Update from latest appointments

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donnajane

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On Dec 20th my little man had an audiology assessment and also an appointment with his Paed. Audiology was good, no fluid in both ears, but they were unable to tell if he could hear properly with the tests as he had times where he started staring etc Audilogist did another type of test with sound going directly into one ear and for that ear she said it showed his ear was working but he may be having problems due to the event's happening they he can not process thing properly at time. She called him a contradiction as at times he was speaking above his level then other times babble and not understanding. She wants to retest him again in 12months to confirm his ears are "working" and able to hear sound so that if he still has issues it is in the way he processess it and they can then work out a way to help him more.
In his paed appointment he had a big turn. This may sound horrible but both the paed and I were so happy he did it in front of her. I was able to ask if it was normal the way he was behaving and she said definetly not and said it was like he was in some strange form of almost "emotional seizure" His eye's couldn't focus he was upset, agitated, not able to speak just babble, couldn't sit or stand. He shouldn't have been tired as he had only woken up. It lasted around 15 or so min then within a minute he was back to normal. Standing up playing with her magnet animals talking, walking, interacting. She said if she hadn't seen it no words would have been able to describe what had happened. I also mentioned to her how we were thrilled he was now able to crawl evenly using both sides of his body, he has been walking for awhile now but when he started to "crawl" just before he turned 1 he use to pull himself along dragging his left arm and leg. The Paed said he shouldn't be spending much time a week crawling let along periods every day so now another thing to watch out for. I felt a bit silly not realising this with him being our 3rd child. But then I remembered how when he was around 10 months old we were so proud of him being so right handed already only to be told it was an issue as his left side didn't work properly which we soon found out when he tried to crawl.
From this appointment his paed has now written to a specialist Paediatric Metabolic Nureologist as she said with his event's, strange temperature control (often he is down to 35C and sometimes 34.5), his strange behaviours and sleep but then how he can be almost normal for some periods she is sure he will be very interested in our little man. She said it does look like he is having epileptic event's but they need to look further. I feel a little disloyal to his current Nureo but my son is more important than worrying about offending anyone. So now we are waiting to see what comes of the letter and if he gets in contact with the Paed to organise an appointment. Until then my little man has quite a few more appointments in the next 2 months, Sleep study, MRI, Gastro/Allergist, Metabolic specialist then Paed and Nureo (Both on the same day) to get results of his MRI to see if the Lesion in his brain has altered. We have no real feeling what his MRI will show as sometimes he does some very strange things which make us think something has altered but then he will go back to his usual self.
Sorry for the long post. It helps me so much just to be able to write it down where I know others are going through similar things and won't mind me "rambling on".
I hope everyone had a great christmas and have either got the answers they need with their child condition or are on the way to working it out. Take Care.
Donna
 
"my son is more important than worrying about offending anyone." YES, YES, YES!

You (better put we) may not have all the answers but your questions and love for your child sure is shedding light on whats going on, and yes, thank God for "paed appointment he had a big turn." becasue they can be impossible to describe or even capture..

You are great inspiration, to never stop looking and questioning......as all parents should...

keep sharing please..
 
I wish I had so answers but I don't. I cann't begin to know what you are going through. I don't have children, it's me with the E.

You sound like a good mother, don't stop asking questions or just ranting when you feel you need to, we are here for you.
 
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