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.

Start by joining tbis group and talk to local parents
www.pfba2.org.uk

Thankyou thats great.

I have pmd you and I think you should message MNHQ and ask them to move this to the SN topics for traffic. They won't move it unless you ask them.

You have had appalling advice and I am sorry you have not had the support for your dc you should have. There are a lot of things in your posts to suggest a neurological issue but whether it is and whether that is a cause or effect is for specialists to diagnose. I agree that a genetics referral is a good idea, it can take a long time to get results so the sooner the better.

Some things that might help to take to your appointments:

Write a list of symptoms, clearly with age noticed and progression. A list of developmental milestones and ages compared with sibling may also help. As suggested by a pp document change using photo and video as much as possible.

Monitor her across the day to see if she behaves differently at different points, before or after eating or a strenuous activity. Aim to keep a long standing diary of how she is day to day, what she eats and drinks, her energy levels and sleep patterns. Read up on absent seizures and other epilepsies and watch her carefully to see any signs of epilepsy. Ask your family if there is any history of anything that could be related. Examine her spatial awareness, hearing and sight.

If you can keep updating this list and take copies to hand out to anyone you have an appointment with you will force them to consider your concerns more seriously. Often with children there is a "wait and see" attitude in the absence of an obvious diagnosis, this is miserable for parents watching a child deteriorate and not helpful to child.

Without doubt you should immediately have had in place:
physio
OT
Speech & language
wheelchair service
educational support

Get tough and get these things in place, ask for a second opinion and if you are up to it write a letter of complaint about the lack of physio input particularly.

If it helps, the CT and MRI would have been ordered to rule out the obvious and it is great that they were clear. It is possible there is something that may not be obvious on a scan and neurologists diagnose by looking at the patient not just scans. You don't say when the scans were done but I would have expected a neuro follow up and continual assessment until formal diagnosis.

Resources are tight everywhere in the NHS so you have to really insist to get what you need from ongoing care.

What support have school put in place?

Do you know what the blood tests were for?

I have replied to your PM, I think! Still getting to grips using the site. Sorry.

Ill start a formal diary of her daily life. She has quite low energy levels, she doesnt really sit still much shes always fidgeting and complaining that her legs hurt. After she has been to school she is much worse, she struggles and falls much more on the walk home, she turns to jelly. Then the night is terrible with her screaming, in pain, with night terrors, not settling. Which has a knock on to the next morning as she cant get up, shes tried and miserable, legs hurting, doesnt want to go to school. This gets worse as the days and weeks go on. So at the beginning or term she is not great but copes, just... by the end of the week she is exhausted but has a couple of days to try and rest somewhat, but by the end of the half term - the last two weeks are most certainly the worst. She will have more and more falls at school, get more confused and when she falls lose control of her bladder and bowels, school will send her home at this stage as shes exhausted and cannot continue.
Usually then there are a few weeks off school which we spend pretty confined to home as shes not able to do anything, even if we take a taxi to the shop within an hour shes saying she needs to go home because her legs dont want to work and shes hurting too much. This is even with stopping for some food and pausing at benches for rests. She just cannot manage it.

She is very fussy with foods, we have to be clever to smuggle in the good foods. Generally it will only be eaten if its beige in colour.

My mother has epilepsy, havent noticed any types of absence or seizures.

She only started this process in April when we rushed her in as she had a fall at school, wet herself, had a terrible headache, fell down our stairs and said her legs cant work. The paediatrician at hospital emergency part ordered CT scan which was clear and sent us home with urgent referral for MRI. On 7th june she had brain and spine MRI under general. The paediatricians secretary rang us on the 14th june this week to say the scan is normal and that the Paediatrician will see us for a follow up on the 3rd July.
We have no neuro, no other medical professionals are involved at the moment and as far as we are aware they havent made any other referrals.

They have not told us what they tested her blood for. Or her urine.

School have their own special needs plan for her, basically a sheet of paper that says she struggles. They have to have someone with her at all times as she cant be left alone, she has one on one teaching a lot but with just a support worker/volunteer person. This is simply as she cannot keep up with any of the formal lessons. As previously mentioned she cannot read or write, to be honest shes more or a nursery/reception level educationally speaking.

That all makes more sense then, she is still very new to the assessment process and it sounds like she is getting fast and appropriate care. The thing is to keep everything moving in your favour now.

Records and diaries will help you now and in the future. Include regular weight and height if you can.

Have a list of questions written down for appointments and feel free to take notes, it is easy to forget to ask something at the time and nobody minds you being thorough.

I expect a dietician should also be involved and full blood tests for any deficiencies. They can help you with ideas and supplements to make sure she gets what she needs from her diet.

How was she before this year, any concerns?

Also address pain management, ask the consultant.

Does paracetamol help her at all or heat packs or ibuprofen? Is there any rigidity or spasming that could be helped by baclofen or something?

Is she better rested and would you be in a position to have her attend school part time until she is a bit stronger so she can do what she can manage whilst undergoing assessment?

Poor kid sounds like she is having a tough time.

I do try to smuggle healthy foods into her diet without her noticing, also give her multivitamins etc, her full blood work showed she is fine in those ways.
Her concerns and problems have been forever really but they are more apparent now as she isnt progressing.
I had my waters burst a little early as her heart rate kept dropping dangerously low but thats all they did, sent us home a few hours after she was born as she was fine. She had severe reflux and was on special milks. She didnt really hit any of her milestones as expected and walked grudgingly when she was nearly two. Was not out of nappies fully until age 5.

Calpol and Ibuprofen dont seem to do anything. She does seem to go rigid or anything, shes more of a jelly. Sometimes she says it feels like her legs are burning her.

So if she has a 1-1 does she have an EHCP?

Has there been no medical input before the falls? Health visitor? Nursery /preschool? Anyone raising questions about gross motor delays etc.

No she doesnt. Just the piece of paper the school do themselves but nothing through the council. She has one on one a lot because luckily the school employs extra staff and has a few extra voluntary helpers. She has one to one reading sessions and has someone who pretty much watches her constantly as she falls so much, needs constant toileting reminders and help in the bathroom. Help getting changed as she cant manage buttons or dressing and undressing. Cant cut her food or eat properly. She needs someone shadowing her all the time really.

I have taken her to the GP many times and they were not interested in the slightest until recently when she had the more serious falls with incontinence and headache all combined. Its her gross and fine motor skills that are all delayed. Our health visitor never really bothered after the 1 year assessment. Nursery noticed but werent concerned as they thought she would gross out of it. Luckily we changed schools when she was nearing the end of reception as her previous nursery and reception teacher simply couldnt be bothered with her and just used to ignore her, sending her home covered in plasters and with bags of dirty laundry, they saw her as a burden. Now they are in the local Catholic school and they are altogether different. Far more aware of her needs and wanting to help her.

I’m an early years SENCO and having read your description I can see no reason why your DLA application should be turned down so perhaps start to think about how you can use the money once it’s processed so you are ready to start once you’ve had it confirmed. In terms of the school, you should be asking them about EHCP and what they will say when asked etc. You will need to apply for the EHCP (depends on area I think but you definitely can wherever you are) and by the sounds of it you could do that now as the process can take a long time. When you see the paediatrician you need to find out what is happening now and ask for referrals into other professionals who can support plus then they will be able to give an input into the EHCP process too. Unfortunately most children only get the input etc once parents start pushing and jumping up and down and you need to be a strong advocate for your child by asking for these things as they very often they certainly won’t just be passed to you x

I am stunned she hasn't had these things flagged up before, it sounds dreadful.

Do you have any reports to send in with your DLA claim, because that may be a stumbling block

I would push the GP for referrals to OT/SLT/Physio/wheelchair services. The paediatrician can also refer in appointment but often there are delays.

Contact your council and request a EHCP statutory needs assessment.

How is her interaction with others non verbally?

Ask what all the blood tests were for.
Urine suggests metabolic conditions.
But you have a right to ask what tests are for. Just ask paed to explain each test.

I'm appalled that you have been aware of her issues for so long and not received any help until now. I think you definitely should get DLA, but my experience (admin of a support group for children with epilepsy) is often it is automatically refused initially and parents have to appeal. It is very hard work having a child with additional needs, you have to fight for everything that ought to happen. The council have to provide a support service as part of their local offer on the council website that helps you navigate services, it's often provided by a parent-carer charity. It's worth looking for parent-carer support groups as it's often only by talking to other parents that you find out what is available locally. It sounds very likely to be a neurological problem to me, so I would push for referral to neurology, amongst all the other professionals who should have been helping your family for years. I hope you can get some real progress made to get her the help she needs.

localoffer.bradford.gov.uk/Services/Information/default.aspx

Thankyou. I will talk to school next week as they are brilliant and ring about the plan doodie see if I can get the ball rolling with that too. I'm going to write a long list of questions to ask the consultant. I'll go through this feed and flag everything up with him. I'll ask about all the tests done already and get the info and I'll ask what he plans to do next. I will also ask about referrals to the other services mentioned. Our gp is going to be a brick wall because as soon as she was referred to the paediatrician they clam up and won't do anything except tell us to contact them. It's rubbish really.
Ill also contact the Bradford teams on that website for advice and guidance on what to do.
I have my fingers crossed for dla but I am prepared for a fight having seem many people struggle. I feel bad for waiting so long but I've always been shrugged off so had nowhere to turn to, I just hope that now she can get all the help she needs. I feel more confident now I've been on here. I'm truly grateful.

No advice but I'm sorry to hear you are dealing with this and staggered that you have had so little help so far. Round here there is a thorough assessment by the HVs at about 2 and you can't get them off your back unless the child ticks almost all the boxes.

I'm pleased that the new school is accommodating but is it a benefit to her given how difficult she finds it- might attending part-time be an option?

I really hope your paediatrician appointment gets you some answers and some more help and that you get the DLA that I would expect you to be entitled to.

I've no real knowledge in this area but wanted to lend you my support. One other thing to think about - your GP sounds rubbish! Is there any chance you could change to a different practice? You might find someone better prepared to help you advocate for your DD. Good luck with everything - your DD is lucky to have you for her mum.

Ask about the 100000 genome project for genetic testing too.

I can't believe you haven't had any support in place so far that's terrible x

Agree that a part time timetable is definitely worth exploring. She can't function at those levels of exhaustion so it's a natural solution to cut down hours and see if that helps. Are you in a position to have a SAHP to facilitate that?

Yes I am a stay at home parent and we can easily make any arrangements to suit her regardless, she is our priority and more than happy to change anything if it means she is more comfortable.