Category: Professionals

The Dreaded Dentist

We have been taking Freddie to the Dentist for quite a few years now and for the past two we have been seeing a really great lady to understands Freddie and has loads of patience for him Bella and Jago love going because they get a sticker. Ah, the holy sticker. I wonder how many years this will bribe them in to going. It’s like the bribe, sorry the joy, of getting a lollipop at the hairdressers.

Freddie has always hated it. Seemed worried and anxious. I think with his sensory processing issues, he just hates the purple latex gloves and you have to be pretty quick getting a look in there before his teeth clamp shut and you risk loosing your finger. About a year ago, his SALT from Skybound suggested we take the Talktools sticks with us to insert into his mouth to hold his jaw open. That certainly helped to get access to look at his teeth but it didn’t seem to help him be any less stressed about the situation.

Anyway, with perseverance, kindness from the Dentist and lots of prepping him, this time was a total success. I definitely think it was partly to do with the fact they had a fancy new piece of technical equipment. It is a camera which looks into the mouth and shows the images on the screen in-front of you. Tech obsessed Fred was very happy. Plus, we let him take his ball with him this time.

This was such a positive result and milestone. One I never really expected us to get to. Freddie surprises us every day. xx

 

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The Heart or the Head

Freddie got hooked up again today for another ECG before we got the results of him wearing a heart monitor for three weeks. That was eventful. For a boy who loves to press buttons, we weren’t sure how many of the readings would be real and how many would be Freddie just pressing the button. (He is only smiling because Ollie gave him his phone. He hates the sticky pads so anything to distract him.)

 

 

For two years now he has been experiencing, what look like, absence seizures. His Neurologist isn’t convinced because although they look like it and sound like it, they don’t happen often enough. The thing is though, nothing with Freddie has ever been straightforward black and white. I’m grateful it’s so sporadic and not affecting him all day every day but we really do need to find out what is going on. The parts of Freddie’s brain which haven’t developed typically, mean that we have always been advised to look out for epileptic activity. It’s so hard to know what we are seeing.

Anyway, the Neuro wants to rule out anything untoward going on with his heart before we have any more discussions.

Obviously, we don’t want him to be having absence seizures but if that’s not what it is. Then what’s going on?

So, after a fairly frustrating appointment (that’s a story for another day) cardiology are as certain as they can be that it’s nothing heart related. That’s a relief but now we continue without an answer. Back to the Neurologist we go. xx

 

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My Star of the NHS. I Salute You.

Dear Nicky

As we approach the 70th anniversary of the NHS, I want to thank you so much from the bottom of my heart.

Being told at my 20 week scan that my baby would be disabled but no one knew how severely, was totally shocking. Being sent home after the birth with no support and a ‘wait and see’ attitude from everyone around was frightening.

It wasn’t until we moved, when Freddie was around nine months old, that we met you Nicky. We had seen around four different Health Visitors between birth and nine months and none had really shown any support or understanding or in fact even read his notes. I hated those baby weigh in clinics. Then we moved and found someone who went the extra mile at every meeting and every phone call.

You made such a huge impact on our lives.

You read his file, you researched, you listened, you had experience of children who weren’t developing as expected. When you have no diagnosis for your child’s disability, it’s hard path. I remember Ollie and I going to the clinic to discus his nine month review. We started the questions and couldn’t answer yes to a single one. We felt so defeated and all the positivity (denial) we had forged on with was crushed. About half way though, it was clear we wouldn’t be able to answer yes to any of the questions. Nicky, you said we would leave it and not bother with it any more. Freddie was on his own trajectory so let’s focus on what he needs. Up until this point, no one had mentioned Physio, OT, play therapy, Portage or SALT. Bare in mind we had a paediatrician, four health visitors and the GP plus we had spent time in SCBU. We were pretty clueless.

 

You were the first person to really get it. You set up the referrals to the various therapies to support Freddie. If we hadn’t moved house and met you, I truly believe Freddie would have been a lot further behind in his development than he is now.

Thank you for caring, going the extra mile and making such a positive difference to his life.

Aimee and Family. xx

 

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