15 year old daughter has been having lots of time off school. not ideal in yr 10 and now 11.
I feel a bit guilty about it all, think I have dropped the ball on this one.
She had digestion problems when small, had an umbilical hernia repaired about 2 1/2- 3 years then several years of issues, vomiting, constipation mostly occasional poonami's . Put on few medications , movicol, lactulose Domperidone , for years, the latter obviously stopped due to safety concerns.She has had lots of symptoms that we assumed were anxiety strongly suspect she is autistic and or ADHD. So she is often sick, sometimes just nauseous sometimes actually vomits, then either constipated or diarrhoea , complains of being tired , but can't get to sleep, can't concentrate, confused describes it as her spaghetti brain, jokingly refers to it quoting Dr Who, " it's all wibbly wobbly, like spaghetti" but he was referring to time. Managed to get her a GP appointment, lots of discussion I said wanted full bloods and vitamins tested. She also has pots to provide faeces samples but she isn't keen. So Gp rang me just over 24 hours after bloods were taken, saying she was very concerned but rather than go to A &E she would refer to " Rapid Access clinic" at Alder Hey, saying we would be contacted within a week with an appointment.
So bloods serum B12 <150 ng/L 197.00 - 771.00 ng/L. report says both B12 and folate need repeating and ask for a new serum sample to be sent to immunology for Intrinsic factor antibodies, serum folate 2.9 ug/L 3.90 - 26.80 ug/L,
GP also said Lipids very high , so I asked for the numbers total is 4.5 <5.00 mmol/L but triglycerides are raised at 2 < 1.7 mmol/L . serum alkaline phosphatase 53 u/L 60.00 - 400.00 u/L HbA1c 41 IFCCmmol/mol <41.00IFCCmmol/mol . ESR says repeat 97 mm/h 2,00 - 19.00 mm/h.
I had hoped rapid access meant rapid, just got a text saying she has an appointment in January
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Polo22
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Has the GP taken blood to test for Intrinsic factor yet or prescribed b12 supplements or injections? If they’re waiting until January to do this I would get back to them about it.
What is your daughters diet like? Does she eat meat, fish or dairy? If she does then she may have pernicious anaemia and need b12 injections. If not it could be diet related and b12 supplements might work.
Get her tested for IF before starting supplements. Don’t supplement with folate until her low b12 is addressed.
I understand that eating a good diet can often be difficult for autistic children as I have 3 autistic grandchildren so hopefully that is all it is but it sounds like your GP is on the right track with the referral.
First and foremost DO NOT LABEL your daughter with Autism or ADHD. She will be sent to a Psychiatrist, receive a DSM-V label, given medication and her physical health ignored. The Mental Health (MH) system is in total isolation.
Your daughter has a Gastrointestinal Disorder with NEUROLOGICAL involvement.
1) Digestion problems when small.
2) Umbilical hernia repaired about 2 1/2- 3 years.
3) vomiting, constipation, diahorrea.
Your daughter’s brain is not getting enough oxygen or essential nutrients to function properly.
The NHS would prescribe a drug such as methylphenidate with a label of ADHD. This would be a Drug Error and Mismanagement.
Please ensure your daughter sees a Dietician. If you can afford please seek a private one. They are the Specialist. They understand Biochemistry.
It is worth buying Datis Kharrizhan’s book Why Isn’t My Brain Working ?
It is a dip in and out of.
Your daughter’s health is a big jigsaw. If she is given a MH label now then :-
1) By the time she is 21, she will receive another.
2) Aged 25, another MH label.
3) 30, another.
4) 40, another.
5) 50, another.
By which time, she may be so physically disabled and wheelchair bound. But everyone has ignored her because they just said, It was all in her head.
For myself, in 1994, without any testing, I was misdiagnosed with an Eating Disorder. Every time I presented to a doctor, they blamed it on my MH.
This year, I was finally diagnosed with Coeliac Disease. In 2020, I nearly died, 2 Private doctors rushed me into hospital. Although, I am quite capable.
I could afford private care and because I am a qualified Midwife I treated myself, I gained further qualifications. However, I would not be typing now to you because I was left to rot.
I had all these symptoms due to a shortage of B12: diarrhoea , sometimes vomiting, very tired, can't concentrate, confused. I like that visual of a spaghetti brain. The B12 cleared up all the bowel issues for me and made me feel like an energizer bunny. Very best wishes!
I hope this is how it works out for my daughter, spoke to Doctor today who was disappointed that Rapid Access is a bit of a misnomer , she thought daughter would be seen this week. She said she would try and get to talk to relevant peeps directly. Glad you feel better after treatment, long may it continue
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