Successful Depakote weaning

Hi @tlb101175 Good Morning
Thank you for your reply. What a great attitude this neurologist you have seen has had!!!
The cancelation list @grammy82 has suggested could help to anticipate your visit to this epileptologist. My best of luck to you, crossing my fingers!
Have all a beautiful Sunday!
Santosha

My 22 yr old son has been on depakote for about 7 yrs. His liver enzymes are high 75 should be max 30… doc not worried but I am. He does have slight tremor and also it has cognitively affected him and really slowed his processing. We are trying to add lamictal in hopes of decreasing depakote … no a rash (not Stevens johnson. Thank God… neurologist not worried but again I am… cuz it has to be lamictal caused). L-carnitine a ped neurologist recommended for liver health… I begged to add it back. I try to get him to take magnesium and omega 3 for brain health… neurologist recommends nothing but pharmaceuticals…. So frustrating. No one is concerned about his whole body health but me. And when I mention sleeps so hard he can’t wake up they send us to a sleep doc who wants to add more scary drugs. And when his mood is low … add antidepressants… and when school is difficult add methylphenidate to focus …. Well all these drugs have scary side effects including suicidal thoughts …. Docs are all about more and more meds… no one knows how all these things affect a person. Also, neurologist did not care that my college student on all of this stuff was also vaping nicotine and drinking alcohol. His liver 🤦‍♀️🤦‍♀️. God bless you and your son.

Yes, I completely get where you are coming from. My son is very negative and always down on himself. He has all the same issues your son has except he refuses to take any more medications besides the depakote. The only positive side that we have seen with the drug is that it is a mood stabilizer which seems to keep him more calm in certain situations. Although he is not in college he does live on his own and does all the things a 22 year old does as well. Luckily he stopped the vapping a year ago because he finally realized it is what was making him sick to the stomach every morning. It is so hard to distinguish between the medicine and just being a normal kid!! God bless you both as well:)

@tlb101175, a very Good Morning
I can understand much your feelings, words and the experience you have been through with your son, as I went through a similar experience with the AEDs I have tried. I had so many side-effects, all of you have mentioned in your post and some others, affecting much my whole life. But thankfully, I am well again since I have been treated by an epileptologist and on CBD (from medical cannabis) and explored other alternative treatments. So, do have hope!!!
I understand that your son is seeing a neurologist. Please do consider seeing an epileptologist, that has made a great difference in my epilepsy treatment.
The neurologist I was seeing in 2019 also recommended seeing a sleep doctor, who gave me more drugs. The sleep deprivation I was having was due to the AED I was taking and adding more drugs has not helped me. The sleep doctor gave me Alprazolam and though I could sleep, I had terrible nights of sleep with so many nightmares. After some time, Alprazolam stopped working (the body got used to it) and the doctor wanted to increase the dosage. Thankfully, I did not follow the sleep doctor's recommendation and changed doctors. The new doctor, still a neurologist at that time, has weaned me off the Alprazolam little by little, as it could result in more seizures. To have a night of better sleep, I started with yoga nidra practices, which have helped me much. I still continue with it, daily. This year, I have been diagnosed with SIBO (small intestinal bacterial overgrowth), most probably caused by the last AED I have taken.
I do very much agree that many doctors nowadays are not concerned with the whole body's health and that many of them are more about more and more medication. This is very well shown in the movie with Meryl Streep "First do no harm", available on YouTube: https://www.youtube.com/watch?v=xY9ZMGK5Hbs
Seeing an integrative medicine doctor could be an option. Integrative medicine combines conventional medicine and complementary therapies from very ancient medicines such as acupuncture, ayurveda and Chinese medicines. Different from conventional medicine, it treats the patient as a whole and not just his or her illness. Here is more information on it, in case you are interested: https://my.clevelandclinic.org/health/treatments/21683-integrative-medicine. I got to know integrative medicine by reading the book of Dr. Cynthia Li (Brave New Medicine). With such an approach, I took gluten out of my meals and my seizures were reduced by 60%, without all the terrible the side-effects of the AEDs I have taken. Dr. Cynthia Li was a conventional doctor and became an integrative medicine doctor because of her hard journey in the treatment of her autoimmune disease. Besides her book telling us about her journey, there are many videos on YouTube. One of them that I like much is this one: https://www.youtube.com/watch?v=_VZrY2vSbws&t=136s.
God bless you and your son!
Chris/Santosha

Thank you so much! I watched first do no harm per a previous message w you… incredible movie, incredible story! I’m have never heard of an epileptologist! I will seek one out! I had my son at an integrative doc yest for the first time… very impressed with the knowledge of how to help his liver, he has agreed to the supplements: l-carnitine, C, CoQ10, milk thistle, D-ribose. However I’m sure eastern medicine naturopaths would know even more… it’s a start. I had forgotten you had mentioned Medical cannabis… last I checked we had US approval but no docs knew what to do w it. My sons epilepsy (generalized juvenile .. both abscence and grand mal was not treated this way) his is controlled w depakote so no docs care about his decreased ability to function in the world. I will watch your links. Thank you always for your knowledge and concern. GOD BLESS YOU!

Integrative doc suggested B complex also for mood and energy (brand is pure encapsulations can find in pure formulas.com) if you can talk your son into trying it he may feel better. She said depakote depletes B vitamins. God bless you and your son. I agree it’s so hard to tell what os medicine, what is from epilepsy and what is just being a 22 yr old boy. Know I am with you in this. GOD BLESS YOU BOTH TOO!

My pleasure @sgboster123 !!!!!
I do cross my fingers for you to find an epileptologist, a neurologist who specialized in epilepsy due to its complexity. Unfortunately, I can not recommend one to you in the States (I live outside the US). For me, as I mentioned before, being treated by an epileptologist has made a great difference, something I have also heard from others in epilepsy groups I participate in the US. Perhaps someone here in our group can help you more with an epileptologist recommendation in your area in the US. An epileptologist for sure has experience in managing medical cannabis for his or her patients.
Great to hear that you have been to an integrative medicine doctor yesterday. Hope this treatment helps your son with his liver issues. I would love to hear more about the results of your son's treatment in some time. When explaining integrative medicine, I might have expressed it in an incomplete way when I just mentioned some ancient medicines. I do understand that it also combines Eastern non-conventional treatments. Dr. Cynthia Li (American doctor) explains more about integrative medicine in her interviews and videos. Here is also another definition of integrative medicine by Mayo Clinic: https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581
Warm regards,
Chris/Santosha

My son is seeing an epileptologist on the 16th of Aug. Do I just flat out ask about cbd? Are most doctors on board with it. Although a lot of the youth here in the states seem to have there medical card according to my son it is very expensive and probably not very affordable for us. I am wondering about this pill form that you take and if it would work for him or if it just works for certain types of seizure.

Good Morning @tlb101175
Great to know that your son is seeing an epileptologist very soon!
CBD is not a pill, it is an oil. Here is the link to the CBD I take from FarmaUSA. It is just for you to have an idea: https://listaverde.us/produtos/purodiol/. FarmaUSA is a company based in the US for the Brazilian market (it is cheaper to produce CBD in the States than in Brazil, and furthermore producing it here in Brazil is still very restrictive). Even so, it is not a cheap medication yet (because I do understand that there is not much scale yet due to so many restrictions and lobbies), more expensive than a common AED. I pay around USD 300,00 for each bottle of Purodiol 200 (100% CBD, no THC).
For sure, I would ask the epileptologist about CBD. But, it would be interesting to get some acquaintance on CBD before the appointment with the doctor. There is plenty of information on the internet. It would also be interesting to check the information outside the US (UK, Germany, Switzerland, Scandinavian countries). Germany is a country that has always been very open to homeopathy and non-conventional medicine ( I have lived in Germany for some time, my mother is German). Today on Google, you can easily have a page in German or another language translated into English. Here is a link with some information on CBD from the Epilepsy Foundation: https://www.epilepsy.com/treatment/alternative-therapies/medical-marijuana
I do understand that epileptologists are on board with it. A friend in the US, whose son has refractory epilepsy and other health issues went to see an epileptologist at Mayo in Arizona to check possibilities of CBD. He is taking Epidiolex (if I am not mistaken, I do understand that this is the only CBD approved by the FDA) for over 1 year and has been seizure free since then. If she would not be in a delicate situation (her mother is going through a difficult cancer treatment right now), I would put you both in contact. But perhaps others here in our group can help you.
With Love!
Chris/Santosha

@tlb101175
I agree with Chris @santosha
Last I checked Epidiolex cost around $32,000 a year however there are Mayo members who are getting it at lower costs through programs from the manufacturer. Although copays vary, one person pays $25.00 a month. This medication is FDA approved for 2 Epilepsy syndromes, Lennox-Gastaut syndrome and Dravet syndrome.
But I’ve heard some physicians give it for other Epilepsy conditions.
There is someone here with Lennox-Gastaut syndrome and tried Epidiolex but it wasn’t as effective as non prescription CBD products.
If your doctor orders it ask if it’s a full spectrum product.
Like medications the effectiveness of CBD varies.
Take care,
Jake