multiple explanations but if in 5 minutes the same thing happened again she wouldn't understand. Similarly she struggles with other peoples point of view, or desires- if she wants something, then the other person should not want anything different- ie she said to me when walking for the bus in the poring rain why is friend A getting a lift home with friend B Mummy, I really want to walk home with friend A, and started crying- me- because they don't want to get wet sweet heard, her- but I want them to walk with me and so on... She also is often playing by herself at school and children are starting to reject her as they notice she is different- she will be upset that people won't let her play etc. She is also extremely keen on people sticking to rules and has been known to force a child out of the space in front of her in a queue because they pushed in. She also seems to lack a theory of mind- so she automatically thinks people know exactly what she knows- so she will ask me questions without key bits of info, like she will say do you like this (but not point or anything) and I will say like what, and she will get very upset that I don't know what she means, similarly she will not tell me that she has to take something into school tomorrow but be extremely angry at me for not providing what she needs to take in, and when I ask if she told me, she will say but mrs x told me to so you should know etc. She also asks some very inappropriate questions sometimes :p
Milestones: She is now like a 5 or 6 year old in terms of play, maturity, how she interacts with you, her tastes in toys and tv programmes, and generally how she comes across when you spend time with her. She can now shower herself but never asks for a shower so I don't know if she'd think to do it herself. She doesn't do as much for herself as other children her age as far as I know- if I tell her to have a shower, unless prompted she won't remember all the things she needs to take with her, like her towel, she doesn't think to tidy up after herself unless asked and doesn't know where her things in her room are kept despite being told many times, so she needs help to pick her clothes etc especially as she would pick shorts in the winter etc. She reached all her milestones late as a baby and a small child. While she doesn't apply certain things like rules for safety to herself, she is very good at explaining them to others and trying to look after them- but she would run out in front of a car if not watched, yet if I wasn't looking she would pick me up on it.
She needs a strict routine and gets upset if this is broken. She has a tantrum or at least cries if she doesn't get what she wants, both at school and at home. If someone tells her something it must be the case- she doesn't understand sarcasm or lies unless they are jokes, and if told her we were going to London and then said here we are in Waterloo, she would be very confused and say no were in London, you said we were going to London.. and the argument could go on forever without her understanding that Waterloo is in London. Despite explanations she doesn't seem to get a lot of important concepts like how you have to work to make money, you don't just go to the bank, or the concept of time, days seem to blend together and while she will talk about wanting children or to be a teacher in the future, when she is an adult, she struggles with knowing how long a month is, or that next week we are doing something, she needs to know how many sleeps, and if she did something longer ago than yesterday she couldn't tell you roughly when. She only understands time in terms of key events, like when she is an adult, when she was a baby, when she went to a different school and so on. She often talks to herself, especially to talk herself through what she is doing, like when she is getting dressed. She has speech and language difficulties- she sometimes can say sentences but will sometimes mix up pronouns or say completely the wrong word. She also cannot pronounce unfamiliar or long words and struggles with some letter combinations, she sometimes misses of the beginning of a word like puter or pointment or nana. She is always understandable but does not make complex sentences and sticks to words she knows, normally not using many connectives or use time words. She has certain words she often uses inappropriately like the word 'even' (why do you think that dd? 'even I know'. She also doesn't respond to her name about 25 % of the time and will drift off into space regularly. She also takes ages to do one thing you've asked as she gets distracted by everything under the sun.
Right I have probably missed loads but I've written a whole essay so I do apologise!
Thank you to everyone for taking the time!
Oh and she also has eye problems caused by the hydrocephalus- she had a lazy eye when she was little but this has mostly corrected but her eyes still sort of move from side to side a lot especially if she is looking at something, I can't remember what the official term for that is... I wonder if this affects her reading. Obviously she also has a shunt, so every time she bangs her head I freak out!
So many of the things especially motor skills and sensory difficulties are very familiar. Has your DD seen an OT? I've seen huge progress in DS2 in just 6 months.
DS2 also has a lazy eye and we are patching at the moment. We tried patching at nursery for quicker results, but it upset his system and his behaviour went downhill rapidly. Don't know why I thought he would be able to cope given his sensory problems (face palm)
Does your DD have regular eye checkups? We were told at least every 6 months because pressure on the optic nerve can be the first sign that the shunt has broken.
Hi DS2 is 12 and a has a lot of similarities with your dd
He was born at 28 wks and has a dx of mild CP, autism and learning difficulties.
He doesn't have hydrocephalus but I guess the cause of the brain damage isn't that important as any damage can result in similar difficulties.
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