Parents stories

The hormone connection

I would like to relate to you my experience with my daughter and how, by supplementing deficient hormones, her life has been transformed. My daughter was born by elective caesarean at 38 weeks as my son had been a brow presentation. All appeared fine, although I was concerned at her lethargy and how I had to wake her to feed her. At six weeks she was admitted to hospital with suspected meningitis and given intravenous antibiotics. She did not follow a normal developmental progression, being unable to hold her head up when lying on her tummy and not crawling. Instead, she got up and walked at 10 months with no cross pattern in other words, she moved her left arm and left leg together and the same with the right side. There was no babbling, just lots of screaming. She suffered several urinary tract infections, severe impetigo (a bacterial infection of the skin, causing sores and blisters) and croup (a respiratory condition characterised by a barking cough or hoarseness). She dribbled constantly. Feeding time was a nightmare, as she would just try to stand up in her chair and laugh. There was no speech and, at three years old, she was diagnosed with severe verbal and oral dyspraxia. She was immediately placed in a pre-school language unit, where she was taught Signalong, a form of sign language, and given intense speech therapy. She did not respond to the speech therapy and I was told that she may never speak. I wasnt happy with that and took her to a practitioner of applied kinesiology, a form of diagnosis

Doctors were of little help to Mary Kidson in alleviating her daughters multiple health issues and autism. But her determination to find answers eventually led her to discover and then treat hormonal problems with results that have been so amazing she now looks to the future with great hope
released her mouth muscle and finally she started to speak. Luckily, the language unit was attached to a school that already did Brain Gym, so they were very open and impressed. The urinary tract infections continued and several times my daughter was placed on prophylactic antibiotics. She was never very active, always at the top end of her weight charts and looked puffy. She was, however, extremely impulsive, with no awareness of danger. This meant she needed one-to-one support at school when she was in the playground and during games and PE. She was found to have severe long-sightedness, needing lenses of +10. Over the years she complained of aches and pains in her limbs and joints; she struggled with any physical activity and was always tired. She was diagnosed with hypermobility (unusual flexibility of the joints) and low muscle tone, and this was suggested as the cause for all those issues. She made great progress with her speech and language and academic abilities, but, from about the age of six or seven, she started to regress. Sensory issues became a big problem and she was diagnosed with sensory processing dysfunction. At the age of nine she
www.autismeye.com

Mary Kidson: her inspiring story is one of following her mothers instincts despite many voices of criticism and now being rewarded by seeing her daughter make rapid progress

It was getting difficult to see any medical professional, as they were beginning to question my mental health. But I knew that my daughter was ill
using muscle testing as the primary means of evaluating how a body is functioning. I was given Brain Gym exercises to do with her. The first breakthrough was with the energy yawn, an exercise where you are supposed to put your fingertips against any tight spots you feel on your jaws and make a deep, relaxed yawning sound, gently stroking away the tension. This

was also diagnosed with autistic spectrum disorder. By this time she had withdrawn from her peers and screamed in public when frustrated. She had also imposed rituals on herself and the family; for example, she would get dressed in a fixed routine and we had to start again if this was varied in any way. She had limited facial expressions, smiling virtually all the time and giving the impression that she was happy. She took statements literally, used a high-pitched voice and copied other peoples voice patterns.

Before treatment: holidays and home life were overshadowed by concerns about Marys daughters health issues

Increasingly withdrawn
Auditory processing disorder was also diagnosed, together with slow processing, dyslexia, dyspraxia and specific language impairment. Gradually, my daughter was becoming more and more withdrawn and she started to handflap and rock. Physically, she was very immature. The urinary tract infections continued, she wet the bed most nights and did not have full bladder control during the day. She also had chronic constipation and was prescribed Movicol; it gave her more stomach aches so we stopped using it. She started to wake up feeling stiff and with puffy fingers. I took her to her GP and a hospital. They couldnt find anything wrong.
www.autismeye.com

Later, she developed a butterfly rash on her cheeks typical of lupus (a disease where the bodys immune system becomes hyperactive and attacks normal tissue). She also developed extreme fatigue. Again, neither the GP nor paediatrician could find anything wrong, other than telling me she had a photosensitive rash and needed to wear sun-cream all the time. It was getting difficult to see any medical professional, as they were beginning to question my mental health. But I knew that my daughter was ill. By now, she was struggling to get up in the morning she had not slept well for years and always took a long time to get to sleep. I would have to stay with her for well over an hour each night, holding her hand as she was so anxious and frightened at night. She would often wake up screaming and would take a long time to get back to sleep. She would arrive home from school and scream from the moment she got in to when she went to bed. Eventually, she was having more time away from school

than attending it. The local education authority and school were both very unhelpful. The school was refusing to implement her statement: they had written her off, saying she needed to be in a special residential school as she was too dependent on me. I didnt want this; neither did her father nor my daughter herself. After much discussion, I decided to home-educate her. At least that way she could get the rest that she needed. This was when I started to implement biomedical interventions nutritional supplements, OxyPowder for constipation and other treatments for healing the gut. There was a lot of work to do after all those antibiotics she had taken. I also started the Scotson Technique, a therapy that focuses on strengthening the diaphragm, as there were problems with her breathing. We saw amazing gains with this and her body shape changed, but she had severe detox symptoms such as cloudy, stinging urine and an itchy rash. We tried Epsom salts baths, a lowoxalate diet and Vitamin K. For me,
Au t i s m | e y e I s s u e 7 2 0 1 2 19

18 Au t i s m | e y e I s s u e 7 2 0 1 2

IMAGES COURTESY OF MARY KIDSON

Learning for Life and Work

FOR YOUNG PEOPLE WITH COMMUNICATION AND LEARNING DIFFICULTIES

Parents stories

Our school

Our college

Our farm
Our farm offers a range of programmes, work experience and apprenticeship placements.

this highlighted the fact that something else was wrong and I have since found out that breathing problems can be due to hypothyroidism, where the body produces a reduced level of the thyroid hormone. By the winter of 2010, when the snow was on the ground for weeks, I had to keep the curtains shut all day as my daughter could not stand the brightness. She also had severe headaches all day. She spent her life either in bed or on the sofa.

The Royal School for Deaf Children Margate caters for children who have hearing impairment and additional needs including emotional, behavioural or medical problems. We can also meet the needs of children with communication difculties.

At Westgate College we continue to build upon the knowledge and skills that young people have gained through their school education. Students have access to a range of qualications and support appropriate to meet individual needs. We offer vocational and non vocational programmes from 16 yrs onwards.

Desperate by now
All this was dismissed by the GP as chronic fatigue and the result of not being at school. Her weight continued to rise, so that eventually she became obese. The GP continued to suggest that I was feeding her the wrong food and that she was not getting enough exercise. I was desperate by now. My gut feeling was that there was a hormone issue: I had been reading about the signs of hypothyroidism and these seemed to fit. I joined the Thyroid Patient Advocacy group, (TPA) and they advised me to have some thyroid blood tests and a 24-hour adrenal stress profile carried out. The blood tests came back: she did appear to be hypothyroid. The adrenal stress results were shocking: in the morning she had very little cortisol (a hormone that increases the flow of glucose to the bloodstream to boost energy and physical readiness to handle a stressful situation or threat), and almost none throughout the day. She also had almost no DHEA, a hormone that balances many of the effects of cortisol, improves memory function, boosts energy levels and reduces fat production. No wonder she had a headache and no energy. This led to a short synacthen test, used to check the bodys level of cortisol and how well it can produce the hormone, which the NHS pronounced normal. She had a routine eye test. The optician took photographs of the back of the eye, which showed abnormalities suggesting there may be a tumour. The optician wrote to the paediatrician, who
www.autismeye.com

The Royal School for Deaf Children Margate & Westgate College
Victoria Rd, Margate, Kent CT9 1NB. Telephone/Textphone: 01843 227561 SMS: 07797 800015 Fax: 01843 227637 School email: enquiries@royalschoolfordeaf.kent.sch.uk Website: www.townsendtrust.org

Part of The John Townsend Trust

A day out: Mary with her daughter when she was getting desperate before beginning treatment

The prognosis from the NHS was: well see her again in three months and see what happens. I was astounded and extremely upset. How could my daughter be left like this?
referred her to the ophthalmologist, who promptly dismissed it. I now know that changes at the back of the eye can be a sign of hypothyroidism. a private paediatric professor in endocrinology (the study of hormones) at The London Clinic in Harley Street. He diagnosed a gonadotrophin deficiency: she had very low levels of the hormones FSH, LH and oestrogen. He recommended an MRI scan to rule out a tumour and referred her back to the NHS. I had the MRI scan carried out privately as I wasnt prepared to wait the 12 weeks that the NHS was offering. However, the NHS carried out a bone age scan and a scan of her ovaries. The former showed she was well below her expected height, while the latter was shocking: even the operator was shocked, as my daughters ovaries were the size of a six-yearold girls and the womb had not developed either and my daughter was 13. The MRI scan showed that the anterior lobe of the pituitary gland was small; in addition, it showed she had had a remote vascular insult (stroke) at an early age and a slender corpus callosum (the
Au t i s m | e y e I s s u e 7 2 0 1 2 21

Deficient in iodine
I started to research the hormones in more depth and began giving her iodine; she felt more energy straight away. She was clearly deficient in iodine, as her thyroid gland swelled up for the first week to take up the iodine. Dr Daniel Goyal, then at the Breakspear Hospital in Hemel Hempstead and now at Londonbased Sincere Health, was extremely helpful. He initially thought she had Cushings syndrome, suggested by her body shape and buffalo hump. His letters to the GP and paediatrician were ignored. We ran a lot of tests, including several 24-hour urinary cortisol tests, and all of them came back with low readings. Blood tests indicated a degree of hypothyroidism. Dr Goyal eventually referred my daughter to

Specially designed standard & bespoke furniture for your living environment.

Parents stories

Created by Parents to Make the Difference

bundle of nerve fibres that bridges the two hemispheres of the brain). The prognosis from the NHS was: well see her again in three months and see what happens. I was astounded and extremely upset. How could my daughter be left like this? She was referred to a neurologist, who prescribed amytriptyline for her headaches, saying they were related to stress. She hasnt taken any.

Into my own hands

I decided to take things into my own hands. I had some 1% hydrocortisone cream in the house and I gave her a 1cm dose. The headache disappeared within an hour. I bought Dr William McK Jefferies book, Safe Uses of Cortisol, and started to treat my daughter according to his instructions. She had started to show more symptoms of low cortisol, including going very tired if she bumped herself, and going dizzy and feeling sick when she fell off her pony. None of this happens any more: we seem to be at a good daily dose that keeps her well. I can always tell when she is low in cortisol as she regresses into being very immature, weepy and demanding. I will now administer a dose before any physical activity or stressful event and when she is ill. This has made a huge difference to her, as she can now take part in activities that she previously found difficult. In his book, Dr McK Jefferies points out that mild secondary (pituitary in origin) adrenal insufficiency is characterised by a baseline plasma cortisol level either low or in the low-normal range, but with a normal response to Cortrosyn stimulation. This was my daughters result from a short synacthen test. The NHS only recognises the two extremes either Addisons (no cortisol) or Cushings syndrome (too much cortisol) and nothing in between. Low cortisol is often present in chronic fatigue. Cortisol is an essential hormone for life and low cortisol is implicated in allergies and autoimmune diseases, among other conditions. I was encouraged to read in the
www.autismeye.com

After treatment: Marys daughter looks more healthy and finds it easier to relate to other people as empathy has developed

She has become stronger emotionally. We have fewer and fewer outbursts, and if there is one I know that she is low in cortisol and I give her an extra dose - and she improves
book that supplementing when cortisol is low can lead to correction of gonadal dysfunction. I still felt that she was hypothyroid, so I decided to try her on natural dessicated thyroid. After the first dose the following morning she was not stiff and her fingers were less puffy. This confirmed to me that she was indeed hypothyroid (pituitary based) and it shows that clinical symptoms are more indicative than blood tests. We have adjusted the dose over time according to symptoms. The brain fog lifted, her face became brighter, her energy levels improved further. She started to grow dramatically. Another sign of hypothyroidism, soft and flaking nails, is resolving and her nails are much stronger now. I added the dietary supplement DHEA, as her saliva test had shown she had very little of this hormone. Immediately, the anxiety at night disappeared and her sleep quality improved. I no longer have to sit with her or go back every 15 minutes or give her homoeopathic chamomilla and aconite for the anxiety. She has stopped asking me if the doors and windows are shut when she is in bed. I now kiss her goodnight, shut the door and leave. I cant tell you how wonderful this is.

Home From Home Care was inspired by Laura, our lovely, unique and very special daughter.
We support adults with complex needs in residential homes and welcome placements from all over the country. Being parent-led, we are renowned for offering a specialist, quality service that puts people at the heart of what we do. As a mother myself, I understand the things that keep parents of children with special needs awake at night. I also know that thinking about the future is very daunting.

Being informed when considering your childs future adult life is essential. My name is Ann de Savary and, as Lauras mother, I would like to invite you to get in touch to talk through your options for the future or to visit our Homes to see how different we are.
Be informed - Get involved
Read our blog on Transition

Under less stress

Interestingly, she now takes less DHEA than she did. Maybe, now that my daughters body is under less stress, she is naturally able to produce more DHEA. One of the improvements I have seen with the cortisol supplementation has been an evening out of her emotions and not only a maturity, but also a change in her thinking. She has become stronger emotionally. We have fewer and fewer outbursts, and if there is one, I know she is low in cortisol and I give her an extra dose and she always improves. I was very concerned about her low oestrogen levels, feeling that this was a big problem for her. It was difficult to know what to do. My research showed that oestrogen
Au t i s m | e y e I s s u e 7 2 0 1 2 23

Paul, Ann & Hugo de Savary

www.createdbyparents.com

Autism, Epilepsy, Cerebral Palsy, PMLD and High Vulnerability

www.homefromhomecare.com

Tel: 0800 587 0372

Parents stories

levels in a girl normally rise from about the age of six, leading to gradual sexual development and emotional maturity before the main growth spurt and hormonal changes in puberty. The NHS carried out a gonadotrophin challenge that showed her pituitary could respond, so the NHS concluded that she couldnt have a gonadotrophin deficiency. No explanation was given as to why her development was so delayed.

Happy days: with her pony and receiving a rosette - both images taken after the start of treatment

Giving oestrogen
I felt that she needed oestrogen, so I researched how a girl was treated who had Turner syndrome, a chromosome disorder that prevents the ovaries from developing properly. The treatment involved giving oestrogen in small doses, and gradually increasing the dose to pubertal levels to instigate normal body changes. As I knew that my daughter still had a lot of growing to do and, as oestrogen fuses the growth plates in the bones, I knew that I had to be careful how much I gave her. Further research into quantities gave me confidence to go ahead. I found out about oestrogel and started to use this. Again, the effects of the oestrogen were overnight she felt so much better, was brighter and had more energy again. Other effects of the oestrogen over time have been particularly amazing her auditory processing and speed of processing both dramatically improved.
www.autismeye.com

This led me to research on the way oestrogen controls the manner in which the brain processes sound waves. The effects of this are wide ranging: it means that her understanding of the world around her has changed she can now understand language that she couldnt before and this is improving all the time. She is now very aware of emotions in other people and is very aware of her effect on other people. None of this was there before. Emotionally, she is maturing by the day it is the most wonderful thing to see. She has empathy now that was not there before. Another big effect of the oestrogen has been on her memory, which is now greatly improved, especially her verbal memory. Again, the effect of this on her life has been profound she can spell, she can read better, she can remember things now. All of this has been achieved while she is still on only half the dose expected for her age. Her body is changing slowly, as she is not on enough oestrogen to stimulate puberty properly. One of the effects of oestrogen is to increase the need for growth hormone. I had no idea if my daughter needed growth hormone, other than a gut feeling that she did and also knowing that a buffalo hump can be due to a growth hormone deficiency. This is much more difficult to administer and needs to be given by injection. Not

The anxiety at night disappeared I now kiss her goodnight, shut the door and leave. I cant tell you how wonderful this is
wanting to do this without a confirmed deficiency, I decided to try a homoeopathic growth hormone promoter patch. Yet again, we had an overnight change. In the morning my daughter felt better and had yet more energy. These patches have become essential to her and if I run out she soon becomes very tired. As I still have concerns, especially about her fertility, and am aware that I need to keep testing hormone levels, Dr Goyal has referred her to Dr Thierry Hertoghe in Brussels. He is a hormone doctor and will look at everything in depth. I have been using one of his books, The Hormone Solution: Stay Younger Longer with Natural Hormone and Nutrition Therapies. This book has helped me understand what hormones do in the body; while it is aimed towards anti-aging, it has been very relevant to my daughter. The hormone questionnaire in it was particularly useful: it showed that my daughter was short in
Au t i s m | e y e I s s u e 7 2 0 1 2 25

Ofsted Outstanding specialist care services for children, young people and adults on the autistic spectrum

Parents stories

All our services are fully accredited or in the process of achieving accreditation by The National Autistic Society.

Adult Residential Services For people aged 18+ Watermill House North Lincolnshire The Thicket West Yorkshire

The Options Group ASC Pathway

Specialist Schools For young people aged 8-19 Barton School North Lincolnshire Higford School Shropshire Kinsale School Flintshire AALPS Services Transitions Services for people aged 16+ AALPS North North Lincolnshire AALPS Midlands Worcestershire AALPS Cymru - Flintshire

Community Support Services For people aged 18+ Bredon House Worcestershire

Once in care, in specially-built surroundings with trained care staff to look after him, a whole new world opened up... (Parent of a student at Higford School)

on So 12! ing er 20 en Op temb p Se

Options Group is a leading provider of specialist services for children, young people and adults with autistic spectrum conditions offering: Flexible residential placements Dedicated respite and short break services Day services Specialist outreach services

For more information about our services please call 08442 487 187, e-mail info@optionsgroup.co.uk or visit www.optionsgroup.co.uk.

The staff are extremely competent and caring. The home provides my son with the individual independence and atmosphere he requires.
Our specialist autism services provide high quality, person centred support:

Get the flags out: Marys daughter poses with Jubilee bunting, showing how much she has changed

nearly all of the hormones. I now have a changed daughter. I no longer consider her to have ASD it was all a symptom of hormone deficiency, as were the sensory problems, the low muscle tone and the hypermobility, which are all virtually gone. Her slow processing speed and auditory processing problems, too, were hormonal in origin. She now speaks to people, answers them, makes appropriate eye contact and is just amazing.

Dramatic growth
While she has not lost weight, her dramatic growth (six inches so far) has meant she has grown into her weight and she is starting to look tall and slim. The fat tummy is going, the buffalo hump has almost gone, her skin heals quicker. Her old clothes dont fit and she can now wear jeans, a big thing for a teenager. We go for long walks now unthinkable even a few months ago and we regularly take the dog up the Malvern Hills. We got up at 4.00am to watch Venus crossing the sun; again, my daughter could not have coped with this before.
www.autismeye.com

We can provide support:

We have recently been camping her first experience, and she coped very well. My daughter is and looks very well. She has not had a urinary tract infection since starting the hormones, nor any oxalate issues or itchy skin. Her body is getting rid of toxins naturally. She can tolerate the sun better, the photophobia has gone. We still have to be careful that she doesnt burn in the sun, but there has been an improvement low levels of the ACTH hormone may be the issue here. How do you cope when you have been caring for a sick child for years and they suddenly get better? With great difficulty. The changes have been so rapid its

For more information or to make a referral please contact:

CMG - Southern England Aine Ni Chonchuir CMG - South Wales Claire Gunning

www.cmg.co.uk

We go for long walks now unthinkable even a few months ago and we regularly take the dog up the Malvern Hills

been hard to take them in. I am enjoying my wonderful daughter, relishing her new life and looking forward to the future with hope and brightness. We still have off-days, there are times when the hormones are not right or we forget a dose, but we know what to do now and these incidents are becoming rare. We have recently been to visit friends and family. They have been astounded at the difference: as one friend put it, she is no longer welded to my side. After years of being told that I am over-protective and that her dependence on me was not good for her she has naturally grown in independence. I havent had to do anything: it was all down to hormone deficiency. We dont know the reason for the hormone deficiencies its presumably due to the small anterior lobe of the pituitary gland, though the remote vascular insult that she sustained at an early age may be the cause. She has a lot of catching up to do, socially and academically, but shes still only 14 years old and theres every reason to believe she will get there.
Au t i s m | e y e I s s u e 7 2 0 1 2 27