Yesterday I wrote a post about Undiagnosed Children’s Awareness Day which is about raising awareness for SWAN (Syndrome Without A Name). Today I have read a number of blogs from parents of SWANs who are anxious and worried about what the future has in store for them as without a diagnosis you can’t have any idea of the prognosis for your child. As my son is now 18 and is, therefore, my not so little SWAN from the title of this blog I thought I’d share our story. However, I must point out that I never really fought for a diagnosis, I was just happy that he was/is OK.
I guess it all started when my son was born, I was in labour for 50 minutes for my one and only child! It would have been longer but the midwives wanted to monitor his heart rate through a monitor attached to his head so broke my waters to attach it. As soon as my waters broke, that was it my son was out within about 5 minutes! Looking back, I guess that could have contributed to his disability but I don’t know.
At his 9 month check up with the paediatrician they were a little worried about his muscle tone but it was there and he could sit by himself and could get himself from one side of a room to the other by rolling over and then moving like a caterpillar (he would pull himself up on all fours and then flop forwards, then repeat). He was also making some babbling sounds so we thought he’d be OK even if a little behind.
My son finally started to crawl the week before his 1st birthday and then pulled himself up to stand and walk round holding on to furniture the same week. However, this was just a holding pattern as he wasn’t walking when he went for his 18 month check up with the paediatrician. This in itself wasn’t a problem, the problem was that he also wasn’t talking nor was he making the babbling sounds which he had been making at 9 months. I’m not sure that they stopped but they became less frequent. We were told that they would do an additional review when my son was 2 and if he was either walking or talking they would be happy. He walked when he was 22 months old and his babbling came back before the 2 year review. I never questioned my son’s delay as the GP and the paediatrician didn’t seem to be overly worried. I had returned to work when my son was 3 months old as we couldn’t afford for me not to work and he had been with a childminder for 3 mornings a week since the age of 18 months. Whilst we knew that there was a delay in his development, none of us, including his childminder, realised quite how much of a delay it was or was going to be.
It wasn’t until his 3 year check up with the paediatrician that the medical professionals started to get concerned. He was sent for blood tests – normal; more blood tests to check for genetic abnormalities – normal; more blood tests for chromosome abnormalities – normal. He was referred to the ENT consultant as he didn’t appear to be hearing well. The result? Grommets at age 3. He was also referred to the ophthalmologist as he appeared to have a lazy eye. The result? Glasses at age 3.
The main result of the 3 year check up was that my son was referred to the Portage Service. We had a wonderful lady come to work with my son every week and help with his development. The best thing which came out of Portage for me though was the referral to Speech and Language Therapy and learning Makaton. Makaton has been a life-changer for my son and me, we could finally communicate! I even approached the Makaton Charity and went on the courses to learn more. I went on the courses in 2000 and am still using a lot of what I learnt today.
After the 3 year check up we were put on 6 monthly reviews by the paediatrician. When my son was in reception year at school (mainstream as they didn’t have a place at the local special needs school) my son was diagnosed with Cerebral Palsy as, although he walked OK most of the time, when he tried to run he would lift his hands to his shoulders and run on his toes. He also dribbled, a lot, so much so that he had to have cortisone cream in the winter to calm down the skin irritation and wear scarves round his neck to prevent his clothes getting too wet. To be honest, I wasn’t particularly bothered about the diagnosis of CP. I mean, it was nice to have a name/label but it wasn’t going to change my life or how we lived day-to-day. The most important thing to come out of that review was the referral to an oral surgeon who agreed to operate on my son to remove 1 of each pair of saliva glands and move the saliva duct from the front of the mouth to the back. At that time, my son was the youngest and smallest child he had ever performed the operation on. It was a great success with regards to reducing the dribbling but it did present us with another problem which would come back to bite us in the bum a couple of years later.
Following the diagnosis of CP, my son got a place at the local special needs school for year 1 and he thrived and improved, albeit slower than other children his age.
In between year 1 and year 2 we moved to York and, therefore, changed paediatricians. Our new paediatrician did a full exam of my son and came to the conclusion that, actually, my son doesn’t have Cerebral Palsy. At the time I thought, OK so what does he have then? The answer, we don’t know. So here we go again, let’s do all the blood tests again. Let’s get blood tests from the parents again too. Oh, and for good measure, let’s get and MRI as well. All came back… normal. So here we are with my son at the age of, nearly, 7 back to square one with no diagnosis except, microcephaly – he has a small head! He was also small for his age and often classed as underweight. However, this was not cause for concern as he was eating a good, varied diet. He is now at the lower end of the normal BMI range, I think, and 5′ 7″ tall. He is unlikely to grow much taller but he’s taller than his mum, just (1″) so that’s OK.
Our final hurdle came when he was about 8 – he started getting regular headaches which would knock him out all day and he would even be sick with them. They would finally be diagnosed as migraines but, again, even knowing that didn’t really help. Remember I said that the operation on my son’s mouth would come back to bite us? Well, when he was in hospital they wouldn’t let us take him home unless he ate something first but he was in so much pain that he wouldn’t let anyone put anything near his mouth. So, in order to help with the pain he was force-fed Calpol and put on a drip. The result? He wouldn’t take any pain relief for his headaches or anything else for years. When he was 13, the migraines came thick and fast – one every week! – and he was put on medication for them when he was 14. Having the medication was a blessing in disguise because as part of the deal he made with the paediatrician for getting the medication was that he would try to take ibuprofen or paracetamol tablets if he got a migraine. Result – he now takes ibuprofen or paracetamol when he starts to get a headache and it rarely develops into a migraine. Yay! 😀 He does still get migraines on a 4 to 6 weekly cycle but he has only missed 1 day of school in the past 2 years which is so much better than missing 1 day a week.
Over the years, I have come to accept that everything is later than it should be. He loves anything Disney and will spend hours on the computer looking up You-Tube videos of parades and attractions at all the Disney Parks. He also looks up the timetables of events. He loves role play and often pretends to work in shops or at a Disney Park – I wish I could get him a job in one.
My son is now in Post-16 at Applefields, the local special needs school, and is thriving even without a diagnosis. We celebrate every little milestone because they are huge for us. Development wise, my son is mentally in year 1 or 2 but he understands so much more than he can express. He can make his own cups of tea and even makes dinner, with support. In fact, as I am writing this (it has taken me about 45 minutes because I have to go and check on every little stage of the preparation) my son has been preparing potatoes, carrots and broccoli for our lunch/dinner and is now cooking pork steaks under the grill.
Yes, living without a diagnosis can be hard but he is who he is and I wouldn’t change him for the world. It can be hard not knowing what is coming and having the same behaviours and problems for years instead of weeks or months. My son repeats things, a lot, and it does get very frustrating but we’re getting there and, more importantly, he’s getting there.
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