Advice please?

Hi all

We have two adopted children , who at present we have documentation to state that child number 1, his birth mum drank through pregnancy. Child number one we have just had a peaditrician appointment and we have discovered that birth mum didn't know she was pregnant till week 25, so there is a possibility of FASD.

We are having genetic tests for both children which is in December ,in the meantime the separate peaditrician's have recommended child one to go on the ASD pathway to get some support, child two to be seen by the education psycholigst.

Yesterday we have been informed by the school that after the multi disciplinary meeting it was agreed that neither of these peaditrician's recommendations are to be followed!

They at this meeting which we as parents are not allowed to attend , said that they would rather wait for the results of the tests!

We are fuming! How can a education psychologist , LA inclusion officer, behaviour improvement team, CAMHS, ASD pathway co-ordination manager and language and School and Social Communications Team overturn two Peaditrician's recommendations!

Any thoughts please, as we feel we are constantly fighting for services, or help.

Kind regards D

17 Replies

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  • Go see your GP & get their help. Explain the Paediatrician's recommendations & School are refusing to help, and ask your GP to refer the children to paediatric Neuropsychology for assessment and also ask if he will refer your child to CAMHS.

    In your shoes I would be tempted to write a polite letter to school head teacher thanking them for advising you of the multi-disciplinary team's view, but you have spoken to your GP who is making the necessary referrals as per the Paediatrician medical opinion. You need to point out somewhere that you hold full parental responsibility not school nor local authority and it is not their decision whether or not medical advice is followed in respect of your children!!! Sorry, on a personal level I would fume too!

  • Thank you for your reply, just to get you more fuming. Our peadicitrican has made a refera already to CAHAMS , they reused to see them as they don't fit the criteria. So the school nurse has made a second referral again this was refused!

    Fuming!!!

  • Hi,

    Hopefully the genetics tests in December will clarify FAS for both children, which could then form the start of co-ordinated support for your children's health and educational needs. Clearly what is going wrong in so many of these cases we are all reading about here on health unlocked is lack of co-ordinated health care for our children. I sincerely hope the genetic tests in December starts this process off for you. Clearly it is unacceptable to hold meetings about your children without you being there, and for CAMHS to refuse to see your children (?!) this must be formally recorded.

    I wish you clarity and a co-ordinated response in December. Do not lose hope!

  • Thank you

    Just as a after thought how long is it before you recieve the results from genetics?

    Is this fed back to us from the paediatrician or are the results from the genetics department.

    Regards d

  • Hi,

    Results are given in the genetics dept and then sent out by post Ie they only do a blood test if they think there may be other factors (ie genetic) that may be causing your children's symtoms/behaviours.

    Where there is a clear history of pre natal alcohol abuse and other indicators are present ie. measurements of facial features/head circumferance and other physical/health indicators are looked at and behaviours etc taken into consideration, then there is no need to do a blood test.

    Take all paperwork along to the appt.

  • Hi DaveI831,

    I don't want to be a fly on the ointment but our Genetics appointment didn't get us anywhere - the boys had 'some features' that may be in line with FAS (along with most other symptoms / behaviours) but the Geneticist didn't feel confident enough to make an FAS diagnosis. Furthermore, because the testing of both biological parents was unlikely, other conditions could apparently not be ruled out so the whole visit was inconclusive.

    Isn't it outrageous that the school felt that such an important meeting could go on without you?!

    Couldn't you go back to the

    paediatrician ? It has taken us 3 years to get a referal to the paediatric neuropsychologist (though I have no idea what that is!) so I think that Joygirl is most probably right - it seems a good referral to get for answers!

    I don't suppose you could tell me why so many children are being referred to CAMHS????

  • Hi count-to-1o

    In my experience it was explained that the children are referred to CAMHS as alot of FASD behaviours are very similar to those on the autistic spectrum and they like to rule out autism/adhd etc on the path to diagnosing FASD. They can tick many of the autistism boxes but not all and the next step will be to look at FASD. This is where I am at the moment.

  • Hi Rachel

    We have had the diagnosis for FAS, as it is documented in our adopted sons notes. But just as a matter of interest, what support do you receive once you have had the diagnosis that is different to what you are getting now?

    Dave

  • Hi Dave

    I'm not sure how or even if the support changes when a diagnosis is given. Without an FASD diagnosis but with everyone involved believing that FASD is the case, my son is under the education psychologist and CAMHS have issued instructions to the school, at the moment, to put support in place as though he has Aspergers (even though he hasn't this is how his behaviours have manifested and the school has the ability to deal with this). He hasn't had a statement of education needs yet but his EdPsych seems to think this will be necessary. He is currently on School Action Plus. The school have put a calming tent in place, he works with a 5 point scale to deal with his emotions, they have a silver seal group which deals with emotions and helps build confidence. The school as a whole are onboard and are continuously working to help him overcome the difficult aspects of schooling. He showns signs of dyslexia and he struggles to keep up with written work and so he is allowed to do literacy on the ICT equipment and spellings on an ipad. He has obsessions and so his reading material is allowed to be related to this i.e. supercars (at the moment). Instead of expecting him to sit for long periods for school concerts/assemblies etc. they get him involved in the organising so that he is included but not overwhelmed. The school's attitude has proved to be an enormous help and they supportive of my views. This is definitely the key to the children being propertly supported and happy.

  • Hi,

    Request a second opinion with another genetics department at a different hospital.

    Hope this helps.

  • Hi Rachel

    That's amazing on how much support you get! Although we have evidence that birth mum drank for our son, the only evidence we have for our daughter is that birth mum didn't know she was pregnant till 25th week.

    This is why we decided to go for genetics to see if anything shows

    Dave

  • Hi I've scanned through some of your replies but not had time to read thoroughly so sorry if repeating. Right you need to address the issue with school meeting without you present and insist you are at all other meetings. The FASD trust have some great resources to give to teachers - all about me booklet and a guide for teachers. They also provide training for schools during twilight times or inset days. Lots of schools seem to need a diagnosis before putting in support. I hear that a lot. At the genetics appnt they must do a CGH Array test which is a blood test which tests for genetic reasons for your childs behaviours and difficulties. Often with FASD diagnosis health professionals rule out other conditions to then factor in FASD. Take all evidence of prenatal alcohol exposure and please stress to them only approx 5% of kids with FASD have facial features. Go back to your GP to support you. Sadly FASD kids rarely meet CAMHS criteria. My adopted son hasn't either. You should also try to get OT and SLT involved.

  • Thank you for the reply, may I ask what is SLT

    Dave

  • Sorry speech and language therapist- many chores with FASD have issues with language-their expressive language skills are great but have difficulty with receptive language..... They can talk for England so people respond at that level but what they understand from people talking to them can often get jumbled.... Then they appear to not do as they have been asked or do it in the wrong order or only carry out the first part of the instructions and get into trouble! But really their brains have not received/processed the information correctly. Hope that helps. Where do you live? The FASD Trust have some training on around the UK.

  • And they have support groups for families

  • We are near Liverpool, I am attending the trading session in Liverpool next month. I just wish that a lot of professionals would attend as well!

    Thanks again

    Dave

  • Oh dear, poor you! It's outrageous! But unfortunately it goes on all time I'm sure. It took me years to get a paeditrician appointment. We home-educate so I didn't have a school to go through. I just kept visiting the doctors over the years insisting that there were issues besides attachment difficulties (!) but I didn't know what (I didn't know about FASD til my eldest adopted daughter was 14). Eventually, through a lot of research and reading I worked out that it was FASD we were looking at and I also looked for a clinic. I found Dr Mukherjees clinic in Surrey. I took all this information (photocopied pages from books and website details) down to the GPs and insisted that I needed a referral to a paeditrician. Which I finally got! Then I had to 'educate' him about FASD without facial characteristics and I asked him to refer me to the clinic. We had to apply for funding. Which we got. And my daughter is now diagnosed. Phew! It took two years.

    All I can say is don't give up! Try the GPs, write to your local Parent Partnerships people (?) or try your local Adoption Support Team (we've had good experiences with them). We actually got the ball rolling originally by paying for a private Ed Psych assessment in 2012. Sometimes needs must!!

    This is real! And everyone needs to become aware of the C and YP in our schools, in the care system, and in the prisons!!

    Wishing you the very best and a big dose of strength, energy and determination!

    One step at a time

    Boots :)

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