New here, son with Doose syndrome

[Karen Nichols]

Hi,

I have posted once or twice before but had not formally introduced myself. My son, Aidan, age 6, has Doose syndrome and we have been battling the beast for 2 years now with no help ( and lots of aggravation ) from AEDs. He has tried 10, I think.

We are now doing neurofeedback and some dietary changes, but are not where we want to be. We saw some early gains in sz. control and cognition with the NF ( neurofeedback ) but I am trying to assess whether it is worth continuing. We have done 27 sessions and the first half of that things were going well; then things unravelled a bit, sz. increased, etc. We want to give it a full chance, but don't want to be throwing away $$ either.

He is also in the keto diet, which has shown some help but not our miracle. I think the meds may be interfering with the diet's ability to work, but we are a bit nervous about dropping med levels, as Aidan spent 4 of the first 5 months of this year hospitalized, in a med-induced coma, etc. A nightmare and we are nervous about landing anywhere near a hospital again anytime soon.

I am also interested in others experiences making connections between seizures and allergies ( food and environmental) as well as seizures and things like yeast overgrowth in the intestines. Maybe also triggers such as MSG, etc.

Ok, enough of an introduction. I have some of Bernard and Robyn's experiences and they give me hope.....gotta have hope.

Thanks,

karen
mother to Aidan, whose had sz. now for 1.5 years.

 

[Bernard]

Hi Karen, welcome to the forum. :hello:

There can definitely be a point of diminishing returns with neurofeedback just as there can with any exercise regimen. We had to do in the neighborhood of 50 sessions before Stacy started realizing dramatic results, but everyone is going to be different so you can't really guage your situation by that.

There are a few other members here who also have children diagnosed with Doose:

http://www.coping-with-epilepsy.com/forums/tags/doose syndrome.html

 

[Endless]

Hi, Karen,

Welcome to CWE! I don't have any experience with Doose. I just wanted to say hello and let you know how glad I am that you are here.

 

[Meetz1064]

Hi Karen,

how are you? It's nice to meet you!

While I don't have a child with Doose, and am the E patient myself, I do have a suggestion for you.

One of the other mods here, DutchMom, is the mother of a Lennox Gastaut E syndrome son. She's also a mod on another E forum, and knows of quite a few resources that may be helpful to you. Why don't you send her a PM? Another friend who is in a similar boat is always a good thing.......

 

[Nakamova]

Hi karen, welcome!

Your interests -- diet, neurofeedback, non-meds approaches in general -- are hot topics here. There is definitely a well-known link between celiac disease and epilepsy, and some of the experiences here point to other nutrition playing a very important role. I hope you share what you learn, and feel free to ask questions.

Best,
Nakamova

 

[Dutch mom]

Hello Karen,

My son has Lennox Gastaut syndrome and has had a similair history of increasing and aggravation of all kinds of seizures, hundreds of them, all day long, and a 99% disturbed EEG.
We've also tried >10 AEDs and benzo's but not one off all combinations did help.
We've started the ketogenic diet 6,5 years ago and he still is on the diet now, still on ratio 4:1 (classical/LCT) Weaning him of the diet seems not possible, as soon as we lower the ratio, we see lower ketosis and lots of seizures again. The diet seems to be the only thing that helps.
He reacted well on the diet in week 1 and in the first year we've weaned of all AEDs and benzo's. As soon as he got med free, we got stable ketosis and long periods of seizure control with a >70% improved EEG.

Do you know this forum? I guess you do, since you are dealing with Doose for 2 years now, but for sure: http://health.groups.yahoo.com/group/doosesyndrome/

www.matthewsfriends.org is very usefull to exchange information and experiences about finetuning the diet and the interactions between the diet and several AEDs.
There are Doose parents on the Matthews Friends forum too http://forum.matthewsfriends.org/index.php?app=core&module=global&section=register

 

[Eric]

I have been dealing with Ohtahara-West-Lennox-Gastaut now for 12 years with my son (he still has over 100 individual seizures a day) and have shared in the experiences of dozens of families. What I have to offer is that just about every neurologist has a different approach; different dosages, schedule for lowering or increasing dosage, combinations, length of time before changing meds.

So what can be learned from this is that even if you've tried 10 AED's that doesn't mean under different circumstancesor in a different combination, it won't have effect.
Also consider that there are elements affecting absorption. Keppra for example has a half life of 6-8 hours, meaning that after that time half of the medicine has been used up. With 24 hrs in a day this means that giving the daily dosage of Keppra in three doses makes more sense, also to counteract the drowsiness associated with it YET the majority of neurologists prescribing that I am aware of say to take it two times a day.
Phlegm accumulation in the stomach, a very common problem (does your boy have periodic vomiting?) can interfere with absorption although you would be challanged to find a neurologist to concur on that issure.

Sorry I don't have concrete "here do this" info for you at this moment but my point is consider some of these factors. Also, with the ketogenic diet compliance is a huge factor which is always made so much easier if it's given through a g-tube. Does your boy have a g-tube?