Update from Paed Apt tuesday.

donnajane

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Sorry long post!
We had an interesting appointment with my sons Paed on Tues.
* His head has grown again in comparison to his body, Head now over the 90%. Height remains constant at 50% and weight remains constant at just above 50%. His head size is something his specialists are keeping an eye on.
* She was disappointed we were sent a letter saying it could be a 6month wait to see the Metabolic Neurologist at the children's hospital, whom she has already given videos and medical reports of my son so she rang him up and we now have an appointment on the 29th of May.
* She has organised for the nurse at my work to go over to child care (also at my work) and do blood sugar levels when he goes into one of his very pale, sweaty NQR states. As these sometimes only last around 20minutes by the time I collected him and took him to the hospital or Dr for blood tests he may have passed through this stage. They have done a sugar test once before but he was in one of his “normal” periods.
* She said we need to keep an eye on strange spots he gets on the back of his left thigh. They are like tiny blood drops under the skin (not much bigger than a pin head). They are not a rash, not raised and do not go away when pressed. She said it usually is caused by something going on with your platelets in your blood. Lucky I had photographed it. She said if it happens again to photograph it and also take him to Dr so that can write it up from a medical view and might also decided to do blood tests at the time.
* She referred him to a Speech Therapist to see if they can help him when he goes through his periods of not being able to speak. He can speak fine for a 2yr old sometimes but then when he goes into one of his state’s which can last hours sometimes he can’t communicate.
* She said we need to keep an eye on the fact that he doesn’t ever let us know if he has done a wee or a No 2 in his nappy, but I am not worried about that as to us he seems a bit younger than our older kids were at this age so not going to worry about this unless he’s still not “telling” us when he’s 3.
* She is even more sure than ever after looking at lattest footage, photos and the jounral we keep and the journal child care keep that his event's and behaviours are probably caused by a metabolic condition. But as she explained it is such a new field and so far nothing has showed up in his metabolic tests yet she feels it is still there and they just need to find the right test and time to "find" which chemical is causing this.
* She said going on today’s appointment his development seems to have almost caught up again. She said he did something similar when he was around 14 months old when he went from quite developmentally delayed to just below normal and his development then appeared to slow right down again and then on Tuesday catch up. She said she did realise he was in a “good” period at the appointment and other times he hasn’t been.
She rang me that night after the appointment and was a little shocked when I told her he had gone back to becoming very NQR later in the afternoon.
So now we are up to waiting for the next specialist appointment. Continuing his “events” journal and taking what videos and photo’s we can. Sometimes I think his issues have passed but then lately he seems to have lots more of the NQR times which makes when he is in a "normal" patch even more special. I loved tonight watching him and his 5 yr old brother wrestle around the floor having a great time something I haven't seen him do in such a long time. It brought a huge smile to my face.
Donna
 

JaneC

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Your poor son has such a lot going on Donna. At least the doctor sounds very good. Hope the appt at the end of the month goes well x
 

donnajane

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Thanks JaneC so do I . His meds are controlling his events so much better at the moment but we are seeing more of his NQR behaviour. All I want for our little man is to be happy and to have the opportunity to reach his potential, no matter what that potential may be.
Thanks again.
Donna
 

Nakamova

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It's great that the pediatrician is advocating for your son's care in such a thorough and committed way. It's tough that you don't have an answer yet as to what exactly is going on, but your doctor is honest enough to admit it, and is willing to keep testing every way she can, while pushing the metabolic neurologist to get a move on. Keep us posted on your guys' progress, and we'll all be hoping for good things to happen on the 29th.
 
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