Myclonic type movements ?

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This topic contains 6 replies, has 3 voices, and was last updated by  cmackd 3 years, 10 months ago.

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  • #801

    cmackd
    Participant

    Hi our 18m daughter has had a number of febrile seisure since 6 months, all linked to illness or low threshold raised temp. They are tonic-clonic and complex as they last up to 25mins. they have been quite frequent, one every 2-3 weeks.

    Now we use paracetamol suppositories the frequency has reduced and we fe we have prevented some occurring that we wouldn’t have been able to with oral temperature reducers.

    My query is around her recent jerks / spasms, not around a seisure. They last a few seconds a time,occur generally when tired. They are becoming more frequent in the last few days they’re happening throughout the day. From online research they appear to be myclonic.

    Do any febrile seisure sufferers experience this ?

    Many thanks in advance

    #802

    haejin0329
    Participant

    Hi. My daughter was the same
    You should get the genetics test because she was diagnosed with scn1a mutation. She went through the exact same thing!! She’s on keppra and topamax.

    #803

    razia
    Participant

    Hey their my son Is 2 years old and has about 5 seizures since he turned 1 for about 6 months now he hasn’t had a seizure althou he has these jerks all the time whilst asleep I havnt had them checked out as yet but it does seem 2 be coneccted 2 kids with fever seizures

    #804

    haejin0329
    Participant

    Sorry I was too quick to answer before. My daughter had her first seizure when she was 6 months old, all due to fevers. And she would have at least 2 to 3 seizures a month (they were all grand mal). We noticed that her fevers would spike up when it happened. She had her EEG done and was given medicaiton but we thought she was too young to be on any kind of medication, so we refused. She came down with a very bad cold when she was about 14 months (she is 18mo old now) and developed myocolonic seizures. She had these involutary jerks many times a day and I also noticed that her eyes were fluttering sometimes.. We were hoping that she would grow out of it but her condition was getting worse. We finally went to the hospital and got her on the medication. But she was still having break-through seizures and had one status epilepticus. We are still trying to find out the right mix of medicine for her. However, all changed when her genetics testing result came back. She has this mutation gene called scn1a. It is associated with Dravet Syndrome which triggers the seizure with a vaccination or a fever before the age of one and then, develops different types of seizures, like myocolonic. It it a spectrum disorder. You should definitely look it up on line. I am no doctor but what you described up there is what exactly my daughter went through.
    Did you take her to the hospital and have her done EEG? My daughter’s neuro was already gearing towards scn1a and has been using the medicines that are specifically good for that condition.

    Like I said, I am no doctor but you should definitely check her out. And consider having her on the medication. Please contact me with any questions ([email protected]) as I’ve been through so much with my daughter for the past few months, I am more than willing to share what I’ve learned!

    Good luck and my prayers are with your daughter and your family.

    Jessica

    #806

    cmackd
    Participant

    Thanks for your posts. We’re very much hoping that this is like Hazia’s experience and the tonic clinic seisure might subside to be replaced by these myoclonus in the short term.

    Our daughter began having seisures at 6 months and had had them almost fortnightly since. All linked to
    Illness or low threshold temperature.

    Her myoclonic type jerks have become more frequent and noticeable over the last days.

    Her behaviour had also been dramatically different. She’s clingy, complainy, and has had long crying spells and now she’s having full blown tantrum looking episode where she us thrashing inconsolably for up to 40 mins. We’re very much hoping that this is a gas / constipation problem as she does seem better when she had pooed.

    Our consultant and us is rents have opted for no medication and we want to give her s chance to get over these seisures herself without meds if possible. They found very hit and miss with huge side affects.

    Any similiar behaviour insights?
    What is a break through seisure? And have medication meant improvements?

    Many thanks

    #807

    haejin0329
    Participant

    Hi there,
    Break-through seizures are the seizures that still occur despite the use of anticonvulsant medicines. If seziure can be controlled 100% with the medications, that would be perfect right?…

    Well, my whole family was very against using the medicines too in the beginning.. But as things were getting worse, we found out more information as to why my daughter needed to be on the medicaiton. If there is not enough oxygen due to a seizure, it could possibly leads to developmental issues and also there is more chance of developing an epilepsy if seizures persist. And we need to figure out if there is something wrong with the brain! MRI & CAT scan are needed!!

    Who is your consultant? Is he/she a pediatric neurologist? Did your daughter ever have EEG done? Fevers and virus infections lower the seizure threshhold. But for someone like your daughter and my duaghter, it doesn’t take that high of a fever to have a seizure right?

    Medicines are trial and error. For my daughter, genetics testing was crucial because there are a group of medications that is good for her condition and there are others that could make her seizures worse. That’s why it is important to have the test done; to find the cause. Yes, there are side effects to every medication out there. But every child is different. My daughter developed the rash to this one medicine called trileptal and was vomitting with this other one called depakote. So now, she is on topomax which is known to be well tolerated. She had her breakthrough seizures here and there but so far she’s been doing okay with the medicine. Her number of seizures decreased drastically (no more myocolonic). She’s on this other medicine called keppra. It is known to have the children develop irratable behaviors. But with the help of vitamin B, my girl’s irratability got so much better. (Vitamin B6 helps to calm her down)

    I strongly believe that having the EEG done is a good start! Most important thing is to control her seizures so that they don’t get worse and have no impact on her developmental skills. Is your daughter doing what she is supposed to be doing for the 18 mo old? I know it must be very difficult for you because I’ve been there. But as a parent, we need to do everything in our power to make them feel better! It’s hard to see her taking the medicine, having the EEG done, but sometimes, we have to do what we have to do..

    And as far as her behavior, I think she feels that there is something wrong and that there is something that’s bothering her.. like headache, or stomach ache, or something! Is she sleeping well? I mean, this stage of the game, it is normal for them to develop separtaion anxiety or be clingy to MOM.. but if it’s everday, constant.. wouldn’t you want to find out if seizures have anything to do with that?

    I offer my sincere apology if I overstepped my boundaries and have said something that is inapproriate. But please check her out!! And also, please please do not hesitate to ask me any questions. I’d be more than happy to share what I’ve experienced. And please go visit the epilepsy foundation.org. People share very good information with each other.

    Sorry for the long drawn reply ….

    Jessica

    #810

    cmackd
    Participant

    Thanks again Jessica.

    We will get her reviewed by her consultant, paediatric neurologist, there will be a wait to see her consultant and hopefully all will be back to normal by then.

    Yes, she has had an EEG, normal activty showed with some interdictal spikes which was expected as it was post seisure. She also had a brain scan which showed normal. Lumber puncture and other normal infection checks.

    She is not on preventative meds but we give diazepam if over 5 mins duration.

    her development is great, she is on target for most things and advanced in speech. Our consultant uses this as an indication of a good long term outcome for her.

    Her sleep seems to be very affected by seizures and illness and recently she has been sleeping badly, particularly in the daytime. We think she has a problem with gas / poo at the moment so the crying episodes could be linked to that. She has been very cryie with this problem in the past. Hopefully the Drs can help to check this too.

    Thanks for your advice its appreciated.

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