Sleeping & myoclonic jerks

[MaksMum]

Hello... I was wondering if those who have myoclonic seizures could shed some light please?

My daughter has myoclonic jerks & is waking alot after around 40 minutes of sleeping.. I'm assuming that this is when her natural sleep cycle reaches it's lightest period. She cries out & can't resettle on her own (she's only 11 months old). I'm thinking that maybe her "jerkies" have something to do with this. However, she can't tell me.. Which is why I'm asking for ANY advice from people who suffer from this. I know babies aren't such great sleepers, but I do feel that there is a link between her myoclonic activity & her sleep pattern. I'm trying to understand so that I can help her.

Is there anything that you have found useful to help with your sleep?

Any other advice would be wonderful.. I've been reading lots of forum threads to understand how this is affecting her & how I can best help her through it.

Thanks...

 

[frshbeat]

I'm so sorry your dear little girl is having to go through this.

Myoclonic head jerks are a part of my history. Having too many in a series used to lead to a Tonic Clonic (Grand Mal) seizure.

The myoclonic jerks and Tonic Clonic were finally controlled by the introduction of Depakote over 30 years ago. This last year I went off the drug because of the more dangerous side effects. My new drug does not have the same efficacy and I'm back to experiencing occasional myoclinic jerks. They are rare, but still remind me of the days of major seizures.

During that transition period, sleeping was the hardest part of my day. An incessant amount of myclonia activity was noticable while trying to sleep.

When my head was rubbed, it did not seem to help, and sometimes seemed to exacerbate the situation. It was apparent that I needed to figure out ways to naturally help me induce sleep. Did some extra running and read more than I usually did. Just kept trying things that made me tired and relaxed. Ultimately helped me go into a deeper sleep.

Also, as I lay trying to sleep, repetitive yawning would help a great deal. This is because when I'd swallow, each swallow would be accompanied by tiny little head vibrations. Repeated yawning would allow me to swallow without issue for a while. I just got into a habit of doing this for some time. Eventually the new drugs efficacy took hold and that shaking and vibrations during sleep subsided.

This is going to be difficult because this small child is not able to communicate with you as well right now. Also, I'm sure you are giving your girl the best nutrition. Keep in mind, if your nursing, whatever you ingest is being passed along to your daughter. Look under every stone. There could be allergy issues. Check out Robin and all her findings in the story of her Daughter, Rebecca...Rebecca's Story

Best to you.

 

[MaksMum]

Thank you so much for sharing your story.. At this stage everything I can find helps me to understand what she is going through. I wish you the best in your journey with your new medication..

I am nursing her, so it's possible the swallowing may be frustrating to her. She seems to be ok with it though. I haven't noticed any behaviour to signal that it's creating any havoc. I'll also start to keep a food diary to see if there are any triggers..

I usually sit with her to try to settle her during the night & I can feel her body jerking, so I know that it's happening.. It's just so hard because I don't know how to fix it..

Again, thanks so much for sharing. I'll look up Rebeccas story.

 

[Wobblez]

Hi Maksmom, sorry to hear about your daughter's jerks. I assume she has been diagnosed? Just a thought, babies frequently mimic our facial expressions, as i'm sure you've noticed. If yawning could help relax her, can u make a habit of doing it with her before bed? She will learn to associate it with sleep. Keep us posted.

 

[Merc]

Hi MaksMum.

My daughter is 12 so the comparison is too great but my daughter also wakes after about 40 minutes of sleep. Some nights she can wake every 40 minutes or so. Which leaves me in a mess the next day.

Two things that have helped Katie. (Which won't help your daughter for some time) I give Katie a Muller rice about an hour before bed and we have also introduced Clobazam just before bed.

Sorry it's not a lot of use to you but if anyone else is reading this with an older child, it may help.

I hope you get the answers you are looking for.

 

[MaksMum]

Thanks for your help & suggestions.. Because of Mak's age (only just turned a year old)they are hesitant to 100% diagnose her with epilepsy. The head neurologist at the hospital says it is epilepsy based on her EEG results but the pediatritian says that he would like to wait & see if she grows out of it. But she does clusters of jerks for hours on end.. She was responsive (jerked) to the photosensitivity test.. Her development is "normal" (whatever that means) at this stage, somewhat slower in some areas & more advanced in others. But no-one wants to medicate her at this stage - which I am ok with as I'm only just starting to learn the effects of meds etc. I'd like to learn more if I can..

Wobblez, I will definitely try the yawning.. It's an easy enough thing to do. They do mimic us & maybe it will help her.

Merc, I agree, it may not help her now, but it might help someone else & i'm all for that. I've fed Mak rice a couple of times for dinner but never really taken much notice. I will try it & see what the effects are.

I've been coping with (and mainly, so has Mak) less than 40 minutes of sleep for every hour in every day for the last 4 months now & I am ready to give anything a go. It's distressing to both of us in different ways. I asked Maks pediatritian about her sleep at a recent check up. He just said that it's something we have to contend with. But I am hopeful I can find a better way than just "accepting" it..

Again, thank you for taking the time to help...