I have been reading Disability On a Dime’s blog about getting a diagnosis for your child and it’s at times like this when I am glad I live in the UK with our NHS (please let it continue and not be scrapped!). It’s not great but when my son was small we got all the different doctors doing their tests and referring us to other specialists without having to worry about “how are we going to pay for this?” My son was initially referred to a paediatrician when he was 9 months old when he failed the 9 month check up as he wasn’t crawling properly or trying to pull himself up against furniture. The paediatrician said that was OK, he was getting around albeit like a caterpillar – pulling himself up on all fours and flopping forwards, it worked so why worry? He also had some muscle tone in his legs and arms so he was probably just lazy. As it happens, a week before his first birthday the Boy started crawling properly and walking round the furniture. At 18 months, he failed the next check up as he wasn’t talking or walking independently. On this occasion though we weren’t referred to the paediatrician, our GP gave the Boy until he was 2 to either walk or talk. He started walking at 22 months and so was given a reprieve. However, the next benchmark test at 3 years meant another jump backwards so we were, once again, referred to the paediatrician and all the tests started – blood tests, hearing tests, sight tests, speech therapy… and the list goes on. He is now 17 and we still don’t have a proper diagnosis. I’m not sure I want one now though as I don’t think it would help.
That’s not to say that we have never had a diagnosis. When he was 5, the Boy went for his annual check up with the paediatrician and was diagnosed with Cerebral Palsy. At the time, it was a reasonable diagnosis – his arms and hands would bend and go up towards his face when he tried to run, he’d often walk/run on his toes and he could dribble for England. The dribbling was so bad that he wore scarves round his neck to mop it up and his chin would get red raw, especially in winter. The dribbling was improved following an operation to remove 1/2 of the saliva glands and move the saliva ducts from the front of the mouth to the back. This produced its own problems but that is another story.
Back to the diagnosis of CP, it turned out to be an incorrect although reasonable diagnosis. We moved from Basingstoke to York when the Boy was 6 and, therefore, changed paediatricians. The new paediatrician said that he didn’t think that CP was a correct diagnosis as the Boy’s muscle tone was too good, not great but too good for CP, but that CP was as good a diagnosis as any and probably easier to explain to a lay person than his actual diagnosis of microcephaly (small head). Time for more tests – more bloods and MRI just to check for brain damage (there wasn’t any).
So, back to the point of this post. I’m grateful to be living in the UK and have the support of the NHS. We fortunately didn’t have to worry about the cost of all the blood tests, the MRI, the paediatrician visits (only once a year but the cost would soon add up), the paediatric ophthalmologist (until the Boy was 14 when he was given the go-ahead to go a high street optician), the ENT specialist, the Oral Surgeon, the special needs dentist, the school nurse who has been there for us through the migraines and the bed wetting, the GP… the list goes on. Thank you NHS for your continuing support. Let’s hope that it continues.