Getting a Diagnosis of FASD

[NickyB18]

Dear all, this is my first post and I am hoping that those with more experience than myself can advise. Without going into too much detail, my daughter is exhibiting the majority of symptoms/behaviours associated with FASD. I am wondering about how to get her assessed? Is it through school? Her GP? Your help is appreciated. Nicky x

[StrawberryCream]

Hi Nicky

I am in a similar situation with it recently being realised that my son most likely has FASD. It maybe that a community consultant paediatrician can diagnose and it would be daughters GP who would make that referral. My son was already under a community paediatrician for ADHD so I was able to get an appointment for FASD to be considered. However, because my son only has subtle facial features (but is exhibiting all the FASD behaviours etc) the community Pead did not feel able to diagnose. So the community Paediatrician has written to my sons GP asking that he is referred to the national FASD Clinic. The GP has to commission the referral but when I spoke with my GP recently I was told the have no money to pay for my son to be assessed! This is the point where I am stuck at the moment. Meanwhile I am struggling to manage my sons ever increasing difficulties

[NickyB18 in reply to StrawberryCream]

Hi, thank you for your reply. Is the National FASD Clinic in Surrey? May I ask how old your son is? My daughter is 8 and in Year 4. What sorts of difficulties does your son experience? My daughter has short term memory problems, concentration and organisational difficulties, difficulty following rules, no awareness that actions have consequences. She finds it difficult to engage with her peer group and developmentally is closer to age 5 than age 8. Nicky x

[StrawberryCream in reply to NickyB18]

Yes, Dr Mukherjee at the Surrey Clinic. My son is 10 yrs and even though it was known that drugs and alcohol were used in pregnancy, because he didn't have any significant withdrawal symptoms at birth and because the facial features aren't obvious, it was all disregarded! He is year 6 so we are making secondary school applications which is a major concern because I think he will find it very hard to manage Sec sch. I echo the description of difficulties that your daughter is presenting with and add increasing anger problems and verbal abuse as he is very articulate. He has been diagnosed nearly 2 yrs ago with ADHD but it's more attention deficit and inability to organise his thoughts than hyperactivity which is more just a constant fidgeting. It was a therapeutic service that we were recently assessed by that noticed he most likely has FASD. When I read up about FASD it described my son 100% and also gave me an answer as to why his behaviour was becoming even worse when I was parenting with traditional approaches of consequences e.g. Loss of screen time. If he doesn't have the understanding of cause and effect no wonder he was reacting with even a bigger rage - because as far as he is concerned he didn't understand why his behaviour was being consequenced as he had no recognition or link to understanding he had done anything wrong.

Caroline x

[NickyB18 in reply to StrawberryCream]

Hi Caroline, it is good to chat with somebody who really understands. I worry a lot about my daughter in terms of her learning and her friendships. I watch her sometimes and she seems so alone. I am hoping that I will be successful in pushing for an assessment to determine where on the Fetal Alcohol Spectrum she is. I have just read an excellent book called 'Foetal Alcohol Spectrum Disorder: Parenting a child with an Invisible Disability' by Julia Brown & Dr Mary Mather. I have found it very, very useful. Nicky x

[StrawberryCream in reply to NickyB18]

Yes that book was recommended to me as well and it was reading that book that all my sons problems made sense as described my son perfectly! Up until reading that book my sons behaviour was both inexplicable and incomprehensible! The problem now is accessing an assessment and diagnosis if relevant. I think he does definitely have FASD and so i have started trying to parent using the books guidance and advice. It has helped lessen the rages a bit. How did you become aware that your daughters behaviour and difficulties fitted with FASD? I am frustrated by the fact this hadn't been thought of or considered before as the exposure to alcohol and drugs was known but had been disregarded.

Caroline x

[sarik]

Hi nicky,

I have 9 year old twin girls with a full fas diagnosis, they also have associated sensory processing disorder and auditory processing difficulties. Beth is also considered to have autism and ADD. At present they are in year 5 of mainstream education but like Caroline we aren't sure how they will cope with mainstream secondary. We are in the process of fighting for an ehcp at the moment.

To answer your original question,the girls were diagnosed following assesment by a consultant geneticist so maybe you could get your paediatrician or gp to try that route if funding for the Surrey clinic isn't happening.

Sarah x

[StrawberryCream in reply to sarik]

Hi Sarah

I wasn't aware that a geneticist could make the FASD diagnosis. Do you think that will be the case when the facial features aren't obvious but only subtle? The community paediatrician could have made the diagnosis had there been very definite facial features but wasn't prepared to say a definite yes or discredit the possibility. If a geneticist was able to diagnose without the high funding that the Surrey clinic requires that may be a preferable referral for the GP. Do you mind me asking where you accessed your Consultant geneticist?

My son also has Sensory processing problems. At the moment his Junior School choose see him as an uncooperative naughty boy and offer little support or do they consider getting an EHCP in place. I know I can start the request for an EHCP but I am holding off hoping to find out if he does have FASD as it would help the EHCP process have a more successful outcome.

I can't imagine the impact on family life of two children - twins - both with the problems you have told us about. I am struggling to parent just one child!

Caroline x

[sarik in reply to StrawberryCream]

Hey Caroline,

We are in lincolnshire but it was the genetics team from Nottingham that saw the girls. We had recently moved to lincolnshire from another county and when i spoke to the local authority regarding post adoption support i mentioned that we strongly suspected one of the girls had fas she immediately made the referal straight to genetics but i know paediatricians can do it as well.

We went to the appointment think one of our daughters had it but not the other and to us there were only slight physical characteristics. I made sure i took the documentation we had to prove alcohol exposure and following a full assessment of physical signs and behavioural/learning problems they were both diagnosed with full fas (although there are other diagnosis that can be made if your child doesn't meet all the criteria for a full diagnosis ). The appointment was about 2 hours long and the girls also had blood tests to rule out any other causes.

School are trying their best to be supportive but they really don't understand what we are dealing with. The girls have IPP's in place but no ehcp until they have been seen by the ed psych which is turning into another battle!

Hope this helps,

Feel free to ask anything else, i don't mind!

Sarah x

[FranHarris]

I have 2 sons and 2 daughters aged 6,7,8 and19 that we have been trying to get a diagnosis for for the past 3 years. We went through Gp to community paediatrician. I asked to be referred to the imaging centre in London knowing that it would be too expensive. They then asked if we would be happy to go through the genetics clinic in Bristol. This was what we wanted in the first place so we said yes. You have to ask for more than you want so you can settle for the outcome you actually want. Unfortunately money plays a big part in getting a diagnosis. We now have our appointment for 1st November 13months after our initial phone consultation with the genetics clinic.

[count-to-1o]

Hello there, we have 7 year old twins, year 3 at mainstream school, who have EHCP in place. It has taken us 2 years to get our FAS diagnosis, finally given at Great Ormond Street Hospital. Most professionals are reluctant to diagnose before the age of 6. You really need genetic testing first to rule out other syndromes. Your GP or paed can refer to both; you will need history of alcohol use in pregnancy (many children with FAS are also looked after children). Funding is a problem so often the Surrey clinic is hard to access, are you close enough to go to London? Our twins also have diagnosis of speech delay, ADHD, autism, anxiety disorder, behavioural & emotional issues amongst others. The FAS Facebook group (run by Julia & Simon Brown) is a terrific support. Hope this helps!

[StrawberryCream in reply to count-to-1o]

I am in Kent so London is accessible for me. Do you mind me asking who did you see at GOSH? Were your twins referred specifically re FASD?

[NickyB18]

Hi all, thank you very much for your helpful replies. Does anybody know whether it is possible to pay and go privately to Dr Mukherjee's Surrey Clinic? Nicky x

[Magicgem]

Hello,

the little one that I had, looked after, was diagnosed by a Consultant Psychologist through CAMHS. However, we also went to genetics prior and I'm afraid they weren't specially helpful as although he had some features they were not obvious. I imagine, as with everything, it is who you see on the day. I would suggest taking the evidence of alcohol misuse, together with a list of everything that concerns you to every single appointment that you have, with anybody, and if there are people that you don't see but you think they should know, send them a copy too.

The little one I had was initially diagnosed at just less than 3 with ADHD, verbally by a paediatrician who refused to put it in writing. However the verbal diagnosis was enough to get him 1-1 support when he went to nursery. I had to be very 'assertive' to get anywhere at all and particularly to get an appointment with CAMHS. I was convinced that he had a good deal more than ADHD going on and after I went to the Bruised Before Birth conference I knew it was FASD. Of course the FASD diagnosis recognises the whole list of things that are going on with these children, some of which some of you have listed. So you have your diagnosis then you have to get education to listen!

Please remember to apply for DLA, then you can use some of that money perhaps to see someone privately.

You are all doing a fabulous job. Good luck to all of you.

[NickyB18 in reply to Magicgem]

Hi Magicgem, Thank you for your helpful reply and encouraging words. May I ask if you - or anyone else on this Forum knows the approximate cost of a Private assessment at Dr. Mukherjee's Clinic in Surrey? Nicky x

[Magicgem in reply to NickyB18]

Hello, I believe that it is around £3000 but I think that you can probably check if you type his name in to Google. It may well say on the clinic site. I think that there may be a waiting list but I know that others have actually rung and spoken to him. Anything is worth a try.

Jan x

[NickyB18 in reply to Magicgem]

Hi Jan, Thank you for your reply. I will have a more detailed look at the Clinic Site. I got a book today that I ordered from Amazon 'Understanding Fetal Alcohol Spectrum Disorder' by Maria Catterick & Liam Curran. I have only read a couple of pages so far but it seems really great. Nicky x

[Magicgem in reply to NickyB18]

There are so many books, mostly American, some written by the young person who has the condition. The one by Julia Brown and Dr Mary Mather though is very good and, of course, relates to this country. I hope that you manage to find some help. Jan x .

[Geoff6751]

I can confirm that the fee for an assessment process is about £3,000. Also you will be asked if your child/young person will be committed to the process. I found that a difficult question to answer, as our son wants to be 'normal' and blows hot and cold about assessments and talking to professionals.

What I am not clear about is the situation regarding the FASD Clinic in Surrey. As an NHS campaigner, I am aware that the NHS has been fragmented by government policies over the last 35 years or so. It is run as a business these days rather than a public service, with competition and a market place. Some services have been contracted out to private providers, although they are entitled to use the NHS Logo. Here in Devon, NHS Children's Services are run by Richard Branson, who has a declared aim of making 10% profit from the contract.

I don't know at the moment if Dr Mukherjee's Clinic is a private for profit business, contracted out to some company or is still fully funded by the NHS. What I do believe is that prior to all this contracting out and the fragmentation of the service into separate businesses, we could have just gone to a GP, who would have made the referral to Surrey and the costs were all basically in house. I know his clinic began more recently, but that principle would have operated if the government hadn't made such a mess of the NHS. The Bevan model of the NHS did have some rationing, but I think it was on the lines of how well a procedure or treatment or assessment might benefit the individual.

Sadly, in today's NHS finance is the prime consideration, not the patient. Currently, across the country plans are being developed behind closed doors about things like the range of services that the NHS can afford to offer and whether funding should be just from general taxation. Given that the government has effectively frozen NHS budgets from 2010 to 2021, the situation is unlikely to improve.

Returning to the £3000. Whether or not the clinic is run by the NHS or a private concern, the fragmentation of the NHS means that each part of the service has to recover its costs from the purchaser. That will apply across the country, even in Surrey.

I'm sorry to be the bearer of such stark information.

[Sunshinerain]

Hi everyone, when I realised that my daughter may have FASD I called Dr Mukherjee's office and spoke to his secretary, she then set a date for a conference call with him, so he called me at a pre-arranged time. He chatted with me for about half an hour regarding my daughters symptoms etc. He explained that the facial features only play a small part in the diagnosis. I also explained that there was no proof at all regarding the birth mother having drunk alcohol during pregnancy (though the birth father had died of an alcohol related problem). He told me I should go ahead with contacting my GP to get my daughter referred to a paediatrician, and that there were some very good paediatricians in Brighton. The GP was reluctant to go ahead with it, but I wouldn't take no for an answer! The paediatrician we went to is fortunately very passionate about this subject, and knows Dr Mukherjee well. We now have a full diagnosis of FASD for my daughter, and an EHCP which had been a god send now that she has just started secondary school, and is getting all the support she needs.

Our paediatrician is now looking into our son with the view to FASD, even though their symptoms are completely different.

We haven't had to pay for any of this, and I would suggest contacting Dr Mukherjee's office for advice if you're not getting any support from your GP, as it definitely helped me by mentioning his name when I first spoke with the GP about my daughter.

Good luck to any of you that are starting down this path, as understanding FASD is definitely a great help.

[Tinkyandbobby in reply to Sunshinerain]

Hello Sunshinerain,

I've recently joined this group and have read this message trail with interest. I've also had a conversation with Dr Mukherjee. I suspect that our DD has mild FAS, which is deceiving as her spoken language is slightly above her age range and she seems to me to have no physical features at all. However, all the symptoms described for FAS are apparent in her everyday life, with behaviour paying out at home in particular and short term memory and school work, coupled with Sensory Processing Disorder and Auditory processing difficulties and Dyslexia.

I'm currently looking at the 72 pages of a DLA form, thinking about visiting the GP to ask for a genetics testing at Great Ormond Street if poss and looking at a more recent Ed Psych report. I am writing to ask how you began the steps for an EHCP? I've written to the school SENco earlier in the year, but never had a reply. I've mentioned it to the SENco in meetings over the last 18 months but always told that cases worse than our DD have in the past been rejected by the borough and that she wouldn't stand a chance. Ultimately, I wonder if she would be better off in a school that has small class sizes and specialises more in this field. But of course these are fee paying schools and most LAs have little or no funding. At any rate, we are as yet no where near this dream. Do you have any suggestions please of the steps we would need to follow for an EHCP?

Thank you so much.