Toby is continuing with great gusto.

He is now trying to mobilise around school with no sticks or walker.  This is proving very tiring for him,  he is also wearing his ankle weights for the whole afternoon, these are 1kg each,  we are really pushing him, and he is doing great.

It is a massive achievement that Toby is accomplishing,  he is only five and he is working himself like an athlete in training

We are really stepping up the hydro therapy that Toby is having, this seems to be really working for him and for the days following a session, he is really supple and strong.

We spoke to another family today, who we were out in St Louis with,  their little boy had surgery 2 days prior to Toby,  and was of a similar disability.  It is amazing for us to hear that he is starting to take his first independent steps.  He seems to be on the same level as Toby, and I would gauge that in reality it is at about this 3 month mark that you really start to see the gross motor skill changes. 

I am still concerned about Toby’s gait in respect of he “hobbles”  to the right.

Our two physiotherapists are not entirely in agreement as to why this is,  possibly his abdominal muscles are tight on his right side, his hips are weaker,  his right leg is shorter than his left. 

One physio wants to press ahead and have a raise put into his shoe, the other wants to wait and see.

I am not entirely comfortable with the “wait and see” approach, this seems to be standard UK protocol and  Toby has done his absolute best to get himself stronger since the operation,  that I feel we owe it to him to help him achieve the best he can.

I am at a bit of a dead end, but will do some thinking as to who will be best to take Toby to and have him assessed.

 I guess I need to build up a bit more trust in the NHS.  I feel we were let down by not being able to provide Toby with this life changing opportunity provided by SDR sooner, it should have been available here, if it had and Toby had it done a couple of years ago, he would have been living and loving life a lot earlier.

I will video Toby and send it off to the States, as they are obviously the best people to speak to,  and get their input as to where we go from here.

I would much rather Toby had the issues sorted now and developed a really good pattern of walking, rather than try and best accommodate this hobble, and learn to walk with it,  and then have to learn to walk again when we have “waited and seen” what might happen.

I have been asked by a couple of mums via email what made me decide not to allow Toby to have bottox again.

In the UK, Botulism Toxin A is a standard drug used to treat cerebral palsy muscle tightness in children.

It is also used within the cosmetic industry, but this is in much smaller doses.

The Bottox (trade name – as I will go onto explain) works by dampening the messages sent from the brain to the leg muscles, therefore inhibiting the wrong messages from getting through.  A theory not dissimilar to SDR, with the exceptions being that SDR removes all incorrect messages and is permanent.

When Toby had his last dose of Botulism Toxin Type A (correct name) ,  back in October last year,  we were still undecided about SDR.  I was always apprehensive about the amount of General Anaesthetics’ that Toby has had to undergo, as he is susceptible to lung problems due to the fact that he does not move at the same rate as other children.

The capacity to exercise and breathe well lessens the risk in active children of infections settling into the lungs.  In Toby and other less mobile children, this is always a worrying factor.  So GA’s are an issue, and as a result, every time he had a GA, he suffered croup, this is an upper respiratory infection, and in most children settles with the help of steam and they outgrow.   In Toby it has always resulted in him being hospitalised with breathing difficulties about 1 week after the GA.

Back in October last year, this was the case again, I was assured by the anaesthetist at the Children’s Hospital Bristol that Toby would have grown out of croup and all would be fine.  So a couple of days after the Bottox, we travelled up north to see my mum.  Within a couple of days, in the early hours of one night,  Toby woke me barely able to breath.  Luckily we were across the road from a military hospital, so we dashed over there and from there were then admitted to a local children’s unit for treatment.  Yet again croup was diagnosed and high dose steroids were given to calm him down – SURE!!!  Steroids do calm down the breathing, but the certainly do not calm down the child!!!  Toby went completely hyper!  It was three in the morning, all the other children in the ward were asleep,  and there was Toby shouting “ I need a big poo!!” and then giggling his head off, he thought he was made of rubber and was bouncing off the ceilings and walls!

I thought that was difficult,  just 10 days later Toby went on to have a massive seizure, this is well documented on his blog seizure page, but how did I make the connection between Bottox and convulsions?

It was early December and I had a letter through from Toby’s orthopaedic surgeon, giving a synopsis of a consultation we had a few days earlier.  When I opened it, one sentence jumped right out at me, and I can still see myself stood reading it and what it felt like………..

“Toby unfortunately went on to suffer severe convulsions 2-3 weeks after having the Botulism Toxin Type A”

I read the letter through to the end,  no other mention was made, but I just knew that there must be a link.

Toby had never had any seizure of any kind, to go straight in and have 2 massive ones invited speculation that something else must surely have been a contributory factor.

So I started investigating.

The Drs and Gp’s were more than happy to write off the seizures as a result of his cerebral palsy as the two very commonly go hand in hand.  I was not.

I only knew he had been given Bottox, nothing else.  This is a brand name manufactured by the American drugs giant Allergan,  as I went on to find out.  They were my first point of contact.

I wrote them an email and asked them for any evidence that they had of first onset convulsive seizure states as a side effect of their drug being used in children.

BINGO!  They responded asking if it was their brand that was used, and also confirmed that first onset convulsive seizures had been reported in 48 cases within the last five years, with 1 death.

I then started asking Toby’s medical team, their knowledge of the link was tenuous to say the least and I kept being fobbed with “if you look at any drug side effect you would never take drugs again” 

I did not think I was being unduly worried, given that we nearly lost Toby twice!!!!

Not being one to be deterred, I contacted Toby’s ortho surgeon and asked for the name of the brand of Botulism that Toby had had administered.  The brand name they use in the UK is made by Ipsen and is called Dysport, it is made on the continent. So off to them I now go and ask them for a list of their side effects that are not listed on the websites. After much to-ing and fro-ing They too confirmed that convulsions are a side effect, albeit very rare.

Side effects are categorised into common, rare, and very rare,  very rare being 1 in 10,000. 

After much discussions, they disclosed that their statistics are taken from all Botulism toxins administered  in the UK, even those for adults having cosmetic enhancements, Adults for cosmetic purposes,  receive tiny doses,  but they use these figures as a whole, combined with the children’s as a determination of the rare and very rare side effects. 

I asked why they could not isolate side effect statistics on those used purely for children suffering from cerebral palsy as they were having much higher doses, and they advised that it is not a government requirement to report to this level.

During this time, Toby was put on high dose epilepsy medications to prevent any more seizures coming through.  This was a really difficult time for us, as the very nature of the drug made Toby’s behaviour unpredictable and difficult to manage, we were also on the brink as we were not sure if another seizure would ever happen.

So what happened next………

Toby’s ortho surgeon agreed that is was dangerous to administer any more Botulism Toxin on Toby – well we were not going to allow this anyway.

Toby’s neurosurgeon advised that the link to Botulism Toxin was not strong enough and advised to go ahead and use Botulism Toxin on Toby again????????? What the……?

I spoke to a couple of Drs in the US to ask their opinions, and they advised that Bottox is not licensed to be used on children in the USA as it “ranks right up there with Viper venom” and it is unethical to inject it into children.  There are some exceptions to this in the USA, but that is the general feel.

I asked Dr Park in St Louis for his opinion, he stated he had never used Bottox due to its toxicity and SDR was the only way forward.

Whilst fund raising for Toby to take him to the states, (we were balloon selling at the time)  a lady approached me who I vaguely recognised.  When I saw her, my mouth went dry, I felt sick, I could feel myself trembling but I could not place her and why was I all overcome?????

I then realised that she was the Consultant on duty that saved Toby the night he had his second seizure back in November last year. She had not left Toby’s side the whole time he was fitting,  she was amazing.  The only bed available in any local hospital  on a Neuro paeds ward was in Gloucester, and she disallowed Toby to be moved to any other hospital and ensured he was admitted to Frenchay neurosurgical ward (even though he had not had neurosurgery!) as he was too poorly to travel.

Anyway - she too recognised him in the posters we had all around us,  and wanted to come over to see how he was doing. 

“it was touch and go that night wasn’t it?” she stated – too bloody true, I can never let go of those feelings.  She asked if Toby had had any more seizures, I explained that no he had not, and I then went on to explain my thinking about the link to Botulism Toxin.

 I expected her to be very non committal, as every other DR had been up until now,  she was the complete opposite and advised that Toby was not the first child she has treated in A&E Resuscitation due to Botulism Toxin Poisoning.

For any of the administering Drs to admit that there was a link could somehow imply liability.  I just have to live with the fact that I allowed my child to be injected with on of the most powerful poisons known to man, and did not fully understand the implications, yes I would still have allowed them to inject, as the risk was so very tiny, but now I am very hesitant to allow any  meds or toxic substances near Toby.

Whilst in the States, when Toby was coming around from the anaesthetic after SDR, he stopped breathing – I have not let you know this before – but he had a rough time!!!  Tis never straightforward with our little boy!!!  He had to be rushed back into theatre and re-intubated until he was strong enough to take start breathing again – the anaesthetists  went on to explain that Toby is extremely sensitive to the narcotic effects of any drugs that they used, his absorption rate and sensitivity to drugs is extremely quick.  Yet another indicator that it could have been the Bottox that caused the seizures.

In the States, they took the link very seriously, and he had to wear a red wrist band the whole time stating he was not to receive any medication related to the Botulism Toxin family.

So, make up your own mind – I can never, hand on heart say it was the Bottox, if I ever do and become complacent, then that puts Toby in a very dangerous place as I might lower my guard – and I will never allow that to happen.

The bottox has now gone from his system,  it only lasts 3 months I would dearly love to know the truth, unfortunately the only way of ever knowing the truth is to give him another dose as a test– like I am ever going to allow that to happen!!!!!!

I have so many questions that I cannot get answered.

• Once a path in the brain for seizures has been opened,  even if the toxin is now gone, does that still leave the patient susceptible?
• How will I even know if it was the bottox?
• When, if ever can Toby come off the medications?
• How much of a difference have the strong medications made to Toby’s character?
• Will he ever have another seizure????  My  big question……….
• Will I ever sleep a complete night without checking on him to make sure all the monitors still work?
• How will I ever let him leave home hopefully, perhaps to go to Uni, trusting him to take his own meds – will I still be ringing him when he is 30 years old and married to make sure he has taken his nightly dose of  Sodium Valporate??!  I think so!

A physiotherapist once said to me – I love giving Toby therapy as you really push my knowledge to the edge – I like to think I am a challenge. 

I also think that “not everybody knows everything, no matter how well qualified” (with the exception of Dr Park – never met a DR like him before!!) and it is our duty to question and investigate and not just take things as a given.

I live my life through both my boys, someone once commented on my mission and dedication and sent me this poem, I thought I would share it with you,  it made me cry!!!!

A meeting was held quite far from Earth,
“It’s time again for another birth,”
Said the angels to the Lord above,
“This child will need so much love.”

“His progress may seem very slow,
Accomplishments he might not show.
And he’ll require extra care,
From folks he meets way down there.

So let’s be careful where he’s sent,
We want his life to be content.
Please, Lord, find the parents who
will do this special job for you.

They will not realize right away,
The leading role they’re asked to play.
But with this child sent from above,
Come stronger faith and richer love.

And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious babe, so meek and mild,
Is Heaven’s very special child.”