Hi all hope your day today has been a good one, ours not so good very challenging with Jake`s hospital appointment today.
It seems that we still get passed around and very little support when it comes to doctors some appointments better than others, part of our journey is not only about the autism and anxiety, but other underlining issues that can be very debilitating to my kids.
Jake has been seeing a heart specialist for a while now and although it is nothing life threatening it still has a major impact on his life, so a few months ago after another visit to the doctor, they thought the pains in his chest and arm were not linked to his palpitations but to his muscles so sent us to physio but still keeping a watch on his fast heartbeats. so Jake started his physio about a month ago. and they are working to get balance in his muscles by experiences which his is doing daily. while at the first physio appointment she mentioned that Jake`s legs were showing signs of vitamin d deficiency, and suggested i spoke to the doctor to have blood tests, which i did only to be told i would need a letter from the physio. So i waited till his next appointment yesterday about the letter and told the physio she was a bit shocked that they wanted a letter from her but said she would send one. i am sure the doctors think i am just asking for the sake of it but that is not the truth i get told one thing by one only to be told another thing by another it is baffling and confusing not only for me as a mother trying to manage my sons symptoms and keep him trusting the doctors he has to visit. now i have to wait weeks for this blood test to be sorted.
Jake has vaso vagal syncope he gets palpitations and eptopic beats which scare him and give him anxiety, please excuse if i spell these wrong. so we had this letter from the heart specialist to take Jake to a&e or call and ambulance if they last longer than 20 mins. so maybe they can catch them on the ECG trace and the last visit to A&E they said it was sinus tachycardia, then he was fitted with a 7 day holter tape , which after a couple of weeks the doctors sent a letter to say that yes it did pick up the faster beats and the eptopic beats but it was perfectly normal. i thought that was the end of it but no they sent me another appointment months later to discuss the results i assumed months of unnecessary, worrying to be told basically you may grow out of it in your 20
s and we are not going to do any more monitoring we will see you again before your 16. three years away. why did they write it did pick up the fast heartbeat and the eptopic beat on the letter then why not say in the letter we wont be seeing you again it would have saved my son from unnecessary stress and anxiety, now we hadnt seen this doctor for a while and normally she gives you a chance to talk and ask questions i tried to speak to her about the results of the physio,
Because the were relevant to some of the pains Jake felt that was part of the reason for his referral to them in the first place, but she just kepted speaking over us like we were a nuisance and wasting her time, i wanted to ask if infact my son is deficient in vitamin d would that be something that would add to his symptoms of his vaso vagal.
To say i was extremely emotional, when we left is an understatement i could see the anger and hurt in Jake¬s eyes again i mean he has only just started being able to speak for himself about what it feels like for him. I wanted to get him away from that bad atmosphere as quick as i could but the car park had other plans i payed my ticket went to the barrier and it wouldn`
t let me out had to continually press the buzzer which noone answered with a lot of cars waiting to get out behind me. in the end i had to phone a number good job my phone had reception as normally it doesn`t at this hospital. only to be told to move my car out of the way so others can get past and wait until someone came, buy this time i am stressed my Jake is stressed, the emotions got the better of me i am trying to stay calm for Jake`
s sake the guys says you have to pay again it didn`t register, go to pay again and realise i left my card in the other ticket machine, see what i mean about how stressful just a simple appointment is especially if they could of written in the letter they weren`t going to see us again. Got my card and left had a real good cry.
You know the doctor said three times today we are not saying your lying well the fact that their tests showed the fast heart beat and eptopic means we weren`t so why imply it three times, the tilt table he had at the beginning which was positive we all saw it we were all in the room.
Now we have know mental health support for his anxiety no support for his physical symptoms. this is our life it has been for all these years now this is why i wrote the book to say what it is really like to be isolated without support for not only our family but many other autistic adults children and their families.
It is a big raising awareness of lack of understanding and support, i am a mum who values my kids needs for the correct support and that they are given a chance to communicate how they are affected by their difficulties my son maybe verbal but it has taken so long to give him the confidence to speak up about how he feels for it to be, dismissed as nothing again it is not nothing to him.