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DS1 is getting worse all the time -Biomed .

(10 Posts)
staryeyed Thu 27-Aug-09 10:46:14

behaviour, sleeping patterns, eating, sound sensitivty anxiety, attention has all got so much worse. He was getting better when we were doing biomedical stuff but we lost our way didnt have proper guidance and we have had a really busy year. I really want to be positive and start doing stuff to help him but I dont know where to start. We did have a nutritionist who was good but could only go so far iyswim. We then had an appointment with Dr Heard at Breakspear- then he left and then we planned to see Jean Muscroft but she is fully booked at the moment unitl atleast JAN 2010. We really need the guidance to restart and also want the testing becasue it was all getting a bit confusing.

DS is still on the diet GFCF but has had quite a few infringements- sneaking cheese and bread and nursery not following our guidelines. He also has multivits and enzymes (we tried the houston enzymes but they really didnt work for DS so we will revert to the original ones we used).

We also want to try the sound listening centre for AIT as ds comprehension is severly delayed and sound sensitivity has gone through the roof. Our funds are limited so we are applying to Caudwell but Im not quite sure what Im asking for yet.

So I guies what Im really asking is

Does anyone have a Dan doctor recommendation? we are in London BTW

Should I go ahead with the AIT before continuing biomedical stuff?

Also we had tried ABA before but quickly realised that we really couldnt afford it. I was thinking of maybe getting a fully trained tutor for a number of hours a week to work on DS skills. Would that work or would we need a consultant and supervisor?

improvingslowly Thu 27-Aug-09 10:57:29

i have no personal experience, but look at 'the autism clinic' website and see if you think they could help.
www.theautismclinic.com/ (sorry not sure about links)

bubblagirl Thu 27-Aug-09 10:58:07

i would seriously chase up melatonin for pad i was surprised at difference in all these problems with ds and when sleeping all radically reduced the older his got there virtually non existent now no sleep can really heighten everything so maybe try and get the sleeping issue dealt with then see where you stand with it then

im sorry i have no other help to offer as everything reduced once he was sleeping

bubblagirl Thu 27-Aug-09 10:58:30

from paed that should have said not for pad lol

saintlydamemrsturnip Thu 27-Aug-09 11:01:28

We used a fully trained tutor with no supervisor (I bought helpuslearn or whatever the manual is called) and it worked well for us. I realise now that we were very lucky with the tutor though, she really was excellent.

Will watch the rest with interest. After being GF for years ds1 is stealing food all the time and headbanging has become awful. I sometimes wonder about starting again with it but ds1 became so hard to get supplements into (impossible).

I personally would do biomed before AIT. But I think caudwell takes a while so apply now and you'll probably be able to roll in about 6 months time.

staryeyed Thu 27-Aug-09 11:16:34

bubbla- we already give melatonin but he wakes through the night and doesnt resettle.

thanks improvingslowly- I did look at the website but I really would like personal recommendations.

saintly- a lot of ds supps are/were liquid would that not work with your ds?

bubblagirl Thu 27-Aug-09 11:39:57

could you up the dose for melatonin at all?

sorry i wish i could help more but really have no advise on anything else as were never offered any other help at all so a lot of stuff have no idea what it is lol but i do hope some useful advise form others will come along for you good luck

staryeyed Thu 27-Aug-09 14:33:27

bubbla- we have messed around with the dosage but actually found that 2mls works just as well as 3 or 4. he goes off very quickly so its doing its job except for the night before last when he was so tired from having next to no sleep that he was too tired by bed time and stayed awake until 11.

bubblagirl Thu 27-Aug-09 15:41:20

we have messes with our dosage too and 3 mg seems to be the best but i have to get him to bed at the right time for him to have settled night

but also we have make do bed next to our bed that he will come to in middle of night as if he goes to his bed im up for hours if he goes into amke shift bed he sleep all rest of night they did say he had night time separation anxiety this works best for us as he settles quicker

staryeyed Fri 28-Aug-09 13:22:31

We are going to try the waking him up and then settling him back down thing now.

Does anyone have any DAn dr recommendations?

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