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jon019

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jon019 last won the day on February 22

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About jon019

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  1. My 3 yr old grandson was finally diagnosed with cluster headaches last month.  They began around his 3rd birthday in August and he continues in the cycle today.  All  medical tests, MRI, CT's etc are normal.  He is seeing a pediatric neurology specialist at UCSF.   His symptoms are text book except he is 3 :-(  We are devastated.  I know we are very early in his treatment, but this is killing all of us.  The thought of giving a 3 yr old a federal schedule 1 drug is almost insane, but....  Have you heard of any representatives of toddlers in this forum?  We really want to talk to someone who has tried alternative treatment on a young child.   

    1. jon019

      jon019

      hi Gonga...that is gut wrenching and i'm sure a helpless feeling. it's bad enough for an adult who at least can have some semblance of understanding of ch (very little at that)....i cannot imagine what it is like for a child...

      ...you have posted this to my personal profile...i would recommend posting to the main board as you are more likely to get responses (suggest/request personal pm's as this is a touchy subject that folks may be more comfortable discussing one on one)...

      ...my knowledge of the alternatives used by folks on this forum is extremely limited and it would be a disservice for me to comment...especially as regards a child...

      ...one other thought...there is a forum called clusterheadaches.com that has been active for 20 yrs (free to join and use though minimally active currently)....there have been occasional discussions of child clusterheads and maybe you can find someone with experience....use the search function also to look for past discussions..

      regards

      jonathan

       

       

    2. Gonga

      Gonga

      Thank You.  My daughter is on here too and she also reached out today to the group.  I have faith this will work.  The shrooms grow in their yard!  There has to be a reason for that right? What concerns me most is the dosing and product control.  I work with clients who fried their brain years ago, and they are so damaged.   He is so beautiful and loving. Thank you again.  

    3. jon019

      jon019

      hi Gonga...

      ...have not seen any posts here re a child...must be on a FB site....here would be better for advice on mushrooms...

      ...re mushrooms, i was a food scientist but have minimal knowledge of psychoactive substances...my initial thoughts:

      ....mushrooms in a yard are HIGHLY unlikely to be the 'right" kind...

      ....even if the right kind, active ingredient content is UNKNOWN/probably unknowable...and dosage is CRITICAL...

      ....the folks here mostly grow their own.....truly the only way to know what you are getting

      ...prep of the raw product is EVERYTHING to its efficacy.....even with all other things being perfect, the wrong prep/storage will destroy the active ingredient....

      ....self awareness is vital to the experience/effct...i don't believe a child can fathom an out of "right' mind experience...

      ...additionally, understanding the experience and adjusting timing/dosage/frequency all require the self awareness a child (or an unprepared adult) does not possess...

      ...i totally understand your frustration and desperation....we clusterheads view our supporters as having it WORSE than us...which makes them golden...

      ...be a shoulder for your daughter/son in law and grand baby....and i would strongly urge you to give the docs wide latitude....no one can look at a 3 yr old with this condition and not do everything in their power to heal..

      best

      jonathan

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