So today the tiger mum in me came out hard core. This young man of mine deserves the best and sadly today a medical professional didnt give him that. We saw an orthopaedic surgeon today (I wont be mentioning his name again) and I have never in all 9 years Ive been dealing with medical professionals been so upset. Literally crying and even had a few swear words slip out. Seans feet have been getting worse over the last 4 odd years. Hes had 3 pairs of orthotics the last being the Ankle Foot Orthotics. Sadly because his feet are collapsing more they have been blistering and causing callouses so he hasnt been able to wear them for the last few months. Two physios including one from the CP alliance (who was there today with me) have said he will need surgery to put screws in his ankles. I thought finally we are getting somewhere! Not so. Todays surgeon didnt acknowledge Sean at all. Hell he couldnt even pronounce his name correctly. He questioned Seans Dravet diagnosis because he isnt gene positive for it (only 70% have a mutation and yes I told him that) He told me surgery wasnt an option. He told me modifying his AFOs will strengthen his muscles and improve his tone. He told me physiotherapy and intense exercise will improve his tone. Our physio disagreed completely. He then tried the Ive been a doctor for 25 years card. And I lost it. I told him I didnt care (ok I didnt say care, I swore instead lol) how long he had been a doctor, that he had known my son for an hour and id known him and cared for him for 10 years. I am his mumma. I know him better than anyone else on this earth. He then told me Sean waking up at night, crying in pain from knee pain was seizure activity or at least seizure related. I disagreed whole heartedly with that. I know my childs seizures. And like I told him, if that was the case his neurologist Dr Smith would of said that two weeks ago instead of offering pain relief solutions. He didnt believe me, instead deciding that because he knew Dr Smith for 15 years that he was right and then rang him just to prove it. Happily he was proven wrong when Dr Smith joined us, saw that I was visibly upset (I went through half a box of tissues) and agreed that his pain isnt from seizures at all and agreed with me that because his ankles are collapsing it is having a knock on effect for his knees and hips. (Just like all Seans physios and OTs have said in the past) This surgeon even lied when I pulled him up on the Ive been a Dr for 25years and denied he even said it despite there being a physio and two student doctors in the room. Ive dealt with doctors with shitty bedside manners before but this was a whole new level. I was so hoping I could bring good news to you all and instead I have to tell you all this. I didnt even know if I should post this. But I will because good or bad this is Seanys life. The only positives that came out of today was x rays of his hips and ankles which were good. And the absolute gratitude and love I have for his neuro team. They backed me up all the way today. A day when I really needed it. Sean will be starting a new prescription med often prescribed for those with Parkinsons disease tomorrow to try and help combat the leg pain he has at night. So tonight I am absolutely drained, I have a massive headache and my eyes are sore from crying. But I will do anything for my boy. He is my boy. He deserves the best team around him. And this tiger mummy will yell, swear and cry her way through until he gets it.
Posted on: Thu, 20 Nov 2014 10:03:18 +0000
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