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.

how old is your DS1 cyber?

think i would be inclined to chase it up and find out one way or another.

I have known some odd things to creep into paed's report; this sounds like it could be important so I would chase it up

I thought microcephaly just meant small skull and nothing more, just a description - is that wrong?

He is 5 (as of last week). I will get it checked, it concerns me that she did not even measure his head this February, it seems like a hangover in the computer files but then again it might still be that his head is small. He has a dx of autistic spectrum disorder ( not by Paed but at another hospital)

is microcephalic when the head is smaller than proportional for the body , or just smaller than average?...... And why is it significant/ important? sorry for all the questions ,i dont know much about it and would like to learn..... anything about size is very intresting.

I think DS1's head is small but not out of proportion to body (yet). Also DS2 who is completely NT has a small head so who knows.... It does not really bother me that much but I think she should have at least measured his head as the last measurement was 2 years ago !

hi all,
WHAT DO I DO NOW? just been reading through some hospital letters for my 8 yr old and thought id check out what "microcephaly" realy ment as i was told it means he has a small head.
I cannot believe all the things i have read about it and we got told at least 2 yrs ago about this but no one told me anything about it.
My son has epilepsy, co-ordination difficulties, behaviour difficulties,learning problems and joint pain, mainly in his lower joints that the doctors do not as yet know why he is getting the pain.
Now i am woundering if it could all be to do with the microcephaly!
any help on what i should do now would be very usefull. thanks x

Thanks for the bump. I still think about this on and off. I still have not found an exact answer to how small is small ? DS1 has a head circumference around 51cm which is definitely small but my other DS who has no problems or issues has a similar sized head - in fact he looks like a real pinhead compared to his peers in nursery. Sorry that's no help. I think most believe head/brain size impacts on learning but it's an exact science.

Hi Cyberserphim, my daughter has microcephaly, she does have a very small head, but not so that she would stand out in a crowd.

She is tall, but very thin, willowy.

The Paed has told me that all her problems, which are ASD, Dyspraxia/DCD, speech and language, are caused by her microcephaly. She is having OT (off and on, depending on the staff available!) and after much pushing and chasing, she is receiving SALT.

But I am left with the nagging feeling that I should be doing more..I did mention her having a MRI scan, but the Paed pooh-poohed it, said it would be traumatic for her and would be of no use.

I keep thinking that maybe I should press for another referal via my GP, but I am fighting the LA over her statement, and just can't face opening up a battle on another front until after our Tribunal.

When the Paed did a re measure, she said the size was within normal range according to new charts but obv still is very small. He is tall and willowy too ! In some ways I would like MRI but think would be too scared of what they might find.

He is very thin too despite eating a lot - a new syndrome TWS ?

She has been screened for a number of chromosomal abnormalities, including fragile X. They all came back negative.

I don't really know much about microcephaly, beyond what I have read from "Googling" the results of which I do take with a pinch of salt!

Googling microcephaly is very scary ! I find it odd though that if his head really is (just) in normal range for a boy, then the head size must be fine for a girl - yet often pundits claim females have better language skills. . I do think his small head is a cause of his problems but don't know if that is good or bad in terms of prognosis. I can't pump it up with a bicycle pump but if otherwise ok, will neuro wiring improvements as he ages help him ? All our genetic tests were negative too but I think (but don't really know) that they are only looking for specific things like Frag X- I don't think it is full check for genes speculated by some to connected to autism.

DD1 has microcephaly. Her head circumference is less than the 0.4th centile on hospital charts. We were told that they look at parental head circumference also, to decide if it is just a 'constitutionally small head' rather than an abnormality.

My head is on the 50th centile; DH's 98th centile, so DD1 being

DD'S head is on the 0.4th percentile. She had a brain scan in November which showed less white matter (widening of the occipital horns) but within normal limits. No chromosomal abnormalities found yet - just waiting for microarray results....

Her head was on the 9th percentile when she was born and seemed to not grow at some point for a few months...the neuro said that it is hard to measure heads and that the shape of the head sometimes varies and can affect the accuracy...

DD has GDD at the moment she is 2.4.

No one has mentioned microcephaly in any of the reports so far but after reading this I wonder if its worth mentioning next time.
I was told that as long as the head is growing steadily not to worry!

I don't know what percenitile DS1 is on but like Lou, I have measuered DS2's head (who is as bright as an NT button) and whilst it is possibly 0.5 to 1 cm larger, it's still very small. Of course you can get a lot of white matter in a cm . His head was small at birth (very low end of normal chart) but has grown to keep up with low end of normal.

Spur, can I ask you how you managed to get a brain scan?

The paed has refused to refer us, and has in fact discharged us!!

She told us an MRI would be traumatic and would not be helpful and that I just have to accept that DD has learning difficulties, most probably caused by microcephaly.

DD is the same percentile as your DD, 0.4 and is described as having "mild" microcephaly.

Maybe I should go to my GP? But he is very reluctant to refer anyone to anybody, I think that as he is a partner in the practice, he always has an eye on the budget and I guess, (but maybe wrong)that referals to a specialist somehow cost the GP's practice money?

In truth, I feel rather abandoned and alone, in terms of the health service. I just don't know what to do for the best.

TheTimeTravellersWife, has your DD ever had an EEG?

Our EEG threw up odd patterns, and that prompted the advice to perform an MRI.

DD1 has a brain malformation of the surface, so a CT comes out entirely normal, and it is only the MRI that shows the problem.

Hi Lou, nope, she has never had an EEG, all she has had are blood tests for certain chromosomal abnormalities, which all came back negative.

I am increasingly getting the feeling that we haven't really fully explored all the possibilities of the root cause of DD's difficulties.

Has she ever had any episodes that could possibly be epilepsy? Like vacant spells, falling over for no reason, tremors in her limbs?

If there have been, it is worth mentioning, because they may then order an EEG, and that might show something that gives justification for an MRI?

If I were you, and feeling assertive, I would ask the Paed how she knows that the LDs are caused by the microcephaly, rather than the microcephaly being caused by a brain abnormality...

Hi Lou, she has what I would describe as periods of absences, when she does not respond to you when you speak to her, even if you first call her by name, but that has been put down as an ASD trait.

She often falls over nothing, but I put that down to her balance/co-ordination problems, but I may try to make a case for further investigations. Just have this doubt that I haven't done all I can to fully explore things. I guess that it may well make no difference, but it would be good to know the truth.

My son has microcephaly. What is SALT?