Some help please

[catdee]

Hi every-one,

I'm new and wondered if any-one on here could give me a little help and advice please. Sorry this could be long.

My DD was assessed ( Ruth Griffiths )at the CDC when she was 25 months old. She was premature and reached all her development milesstones quite late. ( sat at 11 months, crawled at 15m, walked at 25m ) When she was assessed they said she had gross motor development delay, poss sensory processing disorder and dyspraxia ( though she was young for diagnosis) and sent to speech therapy and physio. On the report we recieved following the test it said DD scored below 2 on the percentile ( not sure what this meant)

DD development over the past year has been amazing and I would say she is within 'normal limits in terms of mobilty' but she has been suffering from what appear to be absence seizures though EEG is normal and brain scan showed small white matter changes ( lesions). the lesions have been dismissed as having no clinical significance.

DD is now 3.6 and suffers from terrifying rages,can be agressive to me, herself and others, stuggles with emotion and cries for no reason but cant tell me why ( sometimes cries for hours), is thrill seeking, no sense of danger,doesnt play with other kids, is demanding, doesnt like change, needs things doing the same way, has pica and still puts things in her mouth She can also be affectionate, lovely, charming, sassy and gorgeous and angelic and adorable and funny and my little girl.

We requested another appointment with the CDC and we went today. DD saw a grade doctor ( not sure what this is?) and not her usual consultant.

DD flew through some of the tests but refused to do others. The doctor siad she didnt think there were any problems and discharged. Said DD scored 10 on the percentile and althought the average was 50, dd was with in normal limits and the doctor knew that DD could do much better than she was doing ( ie could do the shape sorter/finding puzzle but they couldnt award her points because DD took so long to do it)

Doc said Dd was still difficult to understand in her speech but didnt need any speech therapy, there could be sensory isssues but no point in refering as no one could help with that, that most of her behaviour was down to the seizures she was having and the fact that DD couldnt yet communicate how these seizures were making her feel, that she was showing some traits of Autism but couldnt be autistic as she was engaging and made eye contact, that she didnt have dyspraxia because she had fantastic gross and fine motor skills ( though she still needs help to walk the stairs, cant pedal and falls over and bumps into everything.

Am left feeling no better than I did. We dont have answers on how to best help and understand DD or how we can deal with her exhausting behaviour. Maybe I am pretending there is something wrong when there isnt , maybe my DD is completely 'normal' and is just feisty and a typical 3 year old, maybe it is the way I parent her. argggg I dont know

I feel there isnt something quite right with her but what?

We have yet another appointment with neurophysology and this time I am armed with video footage of DD slumping at the table, twitching and unresponsive ( maybe they will take me serious this time)

And breathe....sorry its long but I feel very frustrated...thanks to all of those who got to the the end of this essay.

Hi Catdee
Your dd development has some similarities to my ds2 (also prem).
Firstly I would say that the DR sounds like a complete arse & a grade Dr is usually a more junior DR & quiet often are just on rotation in paediatrics.. perhaps he will decide kids are not his thing!
Go back, requst a multi disciplinary assessment, so that they can decipher your dd behaviours & see what support she would benefit from.
Sensory difficulties can be helped hugely by an OT, so make sure an OT is involved in her assessment.
You know your dd best so don't let them fob you off.
The other thing is that if your dd is having seizures, they could be causing much of her problems, if you are able to get control you may find things improve.

Thanks for reply. I am meeting with my HV next week with a view to discussing how the assessment went and what we need to do next.

We see neuro phy next week also so will see what they say. It is difficult when you dont know where to start or who to ask for help.

Can I ask how prem your little one was?

he was born at 28 wks, is your HV supportive?

would like to support what anon said. my mouth fell open when i read that the doctor said no-one can help with sensory issues. definitely ask for an OT referral, and hopefully a re-referral to a paed who knows what they are talking about!

good luck with the neuro - hope they can help with your dd's seizures.

My DD was also born at 28wks. Our Hv is ok, she is very busy and only seems to get in touch when she gets a report from paeds. But I have got her to come and see us and hopefully we can get her to do something to help.

The doc today said that there was no point to get OT involved as DD wasnt showing obvious signs of Sensory disorders in that they usualy help by building up her resistance to things but dd seemed to have issues with being over sensitive as well as being under sensitive ( does that make sense) so nithing could be done. They seemed to concentrate only on her mobility and her ability to complete the tests and were not interested in her behavioural issues, saying they didnt deal with that there.

It is all very confusing to us at the moment

Ther is always something that can be done with regard to sensory stuff.
I would diregard what he told you & maybe start again with a different doctor.

My ds2 had a year of OT preschool & it really made such a differnece to him & to us all. It is never a quick fix but the results fom good OT support can be huge.

I think the percintile thing, although a very crude measurement is meant to give you an idea in comparison to other children at the same age.
So 1st percentile means if they tested 100 children, 99 would have higher scores. I think that's correct? Someone pl;ease correct me if I'm wrong.
TBH tests such as the Ruth Griffiths Imho give a base score & idea of a childs understanding & co-operation but little else.
My ds can score very well in a Ruth Griffiths as he is good at following instructions but can't dress himself without help.
Don't allow them to confuse you, stick to your guns

i had to demand that our paed made a referral to OT as he was most disinterested in my ds's issues. when i mentioned this to the OT , she rolled her eyes as though they'd had problems with doctors blocking referrals in the past.

i think if the doctor has said something that goes against your instinct about your dd, then you might want another opinion. you know your dd beter than any doctor making a brief assessment.