I'm not imagining it am I??

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SnooGirl

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My 18mth old daughter has what I think is some form (abscence maybe?) of epilepsy. She will 'zone out' completely and will not respond even when touched or held. She doesn't seem to have a time of day or a trigger that i can find, and when she does come back out of these 'events' she will shake her head like she is trying to clear it, or remember what she was doing/who I am/where she is etc. Sometimes her eyes will roll back in her head and her breathing quickens. Sometimes she cries for a while afterwards, and is all shaky and scared.

The gp thought it would be nothing, even with family history, and sent me to the pediatrician. The pediatrician ordered an EEG which we got results on today, all clear. We have now been referred onto a pediatric neurologist to see what he thinks. Pediatrician fairly sure something is going on but not sure what to do next. Said meds at this age may be more harm than good??

I just feel like I am going nuts. I feel like I am starting to doubt what I am seeing? Or over thinking it? My husband has temporal epilepsy and generalized, and as a teen had photosensitive. For the last three years we have struggled to get him under control with meds and have almost lost him, and he too has the same vague 'events', although now with meds much much better. The frustrating part is that my daughter will have a week or two of lots of events and then none for weeks. We have been asked to try to film them as evidence. You know, because i would lie about it?!

Sorry for my whinge, just want to help her and fix things but can't. I am scared for her and what may lie ahead. Dealing with my husband and his episodes were one thing, but my child? Leaves me feeling helpless!!
 
Hi SnooGirl, welcome to CWE!

We have many parents on the site, and they will no doubt chime in soon. In the meantime, you might want to explore The Nursery forum. You can search for info on specific topics using the "Search" tab in the top bar.

Your daughter's episodes could be absence seizure, even with a negative EEG. The pediatric neurologist should be able to help you get a handle on what's going on, and what your treatment options are. It might be helpful if you could videotape your daughter's episodes for the neuro to see and/or provide a detailed written description of when her symptoms started, how long they last, if they happen at a particular time of day, etc.

If your daughter's symptoms are epileptic in nature, it's possible that the neuro will suggest holding off treatment with meds while keeping a close eye on your daughter's symptoms to see if they change or progress. As you probably know, the anti-seizure meds are quite powerful, and it would be great if your daughter can avoid them. Another treatment approach involves diet -- your neuro should be able to provide more information, but diets like the Modified Atkins have shown success in controlling seizures, particularly absence seizures. Some folks have also found that certain food sensitivities/allergies play a role in triggering seizures-- this may or may not be relevant in your daughter's case.

I hope you get some answers soon.

Best,
Nakamova
 
Just wanted to say I feel for you! My son is 3, almost 4..He has tonic clonic absence frontal seizures...None caught on EEG as of yet...Ambulance has been to our home twice as a result....Doctor put him on meds 2nd time ambulance had to come to our home...Like you, I got the same bit about...well, like I would lie????!!!! ...holy cow! Anyways, he is now on meds!
 
Hi and Welcome. I know what you mean about feeling like you are imagining something. My almost 12 month old son has been having strange "events/Seizures" since around 6 1/2 - 7 months old. He has just today had is 4th EEG and again an all clear a few little "bumps" on the EEG when his arms go up but we have been told they are nothing and he does not have "nasty Epilepsy" He was first diganosed with "Shudder Sydrome" via nureologists watching videos of what he does and him having clear EEG's. Then he started to "vagued" out and fall sideways, at other times his arms suddenly go up or to the side and this can happen multiple times within a short space of times. Lately has vagued out sitting, not fallen over, but not been responsive to us calling his name or his siblings running around him calling his name. He also has had a couple of "events" where he goes vague when trying to crawl and lies on his side and his L arm and L leg jerks/spasm. But EEG's are all OK. Nureo today said he's not sure what it is some he thinks is behavioural and what he often does at night it a "weird" version of a night terror. My husband and I are not sure what to think anymore as to us our little man is not quite right but nothing can explain it. In a few weeks he will be starting day care which in a way we are happy about as it will give him new sets of "eyes" looking after him for a few hours and they will let us know if they see anything out of the "normal" as we are also starting to doubt ourselves. I know for me when I videod him, I just left the video on a stand in his toy room, then watched it back I almost felt "relief" (probably not the right word) that he was actually having these "events" and I wasn't imagining them. We have been told they appear to be "epileptic events" /Tonic Events by the nureologist and he even showed the footage to an associate who agreed, without knowing my sons history. But now 4 clear EEG's ??????
Sorry long post. Hubby and I would love for him to have an MRI as he is also now often not using his left arm and leg when he pulls himself along on the floor and at least then we would have some confindence in knowing he doesn't have a tumour but Nureo still says its not needed "yet or maybe at all". Oh well might start videoing again every now and then as much for myself as for him.
Take Care
Donnajane
 
My pediatrician said she thinks MRI will be needed for my daughter, but she cannot order one. The pediatric neurologist can. Just feel like I am going crazy!! So stressful, just wish I could do more :(
 
Sounds just like my son. Paed and GP both feel he needs and MRI but are not allowed to order one. Yes its so frustrating
 
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