Crawling -development

[donnajane]

Hi, my little champ started to drap himself along the floor on Christmas eve. We found the thing he loves most in the world, our TV remote, and spent quite a while just slowly moving it away from it and to our suprise it worked. The best Christmas present ever as he is 11 1/2 months and at his last Nureologist appointment we were told he wouldn't crawl for quite awhile yet probably around 14months or so. This is now one step closer. When he pulls himself along we have noticed he doesn't use his left leg at all its just stiff bent up. I had a physio appointment the other day and my physio commented on it as well as he was pulling himself around her office while I was having treatment. I said I was just thrilled he was doing it and hoped he would learn to use both legs in time but reality is I wonder. The new mobility has also mean't at the moment when he has an "absence event" he rolls to the side which in a way I find less stressful as its less of a distance than when he was sitting up and going to the side.
Still having nights of him waking between 3 and 4am super hyperactive. Vocalising, shaking his head and often when we try and hold him he doesn't like being "contained" He is happy to lie on our arms so long as he can move around. He is so loud and doesn't go back to sleep until his usual 9am nap. I mentioned this in the weekly report email I send his Nureo and Paed and as I have not received a reply from his Nureo I feel a little more relaxed about it as his Nureo usually only responds to bubs weekly reports if he feels there is something we need to be concerned about now.
He is booked in for an EEG on on 5th and then see's his Nureo an hour later. At his Paed appointment before Christmas when I told her of his Hyperactive state overnight and she observed him trying to pick things up she said to her its seems all to do with his central nervous core? She said things don't add up with bub as at times its like he can't control his arms to grab things then others is fine.
Both the Paed and GP ask everytime they see us if he has had an MRI yet and I will admit now my husband and I are starting to wonder ourselves if its time. We know his Nureologist said if there is something we have time to wait and see what happens but.......
Sorry for the long post. His seziures etc are pretty much the same other than his Shudder Syndrome now has days where we don't even notice it.
Counting the sleeps until his next EEG.
Donnajane

 

[Nakamova]

Thanks for the update -- the crawling is good news! What does his neuro say about the weakness/stiffness of the left leg?

 

[RobinN]

How fun it is to see small increments of development.
I remember Rebecca crawling with one knee also, almost one sided. I can't say that the other knee was stiff, but it certainly was not a right, left, right pattern. I am thinking that she used her right knee, but 20 yrs later it is hard to remember. She was not having any other issues at this time, so my only worry was that I had read that those that do no crawl properly would have difficulty reading later on. (interesting now that I think about that, she did have reading problems).

Rebecca was always very active, walked fine, and her gross and fine motor skills were exceptional. For her it was verbal setbacks. She did not talk until late 3's. She was in speech therapy at a young age, and also received other special resources at her school.

Her seizures did not manifest themselves until the age of 14. They are controlled though by managing her nutrition and hormones. She has been seizure free 12 months as of Jan 10th (med free as well).

Rebecca has had 3 MRI's and I am glad that I did it. Yet she was much older. They found a heterotopia that had me very worried at the onset. A couple neurologists pointed to that as being the cause, and yet another team said it was nothing to concern ourselves with, that it was just like a birthmark. I have now learned about the plasiticity of the brain and how it can learn to reroute itself, and use other parts more efficiently. I am glad that we have the multiple MRI's so that they can be compared to see if the brain is changing over time. Thankfully for Rebecca it has not. There is still so much to learn, this is only one tool for conventional medicine. They are still guessing on much of our treatment.

Give your little guy a hug for me. The years pass much too quickly.

 

[donnajane]

Thanks for the replies. When others share their stories it helps me so much. We are seeing his Nureo on the 5th Jan and have an EEG an hour before the appointment. I did mention him not using his left leg in the "weekly update" his Nureologist asked me to do to keep him on top of my bubs condition but as the Nureologist hasn't responded I feel like its not so urgent as if he's worried he emails us back usually within an hour or so. I dont know what to call what he does its more like pulling himself along the floor not crawling and crawling still seems awhile away. He is still so uncontrolled is his movements a lot of the time.
Don't know why but the word "autism" keeps comming into my head. I know its a wait and see as to what happens with his seizures etc but I will admit I hate not knowing. Hubby and I are writing a list of questions and concerns for the Nureologist when we see him on the 5th Jan. We again will ask re an MRI, what we can do when he has his hyperactive screaming episodes often from 3 or 4 am, talk about the progression of his seizures and we have decided to actually ask his Nureologist if he has a "feeling" as to what is going on with our bub. We know he wants to "wait and see" but both hubby and I have a feeling that the Nureo has a "gut" feeling re whats going on but doesn't want to say anything until he has more diagnostic evidence either way.
Thanks again
Donnajane