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Lamictal


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13 replies to this topic

#1 tattoomom

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Posted 09 October 2012 - 05:31 PM

Anyone have experience with this drug being used for mood? DS (11.5) has tics and I saw the side effect list mentions tics, and I don't want to do anything to make his tics worse, but the Psychiatrist is suggesting we add Lamictal to his Zoloft.

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good



#2 MomWithOCDSon

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Posted 09 October 2012 - 05:39 PM

Our DS utilizes a combination of low-dose Zoloft and Lamictal at present. I don't know about "mood" in terms of the commonplace description, re. depression or anxiety or anger, etc. What the Lamictal does appear to have done is permit DS to "let go" more readily of things that cause him some concern or even angst; it has diminished the perseverative tendencies he had at one point. I have heard, also, that it can diminish defiance and/or explosiveness as well, which our DS has never had a lot of in general. But in helping him "let go" and move on, that has also reduced the argumentative conversations in our house. :D

Nancy
Mom of PANDAS DS16, Awesome - The Healing Continues!


#3 tattoomom

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Posted 09 October 2012 - 05:50 PM

Mood= Argumentative, Depressed, Defiant, Oppositional, Angry, etc....

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#4 MomWithOCDSon

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Posted 09 October 2012 - 06:07 PM

Mood= Argumentative, Depressed, Defiant, Oppositional, Angry, etc....


Well, like I said, I think Lamictal may diminish the argumentative/defiant/oppositional side of things because it may make him less fixated on his negative feelings behind the behavior.

Nancy
Mom of PANDAS DS16, Awesome - The Healing Continues!


#5 MIAS_MOM

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Posted 09 October 2012 - 08:56 PM

My dd12 started Lamictal for mood when she was 11. It has been her wonder drug. We tried many before finding this one. But remember every child will react diff to medications. Our side effect was she would become tired at noon, but with a 1.5 hr nap, she would be back up and going :)
Christy, mother of 12 yr. old daughter with PANDAS for 4yrs. too long. 

#6 nicklemama

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Posted 09 October 2012 - 09:08 PM

My DS was on lamictal for about 1.5yrs. It helped with his anger and explosions. He was put on it before we knew about PANDAS. We started weaning him off it last August. He took his last dose in Dec 2011.
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014

#7 1tiredmama

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Posted 09 October 2012 - 10:06 PM

I have two very different experiences to offer. Ds started Lamictal for severe depression when he was 9. He was underweight, and nothing else worked. It did pull him out of it. I kept him on it for 8 years. His last dose was early spring after 6 or 7 months of abx treatment. He was weaned successfully.

Now, when dd was 6 and underweight from depression, we tried Lamictal since it worked so well for her brother. Big mistake! She became downright mean and defiant on it within days. When I took her off of it, she went back to her "normal" horrible state.

I also use Lamictal to control seizures. I have been on it for 10 years. The only side effect I ever noticed was some weight gain, but not too bad.

I find the ticcing side effect interesting. My son's tics started one year after being on Lamictal. His neuropsychiatrist never expressed concern about the Lamictal, and she is always on the lookout for negative side effects. I'll have to ask her about that...
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared

#8 911rn

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Posted 10 October 2012 - 08:08 AM

My DS12 suffers from complex vocal tics and some oddball, intermittent complex motor tics. Thinking is more OCD compulsive motor tics.Vocal>motor. Vocal more consistent. Motor comes and goes, less noticeable for the most part. Anyway, he has been on Keppra, in the past, which at higher doses caused severe vocal tics that was drug dose related. Bird noises- hooting like an owl and tweeting like a bird etc. It was HORRIBLE! Thought I was living in a bird sanctuary the summer of '09. He was totally unaware of it- thought I would LOOSSEE my flippin mind! It was relentless and nonstop except when he slept. With decrease the vocal tics diminished and went away. Whew! TG! He has been on Lamictal for 3 years....same thing- higher doses- increase tics. Lower dose- somewhat OK. I have research articles on "Lamotrigine (Lamictal) induced tics." You can google scholar it and probably find it easily.

My DS12 has to be on AED for underlying abnormal EEG. We have been through several AED's and Lamictal has been the best "all round" although, none of them have been the perfect fit for all situations. Keppra was good for several years then effects seemed to wane (which, CAN occur with Keppra- research based data to support this). Memory, social abilities, creativity and handwriting were better on Keppra.

Lamictal has been better for mood stability, less anxiety but he lacks creativity and is less social. Hand writing is worse and it somewhat dulls him so executive and working memory is worse. I have talked to adults on Lamictal and they say it is somewhat like being in a brain fog, at times. I have found that the XR formula was much better for him than the regular tabs. Less highs and lows- way more consistent all day coverage and stability. XR is expensive bu I have good insurance drug coverage so I don't pay much for XR tabs.Anyway, our experience has been with Lamictal- lower dose- OK. Higher dose- increase tics. We weaned from 200 mg to 150mg daily last year and tics diminished. Looking next summer to go down another 25-50 mg if he tolerates it. Wean from AED's altogether starting at age 15 where his risk of abnormal EEG diminishes.

Most neurologists are quite aware of tics as side effect with some of the AED's. Lots of research to support and validate it. In our case, we HAVE to have an AED and it was a matter of the one with most benefit with the least side effects. Benefits must outweigh risks. There has been no silver bullet- Lamictal has been the best "all round" for our DS12. For my DS- I would like to have LAM-PRA ;)

Create my own custon AED- little bit of Lamictal with a little bit of Keppra....I like some of what each drug did for him but not so much the single drug alone. Adding Prozac to Lamictal has helped with some of the depression/anxiety/OCD/compulsive vocal tics that Lamictal was not doing alone. However, after 1.5 years- I would like to change to Zoloft at Christmas time or next summer. Prozac effects seem to be waning and Storch and Murphy recommend Zoloft over Prozac for adolescents....see if change would make much difference.

My son could cycle thru some oppositional, defiant, argumentative, angry, depressed stages prior to and even since Lamictal. After discovering PANDAS-there was a well set pattern of behaviors following Strep episodes, in which, this subset of behaviors followed within an exact patterns of others. Sans Strep episodes- I would say that Lamictal is more mood stabilizing for these behaviors and as Nancy says- less fixating on continuing these behaviors. Generally, I would describe my son's underlying mood (without meds) as on the depression/anxiety side not angry/oppositional/defiant side although we have seen some of those behaviors over the years- they are more the secondary behaviors with the former being primary. He seems to get more enjoyment out of life on the Lamictal/Prozac combo than on Keppra or Lamictal alone.

HTH- feel like I am rambling.... :P

#9 tattoomom

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Posted 10 October 2012 - 11:20 AM

Called the Ped to ask her opinion on the Psychiatrist putting DS on Lamictal and she texted me this--

Psychiatrists do this, one drug after another, so you don't know what is the child or what is the medication reaction. PANDAS doesn't cause rage and tics as much as OCD symptoms.


WHAT???? :blink: :wacko:

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#10 nicklemama

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Posted 10 October 2012 - 11:36 AM

Well, I'll have to disagree with your pediatrician about the rage and tics. The rage was the worst symptom of PANDAS and its what pushed us to put our son on lamictal. She is right about psychiatrists sometimes wanting to push one drug after another. We weaned our son off lamictal after IVIG. Dr K felt we wouldn't know what was due to healing and what was due to the med. He had us wait 3 months post IVIG. We also wanted DS off lamictal *IF* he didn't need it. It was a good decision for us. I never regretted for a minute putting him on it. It gave us and him some relief from his raging anger.
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014

#11 tattoomom

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Posted 10 October 2012 - 12:02 PM

Oh, I disagree with her completely! I was shocked she was that ignorant about it, considering her partner is very knowledgeable. Thankfully, we've been seeing the other Ped ;)


Well, I'll have to disagree with your pediatrician about the rage and tics. The rage was the worst symptom of PANDAS and its what pushed us to put our son on lamictal. She is right about psychiatrists sometimes wanting to push one drug after another. We weaned our son off lamictal after IVIG. Dr K felt we wouldn't know what was due to healing and what was due to the med. He had us wait 3 months post IVIG. We also wanted DS off lamictal *IF* he didn't need it. It was a good decision for us. I never regretted for a minute putting him on it. It gave us and him some relief from his raging anger.


Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#12 tattoomom

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Posted 24 October 2012 - 09:32 PM

Lamictal dosage-- 25MG

Take 1 tablet for 14 days, then 2 tablets for 14 days, then 4 tablets everyday.

Is that how it normally works?

Today is day 5 and he seems WORSE! He had a completely crazy meltdown today that resulted in an hour long rage/crying/screaming/throwing/punching the couch kind of behavior. Scared me to death and makes me worry it's medication related.

The Ped. hasn't answered my plea for antibiotics. I'm feeling so helpless :(

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#13 peglem

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Posted 24 October 2012 - 10:21 PM

Lamictal dosage-- 25MG

Take 1 tablet for 14 days, then 2 tablets for 14 days, then 4 tablets everyday.

Is that how it normally works?

Today is day 5 and he seems WORSE! He had a completely crazy meltdown today that resulted in an hour long rage/crying/screaming/throwing/punching the couch kind of behavior. Scared me to death and makes me worry it's medication related.

The Ped. hasn't answered my plea for antibiotics. I'm feeling so helpless :(

Yes, lamictal must be tapered up slowly and that is the normal schedule. The rage could be related to the lamictal or could be PANDAS ramping.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#14 nicklemama

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Posted 25 October 2012 - 07:45 AM

It takes a while for the lamictal to work. Its effects are not immediately seen. You have to slowly work up to a therapeutic dose. I'd give it more time to see if its going to work for you.

We did a much slower tapering up to get to therapeutic dosing of 100mg a day. The schedule you have is standard.
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014




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