Advice on getting diagnosis

[lostkeys]

Hi, I'm new on here, I have a foster daughter (just in process of becoming her legal guardian), and new information has become available about her mum drinking in early pregnancy, which we were assured hadn't happened, but now it appears that she did binge drink. I am kicking myself for not seeing it before but now I can see that this little girl ticks many of the boxes for FASD, although she does not have the facial features. I am wondering if it is worth trying to pursue a diagnosis, what does it entail, I wouldn't want to put her through endless blood tests, scans etc and then be told it was inconclusive. Her unusual behaviours/problems we had put down to attachment problems and perhaps adhd history through dad who was unknown. But it seems to us now, that they really fit FASD better. Any advice would be very welcome. Thanks.

[Tooks]

Hi , I'm new on here as well I've got full guardian ship of my 5yr old grandson, who been in our care since he was 4wks old . We are also going through the process of getting some answers regarding our grandson. Pedatriction have said likely drugs and alcohol exposure in utero . At first we thought it could be effect from the meningitis or ADHD as his bio dad is , didn't cross our minds it could be pFAS . I'm fighting with the school ATM to get him 1-1 as he is on the school register as high needs also fighting county council about escorted transport as they provide a mini bus due to living in a village. There has been a couple of issues on the mini bus where this week the mini bus driver refused to bring my grandson home from school due to the flapping of arms and being loud , I had to call my husband out of work he had a complete meltdown as he had forgotten about why he wasn't allowed on the bus to blaming the driver he is nasty for leaving me at school and not bringing him home to his safe environment. I have research and my grandson does fit under the umbrella for pFAS .

[TheSensoryProjects]

Hello

Simple answer is yes it is worth pursuing the diagnosis. Facial features often soften with age, so depending on the age of your daughter they may be more or less apparent.

The reason it is worth pursuing is because how you support her will be very different depending on whether she has FASD or not. For example some FASD symptoms appear very like ADHD, but the medications for ADHD are not suitable for someone with FASD. Another example, but this time not a medical one, is how you would support her in understanding behaviour. FASD is a physical disability in the brain with social symptoms. If she has FASD parts of her brain may be undeveloped or even missing. Where a child with a behavioural difficulty might have a limited understanding based on a lack of early good models of behaviour and be able to have that compensated for by a patient and understanding supporter, if a child does not have the parts of the brain that deal with that understanding no amount of patient explanation will help, they will need an entirely different strategy.

Although labels are not always useful, and the individuality of the child is always the primary thing, knowing the underpinning causes for what you are facing together is a very powerful thing.

Best wishes

Jo

[Tinkyandbobby]

The GP is the first port of call. Our DD that we adopted may have something similar, i.e. no facial features. You might find that her memory is poor too. Can't take too many instructions, or forgets or gets distracted along the way? Last year our DD was diagnosed with SPD (similar, but not ADHD).

Might she have Dyslexia too by any chance? Struggles to hold a pencil, or draw inside lines etc. There is a clinic in Surrey, an NHS clinic that your GP could refer to for FASD diagnosis, but like all appointments, it Costs. It would cost your health authority 3.5K. Dr Muhargee (?) runs the clinic.

There are some amazingly helpful You Tube sites with talks from experienced researchers from Canada and the US. They are so advanced in this field.

[lostkeys]

She has no facial features but many of the behavioural markers, although they could also be due to other reasons of course, adhd, attachment problems etc. She has poor memory, gets muddled with time, gets distracted easily, flits from one thing to another, finds it hard to follow rules, is very active and shows some symptoms of adhd. She has poor fine motor skills but good gross motor skills. She is extremely verbal, friendly and lovely child but sometimes I wonder how much she understands of what I am actually saying to her, even though she can talk very well. She struggles with understanding what a stranger is and hugs other adults in park etc. I could go on and on. She is kind and tries her best. She was doing well at school and we hoped she would grow out of these tendencies, but instead, the other children are progressing and she appears stuck so that she now appears younger than her year 1 age. Does that sound familiar to you?

[Magicgem]

Hello All,

to anyone new to this condition I would suggest buying the book - Foetal alcohol spectrum disorders- Parenting a child with an invisible disability by Julia Brown and Dr Mary Mather. Also, as someone has already said, go along to a support group. Contact the FASD Trust for your nearest. There will be people there on the same journey as you, just in different places. The FASD Trust also have leaflets, booklets etc.

Take care xx

[Threebecomefour]

Hi my adopted daughter is now 9. We started pursuing a diagnosis at around Year 1 as well. She was diagnosed with ARND in Year 3. She has a secondary diagnosis of ADHD which is useful as more people understand that part. Our GP had never heard of FASD. I had to fight him to refer her to a paediatrician. The ADHD meds didn't work as mentioned above but she now sleeps well with melatonin. She is improving with age. Some of her behaviours are calming down. She swears now rather than melts down (mostly). School have finally started to understand her thanks to an Occupational Therapy assessment and an Edycational Psychology assessment. The OT changed everything for us in school and backed up what I'd been saying for several years. We're waiting to see Dr Mukerjee at the FASD Clinic in Surrey. You might need to push for a referral. I'd ask the FASD trust for the names of paediatricians in your area who are able to diagnose and contact them yourself and get them to agree to a referral. That's how we overcame the problem with our GP. The book mentioned above is great and helpful.

[lostkeys]

Thanks, I have an initial appointment with GP next week, fingers crossed

[lostkeys]

Initial appointment went really well. The GP agreed that there was enough evidence to make a referral to paeds appropriate and an appointment will come in due course. Phew, first hurdle cleared! Thanks to all for advice.

[lostkeys]

Does anyone have any advice what to say to the paediatrician to convince them to take this forward? Thanks

[Joygirl in reply to lostkeys]

Your paed will see that your child has developmental difficulties. Ask as well if a referral can be made to speech & language therapy to assess her receptive language; you are probably right about the fact she is not really understanding you. And have school mentioned an EHCP yet? Would recommend starting to apply for one.

[lostkeys]

Hi, we had our developmental paediatrician appointment today. She has referred us to OT, speech and language, and genetics, so I am quite pleased as it seems to be moving in right direction. But she did say it would be borderline whether they could diagnose FASD with no facial features and a head circumference within normal limits. Which made my heart sink as I have done a lot of research now and know that many children don't have facial features. We are returning to the paediatrician in six months time with the reports hopefully and maybe she will diagnose, maybe not. Does anyone have any advice as to what to say at this next round of appointments?

[Tinkyandbobby in reply to lostkeys]

I've just been following this flow of conversation. Strangely I wrote some months ago, but I didn't see the responses.

I would be keen to know whether your first appointment with the GP was alone or with your child + if your child now knows what process you are going through and why. I am concerned whether or not to mention it to my child.... as I think she may use it as something to play with or give it as reasons as to why she can't do things that we try and help her with, be it home, social or school.

The school were so reluctant in going through the EHCP route, and I didn't know how to begin unless I had some expensive legal help maybe. So we ended up moving home six months ago and have found a different school and independent one with small class sizes and lots of countryside space for her to run, climb and have fun. She is rather sheltered here, but her behaviours are surfacing in situations at school. Dyslexia, Memory problems and Sensory Integration disorder. I could go on, but I won't.

But just to say, she has no facial features, but all but one of the symptoms. I have wondered for quite some time now how on earth she will survive in the wider world as an adult.

Many thanks.