Here some suggested organisations that offer expert advice on SN.
Focal Seizures?(49 Posts)
it's EandZ--just in case anyone remembers me and my Ds.
He's started to have focal seizures--they began yesterday--I saw a paediatric neurologist today who said that my son will now have to follow the epilepsy protocol and he will now be tested intensely in the next two weeks.
what does this mean? what is the best case scenario (that it's all just a twitch and will go away?) what is the worst?
I am currently pregnant with dc#2 and I honestly do not think I can afford to have a second child if Ds's needs continue to grow. please help me, I am absolutely terrified. DH and I aren't really getting along at the moment and morning sickness is making daily life unbearable.
Thank you Leonie,
how are you and babes?
I'm shaking out of my mind.
thats all I needed to hear.
it's a lonely world out here. I appreciate your support.
Leonie nailed it - Bee does have epilepsy. However, her case is not usual, so PLEASE do not compare your DS's first focal seizure to Bee's epileptic encephalopathy.
You said he "started having focal seizures yesterday". What do they look like? Did the neuro actually SAY they were focal seizures? I ask, because a seizure can appear focal, but the definition is that it arises from a single point in the brain, and without already doing the EEG to determine where that focus is, he was speaking out of his hat. Complex motor tics or stereotypies can (and do) often resemble seizures and it requires testing to determine which one you are dealing with. At other times, like with Bee, there can be both - complex motor tics and The neurologist said that he would be intensely tested (why professionals use language like that when parents are already upset and unsure will never make sense to me). Likely, he'll have blood testing, EEG and MRI to determine if there is a reason to look further into "other" causes for the seizure or if it appears idiopathic. In all honesty (and in our experience), "intense" testing rarely happens over 2 weeks - unless it is inpatient and highly urgent.
An EEG may not show active seizure activity, but there is something called "post-ictal" or "inter-ictal" activity that can show evidence that a seizure has occurred recently. With that said, it can also appear totally average, in which case, it does decrease the likelihood that it was actually a seizure, but does not rule it out at all, as the EEG is only a brief "video clip" of the activity on the surface of the brain. Seizure can also arise from deep brain storming, but that is almost always associated with congenital brain malformations or traumatic brain injury. It is important to note that if the EEG is unremarkable, it does increase the chance that there will be a resolution of these episodes, unlike if the EEG is wildly abnormal, even in the absence of seizure activity.
The MRI will be to see if there are any malformations in the brain, issues from prenatal development, delayed myelination, lesions, signs of trauma etc. If he fell and had a hard knock as a little guy, but seemingly recovered fully, slight scarring can cause a "short" in the brain down the road. However, it is quite possible that nothing significant will be found in the MRI, either. Depending on the facility where he is having the MRI done, a second test may be done at the same time call an MRS or magnetic resonance spectroscopy. This would be ordered if they had reason to be suspicious that the seizure activity was being caused by an underlying metabolic disorder. It uses spectroscopy to determine if there are excessively high or low levels of particular chemicals in the brain (lactate, pyruvate, glycine, homocystine etc).
The blood tests will be looking for irregularities in his electrolytes (potassium, sodium, chloride, calcium etc.), blood counts, checking for some metabolic disorders, thyroid function and a few other things. This is routine in the first seizure follow up - it may seem overwhelming, but it is mostly precautionary.
The results of this testing can be helpful in trying to determine appropriate treatment for your son. On the bright side, well over 1/2 of children with seizures will see them resolve before adulthood. Try not to get yourself too overwrought about all this - by your description, he had his first seizure on Friday. It is Sunday now -2 days. You will be OK, he will be OK, and we are all here for you until you both are...
Sorry, in the middle I managed to mess it up.
What I was trying to say was that Bee has complex motor tics and seizures. We discovered that something we (Neuros, her Dad and I) believed was a seizure (which she had on EEG during a 3 day telemetry monitoring) turned out not to be, but several things we thought were behavioural turned out to be seizure activity.
Even the pros can be wrong...
Hi queen my dd3 has very severe epilepsy (which is not the norm AT ALL and most Drs find her a little alarming), more "run of the mill" epilepsy I have less knowledge of.
Things that might help to know,
50% of children grow out of it, and it makes no difference what kind they have. (Can you her the slight wistfulness!)
Most are idiopathic (ie nobody knows what causes it)
It is and "old" dx and so there are lots of meds to help, the more modern ones are less "dirty" (ie the side effects are less difficult to live with)
Seizures start at one point in the brain then snowball/electric storm through the brain. For this reason what happens just before and the first thing that happens during, can help Drs understand where the misfire is happening, that and the sort of seizure, lets hem take. Punt as to what meds might help.
Once you have your medication it can be relatively straightforward. Ie take you meds, don do some things alone in case you hurt yourself.
Ask anything as I can't really remember wht I didn't IYSWIM!
thank you soo very much for all of this. The Neurologist saw two of these episodes happen during our visit with her. She did immediately declare them 'focal seizures' ...I am just hormotional and already on edge because of several things....Ds and his ASD, statement issues, DH and our crazy shitty marriage--not to mention I am pregnant again.
as far as the 'two weeks of testing' her words--not mine. MRI's bloods, some type of sleep testing...she wants us to switch to a 'ketogenic diet' right away.
So now what?
Sorry hideous typos! I was trying to feed 5 children....multitask failure supreme.
I hope you can understand what I was trying to say.
Has she referred you to a dietician and aplied for the funding for the ketogenic diet?
Why are they not trying medication?
How many seizures is he having each day?
yes, we've gone private...I have terrible anger issues when it comes to being 'patient' with the NHS. Or anything really.
I think it is hard to be patient, but also that the ketogenic diet is only really recommended for really intractable epilepsy. I have a love hate relationship with the NHS, but wouldn't say that dd's treatment hasn't been aggressive (or that we wouldn't have jumped t private if it would have expedited things).
Dd has had multiple MRIs (I think three), tons of eeg's, and certainly is doing well on her medication.
That said I do think the ketogenic diet is an amazingly powerful treatment. How old is ds, because it requires uber compliance and micro supervision?
Ds is 4 and a bit. Will be 5 in sept.
My mother is an American Military Doctor (Despite what everyone says about American healthcare); I've never had to wait very long for medical care.
I too was brought up with private medical care. So you paid your money you got your advice/treatment.
If you walk into an AandE with a child having a seizure you are likely to be admitted and in our case had EEG within hours and MRI within days.
I would recommend Bristols children's hospital, they are very aggressive though so expect a whirl wind of tests. I have heard John Radcliffe is brilliant and they have a new dedicated wing I think?
Is he still seizing? Keto is only used here if all else has failed.
I did walk into A&E (we're in London) we waited for about 4 hours until they told us we wouldn't be seen till the next day. I live next to St.Marys Hospital so went there first, then went to Chelsea and Westminster Hospital for 40 minutes before Uncle said he was already at our house. Came home--he watched N.
My uncle is a paed.neuro in Bristol he drove up thursday night with my aunt and cousins (cousins are on Holiday--uncle and aunt are in mid 40s--not that this matters) but I still had to wait to see a proper professional. On the NHS I would have waited and waited...especially here in London.
problem is, with his accent and all the kids running around, DH and I didn't understand a single thing he said. He just said he wasn't going to falsely re-assure me; but that we should read 'the secret' and keep N and ourselves happy until we saw the doctor.
I love family, I do; but having an international family sometimes has it's own challenges.
I think if you're in London you need a Londoner, to advise how to deal with it. I personally would want to try medication because keto is SO hard to control with school age tinies (one haribo, one biscuit and your carbs are all out). That said, if dd's meds stopped working shed be swigging cream for breakfast with the best of them.
Join the discussion
Please login first.