What do you do with a child who refuses treatment?

[Joan Pandas Mom]

Does anyone know what I can do as a parent of a 16 year old who is so sick he won't take prescribed abx. won't go for IVIG or Plasmaphoresis until after a certain date because of OCD?

[MomWithOCDSon]

Oh Joan, I'm so sorry. I wish I had some great idea(s) for you, but all I really have to offer is some support.

 

I recall that Sammy Maloney was refusing to take his meds for a time, hiding them in the couch cushions instead. I don't remember Beth being specific about how she got him to take them again finally. Any chance they could be powdered up and put into food or drink? It sounds sort of lame, I know, and I'm guessing you've tried that.

 

Have you or your doctors looked into the whole glutamate antagonist drug response for "treatment-resistant OCD"? I've been doing a lot of reading on that lately and have recently corresponded with Dr. Grant at NIMH and Dr. Rosenberg at Wayne State with respect to the role of glutamate and what treatments like riluzole, NAC, taurine and potentially even beta-lactam antibiotics bring to the table. I suppose if your son is unwilling to take anything, then even that option isn't available to you right now.

 

But you wonder, if he were to finally take something that actually made him feel better, would he then be willing to continue to take it? Or is the "OCD alternate reality" so firmly ensconced right now that even that logic would fail with him?

 

Hang in there!! And call in all your resources. If you were to take him, right away, for plasmapheresis, would the doctor's office/hospital help you get it done, even if restraints were required initially? Or would they turn you away because he would raise too much of a ruckus?

[peglem]

Gosh, I'm sorry I've got no help for you. I wonder if the anti-drugs crusades at schools creates a fear of drugs for some of our kids like the "safety units" have done for my child. She goes nutso every time she sees a warning notice posted somewhere- this is where her fear of elevators comes from- those warning notices about in case of fire use the stairs. My hub was installing a new hot water heater last night. Took me a few minutes to figure out why she kept rushing over and trying to pull dad away from it...then I saw the warning notice on the side.

[Phasmid]

I am not at all above BRIBERY and use it often. It gets expensive, but I have had to use it in the following cases:

 

• taking meds
• getting allergy shots
• getting IVIG
• going to dentist

I don't know what monster I'm creating for the future, but right now it does the trick! Like I said, it gets expensive, so be careful what you "trade" for!

 

 

[dabel]

I have this problem with my son too! It is soooo frustrating! Once they hit a certain size you can't really force them to do it anymore. I have no words of wisdom for you either but I can just tell you that you are not alone! My son is not giving me a date or anything he is just plain sick of this whole thing, does not care any more, and will not take ANYTHING! I have considered putting him in patient but to get him to cooperate but that comes with it's own set of issues. I hope the date he is giving you is not too far off and if you think of a way to get him on board I would love to know. I have tried threats and bribery but to no avail! I am really worried and frustrated with the situation as I assume you are too!

[nicklemama]

It costs me a trip to Toys R Us every time my DS gets blood drawn. I'm not above it either to get the job done. Can you set up a plan where if meds are taken for x amount of days, some sort of reward is given? Now that DS is stable on abx, its not hard to get him to the dr. Before abx, I did it on a wing and a prayer.

[amyjoy]

I'm not sure i have a solution but i'm sure sorry you are having to find one.

and i hope he is at least bribe-able.

at 16, i guess the days of sticker-charts are long gone.

[Ozimum]

My heart goes out to you. I have a friend who has a 19yo son and a 15yo daughter neither of whom can be persuaded to take anything, so I've got an inkling of what you're dealing with. My ds has recently turned 17 and he had his worst time last year and it took months to recover. That time he suffered chronic fatigue as well, and I think it really scared him as to just how sick he was. Thankfully he listens to his Biomed/DAN doctor (certainly not me!) who hasn't steered him wrong. He's doing well now. I wish I had an answer for you. Hope things improve soon.

[emmalily]

Does anyone know what I can do as a parent of a 16 year old who is so sick he won't take prescribed abx. won't go for IVIG or Plasmaphoresis until after a certain date because of OCD?

 

hi, just wanted to say i'd be willing to talk to your son (e-mail, IM, whatever) and tell him how antibiotics have helped me if you thought that might be helpful in getting him to be compliant with treatment. i honestly don't know if it would do much if it's the OCD that's holding him back, but i thought i'd offer anyway.

 

emmalily

[EAMom]

OH...I like the idea of getting a teenage girl (or two) to put some pressure on your son. (maybe emerson too?) he he

 

 

I'm sure girls are better than sticker charts at that age. Okay...I'll stop now.

[browneyesmom]

OH...I like the idea of getting a teenage girl (or two) to put some pressure on your son. (maybe emerson too?) he he

 

 

I'm sure girls are better than sticker charts at that age. Okay...I'll stop now.

 

hehehe... I think you're on to something... great suggestion, EmmaLily!

[Joan Pandas Mom]

Thanks for the help. I was going to try to put it into his food, but he is getting too thin and if I get caught, I'm afraid he won't eat anything. The date he said he can take them is 2 weeks away. If I wait, do we run the risk of the faulty antibodies growing? OCD is telling him if he changes anything right now something really scary will happen. He won't tell me the obsession.

[Joan Pandas Mom]

Emmalily, I'm going to take you up on that. It might help. I'll pm you my phone #. At times OCD won't let him talk, but he can listen! Thank you.

[rockytop]

Hi Joan,

I wish I could say something to help you- but just here to sympathize. My almost 13 yo is in the same boat- refuses EVERYTHING. She has been scheduled for pex, ordered IVIG & all sorts of meds and now refuses everything.

 

So we have been doing nothing, but trying to be patient, loving and getting as much semi-nutritious food into her.

 

She even has watched as her younger sister got pex a month ago and is getting better.

 

sometimes inaction is more painful than anything, i think, as hope starts to fade

 

Thinking about you and praying for all PANDAS familes every day-

Edited May 26, 2011 by rockytop

[MomWithOCDSon]

Thanks for the help. I was going to try to put it into his food, but he is getting too thin and if I get caught, I'm afraid he won't eat anything. The date he said he can take them is 2 weeks away. If I wait, do we run the risk of the faulty antibodies growing? OCD is telling him if he changes anything right now something really scary will happen. He won't tell me the obsession.

 

Any chance you could start nicking away at those obsessions bit by bit, starting with a less intense one and working your way up from there. "Bust" his OCD logic by disproving the imagined consequences of doing something his obsession demands that he can't do? Say, for instance, he can't use the second step from the bottom "or else;" if you could get him to use that second step and then experience the absence of the consequence, would he be able to recognize that? Then maybe you could work toward the next obsession?

 

I recall that you guys have tried a lot of treatments and therapies to contend with the OCD; is he in therapy now? Will he "work" his therapy exercises? Could the therapist maybe get through to him on this?