Our DD3 has recently been experiencing a myriad of seizures and spasms ranging from 1 or 2 a day to in excess of 20.
We have been seeing a neurologist at the RCH and their feeling is that she is dealing with what they call 'benign myoclonus': basically an imitator of 'infantile spasms'. We are incredibly thankful and relieved that she is not suffering from the latter. Anything with the word 'benign' in it is a cause for celebration.
Obviously from a neurological (and neurologist) point of view, she is developmentally on track and apart from continued reviews every couple of months does not require any acute care.
BUT. the fact remains that she is still going through some pretty major and at times for her, distressing spasms and seizures. She is so darn tired it isnt funny.
Has anyone else's child gone through this? What did you guys do to help your child through the episodes?
Does anyone have tips on how to help her through these episodes? I am thinking an osteo (her body is very fraught and tight). But also diet wise? Her potassium levels are really low due the the effects of the spasms and seizures. We have been boosting our diet with avocados and bananas and i have been eating loads of almonds hahaha, but are there more effective ways?
I really need some support this could last a few years and I kinda feel like I am not really keeping my head above water right now (early days, but yeah...just really tired and worn out a bit).
My DD was diagnosed at quite a young age when jerking like movements were noticed when she was only days old! Lots of tests were ran and we were told it was Neonatal Benign Myoclonus.
The good news is that it doesn't do any harm to the developing brain having these seizure like patterns. The bad is you can't really control seizure like activity (we tried everything from my diet as I was ebm feeding to the doctors trying epileptic medication to relax her muscles during sleeps with little to no relief).
It does go away in time. Try to hang in there hun. It's scary to watch sometimes and can disrupt the sleep cycle quite a bit. Like I said though, nothing can really be done, it's just something they have to grow out of. My DD had symptoms of it whilst she was in the nicu (she was extremely prem) until the age of about 11 months. The jolting just stopped one night. It was like a switch just flicked in her brain.
I am going to pm you a link with some information that helped me during DDs diagnosis too. Hugs love you are a brilliant mummy, hang in there! X
I have a childhood onset condition that causes muscle spasms. i was misdiagnosed for many years, before getting a diagnosis and treatment that helped dramatically.
Some non-med treatments that have helped me are heat, water, firm pressure and massage. Does your little one like swimming? I would take her regularly so she can move in a more weightless way. Deep baths.
i don't know much about benign myoclonus, but movement disorders can also often have associated hypersensitivity to touch or sensation. certain fabrics or food or touch may irritate.
does the diagnosis fit what you see in your little one?
Having a dx is a blessing and a curse isn't it? Tells you what it is, but doesn't really help you out at all. I have no suggestions Cass, but I wish that she (and you) didn't have to go through this I hope she grows out of it quickly
I will BBL to reply properly but am still a bit overwhelmed...but getting there as DD3 has for the last 2ish days been seizure free (not spasm free....but still...not so constant).
Thanks Purplepixie for the info
HotI: that is interesting regarding the clothing...i had a moment where i was wondering whether something she was wearing was causing particular issue.
So, DD3 has continued to have seizures. They vary in intensity and frequency. I have gone through moments of sheer terror and distress to relief and joy...sometimes all in one day lol!
We are on bi-monthly appts with her neurologist. At her last one we were quite hopeful that we had pretty much seen the last of them (as she was only having a few every week or so (she was upwards of 30 a day prior). But unfortunately it appears that it really is a case of ebbs and flows (with a few weeks back seeing 48 hours of 100+ a day ). the really only positive from that rough patch was that i was FINALLY able to get some of them on camera. it was a request from teh neurologist so that they can start a profile that is more unique to her ITMS (basically he told me that alot of this stuff is about what is 'normal' for her and going from there).
As for DD3 herself: she is a bubbly happy baby and we have had 3 weeks reprieve () and to see her relax and smile and just go and get back into loving life is just awesome. it has also really been a time of hitting home to us just how hard and exhausting this whole shebang is for her. For the last 6 months she has been a trooper, no doubt, but now, with 3 weeks of awesome under her sleeve she is developing beautifully, chatting, smiling, interacting and has the energy to play!
I hope that she remains seizure free forever! we have her next appt on monday and so we will see where we go from there, but yeah feeling hopeful
Oh gosh I did not see this before and had no idea Cass. What a time you have had. Your little one does sound like a very special little warrior indeed. I hope like you said that you have seen the last of them. Not long now and you will be celebrating her 1st birthday. How exciting.
Reply With Quotexox
Registered User
Benign Myoclonus - Anyone Else? Experiences?
this could last a few years and I kinda feel like I am not really keeping my head above water right now (early days, but yeah...just really tired and worn out a bit).
) and to see her relax and smile and just go and get back into loving life is just awesome. it has also really been a time of hitting home to us just how hard and exhausting this whole shebang is for her. For the last 6 months she has been a trooper, no doubt, but now, with 3 weeks of awesome under her sleeve she is developing beautifully, chatting, smiling, interacting and has the energy to play!
Bookmarks