"What a brave boy, Willum!"

December 03, 2010

"What a brave boy, Willum!"

That's a quote from Poppy when she came with Sir to visit William in the hospital, walked in and saw him with his head wrapped in bandages and loads of wires coming out of the top attached to a machine for his EEG test. i think it really helped her understand why mummy and the babies hadn't been home since she went to nursery on Monday morning, and having her and Sir there was a really great support to all 3 of us, as we were stuck at the hospital for 5 days, which felt like forever.

i know i'm kind of starting in the middle, but there's parts of what happened this week that i don't want to dwell on. What i do want to say here though is how nice it was to read the lovely supportive comments and emails from you all, especially Ben from P&H, and how much more i appreciate having such a strong supportive little family unit. Even Finn in his own little way has been fantastic this week, and really helped me out when things got tough, and William has shown awareness of Finn for the first time ever, becoming very distressed if he woke up without Finn being in the cot next to him, so that was lovely to see.

It was difficult for me to be apart from Poppy and Sir for so long, except for when they came to visit us, but i made the decision to stay at the hospital because William is so little and vulnerable and he needed his mummy there to comfort him and reassure him and stop him being so scared. Also because both boys are exclusively breastfed at the moment and neither of them have ever drunk from a bottle, so i had to be where they were so they could nurse regularly, and i felt it was important that William and Finn should not be separated. Luckily the hospital we were transferred to was really good and gave William a big enough cot that Finn could sleep in it with him, and they put a bed in the room so that i could sleep over. The nurses were great too about looking after Finn for me if i needed a shower or to get something to eat, and Sir was brilliant about bringing fresh clothes for me and the boys each day and taking away the dirty stuff to be washed.

William underwent lots of tests this week and me and Sir had a long talk with the consultant yesterday, when he explained everything to us the best he could. It is still quite difficult to be certain about the types of seizures William has because he is so little, but the consultant was able to give us quite an accurate assessment due to the number of tests performed; and i'll do my best to summarise the 'results' here: The MRI scan showed numerous tubers (lesions) on William's brain, as before, but this time they were easier to see and the consultant told us he has 50+ (apparently there is little point counting them exactly once they get beyond the 50-mark, they just classify it as 'numerous'), as well as 2 subependymal nodules which need to be monitored as they could grow in future and put pressure on his brain. It is likely that quite a few of these tubers are focal points for William's seizures, and because of this as well as the fact that they are present in every part of his brain except for the brain stem, William is not a candidate for brain surgery to try to relieve his epilepsy. (The good news is that there's no signs of the tubers in other parts of his body such as his kidneys, lungs or eyes, and his heart tumours are already shrinking). 

The other tests (EEG and MEG) showed that William has clinical and subclinical seizures (ie. those which have obvious symptoms and those that show up on the tests without being obvious in his body) of many different types - the consultants were able to identify 'focal' (one part of the body twitching or spasming), 'tonic' (stiff), 'clonic' (shaking or convulsing), 'myoclonic' (repeated jerking movements with pauses between) and 'infantile spasms' (repeatedly bringing his arms out, and head and shoulders down, often upon waking), with many of his seizures comprising more than one of these at a time. Surprisingly it was the seemingly mild infantile spasms that caused the doctors the most concerns as these can lead to severe brain damage and developmental disabilities if allowed to continue - the treatment options have worrying side effects though and we had to choose between a course of ACTH injections (which can cause weight gain, high blood pressure, problems with blood sugar and heart failure) or vigabatrin (which can cause permanent loss of vision), we have opted for the injections but if they don't work we will have to go with the vigabatrin as the known effects from the infantile spasms are much worse for William than the possible side effects from the drug. The doctors also wanted to reduce the number of tonic/clonic seizures that William has been having and that ended up with him in the hospital because of breathing difficulties during a nasty spate of them on Monday morning - they have started him on a new drug to be taken in addition to the phenobarbitol he is already on, so we are to gradually wean him onto 'keppra' over the next few weeks, and will start giving him daily ACTH injections in a fortnight's time. He has to have his blood pressure, blood sugars and heart carefully monitored whilst on these injections, and if there has been no improvement in the infantile spasms within 3 weeks the doctors will recommend that we stop and consider the other option. Someone left a comment on here suggesting the ketogenic diet (which is a high fat, low carbs diet) but William is too young for that yet as he is still breastfeeding.  

So a very stressful, difficult week, but one in which we pulled together as a family and came out the other side. And now it's just good to be home and have William settled again, and hopefully the new treatments will work for him.