Lamictal?? Anyone? (for FASD)

[mykdsmomy]

Does anyone have any experience with this medication? Ds6 is currently taking Seroquel and Clonidine. He has gained so much weight with the Seroquel that his Psychiatrist is concerned and wants him off of it. (He did Risperdal last year but began producing too much prolactin and gained too much weight as well).

 

The Dr. mentioned Abilify but was concerned that it *could* make him irritable (he is already super irritable and easily agitated).

 

I mentioned Lamictal because Boo's old Neurologist mentioned it as a possibility. Current Dr. thinks it would be worth trying. So, we're going to start slow and see how it goes as we wean off of the Seroquel at the same time.

 

Has anyone had any luck with this particular med? My poor Boo is so frustrated that he can't "control his anger" :( We have tried so many things and nothing seems to really help him as far as "stress reducers". We've offered things like : screaming in a pillow, pushing the wall, punching his stuffed animals, jumping up and down, squeezing stress balls, deep breathing, etc. He says it doesn't work for him :(

It's been a rough week so sorry for the vent......thanks for reading :)

[Maverick_Mom]

Does anyone have any experience with this medication? Ds6 is currently taking Seroquel and Clonidine. He has gained so much weight with the Seroquel that his Psychiatrist is concerned and wants him off of it. (He did Risperdal last year but began producing too much prolactin and gained too much weight as well).

 

The Dr. mentioned Abilify but was concerned that it *could* make him irritable (he is already super irritable and easily agitated).

 

I mentioned Lamictal because Boo's old Neurologist mentioned it as a possibility. Current Dr. thinks it would be worth trying. So, we're going to start slow and see how it goes as we wean off of the Seroquel at the same time.

 

Has anyone had any luck with this particular med? My poor Boo is so frustrated that he can't "control his anger" :( We have tried so many things and nothing seems to really help him as far as "stress reducers". We've offered things like : screaming in a pillow, pushing the wall, punching his stuffed animals, jumping up and down, squeezing stress balls, deep breathing, etc. He says it doesn't work for him :(

It's been a rough week so sorry for the vent......thanks for reading :)

 

Ds was on Lamictal briefly for control of his seizures. He'd recently undergone some testing that indicated that his seizures were not the kind the doctor originally thought they were and that the medication he'd been on was not the right kind. So the doctor weaned him off that medication and onto Lamictal. Unfortunately, even before he was weaned off, he'd been having more seizures (little ones); and before the Lamictal had a chance to kick in completely, he had a very BIG seizure. The decision was made after that episode to switch him to another medication entirely.

 

All of that to say that according to the doctor, Lamictal can take a while to get into your system.

 

Also, during the short time that ds was on Lamictal, we were cautioned about a serious rash that could occur. Apparently this rash can be life-threatening, although it is rare.

 

You mentioned that your ds has trouble controlling his anger. This is a huge problem for ds (in addition to epilepsy, he has Asperger's and ADHD). If you don't mind my asking, what condition is he taking meds for?

[rootsnwings]

IDK mama, I just wanted to give you a hug!!! :grouphug:

[Ottakee]

2 of mine are on Lamictal but not my one with FASD.

 

Looking at the meds he is on and tried, are they treating something other than the FAS?

 

My girls are on them for seizures and moods.

 

I have one on Lamictal, Keppra XR and Risperdal and one on Lamictal and Risperdal.

 

Lamictal has been a great med here with no side effects. The difficulty is that you must start low and go up slowly so it might be weeks or longer before it is at a therapeutic dose. They also do blood tests to see if it is at a therapeutic level or not. One daughter takes 50mg twice a day while the other one (older but smaller) takes 300mg twice a day---so you can see the huge difference in dose.

 

I understand about the anger stuff. When my daughter was 5 she was begging us to take her to the doctor to "help me with my fighting".

 

Lamictal does have the very rare possible side effect of the SJS rash---but did you know that Tylenol does too? Any med will have a side effect and you should know what to watch for but on the flip side, not medicating can have some serious side effects for the kids.

 

Oh, I have one that does fine on the generic Lamictal but one that went toxic on it and had some major issues---seizure, fall, emergency CT, another trip to ER in the middle of the night, etc. Back on the name brand, she is doing very well. If you do get the generic, try to stick with the same generic form.

[asta]

FAS?

 

Fetal Alcohol Syndrome?

[mykdsmomy]

what condition is he taking meds for?

 

Thank you for the info :) Boo is taking it for FASD (fetal alcohol spectrum disorder) He basically has a whole slew of different diagnoses in addition (or because of) the FASD. The Lamictal is supposed to be for his anger/moods/anxiety/

 

IDK mama, I just wanted to give you a hug!!! :grouphug:

 

Thanks!!!! :)

 

 

Looking at the meds he is on and tried, are they treating something other than the FAS?

 

I understand about the anger stuff. When my daughter was 5 she was begging us to take her to the doctor to "help me with my fighting".

.

 

They are trying to treat the symptoms of the FASD in addition to the possibility of Bipolar and ADHD. They are still trying to figure it all out and treat the worst symptoms but it's frustrating because nothing they've tried so far has helped the rage (it has decreased immensely in frequency but when he DOES have it, there's no turning back). The Seroquel seemed to help a lot but because of the weight, we have to go off of it :(

 

Boo sounds a lot like your dd. He tells me the same thing and it's like a dagger in my heart. I hate that I can't "help" him when he feels so angry :(

 

FAS?

 

Fetal Alcohol Syndrome?

 

Yes, Fetal Alcohol Syndrome.

[sheryl]

Does anyone have any experience with this medication? Ds6 is currently taking Seroquel and Clonidine. He has gained so much weight with the Seroquel that his Psychiatrist is concerned and wants him off of it. (He did Risperdal last year but began producing too much prolactin and gained too much weight as well).

 

The Dr. mentioned Abilify but was concerned that it *could* make him irritable (he is already super irritable and easily agitated).

 

I mentioned Lamictal because Boo's old Neurologist mentioned it as a possibility. Current Dr. thinks it would be worth trying. So, we're going to start slow and see how it goes as we wean off of the Seroquel at the same time.

 

Has anyone had any luck with this particular med? My poor Boo is so frustrated that he can't "control his anger" :( We have tried so many things and nothing seems to really help him as far as "stress reducers". We've offered things like : screaming in a pillow, pushing the wall, punching his stuffed animals, jumping up and down, squeezing stress balls, deep breathing, etc. He says it doesn't work for him :(

It's been a rough week so sorry for the vent......thanks for reading :)

 

Judy, I'm the mom of a s.n. 11 yo dd with controlled epilepsy. But, I don't know what fasd is? So, I don't know if this will answer your question b/c I'll answer as it pertains to my dd's situation.

 

My dd had a grand mal March 2007. She went on Lamictal (generic: lamotrigine). In Jan 2008 another med was added and she is now seizure free. The 2nd med is the contributing one which made her seizure free. However, both of these meds work well together for my dd. She's been on lamictal for over 3 years now. It helps alot. It is a "clean" drug and does not interfere with the liver. It metabolizes in the system well. Now it does take maybe a few months to "ramp up" so be patient waiting to see improvements.

 

My dd is 70 lbs and takes a dose of 25 mg. She takes 6 in am and 4 in pm for a total of 250mg/day. She was taking more of both meds and it was TOO much for her system which caused the SAME behaviors as having too little....aggression, etc. so her neurologist brought her down on both.

 

My dd goes in about 2 times a year for blood level check. My dd is always WAY below the minimum range, but it works for her. Her neurologist says it's just how her body is "processing" the med....efficiently.

 

I hope this helps some way. Sheryl <><

[Ottakee]

The Lamictal is supposed to be for his anger/moods/anxiety/

 

 

 

They are trying to treat the symptoms of the FASD in addition to the possibility of Bipolar and ADHD. .

 

That makes sense. I was wondering about bipolar as many untreated bipolar parents self medicate with alcohol which then leads to kids born with fetal alcohol who carry the genetics for bipolar.

 

Have you looked at the pediatric bipolar treatment guidelines? If not, google that and bpkids.org has a good article. Long but worth printing out for a med flow chart, ideas on side effects, which meds for what sypmptoms, etc.

[mykdsmomy]

That makes sense. I was wondering about bipolar as many untreated bipolar parents self medicate with alcohol which then leads to kids born with fetal alcohol who carry the genetics for bipolar.

 

Have you looked at the pediatric bipolar treatment guidelines? If not, google that and bpkids.org has a good article. Long but worth printing out for a med flow chart, ideas on side effects, which meds for what sypmptoms, etc.

 

Yes, I seriously suspect Bipolar for the reasons you mentioned. I have tried talking with his Psychiatrist about it but I haven't gotten very far. I've decided to move Boo over to this Dev. Ped who is the head of the Dev. center at our hospital. I think he will be able to help us better.

[Night Elf]

I'm taking Lamotrigine (Lamictal) and Abilify successfully. I was on Seroquel for a short time but my triglycerides went through the roof, I gained 15 lbs. in 2 months, and felt generally more agitated. Just remember we're all affected by the medications differently. That's why it's such a trial and error process. It sucks, but that's what it is.

 

Oh, I'm taking meds for bipolar 2 and ADD/OCD which is likely comorbid with the bipolar.

[asta]

Ok, the .pdf doesn't paste properly.

 

There is an excellent journal article that discusses medications for peds dealing with FAS (it even has a matrix of what to do for what symptoms) that I found, but it doesn't have a link - it just downloads when I click on the title.

 

If you google the following, you should be able to get it, if not, just pm me and I'll email you the .pdf

 

Use of Psychotropic Medications in Children with Developmental Disabilities

[PDF] from yale.edu

JL Calles Jr - Pediatr Clin N Am, 2008 - med.yale.edu

 

Children and adolescents with ''special needs'' comprise a small part of most pediatric practices, yet often require an inordinate amount of time and resources in their clinical care. These children are usually described as having developmental disabilities (DD), which denotes ...

View as HTML

 

Make sure it says the bolded part above in the one you find. There is another one that looks exactly like it but says info.med.yale.edu - and that one won't give you the entire study. The FAS stuff is at the end of the study.

 

HTH

 

 

a

[mykdsmomy]

Ok, the .pdf doesn't paste properly.

 

There is an excellent journal article that discusses medications for peds dealing with FAS (it even has a matrix of what to do for what symptoms) that I found, but it doesn't have a link - it just downloads when I click on the title.

 

If you google the following, you should be able to get it, if not, just pm me and I'll email you the .pdf

 

Use of Psychotropic Medications in Children with Developmental Disabilities

[PDF] from yale.edu

JL Calles Jr - Pediatr Clin N Am, 2008 - med.yale.edu

 

Children and adolescents with ''special needs'' comprise a small part of most pediatric practices, yet often require an inordinate amount of time and resources in their clinical care. These children are usually described as having developmental disabilities (DD), which denotes ...

View as HTML

 

Make sure it says the bolded part above in the one you find. There is another one that looks exactly like it but says info.med.yale.edu - and that one won't give you the entire study. The FAS stuff is at the end of the study.

 

HTH

 

 

a

 

 

Thank you! I found and read it. It's mostly what I had heard before and while it breaks down what meds to use for what behavior, it still is a matter of finding the one that works for my ds :( We've tried many on that list with little improvement or worsening of symptoms.

There is a great Dr. who is a leading researcher on FASD in our area. She once said, "Go ahead and try different meds but none of them work for FASD" I think she's right in the sense that if my ds's brain is damaged from the prenatal exposure, he will always have a deficit in self regulation. I want to learn more of the chemistry behind these meds and how they truly work on the brain so I can feel better about using them.

[asta]

Thank you! I found and read it. It's mostly what I had heard before and while it breaks down what meds to use for what behavior, it still is a matter of finding the one that works for my ds :( We've tried many on that list with little improvement or worsening of symptoms.

There is a great Dr. who is a leading researcher on FASD in our area. She once said, "Go ahead and try different meds but none of them work for FASD" I think she's right in the sense that if my ds's brain is damaged from the prenatal exposure, he will always have a deficit in self regulation. I want to learn more of the chemistry behind these meds and how they truly work on the brain so I can feel better about using them.

 

The problem is, we don't really know how many of these drugs work - it is supposition for the most part. I mean, we can say "X drug works through calcium channel gating", but that is because we have sliced open the brains of rats and postulated that Y is the calcium channel and X drug is opening or closing the calcium channel based on factors A, B, and C. In humans? Eh.

 

For very basic "this is how they work" stuff, check this site. For a more biochemistry-laden description of each med, this site will give you a basic run down (just type in the name of the drug).

 

For studies about how meds affect different conditions, there are a few different sites I use, even though most of the time I can only see abstracts (I'm not affiliated with a uni, so I can't access the full texts). Google scholar (no www) is overload, but the easiest. You have to remember to check the box that you don't want patents. PubMed is an excellent source as well (it is run by the U.S. National Library of Medicine

National Institutes of Health).

 

Good luck.

 

 

a

[Ottakee]

I think she's right in the sense that if my ds's brain is damaged from the prenatal exposure, he will always have a deficit in self regulation. .

 

Basically, no med is going to treat or cure the FASD. It is brain damage. The meds though can really help with some of the resulting behaviors. I know Risperdal and high levels of EPA (in fish oils) can really help. It is really just a matter of personal trial and error as even in FASD kids vary so much in what is affected in the brain.

 

This is so sad though as it is 100% preventable.

[Quiver0f10]

My son is on lamictal for seizures. He has been doing great on it but over the course of the last 2-3 years? He has had his dose increased a few times. His has also gained a good amout of weight but the neuro says lamictal doesn't usually cause weight gain? I am assuming the increase in weight is why the need to increase his dose.

 

I was worried about the rash at first but we kept an eye on him for any reactions and thakfully he did fine with it.

[unsinkable]

DD is on the generic lamictal for seizures, too.

 

:grouphug: I am sorry I can't help w/ info how it would work with your child's issues.