Head size increase 1.1cm in 7weeks?

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donnajane

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We had another appointment with my little mans Paed yesterday to check development etc. She said she is a little concerned with the sudden increase in his head size it had been tracking just below 75% and is not well into the 90%. She said she felt he was also very frontal especially on his right side. At birth he was just above the 25% for his head measurement then had a sudden jump around 8 months up to just below the 75% he also had a sudden increase in his smaller events mainly "Shudder Syndrome" to up to 150 a day. Thankfully this amount never happens at the moment but I find it interesting that he has had another larger increase in his head size and a change in his events to having trouble walking most days after waking etc. His body length and weight at birth started just below the 50% and moved gradually down to the 25% were they have stayed for 14months now which is one another reason his paed is a little concerned. (he's 19months old)
She rang up the metabolic specialist and they have booked his LP in for the same time as his MRI but it is still 4 weeks away. Maybe nothing will show in either of these test but I will admit I am starting to get a bit more concerned as his Paed rarely shows any worry but she did on Thursday.
His introduction to Tegretol has been "interesting" not sure if what is happening is the medication on just the natural progression of what is happening.
I know answers take time but...................................
 
I'm sorry you have to go through all of this. When you say that she felt he was frontal, esp on the right side, do you mean that she thinks the seizures are coming from that area? Stupid question I know. I'm new to this game :) Hoping for the best for him and you.
 
Thanks for the reply. No one, Nureo or Paed, has much of an idea as to what is causing my sons events. He has several types of Events during the day and night and his Nureo is not sure if they all are actually seizures. he has had 5 EEG's 4 normal but on the 5th it showed a slight slowing on the back right of his brain and his eyes rolled when they did the test with flashing lights yet his brain waves barely altered. Hi Nureo said if he was an adult he would be really worried with the slowness on the back right of his brain and it might also explain the issues he has on his left side. He use to not use his left arm much and was "right" handed from around 9months old. We have been working on his left side and it is now almost not noticeable. He use to drag his left arm and leg when he was learning to "crawl" he walks quite well now but often his left leg is stiff and every now and then he has periods where he lifts it a lot higher to walk.He has periods where he now gets very confused i.e. can't remember how to get out from standing under a table or how to get down a tiny step.Then other times he seems so normal playing with his almost 5yr old brother and 2 1/2 yr old sister. He is now on Tegretol which is Nureo is gradually increasing.
My concern with what the Paed said is that we have been told it could also be scarring or a lesian on his brain. The word tumour keeps comming into my head, hopefully I am very wrong on this! He has his MRI and a Lumbar puncture on 13th July so 3 1/2 weeks left.
Sorry for such a long answer but it unforunately nothing is "easy" for the specialists when it comes to trying to work out what might be causing our little man's issues.
 
Hi donnajane --

The increase in head size could be just be a benign event and unrelated to his other symptoms. I do hope the testing in a few weeks can put your mind at ease and answer other questions about what is going on with him. Hang in there!
 
I worried myself sick, literally, that my son had a brain tumor also. Luckily, that is not the case most of the time. Has he had an MRI before, like when he was originally diagnosed. Nakamova is right....they could be totally unrelated, but it's torture waiting for the tests. ((((Hugs)))))
 
When my son was a baby slow waves was all they could find. He had some jerks and I knew what it was because I have epilepsy. You need an ped. epileptologist. My son had a very big head. He is 14 now and it took a long time for him to grow into it. Tegretol is a weird drug. My mom didn't know anything about epilepsy and its meds 37 years ago, I was ten when I was diagnosed. And that is what they put me on. I was just a but head all the time. Your sweety is probably tired. And my lobe swells up when I get a head ache or have a seizure from that area. Write it down every time you notice it. And if in the day time it gets better. My son also took time to walk. And I freaked out over everything to. Now he is graduating into highschool (I still freak out) with honor grades.
PM ,me . Teresa
 
Thanks for the replies. I am hoping they are unreleated and I am just creating a storm in a tea cup. Hospital rang and said they have managed to get his appointment in earlier at request of Nureo and Metabolic specialist. Its only 3 days ealier but thats 3 less days of me wondering.They are going to let us know if a spot comes up earlier or if he suddenly does something more worrying to bring him to the ED and they will organise it within 24hrs.
 
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