partial seizure, absent seizure, frontal lobe growth?

[donnajane]

We saw my sons Paed yesterday and showed her some of the recent footage of his event. It was quite confronting to have her sit their and go "absent seizure", "partial seizure", "Shudder" etc to basically everything we had filmed. She has been so anti him having an MRI but after seeing the footage has said she now wonders if he has a growth on his frontal lobe. Way to scare "mum" He has had 3 clean EEG's but his Nureo said that doesn't rule out Epilepsy as he and other Nureo's agree he is having "Epileptic Events" and we have been told they will prob do another EEG at his next apt in Dec as he is so young, 10months, and babies brains change so much. He also has thought about an MRI but has said we have "time" on our side as if it is anything he has had clear EEG's and his Ultrasound, what pic they were able to get, was OK. He is a normal boy most of the time but when he has his seizures he can often have a 3 1/2 hour sleep after them.
I know its not easy to diagnose what is going on but i just wish we could get further with his diagnosis. I am happy to not medicate him as at the moment he's not yet crawling and hopefully he will grow out of them or they will sort out whats going on before he is more mobile when they could become more dangerous if he falls when having them.
Has anyones child been found to have a tumour casuing their seizure?
Donnajane

[epileric]

I was born with my seizures & nothing ever showed on an MRI until I was 39 when it showed a lesion on the hypothalamus of my brain.

They all said that it was likely to be the cause but nothing is definite.

[donnajane]

Hi, Now at home so can post more. Would you mind if I ask what type of seizures you have/had? My sons case is proving to be quite a challenge for his Nureo and Nureo's associates to work out. My husband and I would like him to have an MRI for piece of mind, at this stage. The are holding off on the MRI due to his age and they are also worried he might have a reaction to the "general" as he has many food intolerances so are weighing up the risks associated with doing it as opposed to waiting. Thankyou for your reply.

[epileric]

My seizures were just simple & complex partial seizures. It was when I was 18 that I decided I could stop my meds & I had my first tonic/clonic (convulsive) seizure.

To this day I only get partials unless I stop my medications.

For me, the MRI made no difference regarding peace of mind. Even when they finally discovered the lesion on my brain it may have been interesting but it made no difference in how it was treated medically or how it effected me.

To me it does make sense to wait for an MRI because even if it shows something that might be the cause, if the brain is constantly changing & growing it may not be there later or if the cause does not show, it may later when the brain has fully developed.

[RobinN]

Donna, my daughter has a "birthmark" on her frontal lobe.
Her seizures were increased while on medication. After making nutritional changes, and doing Neurofeedback therapy, she has now remained med free for 3+ yrs, and seizure free for 10+ months.
The MRI she took showed the heterotopia, and she has had perhaps 3-4 MRI's to compare over time. Nothing has changed. She obviously has had this "birthmark" since prior to birth. Yet she didn't have seizures until 14. She had over 50 tonic clonic seizures. She is now seizure free.... I continued to look for a cause instead of treating the symptoms.

Conventional medicine does not have all the answers. Keep a journal, trust your instincts, gain knowledge, keep searching for answers, and take a deep breath often....

[hootie]

Donnajane...

It is good that you child 's docs are cautious about exposing your child to anesthesia.

My son with autism needed to be put under general for some dental fillings. For 48 hours after, he continued to stumble around. I was afraid to let him walk around alone. This was before he was on seizure meds. They had used multiple meds for the procedure.

About two years ago, he went for an MRI and needed to be put under general again. He was given only one med to knock him out. He lost speech for about 6 weeks after the procedure. He was 10 at the time.

My son has multiple food allergies (soy, egg, corn, nuts, peanuts).

[donnajane]

Thanks for the post. I will admit at first I just wished they would do an MRI as "something is not quite right" with my bub but then when it was explained the risks, especially with his multiple food intolerance, it made me understand. He was 7 1/2 months when they first were looking at doing the MRI and as they have said the longer they are able to way and it not affect his health the better but if the need arise that they decide risks of waiting could affect his health to much then we will serioulsy look at it.
Thanks again.

[donnajane]

Thank you all for your posts. It is so good to have people who understand. Our new Nureo is awesome and has explained to us how much a babies brain changes and that is one of the reasons he said he was shocked when we were originally told he's had 2 clear EEG's no point doing any more. His Nureo likes EEG's as they are not invasive and can be done whenever needed without any health risks. At the moment he said he may do an EEG again in Dec and then again a month or so if needed as one month it might be all clear then the next it might be totally different. Harrison's "events" have been settled into 5 "types" for the last month Shudder Syndrome, Vaguing out and falling sideways, going forward (Usally jerking head down to knees), Arms jerking up or to sides, and repeated eye blinking. Thankfully all only last no more than 5 sec but he can have clusters of the different "events". I am back at work now so I am not noticing him doing them at much and my husband who is home with our 3 kids has said he doesn't notice many but he often leaves a video running our son, for only a short time and is shocled by what he sees on the DVD when we watch it back. Having this footage has been such a vaulable resource with helping the Dr's work out whats happening with our son.
Thanks again. I really appreciate all the posts.

[RobinN]

I would like to recommend this dad's videos:

http://www.recoveryvideos.com/

Check out the before and after videos.
This is what kept me searching for answers.

[epileric]

I would like to recommend this dad's videos:
Check out the before and after videos.
This is what kept me searching for answers.

Do be careful when looking at Stan Kurtz. His site claims that he was president of the anti-vaccine group Generation Rescue.

Stan has been the president of Generation Rescue.

http://www.stankurtz.com/about/about-stan-kurtz.html


I have also read lots on science sites about how his methods are dubious by medical standards.

He also sells valtrex illegally on his facebook page
Stan kurtz valtrex - buy valtrex online without a prescription

[RobinN]

Thank God some people think outside of the box.
The video of his son's recovery proves that alternative therapies work.

I praise this man, and Generation Rescue for working tirelessly for the autistic community and not leaving a stone unturned.

Conventional medicine certainly isn't looking for answers, and the numbers of those affected continue to rise.

[donnajane]

I really appreciate anyones idea's etc. It doesn't mean I will follow them but I will definetly take in all the information and "digest" and research it. Even the Nureo's are having trouble working out what is going on with my little man. The Paed describes his case as like a jigsaw puzzle, we are gradually finding all the pieces which hopefully one day, once we have more pieces, will lead to a clearer picture of whats happening with my little man. At the moment no one can really say if we need to be concerned or not but in our Nureo's words "something is not right with this little boy"
Thanks again. Please keep any ideas comming!!

[epileric]

Please keep us updated on how things come along and feel free to ask more questions or about other experiences.

[RobinN]

That is why the puzzle piece is a fitting symbol for autism. I think the internet is a wonderful place to find communities that are searching and sharing therapies (not in the science books) that are working for many parents. No need to wait for the science to catch up with the anecdotal evidence.

Trust your gut, take some risks, challenge "old thinking", keep a journal... after some time, it just might speak volumes to you.

[donnajane]

Thanks again. Hubby and I mad a decision a week or so ago not to film bub any more and then watch it over to edit out "events/seiuzres" as we felt like it was making that our focus not our little man. If they alter we will film again. At the moment we are just going to enjoy our little boy with his "Special Quirks".
We have an appointment with his Nureo on 8th Dec when again all attention will be on his "quirks" but at the moment we are just loving spending time with him and also trying to introduce a few new foods into his very restricted diet.
Thanks
Donnajane

[RobinN]

You've made a great decision. They grow up far too quickly. I hope you will realize one day that his quirks are no longer a part of your vocabulary

[SnooGirl]

My husband discovered 18mths ago via MRI that he has a "growth" on his temporal lobe, either from a bump to the head (playing sport as a teen) or genetic defect (not developing properly in the womb) but there were many things considered (tumor etc) so at least it's just a scar more than anything. His neurologist is positive this causes some of his seizure activity. An MRI was not suggested to him until his late 30's, partially as he was fit free from ages 18-36. With little ones there are so many more risks, and my pediatrician says we have 'time' too. Am awaiting a consult with pediatric neurologist to see whats next!!

[donnajane]

The waiting is awful yet I understand often necessary. His Paed and GP were both totally anti him having an MRI until recently now they are the ones who are asking me when I see them if his Nureologist is organising an MRI! I don't want to have them miss something with my little man but I am also aware that I don't want to ovler analyze everything he does.