Diagnosis? Have you received a Diagnosis and what were your experiences of getting one?

[FamilySupport]

We have had many stories of the difficulties in obtaining a diagnosis for FASD and hopefully with more experiences we may be able to improve the system we go through for a diagnosis.

[Brown]

Took two years. Then they shook our hands and sent us home. Really glad The FASD Trust has just produced a new leaflet for patients so that they are sent home by the doctor with some info.

[treeteddy]

yes have received a diagnosis after 6 years of battle with the health authorities was given no information was told to gone the web site fasawareuk/fasdtrust which has been really helpful and given much needed information. As professionals at local hospital dont seem to have a clue.

[Brent]

I have been trying to get one through the Child Study Center in Fort Worth Tx. and the only thing I was able to get was something that stated est. index pregnancy alcohol exposer. The birth mom confessed to drinking but they did not want to give the formal diagnosis of FAS. Doctor Renee Rodriguez has since moved to Houston Tx. who I think is a very good doctor. a Now being seen by Doctor Joyce Mauk who does not want to give a diagnosis at the time. I really don't like this process because it is a waste of time and money. It just simply takes to long for a diagnosis even with a confession. All the testing, family medical history and medical needs and ECI have been taking care of. The four digit code diagnosis would have been enough. I feel the PCP and genetic doctors have been more concern with the birth moms recovery, than my child's over all health. It took me to ask Dr. Renee Rodriguez for a referral to an ENT doctor for a high pallet that the PCP did not even talk or write about in medical records. I have to travel a long way just to get a diagnosis because the clinic in my area is closing. When talking to genetic doctor about FAS she did not even want to discuss it. In fact she did not even write down in her notes that we even talked about it. She wrote everything else but FAS. The stigma of FAS is so great many people don't even want to talk about it.

[Dudleycvs]

I met a young person who is 14 recently. Its very obvious that she has FASD, the local Health authority chose not to assess and provide a diagnosis, This young person if not from a home where parents are able to fight to get her the best support available. I really worry about her............

[Joygirl in reply to Dudleycvs]

Are you in a position to suggest they go to the GP? Are you able to offer to go with mum and yp to the GP? The GP is the one who can refer back into the NHS to either the Genetics team or Paediatrics. Just a thought, not sure if you can. It is so hard sometimes; i find it difficult but the truth is that we can't always help everyone - we can only do our best.

[Hidden in reply to Dudleycvs]

If this is aware of FASD and worried she can go too her GP and ask for a referal in her

own right if she is competent. See Gillik Competence . By a referal i meen too Genetic Clinic

[seahorse14]

After much frustration with a diffiuclt consultant paediatriatican who was also our daughter's adoption medical adviser who had met her birth mother and heard her re count the amounts of alcohol she at times drank during the beginnig and middle months of the pregnancy, I took advice from FASaware to see my GP and request he refer my daughter to a genetist. I even wrote down the details of the hospital and some brief details so he could copy it in to the referal. He looked at me strangely at first when I said I was worried my daughter was affected my alcohol prenatally as I hadnt mentioned I am her adoptive mum. He was happy to do the referal and we got out on a waiting list and it was a matter of months. However they did contact me in between and we had a lenghtly discussion about my concerns and why I thought she had FASD. I agreed to send all the information I had eg. adoption medical reports which detailed birthmother's drinking and hosptial admissions. I sent everything I could find prior to the appointment. The appointment took place in the same hospital as my daughter was born and I think the DR pulled her hospital file. I knew from my own work experiences that the birth mother had been on a specific ward that is used only for addictive mothers. A diagnosis was made that day although a further test for a rare chromsome disorder was also made and over 4 -6 weeks proved negative. The genetists was great and I have even called her since to clarify a few things. I wasnt sure why my daughter is tall when research strongly indicates alcohol usage causes growth retardation. It was explained that being an a spectrum means she doea need to fit all criteria. She was also able to explain why the origianl paed would not make a diagnosis ( she was overly focussed on attachment which is her speciality and of course being an adoptive child in her view proved this was the cause of the difficulties) - paediatricians are not qualified to make such a diagnosis.

[dianakitten15 in reply to seahorse14]

My adopted children are also tall and this question has been puzzling me for a long time ie. about growth retardation. They are both finally due to get genetic tests done but this has been a long struggle although chronic maternal alcohol abuse in this case is clear cut.

[Magicgem]

We have seen three paediatricians, the CAMHS ladies and a genetisist as well as a whole team of others. We had a verbal diagnosis of ADHD at one point, retracted when the report was written three months later. Our paediatrician has now asked that our little one and his brother, placed elsewhere, are seen by a psychologist or psychiatrist from CAMHS. I await any appointment, not yet sorted, with interest! We are now over 18 months on from when I first thought these boys had FASD.

[Hidden]

Anyone tried this applying the Law we did, then all backed off diagnosed in 3 months

Gillick Competence need too read it up'

Basic they said getting a diagnosis would be a stigma.

Child took it's self too GP explained as a competent child , able too explain own history,

Child is then treated as patient in own right without inteference from 3rd party's

[lallyloop]

I am a kinship carer to my grandson who will be 4 in march. had one referal comm paed said nothing they could do til he is 6 or 7 as he does not have the dysmorphic features and then told "There is no cure you know"!!! i said i knew that but I need some sort of diagnosis to access support, she then said it was wrong to label a child!! My daughter drank heavily throughout the pregnancy and alcohol and DV were the reason he was removed and placed in our care. So have a proven record of drinking, he is small in stature, small head circumference, had to be induced and was born mal nourished. severe speech and language delay - put down to early life trauma, has no recognition of danger, emotions behaviour is getting worse with age, nursery are now involving the inclusions officer and a referal for sensory and ICCS has been made. Also went back to the GP (first referal was made by HV) to go back to comm paed. Trouble is if he is with someone new he will sit as good as gold as it is one on one attention from someone different, it is not until he thinks he is on familiar ground that the behaviour really surfaces spitting, exposing himself, biting, throwing furniture and this is not a temper thing there is do defined trigger to it all. So no diagnosis still battle and looks like I will continue to for a very long time!!

[kumiko]

Our grandson was diagnosed last month with partial FAS as he has some but not all facial features, he also has the behavioural side. He is only 21 months old but I think it helped by having birth mothers drinking and drug history. G.P. referred us to paediatrician after we explained why we needed a diagnosis. We went armed with all information regarding our grandson. It will help as the nursery now knows he is diagnosed and this will follow him into school and so ensure adequate support is available for him.

[CherrylWalther]

Greetings! I know this is kinda off topic but I was wondering which voicesofamericatah.org/ blog platform are you using for this site? I'm getting tired of Wordpress because I've had issues with hackers and I'm looking at options for another platform. I would be great if you could point me in hairdressersballymena.com/ studiotregi.com/ the direction of a good platform.