Neuro apt & Diagnosis

[Kaitybugsmom]

We're back from the appointment. Neurologist was very easy to talk to and answered questions that we didnt even ask!!

Diagnosis....Epilespy. Kait starts Lamictal (lamotrigine) tomorrow.

He said that side effects were very minimal, but the main one to watch for was a rash. He also wants her to take Vit-D and calcium.

Blood draw in 6 weeks once shes up to the 100mg twice daily he wants her at. He said he may have to adjust after that, but its a good start. Follow up appointment in 3 months but he said that he will be calling between now and then for updates and periodic blood draws untill her level is where it should be. IF she takes her meds the way she is supposed to and she stays seizure free between now and the follow up he will release her to drive.

Here is to hoping for few to no side affects and no more seizures!

 

[chop456]

It seems we are a few things in common! My daughter (14) was diagnosed with E a month ago. She is also on lamictal (50 mg ramping up to 150 mgs. over the next 6 weeks. She is taking the extended release formula). Dr. also put her on folic acid and a multi vitamin. I am interested in the vitamin D - seems many also take this vitamin. Did they give you more specifics on what type of epilepsy? My daughter has JME. Hearing the diagnosis was a shock but knowing there is a name and a game plan for the diagnosis gave me a hopeful sense of relief.

 

[Nakamova]

It's interesting that they are doing a blood draw -- while there is a general suggested range for blood plasma levels of Lamictal, there is no specific target level, since the actual therapeutic dose varies enormously from person to person. Dosing is based on therapeutic response -- in other words, the therapeutic dose for a given individual is the one that stops that individual's seizures. For instance, my therapeutic Lamictal dose is 150mg/day. (My neurologist wanted me at 300mg/day by the way). I'm not criticizing her neuro -- many people can require higher doses -- just suggesting that if her symptoms can be controlled at a lower dose, that may be worth considering, especially if there are any problematic side effects. Lamotrigine can sometimes lower White and Red Blood Cell counts, so that could be a reason for the blood draw as well.

 

[Kaitybugsmom]

Hi chop - The Neurologist just said it was a 'classic text book epileptic seizure' She has tonic clonic seizures and with the strong strong family history he said that it wasnt a matter of IF she had another seizure it was a matter of WHEN. :/

Nak - Very good information. Definately something I should ask him. He did suggest that at her age they can be laxidasical about the medication and he would know if she was taking the doses (for the most part, he did say that missing a dose here or there is going to happen) by the blood draw. I will ask what he feels her 'theraputic' dose is or what the thinks it should be. Shes starting out at 25mg twice daily then over the course of 6 weeks target dose will be 100mg twice a day. I know her dad takes 250mgs twice a day.

 

[CQ:)]

Hi KBM,

Glad the neurologist appt went well & hope Kait doesn't have to many side effects on the Lamictal.
Did you ask the neuro about the headaches Kait has been getting or are you seeing a headache Dr for them?

 

[Kaitybugsmom]

CQ - neuro's first thought was migraines or even possibly aura's that weren't going anywhere. With some diet changes and a little bit better sleep schedule we've been able to really minimize the headaches. Neuro said if they do come back we can try some migriane meds. He said there were two approaches. One that prevents them, and one that treats them once you have one. Was really wishing I had all of you in the room with us yesterday!

Sent from my SPH-D700 using Tapatalk

 

[Kaitybugsmom]

Nak - Neurologist said that he is doing the blood draw for a couple of reasons. To make sure she is taking her medication like she's supposed to (not alot of missed/skipped doses). He said the blood draw will also give him insight on how her body metabolizes the medication. He said that there is a 'theraputic level" however it is not written in stone. He said starting her here and getting a level will also allow him adjust up or down as needed.

 

[Chaz1]

It’s interesting why one neurologist would subscribe valporic and another will subscribe Lamictal, for 1st seizures or probably better put diagnose. Because valporic known to be bad for female(s)? Or Lamictal better becasue newer?

 

[Kaitybugsmom]

Her neuro said that with 'genetic' epilepsy with TC seizures that he felt Lamictal was the best choice - seizure control with fewer side effects. He also said that in the studies he had read, Lamictal was safer in pregnancy. However he did add a note at the end of that which was..."Pregnancy needs to be planned...when its time we will discuss whether to keep her on the same dose, lower the dose or take her off during the first three months" His biggest concern for Lamictal (over a long long period of time) was the osteoporosis which is why he wanted her to take the 1000mg's of calcium a day.
The only question I didnt get to ask was why the Vit-D. I didnt argue with it because I have seen so many posts here about the benefit of the Vit-D.

 

[Nakamova]

He said that there is a 'therapeutic level" however it is not written in stone.

This is what the maker of Lamictal says:
"A therapeutic plasma concentration range has not been established for lamotrigine. Dosing of Lamictal should be based on therapeutic response."
I guess it's no biggie really, as long as he can be flexible about the dose if necessary. I only stress this because it took me a while to "train" my neurologist that I needed lower doses than the "standard" range, and that having a "low" blood plasma level didn't mean that it was subtherapeutic for me, or that I was going to have a seizure. I had to be pretty stubborn about it, which wasn't fun.

Lamictal is relatively safe during pregnancy, though it does have the same risks for cleft palate that other AEDs do. However, there's one very problematic aspect of Lamictal: Estrogen can lower blood serum levels of Lamictal. As estrogen levels rise during a pregnancy, the clearance of Lamictal can increase by as much as 200 to 300 percent(!) As a result, some women can experience a large drop in Lamictal blood levels during pregnancy -- and there's the risk they will drop to sub-therapeutic levels. In addition, Lamictal blood levels will tend to gradually rise after the delivery. So there's a lot of monitoring and adjusting to do with Lamictal, that isn't required with some of the other AEDs.

 

[epileric]

The only question I didnt get to ask was why the Vit-D. I didnt argue with it because I have seen so many posts here about the benefit of the Vit-D.

The Vitamin D helps the body absorb the Calcium. That's why calcium supplements are often sold with added vitamin D.

Recently research has shown that most of us are D deficient.

Vitamin D

The body needs vitamin D to absorb calcium. Without enough vitamin D, one can’t form enough of the hormone calcitriol (known as the “active vitamin D”). This in turn leads to insufficient calcium absorption from the diet. In this situation, the body must take calcium from its stores in the skeleton, which weakens existing bone and prevents the formation of strong, new bone.

http://www.niams.nih.gov/health_info/bone/bone_health/nutrition/#d

 

[Nakamova]

Plus Lamictal can interfere with calcium absorption, so it's important to have the extra Vitamin D to help.

 

[qtowngirl]

Hi Mom,
Be sure to get a high quality Calcium/Vitamin D supplement that contains Magnesium, as when it comes to issues with arthritis and osteoporosis calcium is not enough, and in many cases without magnesium it doesn't work much at all. My doc asked me to do this too as I am on Carbamazepine (one of the major AED's that can cause calcium loss and osteoporosis), and now Lamotrigine as well.

from the Magnesium Online Library:
Magnesium is needed for calcium absorption. Without enough magnesium, calcium can collect in the soft tissues and cause one type of arthritis. Not only does calcium collect in the soft tissues of arthritics, it is poorly, if at all, absorbed into their blood and bones. But taking more calcium is not the answer; it only amplifies the problem. In fact, excessive calcium intake and insufficient magnesium can contribute to both of these diseases. Magnesium taken in proper dosages can solve the problem of calcium deficiency.

When calcium is elevated in the blood it stimulates the secretion of a hormone called calcitonin and suppresses the secretion of the parathyroid hormone (PTH). These hormones regulate the levels of calcium in our bones and soft tissues and are, therefore, directly related to both osteoporosis and arthritis. PTH draws calcium out of the bones and deposits it in the soft tissues, while calcitonin increases calcium in our bones and keeps it from being absorbed in our soft tissues. Sufficient amounts of magnesium determine this delicate and important balance.

Because magnesium suppresses PTH and stimulates calcitonin it helps put calcium into our bones, preventing osteoporosis, and helps remove it from our soft tissues eliminating some forms of arthritis. A magnesium deficiency will prevent this chemical action from taking place in our bodies, and no amount of calcium can correct it. While magnesium helps our body absorb and retain calcium, too much calcium prevents magnesium from being absorbed. So taking large amounts of calcium without adequate magnesium may either create malabsorption or a magnesium deficiency. Whichever occurs, only magnesium can break the cycle.

And good to hear you finally know what's going on and can move forward, nothing worse than being in the dark without a focus.
As for the rash, it's a good thing to watch out for daily in at least the first eight weeks; backs of the arms and neck, chest and around breasts, and face are common. It can be hard to notice if it's too subtle to grab your attention, but any rash, whether severe or light, is cause to call the doctor. Myself I developed it on all of those places after two doses - and my eyes swelled half shut as well. I tried it for a few more days and it didn't get better so my epileptologist took me off until the rash disappeared and then we started again at half the dose - 12.5mgs for three weeks. Didn't come back.
I don't want to scare you here, just inform as it is possible. My pharmacist said when I picked up the script that the rash was one in 10,000. When I went back he just about fell over; it really can and does happen. Overall though the drug has worked good. Best of luck sweetie... I hope it works GREAT for her seizures!!

 

[Crash]

Cheers for the info,i know ive read it here before but usually forget it im on Carmazepine as well,so im back to work and can afford some decent supplements,better make an appointment with the epinurse.I certainly dont rememember my doc tolling me any of this though.