We have seen some changes around here and its taking some time to get used to! As mentioned before Roo was prescribed melatonin - a medication given to children with sleep disorders/issues and after the first week of not much changes suddenly everything became so much easier... he would settle very quickly in his own bed with me sitting in the chair next to him and most nights would stay asleep till 5am which was a massive improvement from waking every hour or so... Once a week or so he would have a bad night despite the medication but it was bearable as I got to get a good sleep on all the other days and it was a lifesaver as I felt more energetic & refreshed than I have since Roo was born.
6wks later after several emails back and forth with his consultant, she decided that he had to come off the melatonin as it wasn't making a difference to his jerking/twitching when asleep..some nights it was worse so we have taken him off them in the meantime until we know further what is causing the jerking/twitching. The results from the last EEG showed no epileptic activity but his background large amplitude waves were a high frequency than normal for his age and they could not explain the significance of this so we are booked to go back into hospital in May for a 24hr minimum video monitoring EEG. I'm hoping that after this we can maybe go back onto the melatonin as I think we need it for my sanity!!!
The nights are no longer mine... Roo stays downstairs playing with his toys till 10pm or later as if we try to put him to bed he will scream for hours, once he get so tired he will come to me and we cuddle on the sofa and within mins he will fall asleep in utter exhaustion and then I have the hard task of carrying him upstairs to his bed! He is so heavy , its taking a toll on my poor back... some nights after crashing he will sleep till 5/6 getting 6/7hrs sleep which isn't too bad, other nights he will scream for hours on which is soul destroying as his mum I feel so useless as nothing I do consoles him, I don't know whats wrong with him as he cannot communicate his needs, I worry that he is in pain and that I should know because I'm his mother, it should be my "instinct" to know whats wrong but the truth is I honestly don't know...I go through the paces of elimination and often it ends with us no further forward.. I will pace the floor cradling him trying to soothe him...sometimes he will be comfy in my arms, other times he will be stiffening his body and fighting me... other nights he can be asleep but very restless, tossing and turning, moaning and crying in his sleep... every night is different and I never know what to expect.
There have been some other changes that we have noticed too ..both good and not so good... the good is that he is vocalising so much more though no words yet but he will make sounds instead of being totally silent like before....he is trying to copy some of the signs again which is so cute to see...so far he is showing signs that he is remembering some of the signs which is an improvement as he tends to forget a week or so later...we are using the same signs every day at the moment to keep reinforcing it into his memory, the past few days he has shown signs that he is beginning to UNDERSTAND the biscuit sign as he will go up to the biscuit tin in the kitchen , stare at it, and we will say "what is it" over and over until he tries to attempt the sign for biscuit! So chuffed and hoping its not a one off... Also he will pick up one of his musical toys and come up to you , putting it onto your lap and we know this means that he wants it switched on! Its such a little thing but its COMMUNICATION!
The other "not so good" changes we have seen over the past couple of weeks is that Roo will suddenly scream/cry over the tiniest things which never used to bother him before... I don't know if its frustration or something else...its so hard trying to guess whats wrong...its moments like this that you just think " if only you could tell me whats wrong" ... His sensory issues seem to be increasing in relation to food.. he is a big food lover but lately he has started to refuse food that he used to like before, wont touch it or gets upset if I put it in his mouth..he also is reluctant to touch his food to feed himself so we have been having to feed him majority of the time otherwise he would end up not eating anything...I'm hoping its just a phase and doesn't develop into another big issue...
One thing that's been on my mind a lot lately is that when Roo was on the sleep meds and was getting a lot more sleep than normal I noticed that he was more alert, happier during the day...he seemed to make improvements which amazed us and became stronger physically and I'm convinced all this is down to the extra sleep ... now that he is back on unsettled nights we have noticed some changes to his behaviour like I said earlier how he get upset very easily over the tinest thing, he whinges a lot more and is generally becoming harder work and has started to fall more again and I'm wondering if its related to his sleep issues? Something I need to raise with his nurse & consultant I think...