Our Lives on Hold
‘Our Lives on Hold’ by Vivian Kydd from Dundee, Scotland
At 8 years of age, my daughter Calli was diagnosed with ADHD. She was full of energy, constantly on the go, enjoyed singing, acting and music, loved meeting up with friends.
Fast forward to the 11th of December 2013. That’s the day Calli received the second dose of the HPV vaccine Gardasil.
The 12th of December Calli went to bed at 10pm and at 10.45pm screamed ‘mum!’ I rushed upstairs to find her in a state of acute confusion, unable to see and very frightened. At first I thought she was dreaming but no, this was the beginning of our nightmare.
We took her to hospital where the doctors thought that she might have taken something, blood tests proved this was not the case. The doctors asked if anything had changed in the last 24 hours and I told them that Calli had received the second dose of HPV vaccine the day before. Calli was admitted to HDU at Ninewells Hospital. The acute confusion lasted the whole night.
What has concerned me since the 12th of December is that when the school sent out the consent form and their information leaflet, no mention was made of any serious adverse reactions which could occur following HPV vaccination. The serious side effects are listed on the Patients Information Leaflet which is not sent out to parents at the time of requesting consent.
Friday 13th December 2013 at 10am while the doctors were at her bed, Calli had a Tonic Clonic Seizure. This was the most frightening experience I have ever witnessed. I thought my child had died in front of me.
Calli received an MRI scan and blood tests. Everything came back clear. She received a 24-hour ECG which also came back normal.
She left hospital on the 17th of December 2013, still suffering from dizziness, nausea, joint pain, itchy skin.
She had Tonic Clonic seizures in April, June, July, September and October. Admitted to hospital in October for a video telemetry and took another Tonic Clonic seizure and was diagnosed with Left Temporal Lobe Epilepsy with secondary generalized Epilepsy. In all this time Calli had bouts of breathlessness, numbness in limbs, blurry vision and all of the ailments previous, no other tests were done regarding the previous ailments.
Calli has been absent from school since June 2014. She managed one day in school on the 6th of October 2014 and took another Tonic Clonic seizure that evening and has been unable to return.
She no longer goes to her singing lessons or piano lessons as she is just not well enough. On the odd occasion she has met up with friends, but she is very poorly for days after and her ailments worsen. Calli now has Outreach workers to support her, due to anxiety brought on by being housebound for so long.
Over 24 months of joint pain, itchy skin, dizziness, nausea especially after eating, on and off chest pain which shoots through her back, on and off hot flushes and is quite intolerant to heat and has also been diagnosed with psoriasis of the scalp. She also suffers from heartburn and terrible insomnia but can sleep for 20/24 hours.
At our September hospital appointment, the doctor said she does not believe the dizziness, joint pain, itchy skin, psoriasis, hot flushes, nausea and heartburn are connected to the Epilepsy or the medication for Epilepsy. Now after 16 months they are to investigate the joint pain, insomnia and dizziness. Post-Viral Syndrome (Chronic Fatigue Syndrome) was mentioned by the Doctor.
Calli was taken into hospital to change her epilepsy medication in July 2015 and since then the seizures are more controlled. On the 23rd of November 2015, the doctor told us she thinks Calli has Raynaud’s disease and is now being referred to a Rheumatologist. If Calli has a shower, her lower legs and feet turn bright red, with purple and white blotches.
On the 15th December 2015, Calli was due to go into hospital for 24 hours for another telemetry, a tilt table test (which I asked for 18 months ago) and more blood tests. The doctor cancelled this appointment for overnight stay, by mistake.
The 15th of February 2016 Calli received the tilt table test. I was not allowed in the room while the test was being carried out. Calli took a partial seizure during the test and neither the doctor nor the nurse realized what was happening. The doctor repeatedly told Calli to be quiet. I am still awaiting the results.
16th February 2016 Calli had an appointment for the rheumatologist, who said Calli has Raynaud’s Disease with no underlying cause. Reading the blood test results taken from July 2015 nothing has showed up but she requested more blood tests for Vitamin deficiencies. I am awaiting these results too.
22nd February 2016 another hospital appointment was cancelled.
It’s over two years since Calli received the HPV vaccine and it has been very difficult for her. It has also been difficult for me to watch her every day not knowing how she will be or how much she will suffer. We just have to work on a day to day basis and cannot plan anything. Our lives are on hold at the moment.
I just wish I did more research on the side-effects of this vaccine before I consented to vaccinate. I feel very guilty.