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Ideas on getting 12 yo to take medicine or get treatment?


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My son has been sick for a couple of years and has been treated for PANDAS/PANS since Feb. 2015. He has gotten a bit better in the sense that the violent rages and content attempts at suicide have subsided. Now he just talks about it and sits in the basement. He used to take medicine easily and we could get him to appointments. Now he has decided there is no hope and he does not trust any of the doctors. He is terrified of hospitals and needles (didn't used to be". Getting him to take any pills is really difficult. He has been on many meds and I think he is just sick of it. He says he can no longer sallow them - they make him choke.

I manage to get him to take one or two usually at night - sometimes I can do morning an night. What I focus on has shifted a bit depending on what I am trying. I will get him just about anything he wants to drink it down - even decaf soda, choc milk, whatever he wants at this point and it is still a battle.

 

Now they are recommending Rituximab and he refuses. It was hard enough to get eh IVIG - he freaked out and had to be held down and sedated, and the PEX - ithey refused to do it the first time because he threatened to pull the line out - it took a month of gearing him up for it and meds to calm him in order to get him to cooperate.

 

Any ideas on getting him to do this? or to take meds? I see lots of recommendations for herbs and vitamins but I can't even get him to take the antibiotic or advil (which does seem to help) anymore..

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if you mean how to do it physically, apple sauce is a great help in swellowing pills

if you mean behavior, we do reward We take away what he likes most whcih is screen time if he does not want to take medecine

Unfortunately, to get better PANDAs kid needs to be able to take medecine

best of luck

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You have my sympathy! These are just a few things that occurred to me at random:

 

If he doesn't want to take them because he doesn't think they'll work, ask him to just take them to please you, whatever he personally thinks of them.

 

The needle thing - you can either not want to have an injection, or you can really want to, consciously, but not be able to bring yourself to do it. (I know because I'm in the second situation myself!) From the sound of it, with your son it's probably both. As far as the second thing goes, I've heard that hypnotherapy can work astonishingly well for needle phobia, in children especially (see for example http://onlinelibrary.wiley.com/doi/10.1111/j.1460-9592.2007.02224.x/abstract ; I can't find a full version available to non-subscribers unfortunately, only the abstract, though you may have better luck. I came across the full version during my degree course but no longer have access). First you'd have to convince him it's worth bothering to try, though.

 

Feels there is no hope; I can see how that could happen after a long stint of PANDAS treatments... but I also do notice that if I'm short of B vitamins I feel even more like that - at least, taking a B complex makes me feel a lot better within a couple of hours, in that I'm able to think much more rationally about the whole thing and whether there is or is not any point based on the actual facts, rather than on how tired I am at the time. That was just an ordinary B complex with RDA levels of everything.

 

The pill problem: There are some things you can take as liquids, would he take those? Ibuprofen is available in liquid forms. I'm currently taking 5-methylfolate and hydroxy-B12 for a MTHFR issue and those are both in drops, from http://holisticheal.com/ - they may have other things available in that form too. And there's someone over on this thread who says dark chocolate helps her son during a flare, so if that works for him then even he shouldn't object to eating chocolate, whether it "works" for the PANDAS or not! or a mug of plain cocoa would probably work too (and tastes nice). A lot of the liquid/powder supplements I take are only a drop or so of each thing, so (where they're OK to be taken at the same time of day) I tend to just mix them all into one glass of juice and drink that - solves the can't-be-bothered problem!

 

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Thanks! Helpful. I have been wondering about Hypnotherapy. It would be tricky to convince him of it but I will try. Depending on the day he can be very rational. I am also going to try the B complex. of course I need to get him to take it but I have seen several people talk about it and it seems worth a try.

 

I have tried the hot chocolate - it worked for a while. Now he says that it has ruined hot chocolate for him. anyway - I will just keep trying different things. He destine them eventually - it is just a battle and he is pretty good at knowing what is what so he chooses what to leave out - usually the advil or melatonin until he is desperate to get to sleep.

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no problem, glad to know. Once something starts working for him again, maybe he'll feel happier about taking stuff :-) Incidentally I don't know if you've looked into the methylation/DNA mutations angle at all but that's a saliva test and the treatment is mostly diet adjustments and supplements that are drops, so that'd be doable for your son (so long as his patience holds out!). If interested there are links on the second page of the Helpful Threads sticky thread, or most of the basics have come up in my recent "Need CBS advice" thread by now!

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Sorry, only just seen this. https://www.23andme.com/ You send off for a kit (i.e. sample bottle and prepaid box to send it back to the lab in). It's $99 and takes several weeks to report back, but it does give nearly all the relevant mutations (you can run the results through another website, free, to pick those out, see http://latitudes.org...789#entry180761 ).

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