Worried Dad Here

[T's Dad]

Hey all --

I'm the father of an excellent little 15-month old daughter. She has been having seizures since she was nine months, and in that time has had 10 big seizures (grand mal type) and countless little absence seizes (my wife and I call them "space outs"). Her development to date is excellent, she is meeting all of her milestones, and is even quite ahead on some (such as verbal). She is smiley and energetic, playful, engaging and fun. So I guess all things considered, so far so good. But her big seizures are usually static, so I worry a lot about harm from those, and our neurologist has thrown around a lot of possibilities that feel pretty scary to me right now (Rett, Dravet's, etc.). When I read up on those, our daughter doesn't seem to fit the profiles, but nonetheless I'm constantly on the lookout for possible regression.

Anyway, just thought I'd get involved here for a little support and to learn from others' experiences. Thanks.

T's Dad

[skillefer]

Hi T's Dad! Welcome to the forum. There are a lot of friendly people here, so feel free to ask questions and vent. My first suggestion would be to read the info in the Epilepsy 101 posting. It gives a lot of good information. Again, welcome.

[RobinN]

Hi Dad.. I am a Mom of an excellent 16 yr old that met most of her milestones. She did talk later than most, but now I have to remind myself that I wanted her to talk.

Are you happy with your neurologist team? I am still looking for answers. We are in our second year of this disorder, and CWE has been an enormous help in finding me alternatives to consider. I hope you find some interesting reading here too.

Welcome.

[speber]

You are among friends!

[Bernard]

Hi T's Dad, welcome to the forum.

Pediatric cases are, I think, a bit trickier than adolescent/adult cases. With adults, there are more alternative treatment options like diet, CBT, EEG neurofeedback, etc.

Make yourself at home here.

per skillefer's suggestion: epilepsy 101

[T's Dad]

Thanks all. I have just perused the helpful 101 materials.

Are you happy with your neurologist team?

We are pretty happy with the team we're seeing. After just a bit of time with the general neurologist at our local hospital, we knew we needed to find some folks that specialized in pediatric neurology. Thankfully, we live only a couple of hours drive away (the length of a good nap, if we're lucky!) from an excellent department, with a very deep bench on infant / toddler neurological and epilepsy issues. They are pretty responsive, and seem to be working very hard to help her our daughter out. Given the EEGs that she turns in, they seem to be very startled that she shows no signs of delay, and so I get the feeling they are interested and invested in her case.

I agree with you, Bernard, that pediatric cases are tough. In addition to the reasons you mention, it is difficult that she can't really tell us how she is feeling very directly.

Dad

[RobinN]

I am sure if you have a team that is on the ball, that they have tested your little one for this, however I found this to be very interesting so I have bumped up this thread again.

New Kid on the block!

[brain]

T's dad!

Glad to have you here at CWE!
Feel free to browse around and
learn!

[T's Dad]

I am sure if you have a team that is on the ball, that they have tested your little one for this, however I found this to be very interesting so I have bumped up this thread again.

Thanks for the lead. I'll go back through the files, as I do not recall whether she was specifically tested for this (soooo many tests so far). Interestingly, our neurologist does have us giving her two doses of B6 every day. Her primary anti-seizure med is Keppra, and we are pushing into some pretty high doses now to try to get the seizures under control. The neurologist explained that Keppra in little ones can cause fussiness, irritability, and mood swings, and that the B6 should help to moderate those effects. At any rate, between the Keppra and the B6, she's still got a fair amount of seizure activity going on.

Later this week we are going to consult with an ayurvedic doctor that has helped both my wife and me with various issues over the years. He has a reputation as an excellent diagnostician, and really looks at the body as a whole set of closely interrelated systems. He generally focuses on diet and supplements to address problems. For no particular reason, I have a suspicion that he'll talk to us about magnesium.

Our daughter is chronically constipated, despite many conventional attemts to address (liquids, prunes, enulose syrup, warm baths and massage, etc., etc.). I have come across a few things on the internet suggesting a link between poor digestion (especially constipation) and seizures. Not surprisingly, our western doctors have been generally dismissive about this, but I am confident that this eastern ayurvedic doctor will have plenty to say on the subject. Even if it has no link to the seizures, it would be great if he could help us resolve the constipation. (We currently suspect it is a wheat / carbohydrate issue.)

T's Dad

[RobinN]

Our daughter is chronically constipated, despite many conventional attemts to address (liquids, prunes, enulose syrup, warm baths and massage, etc., etc.). I have come across a few things on the internet suggesting a link between poor digestion (especially constipation) and seizures. Not surprisingly, our western doctors have been generally dismissive about this,

I am dealing with the exact same thing right at this moment. In fact... I took her to a traditional GI doc on Monday that dismissed this theory. Actually, he said he had never heard of this, so I am pulling together all that I can on the subject to show him. Do you remember where you have seen this info?

There is info on the fact that it can trigger seizures. He doesn't understand the idea of seizure threshold either. I am certainly tired of informing doctors of the latest information. He did say to continue our method of increasing the magnesium. It has helped Rebecca, but not entirely, so I might be upping the dose even more.

I am nervous about this doctor though, because it is his feeling that if you only go once a week, and you are not in any pain, that that is okay. Something wrong with that belief.

Yes the B6 is suppose to complement Keppra I believe. I look forward to reading your posts after your appt with the ayurvedic doctor. I am quite interested in going this route, as traditional doctors have steered us in the wrong direction too many times. Problem is... the connection to the insurance.

[Stacy]

Hi T's Dad!

Welcome. I stay overbooked, so I apologise to everyone for the inifrequent responses. I do read most of the new postings, just not as soon as I'd like. I read something just yesterday that may be of interest to everyone. Maybe it's not B-6 alone helping fix the problem. There was a study done ... oh I'll just quote it. (more after, so read the bottom)

"PARKINSON'S AND RED MEAT CONNECTION (I know this is Epilepsy,but there are several similarities)... Source: Cicero Galli Colmbra, MD, PhD, head, department of neurology and neurosurgery, Federal University of Sao Paulo, Brazil.

Parkinson's symptoms may be reduced by eliminating red meat and taking large doses of vitamin B-2 (ribolflavin).

BACKGROUND; Researchers hypothesized that excessive red meat consumption may may trigger Parkinson's in patients who absorb riboflavin poorly. Ribolflavin deficiency my be linked to the brain degeneration found in Parkinson's.

NEW FINDING: Nineteen advanced Parkinson's patients were put on a diet that did not contain red meat. They were given 30 mg of B-2 every eight hours in addition to their usual medications. Their riboflavin levels, which were low despite adequate dietary intake, normalized after one month. After six months on the reqimen, the average motor capacity increased from 44% to 71%"

STACY AGAIN; Knowing that Parkinson's is generally a degenerative disease, is it possible that your 15 month old sweetie pie was not born with the ability to digest / absorb certain minerals properly???

I'd also like to tell you not to worry about the brain scans and tests too much. I had a brain scan done in the past and the doctor sat me down telling me, "I don't know how you walk and chew gum at the same time! Your brain is a disaster!".... really. Ask Bern, he was there.

[Bernard]

... I had a brain scan done in the past and the doctor sat me down telling me, "I don't know how you walk and chew gum at the same time! Your brain is a disaster!".... really. Ask Bern, he was there.

insert inappropriate joke about being brain dead here....

[T's Dad]

so I am pulling together all that I can on the subject to show him. Do you remember where you have seen this info?

The best example I've found so far is in an article discussing something called the "Specific Carbohydrate Diet." Here is an excerpt from the article that got me really excited to explore this further:

"In many cases, parents of children with neurological issues such as seizure disorders, autism, and cerebral palsy, have often reported that their children frequently experience symptoms of chronic constipation, periods of diarrhea, and abdominal pain. In some cases, the children have a limited ability to verbally express their pain and discomfort."

"Focused on more obvious cognitive or motor skill issues, many parents and physicians may not make the connection between their child's neurological disorder with their gastrointestinal symptoms, or vice versa. However more and more parents and clinicians are beginning to connect these two nervous systems, the Central Nervous System and the Enteric Nervous system, and are finding that correcting digestive imbalances can lead to significant overall improvement in their child's mental and physical health and in several cases reduce or even eliminate seizure activity."

I think the Specific Carbohydrate Diet was designed for intestinal issues, like crohn's and celiac, but the book described in the article also discusses neurological benefits (though not quite as directly as the article).

Because I am such a new member the forum software is not letting me provide a link to this article. If you want, please let me know if there is a way I can post it or send it. Thanks.

T's Dad

[Bernard]

Just post it (a link) with some spaces interspersed. A moderator will fix it after reviewing it. Sorry, but this is done for a reason.

[T's Dad]

I absolutely understand.

Here is the link:

http://www.cnsfoundation.org/site/Ne...rticle&id=5319

Thanks.

[RobinN]

Yes I know all about the SCD diet, and Stan Kurtz's diet for neurological and chronic illness. I buy into this idea, and the fact that it is helping thousands of children. Problem is, to get the traditional doctors.. the ones tied to my insurance to buy this idea, it has to be referenced in a medical article. They do not want a reference that parents have video of children speaking, observing, connecting. It is hard to convince them otherwise.

[Bernard]

How's this for timeliness? Released today:

The prevalence of headache is higher in people with gastrointestinal (GI) symptoms such as nausea, acid reflux, diarrhea, and constipation, than in people who don't have these bothersome symptoms, new research indicates. ...

Headache common in people with GI trouble

[RobinN]

Your a gem Bernard.. .Thanks a bunch.
Does the medical profession respect Reuters Health?

After reading this, it reminded me of a time when on doctor would give me something for nausea
This always helped my headache immensely.