AUTISM OR CRANIOSYNOSTOSIS?
If you read my post yesterday ‘You lead I follow’ you will know that we had a specialist appointment with Mr Johnson at John Radcliffe hospital in Oxford.
I was so nervous, I teared up of the thought that Jacob may need a major operation on his skull. On the other hand, I craved to hear the doctor tell me that this was the reason Jacob has all of his difficulties.
I’ve been so mixed with my emotion’s, I feel like I’m not present……..
We woke up at 5.30am and travelled up to Oxford, with so much traffic my very hyperactive son was not impressed. There were meltdowns, throwing of balls, and drinks.
After 3 hours we arrived with my husband in toll. I am so pleased my husband came, Jacob in the last 3 weeks has really upped his game, he is constantly on the go, doesn’t acknowledge any dangers and wants constant stimulation. His behaviour has upped to, head banging, meltdowns and he gets frustrated within seconds.
We met Mr Johnson and around 7-8more professionals in the room. There was a speech therapist, physiologist, plastic surgeon and the list went on.
After 30 minutes of family history and Jacob interacting with the speech therapist who was blowing bubbles at him (that always wins him over), Mr Johnson felt and looked at Jacobs' head. Jacob was diagnosed with metopic but without Trigonocephaly. Which meant that he doesn’t need a major operation I smiled right away. Mr Johnson said he doesn’t believe that the Metopic is causing Jacob to have developmental delays or speech problems and he recommends that we continue to get Jacob assessed for Autism. The professionals in the room were lovely and expressed how good it was that we noticed signs and was getting Jacob assessed at this young age.
I left that hospital with again mixed emotions, yes my beautiful son doesn’t need an operation and I am so thankful. At the same time I cried, I cried that my son is now even more very likely to have autism. Sounds stupid hey?!? Yes, I knew deep down that Jacob is likely to have autism but having an appointment for craniofacial gave me hope, this could be to blame for Jacobs lack of understanding, his behaviour, speech delay, and developmental delay.
Mr Johnson wants to see Jacob in a years time just to check on his head. Apparently the metopic should disappear or become less obvious in years to come.
I wish I could say! We have kindly been told by the speech therapist at John Radcliffe want support she thinks Jacob needs. I will be reporting this back to the professionals that work with Jacob.
We are still waiting for the full results of his genetic tests and waiting for our next big meeting to see what happens next. I will still continue to attend appointments with Jacob weekly. This road feels so hard at times if I said there weren’t days where I wanted to block the whole world out I would be lying.
I have to give myself time to refuel and continue to fight for my little man.
Thank you all for your well wishes for Jacob.