Paed is thinking cerebral palsy.

[Dawsons]

Hi, we have just applied for DLA for our 6 yr old daughter and wonder if we will be successful or not. The wait is awful.
We have applied as she has many different difficulties.
She is under the paediatrician, he said he suspected cerebral palsy or similar. She has had a CT scan of her brain, which was normal. She has also had an MRI scan brain and spine under a GA which is normal. We have a review/appt for a diagnosis in July. Not too sure if a child can have a normal MRI and still be diagnosed with CP or not?
Anyway we have applied for DLA and her teacher wrote a really great supporting statement which I am hoping will help.
Just wondered if there are any others in this situation or further down the process who can get in touch? Its a strange place to be.
Outlining her difficulties;
She struggles to walk, her left side is weak and she throws her left leg when she walks. Falls very frequently, multiple times in the day, complains of pain when walking and after a day at school wakes up screaming in pain during the night as well as her usual daily pain. Over the counter pain relief seems to do little to help.
Throughout the day she becomes more and more exhausted and falls more, she then also loses control of her bladder and bowel. Gets sent home from school as she has soiled etc.
She suffers from headaches which make her worse in the clumsy sense, we have had to move her bedroom downstairs as she falls down the stairs more when she has these headaches.
She cannot read, write, do any school work. Her gross and fine motor skills are really bad. Cant write her own name etc.
She has terrible short term memory, cant remember what you tell her to do, what she has done, forgets what she is saying.
Cant eat properly or cut up food.
Barely manages to use the toilet, forgets she needs the toilet.
Needs supervisions all day and most of the night. School have had to get her one to one support as she cannot keep up at all with any of her class.
She has terrible night terrors, night pains, wakes up and cant settle - spend around four hours over each night with her trying to sort her out and help.
Her speech is very poor, people struggle to understand her, even we do most of the time, she seems to know what she wants but cant get the words out, forgets and then gets frustrated.
She does not have any friends or social time as she cant physically or mentally keep up with anyone. Its really saddening.
We cant take her many places as she simply cannot cope with the walking and pain.

Just wondering if anyone else is in similar or was, what diagnosis is or could be in similar circumstances? Also am I wasting time trying to get some help for her?

Im certain there will be more things that I have forgotten.

Thankyou in advance.

is she in mainstream?

At the moment yes. Although she isnt anywhere near year 1 level. She cant read, write or complete any formal work.

Did you get help with the form? I know some children get turned down who really shouldn't but it just seems to be the luck of the draw.

We get it but DS was oxygen dependent so probably hit a certain criteria.

If you are on FB there is a group called "dla for children advice and support" you might find helpful.

I didnt, but I completed a downloaded form over a few weeks, constantly adding and adapting, filled all the boxes. Her teacher wrote a statement and I used so many websites for advice to complete it so I feel pretty confident Ive done what I can at this stage really.

Thankyou Ill look up that group.

Where are you based?

I would get this thread moved to the SN topic for more support.

Cerebra are very helpful.

CP is just a name for a group of symptoms. It can take a long time to get to the root cause and you will be the driving force behind that. Never feel you are wasting your time by trying to get answers for your child.

In your shoes I would push for ongoing phyiso, OT and most importantly neurological support. Try to get a neurologist leading her care from now on, you need a brain specialist to deal with brain issues. Paediatrician is the equivalent of a GP for kids.

Bobath could be helpful.

Support varies widely across the UK, you will get a lot out of comparing notes with other parents. Join every support group you can.

Also keep copies of any forms you complete like the DLA forms so if they "get lost" you don't have to fill them out again and you can refer back to them for future re-assessment.

Always present worst case scenario. Always appeal any questionable result. Apply for everything you are entitled to.

You should have a referral for walker/wheelchair assessment, being unable to go out because of pain walking should be managed by giving her other ways of getting about. OT and physio should be all over this.

Obviously she needs to keep up with her walking OP, often it is a case of use it or lose it. But for a long day out it might benefit her to have a wheelchair as back up if she is happy to use one.

I have decreasing mobility and was massively reluctant to use a wheelchair but it has honesty transformed my enjoyment of days out and holidays. I still walk as much as I can over short periods, but my pain and fatigue levels are much more manageable now.

Thankyou for the advice.
We are meeting with the paediatrician again on the 3rd July so Im going to write a list of things to ask and about onward referrals as I agree and think a walker at the least would really help her especially to and from school.
What concerns most is that her walking seems to be getting worse even though her activity levels are remaining consistent.

www.bobath.org.uk/about-us/bobath-therapy

www.cerebra.org.uk/contact-us-2/

www.contact.org.uk/

www.benefitsandwork.co.uk/about-us

You don't have to wait for appointments to contact any of the above and get things in motion. If you can pay for physio do it but get someone good with NHS training and experience, they can complement whatever you manage to put in place through NHS and most importantly teach you how become your dc's physio.

There is a buy/sell/swap special needs equipment uk site on facebook where you can get what you need second hand, wheelchair services are grim in the uk. Get professional advice though so you don't get it wrong and have help to fit equipment etc. You need to know what you are doing.

I think that severe Dyspraxia is occasionally diagnosed as a form of cerebral palsy. It might be worth you looking at the symptoms or speak to someone about it at the Dyspraxia Foundation. dyspraxiafoundation.org.uk/

Get proper assessments and ask.for.genetic testing too. It can take time but worth pursuing.given she has no obvious brain injury then pursue proper testing as "cp" will be just a name for symptoms.

If she is getting worse with any symptoms you need to push for diagnosis. Some conditions e.g. metabolic can be treated.

Take videos of her walking and date them so you can compare in on e month and three months and show change or not to paediatrician or neurologist.

Perfect yes we have videos of her walking and will keep taking them to check for changes.
My main worry is that the Dr's say there is nothing wrong with her when there quite clearly is.
They did carry out many blood tests, so Im hoping they covered most things. Are there any specific tests I should ask about?

Presumably her issues were noticed some years ago so I wonder why you only now applying for dla ? Or is it worsening? In any case yes she should get dl a and you should get support.
But ask for genetic testing ie to look at specific gene based conditions . At least get Microarray done. Any family history of similar ? Draw up a family tree ask about any past relatives?

And insist on referring and monitoring the worsening in walking. There's are neurological and metabolic conditions which get worse in children. Hugely important to test as some can be treated....and in others you need to know what s in store.

Ask for the list of what has been tested for.
Ask which metabolic or neurologic conditions have been tested for and ruled out
Ask for the "differential.diagnosis" a list of possible diagnoses.
Ask for referral to genetics . a geneticist is good at looking for the diagnosis and also reviewing family history to see if any clues or if none.

We have known for a long time but specialists were not interested until she was of school age, she didnt crawl, walk etc as expected and has always been very clumsy but we put it down to her being young. Then as shes getting older and you expect her to be able to do more, the more apparent and pronounced her difficulties have become. We havent ever applied before as we have no idea we could. We started taking her to the doctors a long time ago especially with her having so many falls and toileting accidents but they told us to go away until she is 7 years old. It was a fall at school followed by loss of bowel and bladder control, then when she got home she complained of a headache and fell down the stairs because 'my legs wont work' - we immediately got sent to paediatric ward at hospital and thats when the ball actually started to roll. That was in April.

Wow that is bad advice you were given. But at least you in the system now. Is she cognitively on track?
Get in touch with your local parent partnership for advice on getting ehcp

Ask for full assessments like ABC movement battery it is like fun games of doing different physical.things and gives a score and shows where she needs help and exercises. Also that will allow to compare in a year's time .
For headaches neurology. Keep a headache diary and record symptoms for each day buy a notebook or do.it on document online .

Im not sure what you mean by cognitively on track to be honest, having had a swift google it says:

Signs of cognitive delay can include:

Difficulty paying attention, even for short periods.
Inability to sit still for any length of time.
Taking an extraordinarily long time to complete tasks, such as homework or writing tests.
Poor memory when recalling learned facts or multi-step written instructions.
Weak listening skills and difficulty in remembering oral instructions.
Difficulty with reading, spelling, vocabulary and comprehension.
Problems with abstract concepts in math.
Struggling to plan and prioritize.

If this is what you are referring to, she has zero attention span except when playing on her tablet, but still wanders about.
Never sits still, day or night.
Cant really complete any tasks.
Appalling memory and recollection.
Does not really listen properly or process.
She cannot read or write.
She cant even count up to 20 without making many mistakes.
Zero ability to plan or do things like that.

The paed doctor spent over an hour with her doing lots of tests, writing, physical stuff. Her reactions on her left side are apparently abnormal. Shes weak left sided. Cant walk properly, its almost like she is drunk or has had a stroke in the manner she walks, she has to drag/throw her left leg.
She cant do things like buttons, laces, poppers. Holding pens and pencils she can do but cant do much with them, if that makes sense.

It sounds like paed was quite thorough but pqed should now request formal.testing to give scores wherre she is at in different areas. Or educational psycholigist through school might do this. This is called standardised assessment
. So is she like a typical.six year old in play and socially ?
How about with an iPad can she type words or the first letter of words ? How is her speech? ( in this case I would encourage iPad apps and educational.games sometimes kids cannot physically do a jigsaw but can do so on an iPad! Also iPad apps for words reading matching . )
She may have uneven profile.so may be fine in speech but not in other areas. That is why full assessment is useful.
Has she been seen by physio therapist already?
Has she ever been tested for coeliac disease ?

She isnt really typical, we also have an 8 year old and they dont really play together much as she cant keep up or do most things. She wont play in the garden on the swings or trampoline for example as she cant jump, balance or pull herself onto and stay on a swing.
She has no real friends at school. She cant keep up and they just end up ignoring her.
She cant type words on her tablet - just random nonsense. She will say it says a word but it isnt at all similar. She rarely spells out c,a,t but the basic toddler words are her limit. She cant write them. Occasionally if you tell her to write specific letters she can, but does them backwards or look foreign. But she isnt always able to tell you what letters are.
She can play jigsaws on the tablet, basic ones, it takes her a long time and she gets frustrated. No chance of her doing so with real ones.
Her speech can be hit and miss. I can generally understand most of what she says. She does not have proper conversations. Uses basic words, often the wrong ones or gets confused whilst trying to talk. Her teachers struggle to understand her and people she sees on a daily basis struggle.
She has never seen a physio. As far as Im aware they havent tested her for coeliac disease.

She needs assessments and programmes for
Physio therapy
Occupational.therapy
Speech and language therapy
Specilaist teaching support to.assess and develop learning programmes

Have a look at special.schools or units nearby too. Just to get an idea of what is available. and programmes for after school which look holistically at a child.
Get the ball rolling for ehcp.

I do worry that mainstream school will say she cant go there anymore. No idea where to begin looking really. I shall have to do some research and see what is available in Bradford. Thanks.