Microcephaly ?

[cyberseraphim]

The Paed sent in a report of DS1's most recent assessment. As is often the case, there were some innacuracies such as stating that he attends nursery (which he does not and we spent long time discussing this at the meeting). Tje report also resurrected an old issue - whether DS1 is microcephalic or not. His head was last measured 2 years ago (not at the last assessment) and then it was said to be just below the cut off point for normal.He had a slightly small head at birth (3 weeks premature). Now he is tall for his age (no one believes he is not in school yet) but very skinny (waist of a 3 year old).I do not think his head looks small for his body type and no one has ever said to me that his head is small. I did meet children with microcephaly at the MLD school I visited and it did seem more apparant. Should I ask for a proper assessment as I don't want it to drift on in his notes if it is not true but equally if it is the case, we need to know. The report does have a lot of positive stuff but overall it looks as if it has been knocked together in her tea break and it does seem odd that she did not measure his head at the assessment.

Does anyone know of any support groups, preferably London based, that are for those with children with microcephaly?

Sorry for late reply...
DD was showing signs of visual perceptual problems. She has difficulties judging depth for example if there is a rug or mat on the floor she thinks its a step. Her walking was kind of off balance.
Also her speech, gros and fine motor skills were delayed at the time - she was 22 months.

This combined with small head warranted an MRI.

Our paed was keen to have one done and did not expect it to show anything...but still felt it was important to check everything was OK/ rule things out.

It did show up something so although after 3 months it was declared within normal range it showed that she has less white matter in a specific part of her brain...which 'could' explain her symptoms.

WE have also had genetic micro array testing now which showed nothing. Generally the Drs have been really pro testing for anything they can think of...they have asked me to tell them if I think of anything...I mentioned angelmans just out of curiosity and they are now testing dd for it.,,just in case?!

Hope that is helpful

is microcephaly classed as a disability my 16 yr old has learning probs but did not no much about mc still dont really but plan on following it up can i claim dla and if so wahat rate does any 1 else gett this 4 mc my son has a statement and is in special scool in fact has most symtoms of mc pls help cos do not no answers ty

Hi Shelly, no microcephaly in itself isn't a disability, but DLA isn't dependent on a diagnosis, but the care needs of the child.

Having said that, microcephaly can be a sign of a disability and cause symptoms that would be classed of disability.

Clear as mud?

ty lougle 4 your reply yh my son has rescricted movement in hes shoulder is clumsy with movement bites hes finger which is quite disfigurergerd wen in stressfull situations he can easily get taken advantage of cannot b left alone as burnt big hole in hes track suit bottoms and couldnt tell me y gets very angry and raises hes fist at me wen he cannot explain himself has very poor memory 4 instructions so would not b able to find or follow instructions in strange places so i go with him on every outing to keep him safe he also has faigue moments all this and much more would that b consirerd a disability ty pls help if u no answers

Although there isn't a clear route to DLA as in 'x diagnosis=DLA', there are clues in your post, that give the impression that your DS probably should have been getting DLA.

For instance, you say he goes to Special school. To do that, you have to have a Statement of SEN. To get one of those, you have to have quite a high level of SEN.

I am surprised no-one has told you before about DLA???

You should definitely get a DLA pack, and download the DLA guide from Cerebra www.cerebra.org.uk - fill in the form, take your time, post here if you'd like some help, and see what happens.

The thing is, if your DS is 16 and can't be left alone, that is far removed from a 'typical 16 year old'. The only difference is that you will need to fill in an 'adult' form for him.

hi lougle or any1 else have just found out he is classed as having severe needs on data base with senco have spoke to school nurse who is gonna look in hes records and write me a helpfull letter and get him a social worker and refer him to a pead as i fully admit i took him out of the system ie ; fed up of hearing same thing over and over my mistake ! i realise that ! so hopefully this will all help he has mc and global delay in most aspects of real life if any other tips on dla pls help if can ty michelle x