More William stuff

January 08, 2011

More William stuff

So yesterday was the big day - the day of William's EEG to find out if the ACTH injections have had any effect on his infantile spasms, whether we need to increase the dose, continue for another few weeks, or wean him off of it. For some reason each EEG seems to get more difficult and more stressful than the last, but i'm glad that i didn't follow the doctor's advice and keep William up most of the night so he would be tired enough to fall asleep during the test (super cranky baby and super stressed and tired mummy do not make a good combination), because i turned out to be right in that i was able to soothe him off to sleep swaddled in a blanket in my arms. William still hated the process of having those electrodes glued to his head and screamed his head off throughout (which probably also tired him out enough to sleep afterwards), but the staff were very patient and understanding and we didn't feel at all rushed or pressurised into dealing with William in a certain way, which is good. Finn, bless him, was very concerned about what was happening to his brother, but Sir was there to comfort him whilst i was holding William.

And the results? Good news - there was no sign of the classic infantile spasms pattern on the EEG, so the consultant said we can start weaning William off the injections over the next 2 weeks, then keep him away from confined public spaces for another week after that due to his weakened immune system, but then he can go back to his usual activities such as baby therapy and story sessions at the library. And hopefully the infantile spasms will never return. Sorry not to sound more excited about the results, but the consultant also told us that with the infantile spasms pattern no longer clogging up the EEG, the extent of William's other types of seizures are becoming more apparent, and he has what can only be described as 'complex' epilepsy which will likely be difficult to treat. Combine that with the fact that he has those 50+ areas of damaged brain that we already know about, plus the 2 areas which have the possibility of growing and pressing on his brain and requiring surgery in the future, and i'm not exactly jumping for joy. Yes we have achieved a victory over one of William's problems, but there's a long way to go yet.

In other William news his physiotherapist was ill this week, so the visual impairment specialist and the occupational therapist visited instead to carry out assessments on William (can i just say at this point how fantastic everyone at the early intervention clinic is?). Basically they strongly suspect that he has a cortical visual impairment (where the brain can't process the information from the eyes, so he can't 'see' it) plus sensory integration/processing disorder affecting his senses of hearing, touch, vestibular and proprioceptive senses (these last two relate to processing body movements and positions, balance, etc), and possibly others which they can't tell yet. So they are referring him to specialist doctors to get the diagnoses confirmed, and once we have that they can lend us some equipment and set up therapy programmes for him to do at home.

In terms of developmental skills William is really at the very beginning in most areas - he doesn't support his own head/neck any better than a newborn really, doesn't move his arms or legs with any purpose, doesn't reach for things or bat at them, doesn't voluntarily grasp objects (he keeps his hands clenched shut the whole time), doesn't release objects once they have been put into his hand, doesn't explore his hands and feet, doesn't kick with his legs, doesn't mouth his fingers or objects, doesn't look at or focus on objects or people's faces, doesn't turn his head to look at things, doesn't track bright objects with his eyes, doesn't look at his reflection in a mirror, doesn't babble or vocalise (except for a very occasional happy coo), doesn't sit with support, doesn't push through his legs when held in a standing position, doesn't push up from the floor when on his tummy, doesn't roll over, doesn't have different cries for different needs (he reacts to everything with the same cross scream), doesn't turn towards sounds, doesn't respond to his name. He still needs help breastfeeding, is difficult to settle to sleep, has to have things done in a certain way else he gets very cross, hates things touching his head or face, hates certain textures including some of his clothes so we have to give them to Finn instead, has long screaming spells for no apparent reason, hates certain sounds (sirens, telephones, the microwave), needs to be held and rocked and cuddled and massaged and touched lots and lots, doesn't react well to people other than me, Sir, Poppy and Finn, and is generally quite a tricky little bean.

But i love him very much, he is my little William, and i will do whatever is needed to help him and support him and enable him to develop to whatever his potential may be. (Oh and btw, the loft has been measured and the plans have been drawn up to convert it, now we're just waiting for council approval and then the work can begin on William's sensory/therapy rooms).