Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

The Ketogenic Diet - The Story So Far. Or how the ketogenic diet saved my life/sanity!

In the time H has been on the diet,
I could have achieved this!

It has been SO long since I updated you on Little H’s progress on the ketogenic diet that I’ve had to sit down and work out just how long he’s been on the diet (you may remember I was doing weekly updates at one time).  Well ... * checks calendar* Little H has been on the ketogenic diet for a grand total of 286 days, or 40 weeks, which is incidentally the same length of time as your average pregnancy (not that either of my pregnancies were that average). 

We’ve had way more ups than downs with the diet I’m happy to say.  He hasn’t had what I’d term his ‘serious seizures’ since March – just two weeks after starting the diet.  We had a period of nearly three months that were completely seizure free and then a new type of seizure crept in and has remained since.  However, although he does still have around three seizures a week now, the severity of them is greatly reduced.  I believe we have the ketogenic diet to thank for that.

Our lives are unrecognisable from how they were a year ago.  At that time, Little H was on his 5th antiepileptic medication which was having little, if any, affect on his seizures.  He still continued to have around 30 seizures a month, the severity of which were so great that they were termed ‘life threatening’ and each one involved us having to resuscitate him, either using a bag and mask or giving mouth to mouth.  Most of his seizures lasted around two and a half minutes, which doesn’t sound that long but try, if you can, to imagine a child not breathing at all for that length of time.  I have never seen a shade of blue like it.  It wasn’t just his fingers or his lips that would turn blue but his whole body, a deep dark shade of navy blue.  It was terrifying.  If it hadn’t stopped by three minutes (I wore a stopwatch at all times) then we gave Midazolam- a rescue medication used to sedate him and hopefully stop the seizure (the standard time to wait is usually 5 minutes).  Usually it worked, but it affected his breathing so much that he turned so pale and lifeless and his skin went as cold and hard to the touch as stone, reminding me of visiting family members in the funeral home.  But at least he was breathing, albeit very shallow, and the seizure had stopped.  After giving mouth to mouth on the pavement at the back of the hospital, when I hadn’t managed to get there in time and at the side of a dual carriageway on a cold, wet day as cars whizzed past, I became too scared to leave the house.  At home I could deal with his seizures in a calm and controlled manner – the oxygen, the SATs monitor, the bag and mask, the midazolam,  the telephone, everything was close at hand and strategically placed (where most people keep photos on their mantel piece, we kept midazolam), but out in the real world? What if I couldn’t get to him in time/ get him out of his car seat/ get the bag and mask out/ what if it happened in Tesco and Cheeky (only two and a half at that time) were to run away while I was resuscitating his little brother??? The risks, it seemed, weren’t worth it.  Three minutes isn’t a great amount of time in a life or death situation and I wasn’t prepared to let my baby die at the side of the road.  So I didn’t leave the house with him. At all.

Fast forward a year later and life is a whole lot happier and the outlook is a lot less bleak.  Little H’s seizures are so subtle, that only someone that knows him well would recognise he was having one.  He grinds his teeth and stiffens his arms, sometimes grimacing or pulling odd facial expressions.  They last longer, a lot longer – sometimes as much as 20 minutes, but in that time his oxygen level isn’t affected, and his heart rate only slightly (I’ve checked on his SATs monitor) so on discussion with his Paediatrician we only give Midazolam if it continues beyond 20 minutes, as the likelihood of it stopping by itself then is greatly reduced and I was reluctant to give it any sooner, since Midazolam has such a drastic effect on him.   So far we haven’t had to give it all.  The most important point to note with these seizures though is that he is breathing!  And that for us makes all the difference.  Yes, he is having seizures and yes they are long and yes I realise there are still risks involved with seizures of any type, but when you’ve come from a place where you were resuscitating your child 30 times a month, this is a huge improvement.  This improvement has made our life bearable.  No, scrap that, it has made our life fun.  We managed a holiday this year, to Wales.  We’ve had days out as a family.  We’ve even left H with my mum for a few hours whilst Mr. M and I went to a concert.  These are things I daren’t dream of last year.  Then I didn’t leave him in the room on his own for any length of time.  On bad days, I would have to carry him to the toilet with me.  We’ve even noticed a difference in his levels of alertness, he responds so much more to the sound of our voices with smiles than he used to, he spends more time awake and is much happier and healthier generally.  He is, as so so many people have commented – doctors, nurses, therapists, staff at the hospice, family, friends – “a different child”

Other changes for H this year have been replacing his nasogastric tube with a mini button.  He had the gastrostomy in June and it was swapped for a button in September.  And he has had his tonsils and adenoids out which has stopped his sleep apnoeas and he sleeps so much better (although not at the moment as he has taken to waking at 3:30am again! Grr).  I am even in the process of moving him into his own bedroom, I’m just waiting on his fancy new hospital bed to arrive – this is another thing I wouldn’t have dreamed of doing last year.

When we started on the ketogenic diet, we were warned that it might not work.  The Holy Grail of course, was that H became seizure free and weaned of his antiepileptic drugs.  We dared not hope for that at the time, we just wanted the severity of his seizures to reduce to such an extent that we could have some semblance of a normal life.  Without a doubt, we have achieved that.  H still has seizures and is still on an unbelievably high dose of Phenobarbital, but we can go out as a family, we can make plans a few weeks in advance, we can create memories.  Happy memories.  I still panic when he pulls that face, that used to signify the start of a seizure, I still carry midazolam, oxygen and a bag and mask everywhere we go and we still aren’t brave enough to take him on a boat or a plane so for the time being anyway, holidays to our family are off the cards; but if you’d told me a year ago I’d drive on a motorway with both boys in the car, that my mum would babysit H, that I’d leave H for a weekend and visit friends, that we could go as much as two months without rushing to the hospital, that I’d be able to make plans weeks in advance – and stick to them, that I’d feel happy and hopeful for the future ... I wouldn’t have believed it. 



And I think we have the ketogenic diet to thank for that.

That’s all for now.  Apologies for the delay in updating.  Initially, I didn’t want to tempt fate, but now, we are so busy having fun that I just haven’t had a chance to do it!  :D




If you want to find out more about the ketogenic diet matthew’s friends website is a good place to start.

If you want to catch up on my post about the ketogenic diet, how it started and how we worked his feeds etc then click here.

If you want to know a bit more about the ‘dark days’, when we weren’t able to leave the house and about H’s horrible seizures then these posts will fill in the gaps.







If you missed the bit about ketogenic diet on channel 4’s food hospital you can catch it here.

Comments

  1. Thanks Blue Sky. It's lovely to feel so positive about his future now. We are in a much better place than we were a year ago. xxx

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