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It's been a week of constant thinking...too much thinking is not good for you sometimes...I was told when younger that if you can't think straight then write it all down and it will make you feel better...this is one of the reasons I started this blog...in order to process what was going on in my mind during this journey I felt it might help just to put it in writing and it has...this blog has been a sort of therapy for me, helping me to deal with whatever is going on..I may not be a great writer but at the end of the day this blog lets me be honest with my feelings and process everything that's going on.
But this week I have been struggling a bit...on Monday we had an appointment at the hospital with our neurologist and the metabolic consultant who was meeting us for the first time. I was a bit worried about this appointment as no parent likes to hear about metabolic disorders or even be referred to see one but I convinced myself that it would probably be a waste of time and we would be discharged but instead of a 15min appointment it became an hour and 10mins long.
When we first went in and all the introductions were over and done with, the metabolic consultant then asked me about the regular injections I was having...confused I looked at my husband thinking I had lipread her wrong and hubby asked her to repeat the question. Confused I told her that I am not getting any injections and why would I be? She asked if I had a vitamin b12 deficiency which I explained that I did when I was pregnant with Roo, that I was given some folic acid tablets and it was never mentioned again for the rest of my pregnancy and birth. Her face expression showed me that she was really surprised and not impressed with my GP surgery...apparently I should have had regular blood tests esp after the birth to see about the vitamin b12 deficiency and what kind of treatment I needed and whether it would be a life long issue..she is writing to my GP surgery to request notes during pregnancy and ask why it was never followed up. I have been researching about it and have read some unpleasant stories (thanks google!) about how it can be harmful to the unborn baby and that once child is born they should be checked for the deficiency too as it can cause certain issues... Since reading this I have been worrying if this has somehow affected Roo in some way... I know it's unlikely as the main issues it causes is spina bifida and Roo doesn't have this but there's that tiny niggling voice of doubt at the back of my mind saying "what if it caused other issues?"
Researching more into this I find a list of symptoms and it's as if I'm reading about myself...it mainly causes fatigue and lethargy both of which I have and is getting worse....every morning I wake up as if I haven't slept...I feel exhausted all the time, have no energy or motivation to do anything...I'm supposed to be on a diet but I just can't be bothered, all I want to do is just curl up on the sofa and watch crappy TV! I know that this deficiency can cause depression too and I am seeing some signs that I'm becoming depressed so the time come to sort it out ...once GP gets the letter I will be going for some blood work and if it confirms I still have this then injections will start (my mother has kindly told me that it's extremely painful and that they do it in the bum?! Yikes!)
Once they finally finished talking about me - was very strange to go to an appointment for my son only for them to be concerned about my own health - we then moved onto the matter of metabolic issues...many questions were asked and it was decided that Roo needs another MRI scan under a GA to see if the white matter changes on his brain are still the same or worse... She said that if the results came back that the changes were worse then we would seriously have to consider going down the route of testing for metabolic disorders. She explained that metabolic generally means that the child will gradually get worse instead of improving...this is a big fear I have...I don't want my child to have this, to start deteriorating...but I honestly don't think Roo has anything metabolic as he has come on so much this past year, he is walking, babbling and trying to say many sounds, learned to master the iPad, he is growing, gaining weight and is generally a happy wee boy and we have seen no signs of regression whereas before we always did during the first two years of his life so this give me hope that it's more genetic syndrome than metabolic...but there's that little voice of doubt again at the back of my mind that won't go away until I get the results saying that there are no changes on his brain. She requested some blood work to be done to check for certain things and depending the outcome she may decide on a lumbar puncture but hopefully it won't come to that.
Then the topic moved into the seizures that Roo seems to be having...before it was absences and still is but neuro says he is now having complex partials and he read the diary I've been keeping of all the seizures I've seen and watched the videos I have and he was worried about how much it's worsened lately so is arranging an urgent EEG soon and referred us to the epilepsy nurse. During the appointment the neuro suddenly rushed out of the room and we were a bit confused but the metabolic consultant explained that he was seeing if he could get us to stay in for a meeting with the epilepsy nurse as he was worried but the nurse wasnt in the department so he is going to get her to contact us. He gave me a list of four different epilepsy medication and a website and told me to read up on them before speaking again to him so that I have an idea of possible meds he will prescribe...he also gave me his secretary email and phone no in case seizures get worse before appointment comes. This is a whole new territory for me and quite scary to be frank. We have been warned that there is the possibility the seizures could get worse depending where they are coming from in his brain hence the new EEG as last EEG showed it was focused on one area of the brain and they want to see if it's changed.
So lots of tests coming up which is great as hopefully it will give us clearer answers and rule out anything sinister but I'm dreading them as no parent likes to see their child go under GA , or to go through pain of blood tests, etc...sometimes I think should we keep letting the hospital do test after test till we get answers or should we stop and let him grow up a little first...but my thirst for answers makes me push on, carry on with the tests as the one thing I want more than anything at this moment in time is a diagnosis for my son, I want to know what his future holds and get better support for him.
We came out of the appointment to go to the waiting room to wait for bloods and we just looked at each other feeling a bit overwhelmed with everything that was said in the appointment..over an hour of talking about many different things...thankfully we aren't waiting long for the blood test but it takes 3 of us to hold him down while another nurse takes the blood..a lot of blood..poor boy was literally screaming his head off as if he was being tortured..he sobbed in my arms all the way out of hospital to the car holding his arm out! Lots of cuddles and kisses in the car and the only thing that eventually calmed him down was his iPad and a packet of crisps!