I have APS, being diagnosed with it because of repeated miscarriages. My condition is managed well with aspirin.
However my 17 year old son has started to have seizures, I wonder if this is linked to the APS and possibly to him having the condition?
Does anybody have any experience with their children having seizures and this being caused by APS?
Any help / guidance would be appreciated.
I have epilepsy, I think caused by damage from hughes syndrome being untreated for years, really good that you are aware and can make sure he gets tested
Yes, I have temporal lobe epilepsy ( partial complex).
APS/ Hughes syndrome is being cited at the cause for me, more specifically, " micro clots."
Please note it is common for micro clots to be too small for MRI's to pick up. ( Kersten from Sweden- profile name Lure2 I think is one of our admins who can speak very well to this as she has had a lot of experience with micro clots and scans not detecting them- especially in brain.)
My seizures were picked up by the gold standard EEG. Topomax ( toporimate) 300mg controls well.
This info is getting the cart before the horse, and as APSnotFab wisely advises, the testing is the first order of business, but to answer you directly , yes. It's not uncommon and my neurologist sent me many papers on the subject Dr Hughes was first author on or co authored.
...additionally my 15 year old son just tested positive as well. No seizures. Just mild migraines / headaches and quite pronounced POTS symptoms of orthostatic blood pressure disregulation upon standing from sitting. We need to get that tested.
For now his pedi heme has him on jr strength aspirin. He told me a couple of nights ago he has noticed a world of difference in how he feels Over all in general on the aspirin. When I ask him to be specific, he can't, really...
Thank you! I am going to insist he is tested
Hi my son has seen the neurologist and he immediate dismissed APS as a cause and said it would only be a cause IF he had had a stroke.
My Reading doesn't support his view. Just wondered if you have experienced this? Or had a stroke?
I'm so sorry, Vicky. This process is often two steps backwards and one forewords. It feels impossible but we will muddle through this, all of us together. Sounds like Mary F will be of great help also.
I have a few questions.
Firstly, ( forgive my poor memory...)
*What do the initials IF stand for?
* my seizures are right temporal lobe seizures. Partial complex. My neurologist sent me an article- Usually APS causes just these kind of seizures. They are normally due to micro clots of the tiniest of arteries of the brain.
* actually, temporal lobe seizures are responsible for 70% of all seizures, so... APS related or not.
* does your son have a diagnosis of APS? I'm thinking he does not, but you are thinking since you are positive, there is a strong possibility your sons seizures are APS connected. Correct? ( I would be thinking along the same lines until proven otherwise.)
* does your son suffer migraines ?
Oh- sorry- I just figured out IF! It was not an abbreviation! ( I'm having problems with my vision- my brain does not always hold my eyes steady- I always feel so dumb when that happens! My eyes jump lines of text so it fragments.)
The answer: absolutely not!
Good lord!
You are in England, correct? Any chance of seeing Dr Holmes in London? Do you have to have a confirmed diagnosis first? How old is your son? At what age in England is the shift from pediatric status to adult? ( some docs here in the states accept at 16, but usually it's 18)
Will dr Holmes take a pedi patient?
I hear ( from this forum ) that in England most neurologists that are not APS specialists , are pretty wretched with general knowledge on the subject. ( they complain quite a lot!)
I myself, got exceedingly lucky with mine. He was London trained in rare and unusual seizures . I can't remember which one - maybe Guys.
...and additionally I've likely had a TIA but MRI is clean. Last week my neurologist had me undergo a brain venogram with contrast for a base line because I am so high risk for stroke. And... it will be interesting to see if any issues show on this test. I don't have results yet.
Unless you really ," feel joined at the hip" ( old Texas saying) with this neurologist- I'd ditch him.
Do you have the luxury of doing so?
Hi thank you for your comments, he is 17 years of age. He doesn't have migraines or even get ill often. I have an appt for him at Guys London Hospital as I instinctively feel there is something else happening .
I found this attitude and approach from doctors when I was having problems. They seem intent on treating symptoms and not looking at the cause. Appt at guys next month.
Keep us in the loop - very interested in how he gets on xx
Perfect. Yes, I think you are well versed at the frustrating experiences of getting at the bottom of things.
Perhaps it's not related. I supposed we can't become completely APS biased or we might miss something else entirely. ( but I do suspect it's a strong probability.)
Best of luck to you and your son.
A point a lot miss -Dr Hughes discovered our disease when he began researching a funny gait caused by neurological deficiencies called " Jamaican encephalopathy syndrome. ( I hope I'm remembering that name correctly!) So actually, neurological problems have been linked to sticky blood from the beginning!
Hi thank you so much for your reply. He doesn't seem to have any other symptoms but he is so laid back he wouldn't complain if he did.
He is often cold and tired ( which I now guess are symptoms) but I am only just connecting the dots, as he never makes a bad g deal about it. He also doesn't sleep well ( unsure if that's related)
He had an MRI Tuesday ( after another seizure) and thus showed no abnormalities, and we are again left waiting to see a consultant neurologist.
The GP reluctantly agreed it may have something to do with APS but wouldn't refer him, wanting to see what the Neurologist said and suggested anti epileptic drugs whilst we await an appt.
I am going to go back and insist he is referred to an APS specialist and I was thinking of Guys London
It seems such a battle to get heard .....
I had seizures as a child but grew out of them by time I was 9 or 10! As I've said from my history I've had APS my whole life!!! When ur born sick , it makes it easier cuz u don't know any other way and u learn to live with it! I think lol...
Yes, that he's 15 and can't articulate!
( kidding aside, I agree. I can scarcely describe some of the more nuanced manifestations of this disease, especially the neurological ones. Until they smack me upside the head. Then I can't articulate at all! Or walk! Or think!
HI yes it is related and my children had this sort of thing going on, very important to get the tests done, mine improved a lot on daily Aspirin. MaryF
Hi thank you for all the helpful comments. I have managed to get a referral to Guys London Lupus Clinic for my son. Sadly the seizures continue and are increasing in frequency. He has an appt with a neurologist (finally) early August. I am concerned they will just give him anti epilepsy drugs, but if it's actually because if APS this may not be the right move / treatment.
Seizures, just got out of hospital after being admitted from home with maybe two seizures.
Newly diagnosed with APS Jan 2013, needing answers where possible :)
Seizures, Shaking &/or Intentional Tremors Anyone?
1 Year and Counting
Severe seizures all day.....
