Hi everyone. I am on this site on behalf of my 4 month old son. Ever since he was 1 week old he has been having these "spells". I didn't think much of it being a new mom and all. But after about 8 weeks of it I really started thinking "this isn't normal at all". So we went to his pediatricition and she had us go to Darmouth to get an EEG as she thought it was seizures (does kind of resemble that if you watch the clips). Anyways, we had the EEG done and then met with Dr. Morse (the pediatric neurologist). He said it wasn't seizures and when i mocked my boys spells to him, right away he said Chiari Malformation Type 1. So off to the quick MRI we go. For sake of time, i will spare you all of the details but i will say he has had 5 MRIs, 2 EEGs, a heart ultrasound, reguilar monitoring, stayed impatient for 4 days, had cameras hooked up to him, and a 24 hour a day for 4 day EEG hooked up to him. Needless to say, the doc still doesn't have any real scientific evidence that it is Chiari, so he can't technically diagnose him with it, but he said EVERY time he has witness the "conductors pose" its been with a Chirai Patient....but i got to reading about AVM, as i stumbled across while i was looking for birth marks. Z (My baby) has the Storke bits and the Angel Kisses, then some other small red spots on his head and next to his nose. These are also called Salmon marks, which apparently arent life threatning but i just though it seems an awful lot like the AVM marks.
Anyways, PLEASE watch this clip. Sorry the video quality isn't great but it was my cell. These spells come in clusters. Its almost as if they coinside with growthspurts but i have no idea, there is no rhyme or reason it seems. These are VERY positional. They only occur while he is in the upright postion or sitting, or in his car seat- they have NEVER happened while he was laying down. Also, when he gets into them, we can literally take him into them and take him out of them (usually). He turns bright read, grunts, i think he holds his breath, his eyes stair forward, look glassy, his arms stay out and move upwards. He gets very stiff...sometimes its hard to get him to bend. They last anywhere from 5 seconds to 20 seconds. He screams bloody murder when they are over. As his mother i can tell he is in pain afterwards...some nights we can't do a thing to comfort him at all they are so bad. This is NOT him being angry, upset, scared, wet, no this is different.
One other thing, can AVM be related to vocal tics. He does this weird thing and i cant describe it on here, but its very blunt and its DEF not him playing. this is different, sounds like....a vocal tic, but i havn't told the doc yet as i just figure it out. So do you guys think this is an AVM or something else. please pleae help! we have seen some of the best doctors and yet it's still a case of "House"/.
I too worry that my daughters hemangioma on her head could be an indication of an AVM now I have been diagnosed with one, I also have the little red spots everywhere - so does she.....
I would have thought the MRI's would have found it though, thats what found mine. A MRI looking for other things, as I have a lot going on!!!!
I hope you get some answers hunni, it's a really worrying time for you. Keep us posted. X
Thanks so much for your encouraging words. Its getting really tough not having a diagnosis. :( Lena Court said:
I too worry that my daughters hemangioma on her head could be an indication of an AVM now I have been diagnosed with one, I also have the little red spots everywhere - so does she.....
I would have thought the MRI's would have found it though, thats what found mine. A MRI looking for other things, as I have a lot going on!!!!
I hope you get some answers hunni, it's a really worrying time for you. Keep us posted. X
I never had any kids of my own. So I realy don't know but, by watching the clips - I was wondering: Is it possible, this is how he is reacting to pain? Since it doesn't happen when he is laying down, could he have a problem in his back? Possibally, being out of alignment? I'm just thinking out loud, an idea I had. It may be worth asking the doctor if it could be. I hope you find out.
i was wondering the same too (bc it is VERY evident that he is experiencing pain). They have done 5 MRIs and 2 of those were on his spine (which they said was perfectly normal). So as far as that goes, it doesnt seem to be the issue. but maybe we could look into it more. He is also does this when he is sitting too. Who would we go see about this if it is a back thing? all i know is this has been happening since he was 1 week old (he will be 19 weeks tomorrow)…so if it was back pain, youd think it would have worked itself out by now. But you do bring up a good point, so im gonna look into it…with the clips, have you ever witnessed anything like this before on anyone else? I just dont know what to make of all of this…called the doc today bc i think he has vocal tics…but its a large hospital…of course i didn’t get to talk to him =/
Ben Morrell said:
I never had any kids of my own. So I realy don't know but, by watching the clips - I was wondering: Is it possible, this is how he is reacting to pain? Since it doesn't happen when he is laying down, could he have a problem in his back? Possibally, being out of alignment? I'm just thinking out loud, an idea I had. It may be worth asking the doctor if it could be. I hope you find out.
My one friend has a 5 month old (whom I call my niece). The only time she acts similar to that, is when she has a bad belly ache. Then she will often stiffen right up. And of course holler and scream her little head off. Her doctor thinks she is having some acid reflux along with a belly ache. She does throw up sometimes. We give her a stomach med. for it and a few minutes later she is fine again.
I don't know how you feel about chiropractors. The one I go to also works on babies. Not the same way he works on adults, obviously. But, he does muscle testing to pinpoint troubled areas. He picks up on illness on people and then, when they went to there 'regular' doctor he/she confirmed it.
I think too he's in pain. It's hard to figure out - What kind. My prayers are with you and your family. It's heart breaking when we get lost in what to do for them. Tylenol? It helps them when they are teething. I'm thinking out loud, again.
Vocal ticks - I'm not to familiar with it on babies but, I think its from a muscle twitch/contraction in the larynx. Which for adults can come from the back of the neck, near the axis. I'm sure there are other causes for it to. With him being a baby, I would think he probably grow out of it. I believe it's worth asking the doc. about it though. I don't think you can ever be too cautiouse when it comes to child.
Couldn’t watch your videos on my phone. I have a question. If you put your ear to his soft spot, can you hear his heartbeat and/or his blood pressure? If you can tell your doctor. That’s what happened to my son. Docs thought it was a tumor til I said that. TELL YOUR DOCTORS EVERYTHING THAT YOUR BABY DOES THAT SEEMS NOT QUITE RIGHT! That’s how they figure out what’s wrong, how bad it may be, how they treat it,how it may have affected him& any kind of therapy that might help him. Keep a notebook with him at all times so you and other people(father,grandparents,babysitters,etc) can write the weird stuff down. It helps keep everything straight & don’t forget to at least date it. I’ll say a prayer.