I've raised £15000 to help with Ewan's medical bills for treatment of P.A.N.D.A.S, Lyme disease, Mitochondrial dysfunction and associated co infections

Organised by Craig & Kirsty Montgomery
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Musselburgh, UK ·Health and medical

Story

My wife Kirsty and I are raising funds to pay for testing and treatment for our amazing, brave son Ewan. Ewan has P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and also now has additional infections due to his damaged immune system. His first symptoms started when he was only 3 but became more serious when he was 9.

Before Ewan became so ill he was a normal, happy boy. He played football for Musselburgh Youngstars, had a Hibernian season ticket, was a budding DJ, artist and went out with friends on a daily basis. Now at 13 he has stopped all these things and only connects to the outside world via online gaming. Only leaving home around once a month with his big cousin or his best pal but has to be closely monitored in case there is a sudden onset flare of his condition.

www.mykidisnotcrazy.com is a chilling but honest account of what living with PANDAS is like for a child. Some of the symptoms are Tics(tourrettes), OCD, panic attacks, agoraphobia, ADHD, seperation anxiety, sleep disturbance, Anxiety, depression. joint pain, memory loss, loss of fine motor skills. regression in school, sudden mood changes, sensory issues, oppositional defiant disorder, food refusal.

As you can understand at 13 Ewan is very private regarding his condition as he is no longer able to attend school and finds it very difficult to retain relationships with his pals. We are now home schooling on days when Ewan is well enough.

We are thankful to the NHS for the treatment Ewan has received up to now and in particular to Dr McWilliam at the Edinburgh sick kids for the immunoglobulin (IVIG) that he has received. This treatment is no longer available to us as it would be unsafe to have any more due to the antibodies in the blood product.

We have just had an appointment with Dr Peter Strigner a private medical and complementary medicine doctor. He is an expert in Ewan's PANDAS and the additional infections associated with it. He has recommended a full range of tests to identify the exact type of bacteria in Ewan's brain and gut, food allergies that can increase symptoms, heavy metals in the body, DNA and genetic testing, environmental factors and tests for lyme, bartonella and other infections. These tests and treatment will take around a year and this funding will cover the costs of the initial tests and the consultations/prescriptions and any further treatment.

As a family we manage this as best we can but Ewan's little brother Fraser also has autism so we are extremely restricted in the hours we can work due to caring for both boys and home schooling Ewan.

Any support would be hugely appreciated and would make a massive difference to Ewan's life.

xxxxxUpdatexxxxx

Due to the amazing donations we have had Ewans tests done. Unfortunately he also now has a diagnosis of chronic Lyme Disease, mitochondrial dysfunction, chronic fatigue and many food allergies. This will require 2 years of detox, immune repair and treatment. We have amended our target and will continue with events on an ongoing basis. He continues to struggle on a daily basis and is housebound as he is too weak to walk anywhere at the moment.

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About fundraiser

Craig & Kirsty Montgomery
Organiser

Donation summary

Total
£6,056.16