New to all of this

[Doodlebop'smom]

My name is Angie. My daughter Becca was recently (7months) diagnosed with Generalized Epilepsy. However looking back we believe she started her staring spells years ago. As she was constantly falling and breaking bones out of nowhere.
In Nov. my daughter was admitted into the EMU at Barrow's in Phoenix. We spent 6 days there doing the monitoring. And after the first night they were able to say she was having seizures (18 the first night). Sleep walking and night terrors seemed to be a precursor. We were told that the type of seizures she was having were harmful. And they began testing to see if there was any ill effect on her mental. Thank goodness she was fine. And actually very bright and ahead of the game.
We went home with no medications. It wasn't until a month later after she had a grandmal that they placed her on Keppra. Keppra was a nightmare for her (and us). My sweet child had changed into a nasty ill tempered child. Even tourmenting her baby sister for no reason. We did not see any change in her seizure activities. So after 5 weeks on the med she was taken off.
The next medication we tried was Lamictal. We did not notice any major side effects for the first couple of weeks. When she hit her max does 2 months later we noticed a start of a rash. I called the dr within minutes and she was slowly taken off the med. The rash however stuck around for 2 weeks. And this rash was so much harder to control. We deal with hives a lot around here. As she goes into Anaphylaxis once a year or so. But this was a whole different ball game of a rash. Nothing I did made her feel better. It made for a very terrible couple of weeks for her.
The next drug of coice was Zonisamide. We really thought this was going to be the med for her. We didn't see any side effects. Her seizures seemed to slowed down a bit. Until June 18th when she had what they called cluster seizures. I gave her the Clonazepam like the dr. had told me but they kept coming. We ended up in the ER. When they stopped we were sent home only to return 4 hours later with her broken out in a new rash and her body swelling. With her history of Anaphylaxis they didn't take any chances and gave her epinephrine. And watched her for hours. Come to find out she was allergic to the Clonazepam.
So as of yesterday we started her on Depakote and began looking into VNS. With the depakote we are already seeing some ill effects on her. She has only had 2 doses and is so sleepy. In and out of sleep all day. And her tummy has been hurting all day. Lots of burping and crying out. And currently waiting for another call from her dr.
I feel so helpless in all of this. And need some direction on how she is feeling. Sadly the only thing I can relate to is the hurt of watching her hurt. She is angry and frustrated at life right now. And I really cannot blame her. Any help in the med, VNS, or how to talk to her will be so appreciated. As we are just at a loss.
Thanks,
Angie

 

[Nakamova]

Hi Angie, welcome!

I'm sorry it's been a struggle to find a successful treatment for your daughter's seizure disorder. The meds are all quite powerful,, and the side effects can be especially difficult for kids. There's a specific forum here called at CWE called "The Nursery" that you might want to check out -- it has posts by parents.

There are a few folks here who have had VNS implants. They can help, but don't always get rid of the seizures altogether. Make sure you talk to your pediatric neurologist about what the track record is and what to expect.

Another area to explore is diet. The ketogenic diet is often tried with kids. Since you didn't mention it, I assume her docs ruled it out as an approach? For some people, there has been shown to be a connection between gluten intolerance and their seizures, and adopting a gluten-diet has mad a significant difference. You can search for info about these and other topics using the search tab at the top.

Best,
Nakamova

 

[Crystalblue]

Wow. I am so sorry to hear what you are going through. You sound like a very devoted mom. Your daughter is lucky to have you. I am in the process of being diagnosed with "some sort of temporal lobe seizures" which first presented like absence seizures "spacing out". I found it interesting that you mentioned the sleepwalking and night terrors. I had both right up through adulthood. They mysteriously stopped soon after I got married. I wish I had more helpful information for you, but I'm pretty new to this as well. Just wanted to say hi and send you some positive thoughts

 

[Doodlebop'smom]

Thanks so much for the welcome. I will have to check out the Nursery.
As far as the Ketogenic diet. I have asked for it. And was told it was not ideal with her type of epilepsy and her allergies. So it was nixed early on.
I am reeling from all the side effects I see her go throgh. We did speak with the dr. yesterday. And he told us the VNS was fairly less invasive and he said it would put her at a 50% of working. But that it was no silver bullet like everyone claims. But at this point we are willing to look into it.
Again Thank you!
Angie

 

[lindinig]

So sorry to hear what you and your daughter are going through. I have a 13 year old. He was diagnosed last year with absense epilepsy. He's on depakote and it works for the most part. He has a seizure or seizure cluster every 2-3 months. I think he was tired when we first put him on it. He's been on it pretty consistently for about 1 year by now, and it doesn't seem to bother him much anymore. I notice he's more forgetful and has memory lapses since we increased his dose about a month ago.

One thing we're doing is neurofeedback. My goal is to get him off meds and their crazy side-effects for good. I would definitely do some research on here about diet though. As I'm finding out, not all doctors know about all of the diets and how chemicals and additives affect the human body. There is a lot of information on the web. I'm starting with vitamin/mineral supplements first, to keep things as normal as possible. I've restricted some foods, and I generally don't buy things with chemicals or a lot of ingredients in them that I can't pronounce. I haven't made the leap to pure organic foods yet, but I have a strong feeling that will be next on my list.

 

[RobinN]

As far as the Ketogenic diet. I have asked for it. And was told it was not ideal with her type of epilepsy and her allergies. So it was nixed early on.
Angie

Welcome.

Red flag there for me.... epilepsy (a label for the symptoms of seizures) and allergies. Allergies are the immune system that is out of wack. Seizures can very well be related. Nutrition will most likely reduce or even eliminate the seizures. I personally don't recommend the ketogenic diet, though for some reason it seems to be the only one that has been researched (because they can control the patient to get the results for study).

My daughter is no longer on meds, and her seizures (tonic clonic) are being controlled by making nutritional changes.

I HIGHLY recommend that you investigate this on your own, before even considering a VNS. Doctors / Neurologists will look at you cross eyed when you bring up nutrition as being a possible trigger or cause. You will certainly have to be proactive in this course of action if you want to go this path.

From my research, allergies more than likely mean that the GI system is not healthy. The body is overwhelmed and can no longer cope, so now you have the symptoms. Not saying that it is why she is having seizures, but there is enough anecdotal evidence that proves this is a possibility.

I am glad that you found CWE and that you are stepping up to be an advocate for your sweet daughter.

My daughter was 14 when she had her first seizure. There were certain reasons I connected the dots and decided that nutrition was going to be our answer. However, we too tried four meds with similar results that you write about. Seizures and types increased while on meds. We now have been months since her last seizure and it is my belief that she is healing from within. She is now 18.

 

[Dutch mom]

Welcome!

My (special needs, will turn 11 next month) son has the Lennox Gastaut syndrome with generalised seizures. He's on the ketogenic diet for six years now, not seizure free but with significant seizure reduction compared to when he was on AEDs. He has tried 10 different meds in 3.5 years before starting the diet at age 5, not one of them worked, he still had 10-50 seizures a day and 90-99% epileptic activity on his EEG. On the diet his EEG improved with 70% and we managed to wean of all AEDs and benzo's!

I know many kids on the ketogenic diet (teens and kids with food allergies too, unless she's allergic to fats, the diet can work!) and several kids with a VNS (thanks to our Dutch parental forum), the succes% on the diet is far more better, about 40-50% of kids with different types of intractable, med resistant epilepsy do benift from the diet, some of them get 100% seizure free, others get med free. The VNS is always 'just' an add on to meds, succes in children differs. It takes about 3-6 months to try the keto diet, finetuning the VNS takes an operation and lot more time (years.) Most kids first do try the keto diet, if it doesn't work or the effect doesn't last, the NVS is a next option for some of them.

On www.matthewsfriends.org (and in particular the forum) you can learn a lot about the diet (and about the prejudices many doctors have about it.)

 

[Doodlebop'smom]

I would love to try the Keto diet!

Thank you all for your post. I met with so many doctors about the ketogentic diet. Even pushing for it. We as a family eat very healthy. A little background on the foods we eat as a family. We avoid carbs. Stay away from preservatives, food dyes, processed foods, and types of sugars. I have a digestive issue called Gastroperisis. Which limits a lot of what I can digest. I do not take any form of medication to help with it. I have turned to controling what I eat. So the whole house eats the way I do. We have spoken to so many doctors. They said we already eat very similar to the keto diet. We have been eating this way since 2005. And that clearly there has been no source of help from her "normal" diet. Of course I have only gotten minimal information on the keto. As so many of the WebPages contradicts the others.
Here is a little history on her allergies. In 2007 she went into anaphylaxis out of nowhere after a family hike. And continued to go into anaphylaxis all summer. We went through all the test. And they were not able to find her trigger. Which they said was not uncommon. We started to log all of her episodes. And came to the conclusion that it seemed to happen anytime we were outside. Which was absolutely no help! As they already tested her for pollen and dust. One day I asked the doctor if exercise could cause the problems she was facing. As every episode followed some kind of major activity. He did tell me there was a condition called Exercise Induced Anaphylaxis. He set us up with a specialist in Denver. She was tested and they found her heart rate triggered the release of histamines. So it very much is a autoimmune condition. The killer in all of this is when she seizes there are times she swells and breaks out in hives. That is the hardest part. Keeping her airway open following the seizures.
As of last month we found she was allergic to the clonzepam. Which is the first med we have found to affect her allergies.
So as of right now we are at a loss. The depakote has not been any help. She was up all night having tonic clonic and absent seizures. The doctor said we have tried all of the big gun meds. However he wants us to keep the depakote going. But as of this morning she has puked and cannot stand up straight. Constantly telling me her body hurts. And her tummy is bloated. My heart just breaks for her. And I have no idea how she is going to start school on the fourth. She just can't function like this.

 

[RobinN]

My son has had periods of allergies, and he also has an auto immune issue called vitiligo. I did a Google search with allergies / probiotics, and read that it most likely would be useful. I asked him to give it a try. He is a Marine, so I had to send him off with the bottle with the hope that he would follow through. He did for quite a few months. I noticed when he came home, that the new kitties no longer seemed to bother him. He also on his last visit told me that the vitiligo was gone. I have been elated that something so simple could have helped him with this disorder.

I have been reading more and more on it, and I only can suggest that you run it past your doctor. The probiotics that I bought were over the counter. I know there are fermented foods that can be helpful too, but I wanted to try the supplements first. I know this can't hurt you, and haven't found it to be in conflict with any medications. It might be worth a try.

I am now taking them myself, since I was a victim of a doctor that had me on antibiotics for a year when I was a teenager. I know I need to improve the balance in my GI system.

Just a thought, I wanted to share.

 

[Doodlebop'smom]

I take probiotics. But never thought to start her on them. What brand do you use. I know it helps me leaps and bounds.
Thank you!

 

[RobinN]

I have only used Natren.
Rebecca's nutritionist did prescribe some, but I have yet to fill the prescription, because we still had the others to finish. I have yet to compare the % and types of bacteria in each one. I have been pleased with the Natren for myself, but I am not the best with making sure Rebecca takes it daily. I know my son took it for about 3-4 months as I bought the bottles for him. To know he has had remission with his vitiligo is a great recommendation to me.

It is my understanding that our children are not getting the proper enzymes in their foods to help with breaking down the food for proper absorption. In addition we give more and more antibiotiocs over their childhood without replenishing the good. I know there are other ways to kill good bacteria, such as the anti-bacterial soaps, wipes, and gels.

I think the Natren website has information that is helpful. I am sure they would answer any questions you have regarding introducing probiotics to a minor. Though I don't believe there is an upper limit.

 

[sandi]

health

Their is a very real relationship between gut health and immune functions.
It isn't always clear cut like glutens. Some of it is inflammatory to the brain
and other areas of the body. Has your daughter been nutritionally tested?
Not allergies, but vitamins and minerals.With the info you sighted I would be want that done. Sometimes a balance is needed such as potassium or magnesium .
Even if there in the normal range sometimes a good nutritionist might tweak it better.
I am so sorry you have to go through this.

 

[sandi]

I also think I would start looking for specific childhood syndromes possible taking her to a university where some specialists might look at the whole picture.