Johns Hopkins Anyone? Lamictal Anyone?

[kathleenandjoe]

Anyone been to the Johns Hopkins Hospital - specifically their Epiliepsy Center (or any of the neurologists on staff at the E center there for that matter)?

We are looking for a good second opinion place in the DC area. We love Children's National Medical Center thus far. . .but just feel that a second opinion is necessary before making any sort of epilepsy surgery decision we may face in the future. CNMC has reccommended surgery if this and next med do not work. We want to be sure to do the right thing.

OR - anyone know of an epileptologist in the DC area?


Also - Becca has been going to bed at same time. . . sometimes even a bit later . . . but is waking for the day at between 4-5 am. This since Lamictal has been only med (last month). No naps or other major changes. Anyone experience this?

Thanks,
Kathleen

[mpalmer118]

My dd has trouble with sleep anyway, but it was worse on Lamictal. There is a thread on the Epilepsy board about lamictal/sleep, it seems to be common side effect. http://brain.hastypastry.net/forums/showthread.php?t=7972

I don't know about neurologists in that area, but Rachel's current neurologist studied at John Hopkins and we love him!

Good luck with the Lamictal. It did not work for Rachel but if it works for your little one it will be worth the lost sleep. :)

[sunandmoon]

We went there and saw John Freeman, the author of the Epilepsy book for Kids, don't remember the title. He was excellent. Unfortunately our child had a very unusual issue and they couldn't really help him, so we switched to Kennedy Krieger. I loved the neurologists there at KKI but if you're looking at surgery I would go to Hopkins Epilepsy Center.

[Mom2Ava]

Ava had sleep problems for a time on Lamictal as well.
We used melatonin to help w/ that.

Don't have much insight in re to Hopkins excpet they have a few docs there that do a lot with the diets. Keto and mod Atkins for epilepsy.
Dr Kossoff @ Hopkins is having pretty good success with the modified Atkins.
Let me know if you want more info about MAD or Dr Kossoff.

[taratwyatt]

Kathleen -

Who does Rebecca see at DC Children's? Aidan sees Dr. Pearl and we absolutely love him and he's an epileptologist. Our initial neurologist was at Walter Reed, but they sent us out and now all of Aidan's care is done through Children's. Before going to Children's I often thought about getting a 2nd opinion through Hopkin's, but I wasn't happy when we took my oldest daughter there for her onset of seizures and we had a horrible time trying to get follow-up appointments.

As for Lamictal, Aidan was only on it for 2 weeks before he broke out in a horrible rash and we had to discontinue it. While he was on it he actually slept better than normal.

Good Luck,

Tara & Aidan

[langansmom]

We have always had sleep problems but they are the worst on lamictal. I think it's a common side effect. Ugh.

I am pretty sure that Jake goes to Hopkins- he was on keto there and lives in that area. Hopefully his mom will be around soon to answer questions for you.

(((hugs)))

[lorilou]

Count Noah in as another party animal on Lamictal. The child could not sleep - it was horrible. Then the lack of sleep led to more seizures..

He's still on Lamictal but we're weaning off -- he's down to 50mg twice per day. He's now on Keppra and doing well (knock on wood!)

We also tried Melatonin which helped to some extent but not enough.

[kathleenandjoe]

Thanks everyone! I think I will call the neuro this week and ask about melatonin for sleep help. It's getting a bit ridiculous, really. She has swim lessons on Sunday mornings and she was up at 2am putting on a swimsuit. I am not really sure she ever went back to sleep for real (she fakes it quite well I have learned).

As if I do not loose enough sleep checking video monitor and going in to look for seizure activity. . . . ugh.

Tara - we see Gaillard at Children's National. We like him very much . . . but like I said. . . this is such a huge thing that we feel a second opinion is necessary.

We are military and actually prefer not to go to walter reed. So we avoided that altogether. I have learned to work tricare insurance pretty well after 5.5 years. We went straight to Children's as per other NS and neurologist reccommendations.

I do not foresee a problem getting a referral to Johns Hopkins. . . and it is within a drive. . . and I have heard impressive things about the staff there when it comes to epilepsy surgery. .. heck just the website for their epilepsy center is good. . .. but I just have not meant many who have avtually been patients there.

Thanks for the input and experience sharing.

[lacyndarella]

I have heard of melatonin increasing seizure activity in children...from my darling friend Liz, who has much more experience than I do...I did find the following..."Preliminary research suggests that melatonin reduces the number of seizures in certain animal species and may reduce seizures in people with epilepsy. However, not all experts agree with these findings. In fact, concern has been raised that melatonin (1 to 5 mg per day) may actually induce seizures, particularly in children with neurologic disorders. Given that the research is in a very premature stage, some experts suggest that melatonin should be administered by healthcare providers to only a select group of people who suffer from seizures that cannot be controlled by any other type of therapy." This quote if found on the following site...http://www.umm.edu/altmed/ConsSupplements/Melatonincs.html
You might want to talk to your child's pediatric neurosurgeon prior to starting melatonin because of the hydrocephalus.

Lacy

[lacyndarella]

Of course you can also find sites that state that it does not induce seizures...and many people here seem to have used it with good results...just wanted to throw the possibility out there for consideration.

Lacy

[langansmom]

There are also small studies showing that melatonin assists in seizure control.

Our neuro said it was fine to try melatonin but to keep an eye out for any change in seizure patterns. At one point, I thought it was causing more seizures so we stopped using it. Seizures got worse after we stopped so we started it again. For Langan, we really saw no correlation other than the fact that sleep deprivation led to more seizures so we were better off with the melatonin than without it when she was in all night party mode. But it is definitely something to keep an eye on.

[kathleenandjoe]

Gosh . . . thanks for the info.

I am putting a call into the neuro about it - I would not administer it without his reccommendation anyway. I actually thought it was perscription only until today.

Maybe he knows more about what kids melatonin works for and which it is likely to be bad for. Though the lack of sleep concerns me and is a pain. .. it does not seem to be effecting seizure control at the moment. . .and we can live with it if she can.

We'll see. She had that one seizure 2 weeks ago - but I did not know until after it that she was battling a UTI and a the beginnings of another chest cold. So I really think those were the culprits there.

Again -thanks.

[Mammaw]

Eli was on Lamictal two different times but it was several years ago. I don't remember sleep being an issue though. Our horrendous round with him being awake no later than 4:30 AM for a month or so was when he was on Vigabatrin the last time. Now on zonegrin he doesn't get sleepy at night until 10:30 or 11:00 and then is reluctant to get up in time for school. We see Dr. Vanderver at Children's. She actually comes to Frederick which is very close for us. We saw Dr. Pearl when he was on rotation while Eli was in for video EEG. We really like everyone there. Eli was seen at Hopkins when he was 2 years old but they did not invite him to participate in their program because he had already started the keto diet. So he went to Children's Hospital of Philadelphia for several years until insurance issues forced a transfer. That might be a possibility for a second opinion if Hopkins doesn't work out. We're just beginning at KKI to try to work on the behavior issues. We find that we have to wait a really long time to get an appt. anywhere. Is this true for everyone?

[taratwyatt]

Mammaw -

We've found it hard to get first appts almost everywhere (especially Hopkins when my oldest started with seizures and was admitted through the ER)except for DC Children's - it only took about 35 day before we had our first appointment. And, to get into Neurology from Genetics was only a couple weeks. We're there now every month or so and we also see Dr. Vanderver in conjuction with Dr. Pearl and Dr. Sparks, the Genetist.

Tara & Aidan

[lacyndarella]

Vigabatrin? We were advised Vigabatrin is not approved for use in the US and not an available option. I know where Frederick MD is...last time I checked it's in the US...Was Eli on a trial?

Lacy

[langansmom]

Langan has never been on vigabitrin but a number of kids here have. Some had no success for IS on any other med but were able to get control with vigabitrin. The way I understand it, the neuro has it sent in from a pharmacy in Mexico or Canada.

The fact is that probably over 90% of the kids here are on seizure meds that are not FDA approved for their age. Heck, even the vns isn't approved for kids under 10, and I know a number of kids here including mine have it (and had it approved by insurance). Langan is on lamictal- not approved for her age but approved "off label" and covered by insurance. Sometimes you have to do what you have to do for these kids, and waiting for the FDA isn't an option I guess....

[Jenelle's Mommy]

Sorry, no help on Johns Hopkins.

Jenelle turned into our "Party Queen of the Night" and fought terrible bouts of insomnia when taking Lamictal. She got so bad, she was 3 days awake, one day asleep kind of girl! Lamictal worked on her seizures for a while, but once we tried to increase to a "theraputic dose" her seizures got worse, so thankfully those nights of insomnia are gone!

I'm sorry!

[Jenelle's Mommy]

Vigabatrin? We were advised Vigabatrin is not approved for use in the US and not an available option. I know where Frederick MD is...last time I checked it's in the US...Was Eli on a trial?

Lacy

Jenelle was on Vigabatrin and I credit it for stopping her Infantile Spasm seizures. Our doctor at UCLA gave us a prescription and we had it faxed to a pharmacy in Canada. I'll try to send you the 800 number from work tomorrow as I'm responding from home tonight.

UCLA recommended a 200mg per KG as the maximum dose for Vigabatrin. Jenelle had seizure control at 150mg per KG. Some Neuros think its too high, but our Dr. Shields did the trial on it and found that dose most effective. I hope this helps!

Kelly

[Mammaw]

As we understand it, Vigabatrin is not and will probably never be approved by the FDA because of strong evidence it is associated with peripheral vision issues that are not reversible. After many other meds, neuro at CHOP felt it was best choice. Eli was 3. It was obtained from Canada. After szs. returned, different neuro at CHOP refused steadfastly to allow it and tried many other meds. Then after going to Children's it was chosen again but szs. did not improve at all and behavior issues escalated. This was with Dr. Vanderver along with an epileptologist at Children's. She insisted on pediatric ophthamologist oversight. Goes to show how tough it is to find the best med.

[Little JT]

I don't have any experience with Lamictal, but Jake is followed by the epilepsy center at Johns Hopkins. Specifically, we see James Rubenstein and Erik Kossof. They are good and I would recommend them for a second opinion, but I have learned not to treat it as the final and best solution just because it's Johns Hopkins. Does that make sense?? If you want to chat in more detail about our experience with Hopkins' epilepsy unit, feel free to pm me.