My Toddler is going through a diagnosis..

[fiona]

Hello,

Thom my little boy, well when he was 9 months old he had a very shocking febrile* convulsion that lasted over 20 minutes.. since then he has had 12 other convulsions, some without fever... He also has what they have termed drop attacks and absent seizures. He has these on a daily basis.

I have a brain-wave scan in York in a weeks time [ECG]. The pediatricians seem pretty certain he has epilepsy.

I really need support -- my little baby can't have epilepsy?!? Although I think perhaps the perception of diagnosis is worse than the actual situation... Although he has fallen down the stairs with it already, twice infact. Having to be abit obsessive safety-wise.....

Anyway, hello...

 

[Cint]

Hi and Welcome Fiona,
It must be very frightening for a mother to see her little one experience his first convulsion. It was so for my parents when I started having seizures, but mine started when I was in my 20's. It's only normal for you as a mother to be a bit obsessive for your son's safety. Until they get those seizures under control, they can cause accidents. But I know you're doing what you can to prevent harm. Hang in there!

 

[driven]

Hello Fiona,

I am not a mom but I sure do feel for you! Of course you must be heart-sick to think that there is anything wrong with your beautiful little boy - who wouldn't be? But, I think when you read through some of the stories on here and the bios of members, you'll find there are lots of parents in your position and many members who were diagnosed as small children who are leading fairly normal and productive lives.

I have a neice whose symptoms materialized just as your son's did (absence seizures). She was a little older when she was dignosed, 4 or 5, with psychomotor epilepsy and today she's in her mid-30s, leading a completely normal life, has a great job and a beautiful daughter of her own.

Yes, I guess there is still a stygma out there about epilepsy but like many other things, it's a lack of knowledge of the subject that causes this. From what I see, on here and with people I know with this condition (and my own life), epilepsy does not discriminate between gender, age, race or intellect. Thankfully, your little boy is being diagnosed now. This can only mean that he will at least get the best start in life that he can!!

My best wishes for health and happiness for your entire family are with you!!

 

[Loudmouth]

I have been on both sides of the fence, I have epilepsy myself, and 2 years ago, after me arguing with peadiatric Neuro's for years, my daughter who is now 11 was diagnosed with epilepsy. I personally believe she has been having absence seizures since she was 7 months old. I would advise a stairgate at both the top and bottom of the stairs. My daughter's seizures have recently got worse, and I have just had to put the stairgates back up as she has fallen down the stairs during a long absence seizure. Her Neuro had us try to control her seizures through avoiding aspartame in her diet, but we are going back soon as she now needsa medication. It's awful to see your child go through this knowing there isn't much you can do to change it or make it better, but I can reassure you that If your child's development is ok, most children with Epilepsy can grow up to have a perfectly normal life. My daughter is in a mainstream school, albeit she has learning difficulties and needs extra support at school, but she has a large circle of friends, her best friend also has epilepsy, and to my daughter having epilepsy almost seems 'normal' as she has watched me have seizures for the last 6 yrs. I am glad to see you here, and by the sounds of it, you are another UK parent. There are lots of friendly people here on this forum. If you are from the UK, there is also Epilepsy Action that run support groups in lots of areas, they were a godsend for me when I first got my diagnosis, and again when I was fighting for my daughter's diagnosis.

 

[fiona]

Thank-you for your kind replies. And, I am from the UK -- I realised after posting York I was probably on a predominantly US based site... I'm circling lots of forums because I want to be armed with the best knowledge possible to manage and help my little boy.

TBH I'd prefer to avoid medication and any other routes I can follow first... But, it's a fear of mind I might put him in possible harms way of having an accident if I choose so -- it's a catch-22 situation that I will have to discuss.

The pediatrician has said to me that it's probably more of a case of what type of epilepsy now, hence why I'm visiting these sites. But, shall see.

He has about 10+ absent seizures* a day. And Atonic* [drop-attacks] a couple of times a week. Then he has a seizure which usually happens after he wakes up, which involves the cliche thoughts on a seizure, jerking limbs etc.. about once every 4-6 weeks.

[* Diagnosis through my description to pediatricians]

The last time he came out of the latter fit frightened the life out of me, instead of immediately crying and seeking comfort he just layed there, although responding to his name, unable to talk or make noise, wriggling his toes and rhythmaticlly hitting me with his hand. He also had an obsession with putting his feet up to his mouth....??? Then after well over an hour of that he threw up everywhere, said something about tractors and fell asleep.... I was really afraid it'd effected his brain quite heavily. But, after a long sleep and then much clingyness he was back to his normal happy self... Leaving me feeling abit of a fraud -- as he looked like a normal and happy healthy boy to the pediatricians and nurses.

 

[epileric]

Welcome to the site Fiona

I am from the UK -- I realised after posting York I was probably on a predominantly US based site...

No matter, we've got lots of people from all over, I"m from Canada and we've got a lot of members from the UK. It's a good thing to have more views and experiences from there.

TBH I'd prefer to avoid medication and any other routes I can follow first... But, it's a fear of mind I might put him in possible harms way of having an accident if I choose so -- it's a catch-22 situation that I will have to discuss.

You might want to research some of the alternative ways to help epilepsy for your son http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments . Hopefully you can find one that helps. In the meantime don't be scared to use them in combination with medication.

 

[Loudmouth]

The after effects you are describing are what would be called the post-ictal period, and after a sleep he has recovered from the seizure (gone back to 'normal'). No-one thinks you are a fraud, it's just the nature of the beast. I'm from the UK, and have been visiting this site for nearly 2 yrs now, I've found it to be the most friendly and informative and helpful forum to do with Epilepsy. I have tried to go the route of no meds for my daughter, but now it is at the point (my daughter is hitting puberty and her seizures are worsening) where it is necessary. If the Neuro advises meds, I would go for it, albeit in conjunction with any alternative medicine you wish to try. I hope your son is doing ok, and big (((((HUGS)))) to you. Like I say, though, my daughter AND her best friend both have epilepsy, and both are doing reasonably well in mainstream schools with additional help. I myself have been on various meds for 6 yrs now, as it is definately a bit of trial and error finding the med that works best for each individual. All I can say is start keeping a journal now, so that if/when meds are started you can pick up any changes, good or bad, that can be attributed to the meds.