Depakote/Behaviors/MMJ

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hootie

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Hi!

I am an old member that is back to discuss my son. He is 16, has absence seizures, autism, multiple food allergies and autism. He has been on DEPAKOTE for about 6 years. We have increased the dose slowly as he has gained weight over the years.

In April, he had an EEG and the neurologist told me to increase his Depakote sprinkles by one more pill (125mg). He was then taking 4 am/ 4 lunch/ 4 before bed. Shortly after the increase, he started vomiting a few times a week after breakfast. Because he was growing out of his scoliosis brace, at first we thought it was due to it not fitting anymore. Early June, he got his new brace...and the vomiting continued. Scratch that off the list...

Then we thought it was due to berries...so they were eliminated. This caused a decrease in the nausea/vomiting/pain, but it did not eliminate it.

In August, I picked up the form his neurologist signed to allow the school nurse to administer Depakote at school. This is when I saw nausea as a potential side effect. I contacted the neuro, she reduced the dose and the vomiting/nausea/pain went away.

Ever since the vomiting, his behavior has been bad...short fused, uninterested in previously desired activities (community, bowling, PE ,etc), and it has not gotten better with the decreased dose. His blood levels are 115 (normal range 50-100).

The neurologist now wants to put him on Abilify or Risperdone for the behaviors. I am not too keen on these drugs and his biomedical doc said to steer clear of these due to the risk of diabetes (my husband is diabetic and so was my grandmother). She is willing to fill out the paperwork for MMJ for the seizures...and any other benefits that might go along with using the med.

Does anyone have experience with depakote causing behavioral problems after being on it for years? How about using medical marijuana for seizure control?

His whole school year has been a waste. He is losing skills...need help!!!
 
I have been on Depakote for years and am using MMJ as a means to wean off of it.

If the normal range is 50-100 and he tests at 115, It seems to me that a decrease in dosage might be a better alternative to adding more meds to the mix.

As my dosage has decreased, I have found with each step down a little lag time where I feel tired and a bit uninterested in much of anything. It may be this adjustment period that he is going through.

The doc has me on a very slow taper, 1000mg, 750mg, 500mg, and now I'm at 250. Each step has been a whole month though. Even though it has a fairly short half life, I guess it still takes a while to completely adjust your brain to being without it when it has been used to it for so many years.

So, give it some time and talk to the doc about getting more in the middle of that range rather than off the top end. Best wishes to you and your son.
 
:agree:
hootie, welcome back! I tend to be against piling on the brain meds (and some antidepressants can also trigger nausea and vomiting), so if you can give the med decrease a shot, I think that would be a good first step. Being 16 is stressful all by itself, and six months of vomiting and nausea can't have helped.

It's encouraging that your doc is willing to prescribe MMJ for the seizures; you may find that it has benefits for autism as well if you go that route.
 
The state still has to approve the doc's request. It may take a little time to get that. Plus, his doc is out of town until mid-week next week.
 
hootie said:
The neurologist now wants to put him on Abilify or Risperdone for the behaviors. I am not too keen on these drugs and his biomedical doc said to steer clear of these due to the risk of diabetes (my husband is diabetic and so was my grandmother). She is willing to fill out the paperwork for MMJ for the seizures...and any other benefits that might go along with using the med.

Does anyone have experience with depakote causing behavioral problems after being on it for years? How about using medical marijuana for seizure control?

His whole school year has been a waste. He is losing skills...need help!!!
Click to expand...

Come to Colorado! I'm now on Broadway Blvd here in Denver and there are lots of "pot" shops and it's now legal. But I haven't done it yet.

I know depakote and many other AEDs can cause behavioral/mood problems as I've tried many of them. One thing I would advice you NOT to have your child try is Risperdal, as that DID bring on Type 1 DIABETES for me. At the time, there was NO BLACK BOX label for those drugs. So I'm happy to hear the dr. warned you of this hazard. Hopefully, you will find the right dose of MMJ for seizures.
 
Thanks for verifying my concerns for my son about resperdal. Sorry you had to learn the hard way. It is now legal in my state with a card. We just need to go through the process of getting one for him.
 
Hi Hootie
I have a child with Autism.

I'm quite adamant now to not venture anywhere near any behaviour meds or antianxiety stuff.

Be aware that some foods do have high salicylate content and it does include berries. My child has issues with this which includes skin rash and irritability.
 
Thanks, Blonde Angel,

He has not been eating berries much since the doc-induced Depakote overdosing. Too much depakote was causing nausea...and the berries seemed to irritate more. Now he has an aversion to berries. Before April, he was eating berries for years without a problem.

I am avoiding the behavior meds for sure!!!

I think it is possible the Depakote is causing the behaviors since it started when he was getting too much. Too bad the behaviors have not stopped despite lowering the dose.
 
hootie
Do please let us know how you go eventually if you decide to do the MMJ with your Son.
I would be interested to read of your experiences.

Only if you wish **

I certainly get frustrated with weird and wonderful behaviours in the world of Autism, but I do try hard to focus looking at the WHY of a behaviour and working out to problem solve it.. especially if its inappropriate and challenging like aggression and being physical.

Whats going on that's not agreeing with her??? is what I try to answer, I see behaviour as a message a communication that something needs reviewing. There has been times I get my Hubs to double check and provide feedback as he is important in providing some balance to me.

Possible qns to ponder?
Has there been changes in his schooling?
new teacher aide ?
any kids bugging him?
any certain days or times for the negative behaviour?
Understand the medications SIDE EFFECTS OF EVERYTHING AND OTHER DRUG INTERACTIONS

yeah
its so much to think about and sometimes its more questions than answers.

If your son is verbal, he may be able to express in a certain way functionally.
What does he feel when he is unwell?
 
Update:

Now my son is having breakthrough absence seizures because the doc reduced his dose of Depakote.

She wants him to also take Onfi...anyone have experience with this med? I have never heard of it.

I think I would rather wait for the MMJ...
 
 
hootie said:
Update:

Now my son is having breakthrough absence seizures because the doc reduced his dose of Depakote.

She wants him to also take Onfi...anyone have experience with this med? I have never heard of it.

I think I would rather wait for the MMJ...
Click to expand...

In Oz Ive never heard of it as Onfi its known as Frisium and Clobazam.

This was my girls first ever medication back in 2009, its also a muscle relaxant and her dose was initially a quarter of a tablet, when the seizure activity increased it got to half a tablet twice daily. These are 10mg tablets that you have to cut to dose..

She was on this for nearly 3 yrs with no other meds, it was when her seizures started to get more frequent there was the need to consider another drug and wean the Frisium slowly.

You can ask the Drs this but its not aimed to be a long term drug due to tolerance issues.
If you do decide to put him on Onfi please do ...
Look up the side effects and drug interactions of what your son is on and check every little thing even the rare side effects as it may impact negatively for your Son.
Every little thing can mean a big deal with Autism and Epilepsy control.
 
I am using MMJ and Kepra (500) at night and lamotragin morning and night. I have behavior issues from a TBI which are exacerbated by kepra. I have a friend here that has studied MMJ and has her son (with epilepsy AND TBI) take vaping MMJ that is bred specifically for seizures and he has stoped seizing all together for almost seven months. My doc recomended 'vaping' MMJ for the best dose of CBD in the pot and to only buy from the 'green-card required markets of medicinal grade. My seizing has gone to infrequent but I am just starting with this and still taking all pharmaceuticals :( .. ALSO this son I am speaking of has vaping hits all day, through the day. Not me.
Here in Washington State, recreational pot and medicinal are legal. I am doing research about how different they are and the importance of knowing what you buy. I am wishing I could talk with you and my doc at the same time where he will recommend a strain for behaviors and or seizures and gastro-problems. I am not a doctor and do not play one on tv or stage. All information here is for enjoyment. Do not try this at home, all restrictions apply . What you read from me here is done by professionals only. This note includes, but is not limited to personal liability. all names/places are fictional to protect the innocent .. Warmly,
 
Hi Janus
Glad to read you are having some positives with seizure stuff being infrequent.

Just wanted to clarify:
TBI = Traumatic Brain Injury?
 
Hello. I only have internet at cafes/library now as I have cancelled comcast all together. I never had tv or a phone with them but they charge too much for just wifi. so I had to cancel. :(
 
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