HPV, meningitis, vaccines and heartache.

Jay KellyBlog, Parenting

There’s not much worse than a Facebook post about vaccines for raising your blood pressure!

I am writing this blog post because when I wrote a long reply (which bizarrely failed to post and vanished from the reply box) to someone who had left me feeling insulted by her response to my share about a Cochran review about the HPV vaccine, (see here, and here in more detail)  I decided I probably needed a blog offload instead.
Of course, sharing “please question and look deeper at who is reviewing these so-called studies and deeming these things safe” with parents who have chosen to give their daughters it are going to be defensive if they chose to get into a discussion. I am not a fan of the whole vax debate… I have my opinion, you have yours. The whole thing sits so very heavy in my heart.
You are deemed acceptable by your team of people with the same trust in pharmaceuticals, but those (massive growing number) people who do not trust the multi-billion pound industry are shot down the minute they speak up. Made out to be misinformed and risky.
Most people who disagree with me, wouldn’t even take the time to read something like this, or any post that could cause them to change their thoughts or heaven forbid see a different viewpoint.
Take a moment out of your comfort zone and just give me the time of day. See why I am insulted by my opinion being dismissed because it’s different to yours.

Let me tell you our story as to why I feel like I do, and why I want to say to people BEFORE they go ahead with the vaccine to look at reviews such as the Cochran review. Not the studies that are pharma biased. Look with fresh eyes. I’m not saying don’t vaccinate, I’m saying pick carefully.
The HPV one is not going well. Look deeper into it and you will see that clearly.
So, 12 weeks old and both Kitty and Lydia have their vaccine, which included the new meningitis vaccine (now 10 years ago, so I assume it has had many tweaks) they are both very very poorly post vaccine. We are told it is normal. I saw 3 GPs that day, each told me I was being neurotic and it was just a post-vaccine response and it’s ok. I fast forward in my story to the moment where I entered A&E at 2am with my two poorly babies in their car seats, Lydia was floppy and lifeless. No muscle tone, jaw and tongue flopped, eyes rolling, they took one look at Lydia and grabbed the car seat from my arms and they ran with her. I ran after, someone helped me find them, and before there was really any time for giving any details she was hooked up to all sorts.
(Just for clarity, Kitty had the same symptoms, but to a lesser degree.) Lumber punctures confirmed meningitis, and we had the most horrific hospital stay. I remember a priest coming in. I think I shouted at him to leave, as to me he felt like the Grim Reaper.
I was told by professionals to prepare for her death as they could see no way of her pulling through, and if she did, the swelling was so bad she would be severely brain damaged.
It was the hardest time of my life ever. I was all alone watching my baby die. I was told it was just a matter of time.
I cradled Kitty so tight and just watched Lydia, looking tiny and lifeless in a cot far too big for her, for hours, not knowing what to do. She had tubes and wires and it felt like her soul was at the side of her, rather than in her.
That part of the story lasted about 24 very long hours. What changed, (I had no idea at the time, though I think I do now, but that’s for another story) was one minute floppy lifeless baby Lydia looked like she was about have her last heart beat any minute, suddenly “turned back on”, she regained some power in her body and looked across at me standing by her bed, holding her identical twin close to her at all times. It felt like her soul had found something to fight for. I rang the buzzer and told the nurse something had changed.
She turned into a fighter. It was a long and hard battle. Her veins would close down within 20 to 30 minutes of each new IV drip being inserted into it, burning her as the fluid back up and out of the closed vein, then another horridly torturous attempt to put another IV line back in. Her screams tore my heart apart. I did this all alone, as their dad was working or with our other two daughters.
They ran out of veins to use, they had used every hand, foot, arm, and ended up shaving a patch of her hair to go through the scalp instead.
I was lucky in the first hospital I was allowed to keep Kitty with me, as they were discretely keeping an eye on her too, but she was improving all of the time.
In the meantime, the hospital staff were busy in the room next to us with an 8-week old baby who had meningitis, also post its vaccine, given in the same time period as my babies.

Lydia’s nervous system was struggling. She developed a condition called Opsoclonus Myoclonus Syndrome (OMS). Which is usually a sign of a tumour (neuroblastoma) on the nervous system. The diagnosis is rarely good. We were transferred from the hospital on the west coast, hundreds of miles to a large hospital with the right specialists on the East Coast. I was told I couldn’t bring Kitty, but of course, I was not having that. They couldn’t exactly send her home. I was breastfeeding, and I believed that they needed to stay together. I have no idea how long we were there. I couldn’t even guess. It felt like months.
The time spent in the paediatric oncology department was just the worst.
Children going through very harsh treatments, looking tired and pained, but still smiling. I cried a lot. I’m not sure if was crying from seeing the children, or from seeing the heartbreak in their parent’s eyes.
Deep down I knew that despite them wanting to test and thoroughly check for a tumour, that it wasn’t going to be the cause.
Thank God, or whoever, or whatever, that my feeling was confirmed.
OMS is a 1 in 10,000,000 thing, and it’s almost always caused by the tumour on the nervous system.
A specialist in that area came over from somewhere else, he told me in the whole of his experience, he had only ever seen one child in India where it was down to a post-viral reaction, and not a tumour, so we were left relieved, thankful, but still none the wiser, and not knowing if she’d ever fully recover. I was told that the extent of the inflammation would certainly have caused brain damage, that she may never walk, talk, or lead a normal life. There was still the question about her nervous system though. Why had it been affected so badly? And they had nothing to compare her with.
Our hospital room was endlessly invaded by doctors, consultants, nurse, students, people taking videos of her eyes constantly twitching and tracking back and forth (and up and down when she was asleep). Lots of info/research gathering going on.
Anyway, in a similar style to the first part, Lydia bounced back quickly. The “OMS diagnosis is for life” didn’t stick. She rolled over before her twin, she crawled and walked before her twin. Her eyes stopped doing the twitching and tracking. And much to everyone’s surprise, she was dismissed from the Neurologist within a year.
It’s safe to say that she has healed and thrived. There was a happy ending.


But why did it happen? I went to the GP to talk about why I was dismissed 3 times in one day, when I told them I knew something was wrong. My records would show that in the 5 years previous only once had a had a poorly child. Thea had a full body rash investigated when she was one. That would show that I wasn’t a neurotic mother, I’m sure.
I told them I wanted to report a vaccine “side effect”. It was refused.
I was in no state to take my complaint any further. I had children who needed me to function. I had a 5-year-old, a 3-year-old, and little twin babies. I was in a state of shock, my marriage was in trouble as I had felt to so unsupported and let down, and couldn’t get passed it. I was suffering with PTSD and needed all of my focus and energy on looking after my children. I didn’t take it further… It did make me question “side effects” of so-called tested and safe vaccines. Is it ok that the vaccine that resulted in all of this is not even looked into? I know I’m not alone in reporting post-vaccine reactions that have been completely ignored and never even allowed to log it.

So what lead me to write this was the response to my post about the recent Cochran review on the HPV vaccine, which says “don’t look to the internet to find your studies… ask professionals in the field.” My response is: Don’t insult me with the assumption that my experience and research is limited to an internet search. Don’t insult me with the “I researched and found the vaccines were safe”. I then question why you think your research is far superior? Did you even read the post that I put up and go further into actual INDEPENDENT studies, not those who are actually funded by the multi-billion dollar pharmaceutical industry? Please do not discredit my viewpoint as being one of narrow, shallow internet searches.
Don’t insult me. I am a mixture of a lifetime of pain whenever I remember these events, and anger at the fact that there was a cover-up of misconduct and a cover-up of post-vaccine effects. Not even minor side effects, but this was so close to taking my daughter’s life.