Epilepsy Foundation

My daughter, Hailey, has been diagnosed with "Intractable Seizure D/O, NOS" for a good many years now (since 1st szr @ 4 months old (15 years ago)). Doctors have been fumbling around w/meds, Keto diet, VNS, the list goes on ad infinitim, with no real successes. Her diagnosis has changed a few times ranging from the vague diagnosis we have now, to Lennox-Gastaut, and back again.

 

Doc is now pushing for brain surgery, with us closely behind...hoping, maybe this will offer her some relief. Over last year of countless changes: new doc, diagnostic testing/in-pt. and out, seeming new szr types again, new meds, nothing really has changed. No very clear L/R hemisphere focal points though primary origin "appears to be" largely right frontal/temporal lobe. She still has L hemisphere involvement and is not any more controlled than previous years. So I am wondering:

 

Why brain surgery? For fun?!?!

 

Also would love input on Dravet Syndrome. Hailey seems to meet the criteria perfectly yet this has never been mentioned. Anyone know if there's a way to rule out (or in) Dravet Syndrome??

 

Back to square one it seems. Thanks to all and high-fives from Hay Hay!!

 

God Bless

 

Alexa

Views: 437

Replies to This Discussion

Alexa,
I too have a "Haley" who is now 10 and has the diagnosis of Dravet syndrome. Her first seizure was at 5 months of age. Dravet syndrome can be a clinical diagnosis, but there is DNA testing as well. You want to test for a mutation in the SCN1A gene. This can be done through Athena Labs or Transgenomics.

Haley also was thought to have LGS. The classic Dravet cases is seizures in the first year of life brought on by fever. Status epilepticus is common with this syndrome as well. Kids will develop "normally"up until age 2 and then regress or plateau. The seizures change over time. Some of the drugs that have an adverse affect on Dravet kids are Lamictal, Dilantin, Tegretol, and even Phenobarbital. I know our Haley would have increased seizures with the increase in the dosage of Lamictal.

If your daughter does have Dravet syndrome then surgery is not an option because it is a DNA issue and it is in every cell of her body.

The IDEA League is an organization of parents that have a lot of support for Dravet syndrome. You can go to their website, www.idea-league.org for more information. You can also read about my Haley at www.haleyismyhero.com. If I can be of any further help, you can contact me through her website. Or post here.

Thinking of you,
Lisa
Alexa,,
After trying all kinds of medications to stop my grand mal seziures, I have been thinking of brain surgery but I keep asking myself,,, the same questions you are asking now,,,
1. Why brain surgery"?
2. How could one be sure the brian surgery is going to cure this menace?"
3. Is my brian surgery going to have unintended effects?
4. What if the brian surgery failed,,, then,,, "Back to square one",,, all over again.

Alexa,
Some times I wonder if it's better to live with "KNOWN" failed medications than "UNKNOWN" consquences of failed "brian Surgery". Sadly,,, there ain't much options.
In any case,,, I wish you all the best.
MAY THE LORD HEAL YOUR FAMILY!!!
Hi Lisa,
Wow!! Our girls seem to have nearly every symptom in common you mentioned as well as trials with those very meds, Lmictal in particular, and a seeming allergic (dyskentetic movement d/o lasting 36 hrs.) reaction to first (and only) dose of IV Dilantin a few months ago while in status. Hailey has been in status at least 20 times since 16 months old (she's nearly 15 years old now). The status appears to be increasing in frequency as well without obvious exacerbating factors ie: fever, acute illnesses.

Her seizures seem to respond to med changes initially, then, as if a stubborn virus, they seem to adjust or morph and keep on keeping on! She too progressed normally until about 2 years old, and has plateaued w very minimal progress over the years. I haven't noticed loss of skills, just not much progress in terms of aquiring new skills.

Thank you so much for the gentic/DNA testing info. I will definitely go that route before consenting to brain surgery: in my gut it doesn't make sense and now I know why.

Thank you again Lisa,

Alexa

Lisa Oelmann Smith said:
Alexa,
I too have a "Haley" who is now 10 and has the diagnosis of Dravet syndrome. Her first seizure was at 5 months of age. Dravet syndrome can be a clinical diagnosis, but there is DNA testing as well. You want to test for a mutation in the SCN1A gene. This can be done through Athena Labs or Transgenomics.

Haley also was thought to have LGS. The classic Dravet cases is seizures in the first year of life brought on by fever. Status epilepticus is common with this syndrome as well. Kids will develop "normally"up until age 2 and then regress or plateau. The seizures change over time. Some of the drugs that have an adverse affect on Dravet kids are Lamictal, Dilantin, Tegretol, and even Phenobarbital. I know our Haley would have increased seizures with the increase in the dosage of Lamictal.

If your daughter does have Dravet syndrome then surgery is not an option because it is a DNA issue and it is in every cell of her body.

The IDEA League is an organization of parents that have a lot of support for Dravet syndrome. You can go to their website, www.idea-league.org for more information. You can also read about my Haley at www.haleyismyhero.com. If I can be of any further help, you can contact me through her website. Or post here.

Thinking of you,
Lisa
Alexa,
I hope you get some answers. My daughter did not get diagnosed until she was seven. There are so many stories similar to ours and when you find someone who has experienced something like you have gone through it is so comforting. Are you in California? I think I saw that somewhere. Let me know where and I can find a parent or two or three that are out there.

The status seizures are so scary. Haley has not had a status seizure in over two years. We are very thankful for that. The combination of drugs that seem to work best with our kids is Depakote or Topomax along with Clobazam (Frisium) & Stiripentol. The last two are not FDA approved drugs. Clobazam is on it's way and should be approved by this time next year. Stiripentol is a harder battle; however, I do know that it has been covered by Medicaid in 11 states as an exception to policy.

If you want to talk privately, go ahead and email me at haleyismyhero@gmail.com

Hugs to you!!!
Hi Lisa,
Yes we are in California. We've been to UC Davis/MIND Institute, UC SF Peds Neuro, Childrens' in Oakland and now are with Sutter Neuroscience in Sacramento.

Thus far, this doc is most impressive. However, since Dravet Syndrome so extraordinarily and perfectly describes Hailey's life, I'm now wondering about his competence! Why would he (or any doc thus far) not notice the symptoms? Or at the very least, test her!!!! It's maddening really!

Of course he's out today, so will be on his heels first thing tomorrow to get testing underway.

I cannot thank you enough Lisa. While a diagnosis of Dravet may not be the "yippee" kind, I certainly would prefer this to latest plan which is "Uhm, brain surgery I suppose would help reduce seizures." So thank you for sharing your story and experience.

God bless all.

Alexa (Hay Hay's Mom)

Lisa Oelmann Smith said:
Alexa,
I hope you get some answers. My daughter did not get diagnosed until she was seven. There are so many stories similar to ours and when you find someone who has experienced something like you have gone through it is so comforting. Are you in California? I think I saw that somewhere. Let me know where and I can find a parent or two or three that are out there.

The status seizures are so scary. Haley has not had a status seizure in over two years. We are very thankful for that. The combination of drugs that seem to work best with our kids is Depakote or Topomax along with Clobazam (Frisium) & Stiripentol. The last two are not FDA approved drugs. Clobazam is on it's way and should be approved by this time next year. Stiripentol is a harder battle; however, I do know that it has been covered by Medicaid in 11 states as an exception to policy.

If you want to talk privately, go ahead and email me at haleyismyhero@gmail.com

Hugs to you!!!
Lisa,

Thank you so much for taking the time to respond and explain Dravet Syndrome. Since last post here, I visited and signed up as a member on your Haley's site. I was/am astounded at the similiarities in our girls. Watching the video was literally like watching my daughter, your journey was like reading our life story: almost scary how much so.

I have since contacted our neuro and requested the test you explained. I'm still completely at a loss as to why this never crossed his mind? He is a very well respected peds neuro, neurosurgeon and epileptologist. If I found this information, through you (thank God), why did he not consider Dravet? Cautionary word to others to never stop speaking, searching, praying for guidance. God bless you for shining light on a dimly lit path.

Today we're in a holding pattern awaiting a "packet" from Athena. So odd to pray for an answer then fear the result? I take solace in knowing I have exhausted every effort to help my Hay Hay. She continues to laugh every minute she's able, joy ride in her new wheelchair (while wearing her tiara!) and remind every soul she meets that today is the best day ever!!

I cannot thank you enough for reaching out to us. Perhaps some day our paths will cross. May God bless you and your family until then.

Alexa

Lisa Oelmann Smith said:
Alexa,
I too have a "Haley" who is now 10 and has the diagnosis of Dravet syndrome. Her first seizure was at 5 months of age. Dravet syndrome can be a clinical diagnosis, but there is DNA testing as well. You want to test for a mutation in the SCN1A gene. This can be done through Athena Labs or Transgenomics.

Haley also was thought to have LGS. The classic Dravet cases is seizures in the first year of life brought on by fever. Status epilepticus is common with this syndrome as well. Kids will develop "normally"up until age 2 and then regress or plateau. The seizures change over time. Some of the drugs that have an adverse affect on Dravet kids are Lamictal, Dilantin, Tegretol, and even Phenobarbital. I know our Haley would have increased seizures with the increase in the dosage of Lamictal.

If your daughter does have Dravet syndrome then surgery is not an option because it is a DNA issue and it is in every cell of her body.

The IDEA League is an organization of parents that have a lot of support for Dravet syndrome. You can go to their website, www.idea-league.org for more information. You can also read about my Haley at www.haleyismyhero.com. If I can be of any further help, you can contact me through her website. Or post here.

Thinking of you,
Lisa
Alexa,That's interesting that you mentioned the movement disorder with the i.v. Dilantin.That happened to my daughter Ariel.She was in PICU last year seizing non stop and they gave her a load of Dilantin and she started flailing kicking biting and doing this really weird movement disorder.The following day she was a bit better but started seizing again and so they gave her another load of Dilantin.This time it was almost a week before that stuff was out of her system.I kept telling them what did you do to my daughter? They even tried to pull the psychological stuff with it.They pinched her poked her stuck her feet with poins and she was totally unresponsive.Now they have it listed as a severe med allergy.Unfortunately one doc saw the video with no EEG change,which she was no longer having seizures just this bizarre movement thing and labeled her with pseudo seizures.Since then we have to prove everything and fight tooth and nail to get her help.I would definately want SCN1A testing done before doing any brain surgeries.To rule out Dravet.Also Lennox Gastaut can cause intractable epilepsy and progressive mental deterioration.My friends daughter has that.She's had brain surgery as well a Corpus done.Unfortunatley the seizures found a new pathway and have returned even with a full resection.I pray you get some answers it's all very frustrating at times.We have 3 kiddo's with E two Intractable and those tow have had very serious cognitive decline and no one can tell us why.I'll be praying for you.God bless,Linn
Hey Alexa! I saw that you signed up on Haley's site and I spoke to a Dravet mom who is a close friend who runs the IDEA League membership and said you have signed up there too! It gives me mixed emotions to hear of another child diagnosed with Dravet. I am thankful that Haley's story might help you with a diagnosis, but saddened to hear you are getting this diagnosis, especially so late. I know we will meet one day. Dravet families have a way of getting together and reaching out to each other. It is nice to be in the presence of their company because you can feel somewhat "normal". I will talk to you soon. Until then you and your precious daughter, Hailey will be in my prayers!!! HUGS!!

Hay Hay's Mom said:
Lisa,

Thank you so much for taking the time to respond and explain Dravet Syndrome. Since last post here, I visited and signed up as a member on your Haley's site. I was/am astounded at the similiarities in our girls. Watching the video was literally like watching my daughter, your journey was like reading our life story: almost scary how much so.

I have since contacted our neuro and requested the test you explained. I'm still completely at a loss as to why this never crossed his mind? He is a very well respected peds neuro, neurosurgeon and epileptologist. If I found this information, through you (thank God), why did he not consider Dravet? Cautionary word to others to never stop speaking, searching, praying for guidance. God bless you for shining light on a dimly lit path.

Today we're in a holding pattern awaiting a "packet" from Athena. So odd to pray for an answer then fear the result? I take solace in knowing I have exhausted every effort to help my Hay Hay. She continues to laugh every minute she's able, joy ride in her new wheelchair (while wearing her tiara!) and remind every soul she meets that today is the best day ever!!

I cannot thank you enough for reaching out to us. Perhaps some day our paths will cross. May God bless you and your family until then.

Alexa

Lisa Oelmann Smith said:
Alexa,
I too have a "Haley" who is now 10 and has the diagnosis of Dravet syndrome. Her first seizure was at 5 months of age. Dravet syndrome can be a clinical diagnosis, but there is DNA testing as well. You want to test for a mutation in the SCN1A gene. This can be done through Athena Labs or Transgenomics.

Haley also was thought to have LGS. The classic Dravet cases is seizures in the first year of life brought on by fever. Status epilepticus is common with this syndrome as well. Kids will develop "normally"up until age 2 and then regress or plateau. The seizures change over time. Some of the drugs that have an adverse affect on Dravet kids are Lamictal, Dilantin, Tegretol, and even Phenobarbital. I know our Haley would have increased seizures with the increase in the dosage of Lamictal.

If your daughter does have Dravet syndrome then surgery is not an option because it is a DNA issue and it is in every cell of her body.

The IDEA League is an organization of parents that have a lot of support for Dravet syndrome. You can go to their website, www.idea-league.org for more information. You can also read about my Haley at www.haleyismyhero.com. If I can be of any further help, you can contact me through her website. Or post here.

Thinking of you,
Lisa

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