By this time, we were giving Rhythm .3ml twice a day and .2ml once a day of Haleigh's Hope. Our options now were to work with the dosage and potentially the strength of the CBD Oil. The strength we were on was 20:1, which means a strain ratio of 20 CBD to 1 THC. It is a very low THC strain, which has allowed Haleigh's Hope to be a legal supplement that can be shipped to all 50 states. This particular ratio has been shown effective in treating anxiety, cerebral palsy, depression, and epilepsy. We had 2 other options for strain ratios - 15:1 and 10:1. In both cases, the CBD becomes less, so that did not seem like a viable option for us, as it was the CBD that was the effective element of the Haleigh's Hope treatment.
Then we found out something that had not occurred to us. We started to read about TOO MUCH CBD Oil bringing on myoclonic seizures in epilepsy patients. We were giving Rhythm a total of .8ml during the course of the day over three different intervals. We decided to pull back on the dosage we were giving her to see if that had an effect. Our new dosage would be .3ml in the morning and then .3ml in the evening. We had also ordered a multi-vitamin to start giving Rhythm as well. We did that because it was a standard need for any child, but because of Rhythm's eating patterns, we wanted to make sure she was getting the vitamins she needs.
Then it happened. They stopped. The seizures all stopped. The day after we started giving Rhythm the multi-vitamin along with the adjusted dosage of Haleigh's Hope, the seizures just stopped. We were stunned. We watched her closely, and there was no trace of the myoclonic seizures. Days and weeks passed, and no seizures. Along with that, we started to see better eye contact, significantly better head and neck control, and more courage to get into a crawling position. Was this combination of Haleigh's Hope and the multi-vitamin the answer?
A closer look at the multi-vitamin may give us some insight. Please take a minute to read this article on Vitamin B6. Although a deficiency of Vitamin B6 can be a cause of seizures, that has never been directly linked to Rhythm's case. However, the multi-vitamin we started giving her had 286% of the recommended dosage of B6 for a child Rhythm's age. Could it be that a lack of Vitamin B6, or depletion of that vitamin because of the seizures, be culprits in the continuation of her seizures up until this point?
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We have been diligently giving her the Haleigh's Hope and the multi-vitamin every day for over the last two months, and Rhythm has been seizure free that entire time. Was it a miracle? Was this the right combination we needed all along? Was this a coincidence? Will the seizures come back? We don't know the answers to any of these questions. All we know is that Rhythm has not had a seizure for over two months, and we don't ever want them to come back.
You are now caught up to Rhythm's story. Our journey to this point has been filled with devastation, hope, discovery, fear, anxiety and anguish. But no matter what, Rhythm has and will always have two parents and many family, friends and fans that will be giving her love, support and prayers. They will cheer every milestone in this long road ahead. And that's where we go next in this journey. Catching Rhythm up to all of the joy and wonder of simple things like crawling, walking and talking.
Thank you for following her story so far. Please share this blog with anyone you feel would be touched by this story or learn something that can help them in a situation they may be in with Epilepsy.
NEXT BLOG POST: THE FIVE THERAPIES
I'm so happy for you, thank you for sharing it. It's so good to read these stories, thank you. A hug from Argentina.
ReplyDeleteThank you so much! A big hug back :-)
DeleteI've seen the great importance of natural supplements and the wonderful work dr idedia have done in people's lives. I wonder why people still spend their money on medical drugs each time they are sick. Natural herbs can cure all kinds of illness. My son epilepsy was totally cure with the help of dr idedia natural herbs. Earlier this year my son was affected with epilepsy i was so sad because of his situation, a friend of mine introduce me to dr idedia i contact him through dr.idediatraditionalhealinghome@gmail.com i told him my problem about my son and i Purchased his herbal product When I received the herbal medicine I give it to my son as instructed my son is totally free from epilepsy i am so happy now you have to contact him if you need his help. email: dr.idediatraditionalhealinghome@gmail.com whatsapp: +2349074505296
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So glad to hear Rhythm has been seizure free. I will continue to pray you have found the right combination of therapies to stop her seizures.
ReplyDeleteThank you Peg :-)
DeleteI came across this on a FB page :) what a miracle I'm so happy she is doing well and what a cutie with such a nice smile :)
ReplyDeleteThank you so much, Laura. We love that smile :-)
DeleteLivin24/7@G+ I am so happy for you to have found a cure for your daughter so young. This gives you endless possibilities!I am so happy for you . I will share this in my Epilepsy Experience Alliance forum .💜🙋
ReplyDeleteThank you so much - we really hope that this formula we've stumbled upon really makes the difference. So far so good! Would love to know more about your forum.
DeleteWow. This is encouraging. Especially as we begin the process of weaning our daughter off pharmaceuticals. We have received a lot of push back from her neurologists but the truth is we haven’t seen improvements and the side effects have been horrible. We hope to have a miracle like yours with the oil. God bless your Rhythm.
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ReplyDeleteIf you can find a local naturopathic doctor to be in contact with that’s familiar in treatment of epilepsy using CBD oils, I would highly recommend it. Because my child also has infantile spasms and he has been seizure free for 10 months using Charlottes Web Everyday Advanced Hemp Oil, which is a high CBD oil as well and federally legal. But he recently relapsed - we have heard some children building up a tolerance to CBD and having to do a detox every year or dose adjustments yearly. I’ve also heard of some children having to switch to a medical marijuana strain instead of a hemp oil CBD supplement. I’ve also heard about certain strains of cannabis failing after a similar period of time (8-16 months) and patients having to alternate between MMJ strains to maintain seizure control. Our son is “cryptogenic” and was diagnosed at 3 months with Infantile Spasms (hypsarrythmia via EEG), diagnosed as “cryptogenic” (the rare 30% with no known cause and we did all the testing from mri, metabolic down to chromosomal microarray and DNA sequencing). He was the. diagnosed as “refractory” or “pharmaceutico-resistant” at 14 Months; we exhausted all pharmaceuticals, literally all of them, (including a vitamin B6 supplement called Pyridoxine, which is a popular treatment for infantile spasms in Japan),and met with a naturopathic doc for natural recommendations. We achieved control 6 weeks after starting a hemp oil CBD rich supplement at 20 Months, the one I referenced earlier. We kept our son on one anti-seizure medication: the only one that seems to lessen the seizures but not control them (it reduced them from 5000 to about 1500 a day, and this was at the max dose) and from our therapists and other parents we have heard about children who have been taken off all their anti-seizure medications and relapsed after several months of CBD oil because of it - so we wanted to make sure we had our back up plan in place. Clobazam(ONFI) has a direct drug to drug interaction with CBD (via P450 enzyme) but it seems to be the only drug with research and evidence supporting that it combined with CBD helps achieve seizure control in infantile spasms patients - I found all this out on my own by doing extensive research. A direct drug-to-drug interaction with CBD, caused us to do some major those adjustments to the medication upon starting CBD (reduced to 1/4 dose because the drug-to-drug interaction with clobazam reaches 400% strength by 2-4 weeks) but it seems to be the only drug with research and evidence supporting that combined with CBD helps achieve seizure control in infantile spasms patients. In regards to the multivitamin we happen to start a calcium supplement (we already had our son on a multivitamin) at the same time of the CBD so we weren’t sure which one it was at first either and we’ve heard of calcium channel blocker‘s being a cause/trigger for seizures (even tho our son tested negative for that cause) along with the vitamin B deficiencies. I would highly recommend you get your daughters blood tested to make sure she doesn’t have toxic levels of B6 and follow them just in case. For many patients based on the research in Japan, the vitamin B six supplement, in addition to other treatments combined together, sometimes stop seizures. I am posting this because I wanted to congratulate you, encourage you and caution you because we too achieved so much happiness when our son seizures came under control from the CBD treatment because he went from not even being able to sit up without a Boppy pillow at 14 Months to crawling, climbing, standing, full on walking and running within 6-8 months. Six weeks after starting the CBD treatment his EEG looked perfect, the hypsarrhythmia was gone!... Now we feel like we’re back at square one - and even though his brain is protected despite his seizures returning via CBD, It doesn’t make it any less upsetting, because now his EEG is abnormal again at all times as well: now we have to research detoxing/dose readjustments, alternatives to hemp oil CBD, different strains and CBD vs THCA vs THC/CBD.
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ReplyDeleteI myself have epilepsy. Not to this extreme with grand mail seizures daily, but it still affects me in other ways daily. I am on medicine, which has slowly stopped working and I notice my twitches, blank stares, and memory loss (even in the midst of a sentence) starting to return. The side effects of this drug is noticeable and painful to deal with. It is so strong that if a normal person were to take my dose, they will die of an overdose.when i was going through the internet i come across Owens post thanking Dr Lewis hill for curing his seizure problem, and i got the contact of Dr Lewis hill and i quickly contacted him then he made me to know that the medication is 100% cure, and that was how i got the medicine which i used, after which i went for medical test It worked! Over a year now, i have not show any symptoms of seizure and I believe that am cure permanently if you need his help email him on, drlewishill247@gmail.com
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