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Taylork1776

Vitamin D Regimen for an 8 year old

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My son who is 8 and also a minimally verbal autistic was diagnosed yesterday with Cluster Headaches.  He has had them since he was 4 but when went through a long list of Nasal/Allergy related things before we got to the right Doctor.  I have followed the facebook page for awhile but I wanted to know if there is anything specific to children?  What would be the best preventative?  Is there a different dosage on the Vitamin D Regimen Etc.  The neurologist wants to try a few injections of 3mm of Imitrex just to be sure they are indeed clusters and not a similar type of headache.  He did mention Oxygen at 10 lpm for 20 minutes, amitriptyline and topamax.  I am not interested in using topamax after what I have read about it.   The oxygen might be a miss to because he dosen't like things on him and would not really understand.  Is there a video of how to do the oxygen?  10 points if it includes spongebob.  The Dr. told me to look into everything, he seems to be willing to help in anyway possible.  So any advice is appreciated.

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That's really tough, Taylor'.  I'm sorry.   I am hoping that Batch, who developed the D3 regimen, will see your post and respond.  I am going to send you his email address by a private message, so you can reach him in that way.

This is a video about O2 use. It will give you the key information, but I don't know how much it will help you, even if the guy might look a little like Spongebob (????).  https://www.youtube.com/watch?v=PtFHRIQN17s&t=273s

There was a person here a few years old with an autistic child with CH ("an odd form of autism," the person said).  This is a thread from then https://clusterbusters.org/forums/topic/4506-cluster-headaches-or-migraines-having-difficulty-getting-a-diagnosis/?tab=comments#comment-48715.  You might try reaching that person, "tonic," by sending a private message.  To do that, click on the envelope icon on any page (top right) and type tonic into the "To" space.

I think D3 is probably your best bet. My sense is that 3mg of sumatriptan (Imitrex) is probably more than needed. Most adults with CH can abort an attack with 2mg, even though the Imitrex autoinjector is 6mg. (Your doctor probably doesn't know this about the 2mg usually being sufficient; it's "citizen science," not formal medical research (as far as I know).)  3mg is likely to be a pretty big jolt.  (There is a "similar type of headache" (a hemicrania) that is sometimes not responsive to triptans, so the test makes some sense.)  I'm a little surprised that the doc isn't trying verapamil first before those other two meds, because in my mind its effects are less severe, but maybe there's a reason.

 

 

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My 11 year old ( at about 66 lbs) has been on 5000 IU (Now Softgels)  Vitamin D3 for the past 1.5 months for boosting immunity.  I put it in yogurt and granola at breakfast.

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I'm sorry Taylor, this sounds rough. I am an admin in finnish CH community on Facebook. In 8 years we have only had few parents posting that their child has cluster headache. It is my understanding that using medications with children should be more careful than with adults but this does not always happen. I can't remember has someone had any guidance for dosing.

I personally would not even dare to consider some medications which are terrifying even in adults (like topamax) and certainly practise great care with serious abortatives like triptans.

I too think D3 regimen (Anti-inflammatory regimen) is the best (safest) way to go. Batch will help and tell more.

I think CH community would urgently need something for parents so that they could learn from parents who have gone through same things.

Could admins here set up a dedicated thread for this ? I could guide our parents here.

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