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Post by caveman on Jan 14, 2016 15:01:43 GMT -6
Will do.
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Post by Richard Ramsey on Jan 14, 2016 16:41:13 GMT -6
I am Ben's dad and Caveman's SIL and I just wanted to thank everyone for the prayers and kind words, it means a lot to know that we have support during this. I would like to thank Phil for opening up this forum to us and for his help. We know we still have a long way to go, so we are just taking it one day at a time.
A brief history of what Ben has been through. He had his first Grand Mal seizure at 13 months and continued having them until he was three. His seizures changed to Absence until a year and a half ago then they reverted back to Grand Mal again. He has been on at least 12 different seizure medications and none have helped. We have talked to the doctors about CBD but it has not been shown to work with his condition. It has been successful in other conditions, like Dravet's Syndrome. If I thought it would help he would be on it.
We are pleased with the doctors he has now. They have done more for him in this past month than his old doctors did in almost seven years. We have faith in them and they are genuinely compassionate about what we have been through and they really care about Ben. This surgery was the last thing we wanted but they are dotting every I and crossing every T before they make a move. They aren't rushing anything which is a great thing.
Sorry for rambling but I felt that you would like to know what is going on. Again thank you all and thank you Phil and I will try and keep you updated as we progress through the procedures.
Sincerely,
Richard Ramsey
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Post by ChileFarmer on Jan 14, 2016 18:27:43 GMT -6
Cavey, I am praying that these new Dr. can help him, Also praying for you and the family. Bill
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Post by spuds on Jan 14, 2016 20:00:52 GMT -6
Richard,thanks for the update.
Im a nurse and can tell you this,if it isnt conventional medicine Dr's will NOT ever admit or even entertain the idea that something not in their cornucopia of treatments will work.Its beyond their ability to comprehend,and that prejudice is ingrained and runs very deep.If it doesnt have FDA,AMA or big pharma seal of approval their eyes are locked shut.
Hopefully ya'll can get Peanut under control with their treatments,if they dont,start trying other avenues.There are plenty safe routes to try,you have very little to lose and a LOT to potentially gain.
My Herbalist neighbor beat leukemia,VA tells him its impossible,they must have misdiagnosed him.Thats how hard/far they will go to not have their values questioned.
Then they mucked up his back surgery.Instead of finding the cause,they turned him into a narcotic addict,then refused to treat his pain further,he is just a narcotic seeker they tell him,and label him!This went on for YEARS!!!!
So I SENT HIM TO THEIR ER ALMOST DAILY,FOR 2 MONTHS UNTIL THEY finally did an MRI or CT scan,I forget which(Hehe,they got tired of seeing him,giving him a shot of demerol and sending him home) And found the cage on his spine had collapsed.Into surgery the NEXT DAY!!!
So his back is fixed,now he is a narcotic addict,big time.I mean BIG TIME!!!He used medicinal pot to withdraw from narcs(Wont find THAT in any accepted medical literature),and in 60 days or so was off all narcs.His legs were swollen up because he was in heart failure from all the narcotics,not any more,but he does have nerve damage and poor circulation issues in his legs now,but it is HUGELY better overall from where he was.He has a functional life now.Before they were killing him!!
Now he eats 2 pot cookies a day for the pain thats left and now is so much healthier its truly life changing.
And Im no flag waving pot cures everything cheerleader,but thats his story with treating outside the accepted box.
THATS what conventional medicine can do to people.
My prayers continue for you all.
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Post by Pharmer Phil on Jan 15, 2016 5:56:42 GMT -6
Richard,thanks for the update. Im a nurse and can tell you this,if it isnt conventional medicine Dr's will NOT ever admit or even entertain the idea that something not in their cornucopia of treatments will work.Its beyond their ability to comprehend,and that prejudice is ingrained and runs very deep.If it doesnt have FDA,AMA or big pharma seal of approval their eyes are locked shut. Hopefully ya'll can get Peanut under control with their treatments,if they dont,start trying other avenues.There are plenty safe routes to try,you have very little to lose and a LOT to potentially gain. My Herbalist neighbor beat leukemia,VA tells him its impossible,they must have misdiagnosed him.Thats how hard/far they will go to not have their values questioned. Then they mucked up his back surgery.Instead of finding the cause,they turned him into a narcotic addict,then refused to treat his pain further,he is just a narcotic seeker they tell him,and label him!This went on for YEARS!!!! So I SENT HIM TO THEIR ER ALMOST DAILY,FOR 2 MONTHS UNTIL THEY finally did an MRI or CT scan,I forget which(Hehe,they got tired of seeing him,giving him a shot of demerol and sending him home) And found the cage on his spine had collapsed.Into surgery the NEXT DAY!!! So his back is fixed,now he is a narcotic addict,big time.I mean BIG TIME!!!He used medicinal pot to withdraw from narcs(Wont find THAT in any accepted medical literature),and in 60 days or so was off all narcs.His legs were swollen up because he was in heart failure from all the narcotics,not any more,but he does have nerve damage and poor circulation issues in his legs now,but it is HUGELY better overall from where he was.He has a functional life now.Before they were killing him!! Now he eats 2 pot cookies a day for the pain thats left and now is so much healthier its truly life changing. And Im no flag waving pot cures everything cheerleader,but thats his story with treating outside the accepted box. THATS what conventional medicine can do to people. My prayers continue for you all. Spuds..this is one of those posts that even IF..it was "skimmed" over (which it was not) The next to last sentence..would make you read the whole thing over.. Exactly...I've seen this scenario, too many times... they just keep prescribing..and soon the body is a chemical stew..just waiting to become more health issues and leaving a person..drug dependent .sick..all while Lining the Big Pharmacies pockets.... Excellent Post tky
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Post by Pharmer Phil on Jan 15, 2016 6:08:58 GMT -6
Richard, glad yo stopped in, No thanks needed My friend..we are all praying for Ben and Ya'll...we'll be here for updates..Good updates..or, perish the thought bad.. or to just lend an ear... Phorum Phamily... I have no idea how many of Us use the "social Networks" but if You do, Could You Please, for Peanut(Ben), Richard and the family...share the link below on your account...Thanks Pholks www.gofundme.com/webexr8cor, for that matter...You could share the link to this thread... pharmerphil.proboards.com/thread/16964/grandson-peanut?page=2
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Post by Richard Ramsey on Jan 15, 2016 10:27:36 GMT -6
My wife is an RN and I work at a college we have looked at different treatments and talked with very informed people in and out of the medical field.
We are both pro legalization and feel that it is safer than 90% of the drugs prescribed today. Our problem is not only is most people saying that for the type of epilepsy Ben has it probably will not work but finding a doctor that will be willing to prescribe it.
If we try to give it to him on our own we take the risk of him being taken away from us or us being put in jail and losing everything we worked so hard to achieve. It truly is a sad place to be. We are not taking this lightly and we are not rushing into anything.
Again thank you all for everything. You all are great people.
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Post by spuds on Jan 15, 2016 13:18:16 GMT -6
My wife is an RN and I work at a college we have looked at different treatments and talked with very informed people in and out of the medical field. We are both pro legalization and feel that it is safer than 90% of the drugs prescribed today. Our problem is not only is most people saying that for the type of epilepsy Ben has it probably will not work but finding a doctor that will be willing to prescribe it. If we try to give it to him on our own we take the risk of him being taken away from us or us being put in jail and losing everything we worked so hard to achieve. It truly is a sad place to be. We are not taking this lightly and we are not rushing into anything. Again thank you all for everything. You all are great people. Understand fully.You make the decisions you feel are appropriate.I dont know of much of any medically approved studies on MJ and seizures,or any thing else for that matter.Studies just arent being done.So I dont know what studies they are quoting to you.As for legal risks,yes,they are stupid high for sure,especially on children.Your point is well taken and understood.But if conventional medicine doesnt do the trick,become the research King and Queen for alternatives is all Im saying. Here is an example,and why its so hard to get any MJ treatments,or non traditional treatments for that matter.... time.com/pot-kids/And yet there is little science about the safety or efficacy of treating children with CBD. Medical marijuana is legal in 23 states, but federal law still classifies the plant as a Schedule 1 drug, “with no currently accepted medical use and a high potential for abuse,” according to the Drug Enforcement Agency. (Heroin and LSD are also Schedule 1 drugs.) This means that, even though doctors and researchers have suspected for decades that some compounds in marijuana might effectively treat epilepsy and other hard-to-cure conditions, independent clinical trials that include human subjects—let alone minors—are scant and require approval from three separate federal agencies. Since 1999, these agencies have approved just 16 independent studies of medical marijuana on humans. The lack of research presents a kind of catch-22: Without much scientific study of marijuana, the government has been unwilling to recategorize the drug. But the categorization as a Schedule 1 drug makes testing it on humans extremely difficult. This also presents parents with little expert advice. “The only guidance we were getting was the community on Facebook,”
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Post by Richard Ramsey on Jan 15, 2016 18:44:56 GMT -6
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Post by spuds on Jan 16, 2016 0:35:31 GMT -6
Good luck Folks.Our prayers surely continue.
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Post by w8in4dave on Jan 17, 2016 13:18:27 GMT -6
Prayers for peanut!!
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Post by Richard Ramsey on Feb 2, 2016 13:58:40 GMT -6
I just wanted you all to know that we received the call today form the hospital and we go up for the conference with the doctors on Friday the 12th. We want to thank you all for your kind words and support for us. We will be sure to let you know what is said and what we are planning to do. Thank you again.
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Post by spuds on Feb 2, 2016 18:02:06 GMT -6
Prayers sent Richard.
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Post by w8in4dave on Feb 3, 2016 8:16:40 GMT -6
Prayers your way.....
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Post by Richard Ramsey on Feb 22, 2016 10:18:36 GMT -6
Sorry that I had not posted sooner but we found out the date for his surgery is set for Wednesday March 2. We have to be there at 7:00 a.m. The surgery he is having performed is called left temporal lobe resection and they will also be removing his left hippocampus and amygdala. He will be in the hospital for up to a week after the surgery and out of school up to three weeks as long as there are no complications. We ask that you keep him and us in your thoughts and prayers as we go through this. Thank you all for the kind words.
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Post by Penny on Feb 22, 2016 11:45:36 GMT -6
Continued prayers
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Post by spuds on Feb 22, 2016 12:00:57 GMT -6
Richard,we will be praying for him and all.So tough for the little guy.
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Post by w8in4dave on Feb 23, 2016 8:21:34 GMT -6
Absolutely prayers sent!
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Post by caveman on Mar 4, 2016 10:58:00 GMT -6
I hope and pray my little buddy will be fine and gets to come home soon.
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Post by Rita on Mar 4, 2016 16:55:56 GMT -6
My well thoughts to the little dude .. Man that has to be so hard for you and all your family .. Get well soon Little Man
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Post by Pharmer Phil on Mar 5, 2016 7:17:41 GMT -6
Dang if it don't pain me to look at the lil pheller like this Cavey...all I can do not to cry...Please God look after Peanut...sure hope we can see a smiling boy in the next few weeks Cavey...Love going out to all...
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Post by Colorado on Mar 5, 2016 19:30:22 GMT -6
Hope every thing is fine with Peanut.
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Post by caveman on Mar 6, 2016 17:07:32 GMT -6
If all keeps going well my little buddy will be home within a day or two.
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Post by ChileFarmer on Mar 6, 2016 17:37:36 GMT -6
Good news cavey, still praying for all of you, especially the peanut. CF
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Post by Richard Ramsey on Mar 7, 2016 6:09:28 GMT -6
Sorry for not posting sooner but Ben had that resection surgery done Wednesday March 2 and he is doing good. He is still having considerable pain but he is up playing and is in good spirits. It's amazing how resilient kids are. We want to thank everyone for your support, kind words, and prayers. We love you all and this would have been so much harder without you. I know we still have a long road ahead of us but we will get through it. Thank you Phil and the rest of the forum for everything. everything.
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Post by w8in4dave on Mar 7, 2016 8:24:05 GMT -6
Im so glad to hear he is doing good! Kids are amazing arn't they! I will continue to pray for him. Thanks for the update.
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Post by spuds on Mar 7, 2016 15:26:20 GMT -6
You are in all my prayers.
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Post by caveman on Mar 7, 2016 17:09:07 GMT -6
Yee Haw......Peanut is home.....lookin good and seems to be doin just fine.
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Post by Rita on Mar 7, 2016 17:25:34 GMT -6
Yee Haw......Peanut is home.....lookin good and seems to be doin just fine. I am so happy for you all .. I hope he continues to heal quickly !!!
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Post by Colorado on Mar 7, 2016 17:58:12 GMT -6
That is good news. They sire get them out fast now days.
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