5.5 Month Old with Myclonic Jerks

[goldhalo]

My infant boy began having Myclonic Jerks (right shoulder lifting to meet right ear, his head tilts slighly as well) at 5.5 months of age, or at least this is when I began to notice them.  I brought him to my family doc for a peek, and of course, DS didn't "jerk" while there.  I then video-taped my child "jerking" and returned to his office 2 weeks later.  My family doc told me that he is having "Myclonic Jerks" and I am now referred to a Ped. Neurologist, and apparently the wait list is extensive.  *sigh*  I am VERY worried, and my family doc will give me no indication as to the seriousness, or lack thereof of this "jerking".  The jerking itself seems to occur spontaneously, but I have noticed shortly after waking, when tired, and when stimulated, especially with Mommy doing extensive tickling and giggling.  My question is what is the eventual likely prognosis of such an event in an infants life?  Should I expect full recovery with no lasting effects? Learning Disabilities? Possible ASD/Austim? Metal Retardation?  In addition, is this a rare occurance? and what tests should I expect to be completed at the neurologist?  I have done much "googling" on infants and myclonic jerks, and some sites are positive in outcome and others are down right dreadful.  Mommy is naturally frightened.

Thank you so much for your time.

[dollyn]

It is normal to worry and be  scared  about your little one.I am glad that you got to see the neurologist and hope they can help your little baby boy and you.

They should also be taken blood work to make sure that everything is normal.

Stay strong and don't let the doctors blow you off ,you are the one and only one who can fight for your son needs and to make sure they are being done and meet.And if you feel they are not you make sure that you are being heard even if that means you taken your son to see someone new.

god bless you and your little boy.

And it does help to talk about it to others.

[goldhalo]

Just thought that I would post an update to this as I find myself wondering about others who have posted questions without the eventual outcome...

I have been to see 2 Neurologists armed with 6 videos of my son engaging in this myclonic episodes.  At their peak he was having 100's a day and they always appeared in clusters and were favoured upon awakening or drowsiness.  Luckily/ Or Unlucklily for me, depending on how you look at it, while I had each of my appointments with the doctors he was engaged in myclonis jerks the entire duration, so they got to see it on video and in real life.  Ironically, a week after going to the doctors, the jerks have all but stopped, some days he has none, others 2-3 a day.  The neurologist offically called it "Benign Infantile Spasms" and indicated that most children outgrow at at 2, latest 4.  He also told me that they will likly get much worse before getting better.  Given that he was already having 100's a day, I am hoping that was it's peak.  I should also mention that he had a spontaneous improvement in the past as well, only to re-start the jerks with avengence a week or so later.  To date, he is still having few or none daily.  Crossing my fingers that it stays that way.  As a precautionary measure, he will be getting an MRI and video EEG done next week.  I hope that they can capture one jerk on the EEG just to see if indeed it is non-epileptic.  I am praying that he has normal results.  However, I am uncertain what if "normal" really means anything at 7 months of age.  I am still very worried about neurological and developmental outcomes for my son.  

[dollyn]

This is very scary for a parent and a child.And I also know what you mean about being worried.I worry every day.

And like your son,my son come and go and never know when they are going to come.Witch make it very hard.And my son has them on both side of the brain and witch they cant do anything but give medicines,and when they don't work they put a VNS chip in my son.And there is only a 50% chance it will work.Along with his medicine and hope to be able to get him of some of them.

Don't be surprised if one medicine  don't work ,may have to try some to find the right ones,and also may have to take more than one kind.Or since he is so young maybe they may have you change his foods that he eats to see if that makes a change.

I hope to help you and not scare you any more than you are already.

god bless.I am here for you if you need it.

[goldhalo]

Thank you for your reply!  I have been and still am worried sick.  I am trying to find a pattern in the seizures, and as of right now, I do not see any.  They are now occuring on his right AND left sides, and once both simutaneously.  I finally got a call from the ped neurologist today who gave me an URGENT appointment for Sep 21.  *sigh*  I can't believe I have to wait that long, I am sooooo worried about the future outcome for my child.

Thanks for listening!

[dollyn]

I am very sorry your little one is going threw this.

The one thing they should do is an EEG ,to see if there is any seizures going on and if so where they are coming from. They also may want to do an MRI to make sure there is know damage to the brain and that the brain is where it should be for the age of your child.

And yes it is very scary.I would bring the video with you when you see the Ped. Neurologist.

And I hate to tell you , yes there can be .Learning Disabilities? Possible ASD/Austim? Metal Retardation?  And know it  is not  a rare occurance?

I would right down everything you want to know,and take it with you so you don't forget.

Also start writing down every time you see this ,and how long it last and what was happening at the time.And the date it happen.

Any medicine has been given and also what the birth was like.

My son has seizures and everything you are saying about when they happen ,is what happens to my son who is 10 years old.

look up seizures on line ,they will be scary and there are more than one type of seizures.

I do a lot of praying

god bless you.
and hope to help you if I can..