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Here are some suggested organisations that offer expert advice on SN.


(28 Posts)
used2bthin Mon 25-Apr-11 07:46:44

Hi, I have had some info from other threads but thought I'd start tbhis in case anyone sees it who wasn't on the others. DD four and a half has severe specific language impairment as well as a probably unrelated genetic condition and has just had microcephaly added to her growing list of diagnoses.

It seems to just mean small head so I thought not much of it last year when it was mentioned but the paediatrician said it can be associated with learning difficulties so in view of the fact that she has them it may be relevant. She mentioned doing an MRI but seemed unsure as to whether it was worth it.

Any experience of this? Googling is not a good plan I know so I held off for a while but have done it now and apart from scaring me a little there wasn't that much new information to be found.

willowthecat Mon 25-Apr-11 08:13:31

I have done a lot of research into this issue as ds had suspected micro - ruled out now as head big enough to be in the normal range. ( I think I posted the mis measurement saga on another thread. There is a yahoo group - where you can get a great deal of detailed information on the subject.

used2bthin Mon 25-Apr-11 08:55:14

Hi willowthecat yes I remember from the genetics thread. I will check out the yahoo group thank you. Am always a bit confused by yahoo but will give it a go!

I suppose the big question for me then is if there is anything that can help improve microcephaly? Repair the parts of the brain that are not developed? I think the paediatrician was saying we can decide whether an mri would be helpful, it may not affect what dd needs now but may give more idea of prognosis. DD's head has grown from 0.4th centile to 2nd in a year unless its just a difference in measurement-in this time her language although still significantly disordered and two years at least below what it should be- has improved a lot so I wondered if the head growth was to do with that?

Feel ilke that is a silly question but have beewn wondering if things can start to develope with therapy.

TheNinjaGooseIsOnAMission Mon 25-Apr-11 09:27:02

used2, dd3 had an mri when she was 2 and we were told that whilst it may explain a lot of things for us (it did) it wouldn't really give us much of an idea of what to expect in the future. As it happened the mri results made for very grim reading and had this been done when she was smaller we would have been given a very poor prognosis, don't get me wrong, dd3 still has complex needs but they would have said she should have been much worse, does that make any sense?

the brain is pretty able to adapt I think (?) up until about 7 years of age, so although the brain can't correct a malformation it can learn to work round it sometimes. There was some stuff on the other thread that was interesting about all that. So therapy can make a difference.

used2bthin Mon 25-Apr-11 09:41:27

Thank you yes that makes a lot of sense. I think we will aswk for an MRI if offered and partly it will be to explain it. I was a bit worried that it would come back so awful that it would seem pointless to the SALT to give her this intense programme she is about to start but I think that is paranoia.

I am really interested in the therapy side of things as so far DD has only had SALT which sort of helps but not an awful lot and I think there is more we could be doing at home.

The good thing is i am obviously getting my head round the whole learning diffculty thing since I am looking for ways to improve things grin (have been through all this before when she was diagnosed with the genetic condition-despair, avoiding thinking about it, obsessing over it etc!)

used2bthin Mon 25-Apr-11 09:43:42

Still have that time is ticking feeling she has 2 and a bit years till 7, the paed was saying grommets for her glue ear may help wish they'd do it with the MRI.

Was looking into horse riding for the disabled. We don't have portage in my area but I have been wanting to train as one for ages. Any other organisations that help with this kind of thing?

TheNinjaGooseIsOnAMission Mon 25-Apr-11 10:18:43

portage is very good but generally goes up to 5 and usually with the current shortages will only see dcs until they go to preschool. What you really need is local info as it can vary hugely on what's available, are there any parents groups in your area, contact a family run here which is very useful. The best info I've had about local services has come from other parents. Horse riding is on my list to do, there's a centre local to us, waiting lists are long but there was a thread on here a while back that recommended it.

used2bthin Mon 25-Apr-11 10:39:14

Same here ninja and am getting in touch with the local SN school after the easter break to ask if we can join them for that and swimming. The lady at the horse riding suggested it may be the easiest way to do it.

It was recommended on here and in RL to me so I think its got to be worth a go and enjoyable and confidence building too.

We have an inclusion outreach teacher I wonder if that is this county's version of portage. I may do the training anyway if it affordable as it would be useful for my work too and have been interested since before DD's issues. But annoying how area dependant all this stuff is, a friend of mine is in Hampshire and services are amazing and there are lots of families there with children wih Sn. Makes you wonder what came first is there good provision due to high numbers or did people move there for provision!

TheNinjaGooseIsOnAMission Mon 25-Apr-11 11:17:10

dd3's off to ss in september, I really must check what sort of stuff they do, they have their own pool and loads of trampolines and sensory rooms but I have no idea if they do off site things blush I was more interested in them actually being able to provide her with an education that she's not getting and the therapy she needs like ot and salt, I didn't ask about other therapies. One more thing for my to do list grin

my mum did the portage course many years ago and thought it was really good, she worked at a ss at the time so it was funded through them. I think I'd move to an area that had a good reputation for sn provision, head of sen here is obviously just concerned with budget, provision is hard to come by.

glimmer Mon 25-Apr-11 17:39:04

I second what the other have said. Early intervention is always a good idea and under no circumstance can it do harm. However, SALT seems to be the most directed at her issues. What other therapy's are you thinking of? (I guess you mention riding etc. - is that the kind of therapy you have in mind?)

used2bthin Tue 26-Apr-11 09:48:31

I am not sure really, she will be getting target time at school from sept and already is at playgroup, as well as having (fingers x) a nearly full time TA but only once a week visit from a SALT assistant (this is the intensive package our area replaces language units for under 7s with angry )

Someone mentioned OT to me but I am not sure if it would be something she should have. She has an ed psych who for now advises the school and playgroup so fairly good provision but all designed to help her cope with school really. I am hoping to do something that will give her the best chance of coping with her memory/neurological probs but not sure what really. Just ready to start trying something different I guess. Was also thinking horse riding or similar would be confidence boosting as it would require good large physical coordination which she has.

used2bthin Tue 26-Apr-11 09:51:04

ninja that sounds great your dd3 will get lots there I bet and just having staff trained and used to children with her needs is great, I am worried about mainstream for DD for that reason and if there was a language unit here for her age she would be in it as the earlier the better I feel.

I am going to speak to my boss about portage she may not be keen as its not something our area does but worth a shot.

used2bthin Thu 16-Jun-11 20:01:54

Just bumping this up as we had a genetics appointment yesterday about DD's learning difficulties and in fact the geneticist and a reg who was sitting in measured her head as being on the 0.4th centile still.

worried and waiting for eeg results which should be back by now. DD is having minor surgery on monday and I am worried they are ignoring my calls because they want to talk face to face when we are there anyway for that.

Also waiting for draft statement and she now has a cold so am worried that she won't get her op too, not a good week!

direlahere Thu 16-Jun-11 20:12:03

used2bethin our son has microcephally, we had a scan done very early on and huge area of the brain was affected and the prognosis wasn't great but our ds is a delightful 5 year old now who is achieving far more than we would have dared to have hoped. I may be missing something but I simply see microcephally as another label.

Sorry you have had a bad week and hope your dds cold gets better soon.

used2bthin Thu 16-Jun-11 20:17:59

thank you that is reassuring and yes it is just another label in a way isn't it. In terms of prognosis though I can't find much-or rather the information is very varied. dd is making progress which is the important bit but i am really worried about her long term health as she already has the genetic condition to contend with and we don't know yet how long people can live with it(no reason to think it is life limiting if managed properly but it is a fairly newly treatable thing so the oldest person so far is 50ish)

mind doing over drive I guess and just have this awful feeling about the eeg that is will have turned up something dreadful so they want to say it in person.

slightlycrumpled Thu 16-Jun-11 20:27:28

Hi used2bethin smile. You really are having a pants week!

It's easy to believe the worst and that they are avoiding your calls till Monday but they may just be busy, inefficient, cons away etc. Easy words I know but try not to worry too much.

DS2 is having long awaited palate surgery next week and I am on high alert cold watch. It is certainly stressful.

I wish I had pearls of wisdom for you, I just recognised your name and wanted to say hi and that it sounds shit at the mo.

<useless mnetter!>

used2bthin Thu 16-Jun-11 20:45:16

Hi slightlycrumpled how is life with you? Well obviously still fairly stressful if your DS is having an op next week! DD was booked in for this wed just gone but a nurse who knows her well spotted she was on the wrong list due to being medically complicated and so they postponed it. I was gutted but then we got the one through for monday and then dd woke with a cold wed so wouldnt have got it anyway then!

hoping she shifts it by mon but have been at the dr today as she has earache so if it developed into an infection she won't get the op. Gah so stressful isn't it, hope your Ds gets his and it goes well.

And I am very glad you said hi, I remember talking to you when dd last had surgery! And you are right that they may just be busy etc because her eCg took ages to come back and I only found out the results eventually by bleeping the dr who was meant to be analysing it-the results were normal she just hadnt got round to looking at it yet!

Can't ring again about the eeg so if they don't call tomorrow I will just have to wait till mon.

slightlycrumpled Thu 16-Jun-11 21:19:56

It's all change and chaos here. We got ds into a s&l unit and so far so good! It is a very early start for him and it was such a wrench to say goodbye to his old school but it all seems to be going well. The class has only ten children, yet he mixes with the mainstream too. Fingers crossed it stays this positive!

I am also dreading his surgery as he is so unpredictable with how he reacts to a GA. Roll on this time next week eh?

It's so hard with all of the chasing up for results isn't it? The thing that's hard perhaps for them to understand is that your heart will have been thumping with worry just from dialling the telephone number!

I really hope all goes well for her on

used2bthin Thu 16-Jun-11 21:40:17

Thank you and you too with DS next week. That is fantastic about the s and l unit, we don't have one for under 7s here but I know it is what DD needs so I understand how amazing that is.

The worry seems to be intermittent I can function normally a lot of the time but it is as if every now and then my brain opens up to the full extent of it!

Yes roll on this time next week and all done. Good luck.

TheTimeTravellersWife Thu 16-Jun-11 22:01:02

My DD has microcephaly. She has autism, dyspraxia/DCD, learning difficulties, speech and language difficulties. I have never been offered an MRI or a EEG scan. Have had chromosomal testing done, all negative and genetic testing has also been suggested, but as I don't plan on having any more children, not sure there is much point.
Have younger child who doesn't have microcephaly and so far seems to be NT.

Sometimes feel that I haven't done enough and should push for EEG/MRI, but dont want to put DD through something that won't acually help her, maybe I dont want to know the full extent of her problems; I just dont know why I have pushed her Paed more...
DD has a Statement and is in mainstream with significant support.
I dont think that anything can be done about the microcephaly itself, but certainly DD shows improvement in her abilities due to OT, SALT and differentiated teaching.
Most people don't even know about microcephaly, so I don't often mention it. I will check out the yahoo group, thanks!

used2bthin Thu 16-Jun-11 22:07:54

hi there, I know what you mean about not wantint to know if it won't help. Our paed said the mri maybe won't show anything other than the s and l bits of her brain arent working properly-whcih of course we know already.

Should have said, the reason she is having an eeg is mainly because she had two odd possible seizures. The mri will only be done depending on eeg results. I am hoping the eeg does show something in a way as the MRI will require a general anaesthetic. But obviously am terrified it will show something bad too.

I always get a surprised response if I mention dds microcephaly as she has loads of hair so her head looks big!

TheTimeTravellersWife Thu 16-Jun-11 22:21:22

DD rather petite. DS built like a brick $h!t house. They can swap hats. DS is only 2 years old and DD wears hats for a 2 year old still, although she is 8.
I read somewhere that children's head stop growing at about 7/8 years old, dont know if this is true, but worry that it will become more obviously out of proportion as she grows if this is the case.

BakeliteBelle Thu 16-Jun-11 22:31:15

The Microcephaly Support Group (MSG) publishes a useful newsletter called Connections. They've been quiet for a while but I just received my copy.

Microcephaly just means small head and people with small heads are more likely to be learning disabled, but not necessarily. DS was technically microcephalic at birth. Every head measurement brought stress and worry and if became an obsession (until we were told that he was blind, at which point the microcephaly became secondary). In the end, his head measurement just nudged into the 'normal' centile, but he is still severely learning disabled (not blind though - yay!).

TimeTraveller, your younger child may be affected by your DD's condition, should he or she decide to have children one day. This is why I really want a diagnosis for my DS1

TheTimeTravellersWife Fri 17-Jun-11 08:43:13

Oh that is such a good point Belle! I hadn't really thought of that at all, and I should have. Good "ammo" for requesting genetic testing when we next see the Paed.
Pleased to hear that you son still has his sight. I can imagine that the threat of blindness would take the emphasis of the microcephaly.

I haven't joined a specific microcephaly support group, but do belong to other groups.

Slightlycrumpled & used2bthin thinking of you both - hope that the surgery goes well.

Horse riding is Fab! DD goes through RDA, they are great and she really enjoys it.

BakeliteBelle Fri 17-Jun-11 09:13:06

Unique is a good organisation not just for rare chromosomes but undiagnosed conditions too. They have more money than SWANN and MSG

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