July 30, 2013 at 4:49 am #755
I’m so glad to have found this group. My 21 month old daughter had her first seizure a few weeks before her 1st birthday. Since then, she has had 14 seizures. Eight of them were over a one week period. Her seizures last 1-2 minutes. Surrounding all of them, there has been some indication to me that she has been ill, but it doesn’t seem to take too much fever to bring them on (temperature readings of 99-100 mostly). The seizure is often one of the first obvious symptoms that she is sick.
Our daughter has always been a terrible sleeper and I’m 100% convinced that it has some sort of involvement in either her predisposition to having seizures or her getting sick/being sleep deprived and having them (despite the neurologist thinking I was crazy for even mentioning it!). She’s also easily spooked– our little dog runs up to her and she shakes/gets the chills and runs to me in fear. The same thing happens when she hears the mailman drop our mail through the slot from across the house. She’s just highly sensitive and has been since she was born.
Has anyone in this group experienced this many febrile seizures with their child? We had pretty negative experiences with the neurologist we saw and being holistic type people, pharmaceutical medication is really not something I’m interested in. However, at this point, my husband thinks he wants to go down that road.
Our family doctor is a homeopath and because her EEG was normal, he felt comfortable forgoing seizure meds for a homeopathic remedy, cicuta virosa. In addition, we’ve tried acupressure massage/Chinese medicine, chiropractic, and muscle reflex testing.
I’m pretty convinced that the seizures do not occur outside of illness. But every seizure is still terrifying, and I hate having to constantly worry about her getting sick. Though, the thought of giving her a medication every day which has a side effect of yellowing of the eyes and liver problems for something that happens every couple months is just really not an option for us.
I would love to hear more about your experiences. Ages of children, how many seizures, use of fever reducers, seizure meds/no meds, etc.
I’m also now terrified to continue having children. The thought of experiencing all this again makes my heart hurt.
Thanks in advance for your input.
LaurenAugust 7, 2013 at 8:42 am #758
Hi Lauren,your post has been extremely helpful to us,but very sad to know you are all having to go through this.My grandson also has been taking seizures from being a baby.(not near as many as your daughter).He attended consultants,had tests, nothing showed up! Fortunately we witnessed one of the seizures from start till finish just the other day there.Like you mentioned, it seemed temperature related( although he didn’t appear to have any form of illness). His cheeks were very red, hair wet with sweat, his knees started buckling below him,he started falling and put his hands out as he landed on the ground, I picked him up just as his body went limp, his lips and around his mouth turned blue,he went unconscious, then his body went rigid and his eyes rolled in his head. He started breathing again,eyes still rolling in his head, then slowly came round from the seizure, but was very weak, tired, and slept for an hour afterwards.He has had 3 in the past 3months,2 of which resulting in minor injuries,( hence previous hospital diagnosis that fits are stress related due to injury when falling).We are now awaiting further consultation.I have noticed he seems rather hot, rosy cheeked and sweaty compared to other children, as if his body temperature is not being controlled properly.Again like your daughter, he is highly sensitive.His mum did receive medication to put below his tongue, should the seizure last more than 5 mins.The Doctor we recently seen seemed a bit dubious though about giving this to such a small child( 21 months).After reading some websites on the seizures, it mentions a possibility of epilepsy in some cases, which is interesting to us, as his other grandmother has epilepsy.It has been such a relief to find this group. Good luck to you all Lauren, we shall be thinking of you all and wishing your daughter well.Anne.August 7, 2013 at 8:49 pm #759
Hi guys, I’ve been watching the messages on here for a while and like many other parents, it’s comforting to know that we are not alone. We have a 22 month boy who has had seizures since 6 months old and had 30 to date. They really started to be a regular occurrence when he started nursery and the last winter was really difficult for us as he had a lot of ear infections, which always triggered them (he’s had grommets since March, which have been brilliant). I always thought that this was the only cause but he does get them from colds too! He is being managed by a consultant at a local hospital and we have also had a second opinion, which was the same. Whilst they are truly heart breaking things to see, we deal with them really well and there is always a set pattern I.e. one to two minutes long, always at the start of an illness and always a temperature although this does not need to be that high (it’s the change in temp not the temp itself). I have spent hours and hours reading up on febrile seizures (my therapy really) and I know that they are not dangerous, which is a real comfort. What we have noticed as our son has got older is that the seizures are not as common, not as long and his recovery is quicker. He is also developing brilliantly so the consultants are not worried abut him. Whilst I pray they will stop, we kind of accept that this is the way it is until his brain can control a fever better, which may not be till the age of five. How I look it, things could be worse and It certainly puts things into perspective. Don’t get me wrong, it’s being like living in a nightmare at times, as you love your kids so much but they are really common and they will grow out of them. I hope this helps a few people on here and what a great website, it’s certainly been a big help for me. Dean.August 8, 2013 at 1:56 pm #760
Thanks for the feedback and for what it’s worth I’m humbled by you all.
Here at FS.org.uk every day we see progress into discovering the underlying causes of and treatment for FS so we’re hopeful that within the next few years we’ll have it cracked!
Any questions, suggestions please don’t hesitate to ask.
TimAugust 8, 2013 at 2:07 pm #761
And @lcorey22 I just wanted to pick up on a few of your queries …
– Ages of children: Please have a look at this page (http://febrileseizures.org.uk/latest-research/prognosis/age/) and remember that only 10% of reported seizures happen after the age of 3, so it’s not just the simplistic ‘until they are 6′ diagnosis.
– How many seizures: Please have a look at this page (http://febrileseizures.org.uk/latest-research/prognosis/frequency/) and I’d say your experience is right at the upper end of the frequency scale (like @deansavage’s).
– Use of fever reducers: Please have a look at this page (http://febrileseizures.org.uk/useful-stuff/fever-reducing-medications/) and remember it is actually inconclusive whether reducing fever will have any affect.
– Seizure meds/no meds: Please have a look at this page (http://febrileseizures.org.uk/useful-stuff/anti-seizure-medications/) and also there has been some recent encouraging research suggesting that C02 and Calcium channel blockers (e.g. Nimodipine) might be effective.
And finally, with regard to having more children, having a sibling with FS is a ‘risk factor’ for subsequent children developing it due to the underlying genetic factors at play but the increased risk is very minor.
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