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teenager does not want treatment


Rowens1214
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Hi all. I was hopeful that Emerson would give me her input on this and also others of teens. My 15 just got diagnoised with PANDAS this past May. He has had the classic symptons for the last 7 years.

 

He has refused to get IVIG. says he will not do it and will not get in the car. I have an ENT that will take out his tonsils this christmas break from school and he is having a fit about this also. He is scared of course and i know its not a walk in the park but i feel certain it would help as does his Dr. who recommeneded this. He is so moody and defient and wants to be able to make his own decisions about IVIG and tonsils.

 

Its driving me crazy. He is doing so much better now that we have treated his strep. but he still needs celexa, klonopin and antibiotics to get thru the day. He still has some mild OCD, still wants to sleep in the room with his younger brother.

 

why is he being so resistant to treatments. I know he is scared but i feel like IVIG and tonsil coming out would help him sooooooooo muchhhhhhhh!!!! He has an awful temper. will still go into a rage if the answer is NO. He still has night fears.

 

He wants to be independent and make his medical decisions but .....wants to make sure that MOM Does not forget his pills every morn and night. whats up with this. anyone have this with their teens???

 

by the way he is 6'1 and weighs 180. (plays football) he is very strong and when he says no there is no way to get around it. so frustrating!!!!) He has refused to get out of the car at Dr. appts. and at school. what can i do to convince him he needs these treatments to feel better physically and emotionally. I thought maybe another teen could convince him that he needs to listern to his MOTHER!!!

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I know how frustrating this can be as a mother of a teen myself. I think your son feels scared and deep down he knows he needs help. The fact he wants you to remember his medicine is a good thing. We can't imagine what they feel like inside. It must be scary to know that something is wrong and they must think at times they are crazy. I always found it helpful for a family member to talk with her. The best advice someone gave her was that this illness is hers, she has to claim it. Till this day she refuses to admit she has Pandas but instead tells everyone she has a screwed up immune system. We meet half way. As they get older they research alot on ther own too and sometimes that puts us in a difficult spot.

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Is it that he doesn't like the idea of the procedure itself, or is it that he still wants to be in denial about the illness? Do you have any insight?

 

Looking back to my teen years with it, I think one issue that was hard for me to accept about the idea of aggressive treatment (for me it was hospitalization) was that deep down I was convinced that nothing would work. When you go for the "ultimate" treatment, you fear that if that doesn't work, then ALL of your hope goes away...and how can you live with that, as a teen, when most of your life is about hope for your future? As long as you stick with the penultimate treatment, you can have a tool to pull out if you ever get more desperate...and for me that was an important hope to have. Maybe it would be important to frame it as just another tool or another drug.

 

The other side of the fear is "what if it DOES work?" It really is like being kidnapped. After living with a disease for a long time, especially during formative years, it can be hard to think about life without it. When my issues suddenly cleared after years, as a late teen, I have to say that it wasn't just sudden euphoria for me. It provoked its own anxiety. I wasn't even looking for a quick treatment at the time; I had kind of accepted PANDAS as a way of life. I was treated for TB, and then the OCD/anorexia/depression stuff went away very quickly. As a parent, that sounds like a dream come true, but as the teen going through it, I felt really unmoored for a while. I had clung to all of these routines and compulsions for so long, and all of a sudden I didn't have them any more and couldn't even have made myself do them if I had wanted to, and I felt like a helium balloon that had been cut free. I've always felt like I would have benefitted from some counseling to have dealt with that transition better. At the time my shrinks were like "yay, you had a breakthrough, you're better now!" and I was like "what the F just happened to me, and what do I do now? Can I make it as "normal"?"

 

If it's the procedure itself, you might want to take him somewhere where they do it a lot to watch it. Where my kids get IVIG, there are teens there constantly getting it. They just come in, do the IVIG for a couple of hours, knit, play video games, or watch TV, and go about their business afterwards. It's not a big scary thing once you've seen people do it. No-one he knows would even have to know about it.

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DS ( 14, also 6 ft and 180 pounds) has had periods where he has not wanted any more treatment. For him it is that we have tried to do many things and none of them has really worked so far (also true of IVIG so far) In his opinion, quite a few things have made him worse. I have started sharing with him why things are happening, that we don't know if it works or not, and why I think it is worthwhile to try. He is amenable to this approach right now.

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OMG! I actually laughed at your post because my ds14 (soon to be 15) is SO similar. Part 4 year old, part adult. Once at a restaurant I told him to not order Coke due to the caffeine, and he looked at me and said "Mom, I'm almost 15, I think I can handle my own beverage!" So now whenever he is acting small and wants me to do something unnecessary for him I tell him "If you can handle your own beverage, you can handle this!". So anyway, ds did IVIG in June. What I told him was this "You have been through ###### and back over the last few years. I can't guarantee this will work. But if it does, even a little, it will be worth it. Do you think I would spend $12,000 on this if I didn't think it might help? You don't deserve to live this way and you may not have to if you try this." And then I offered him a kitten....Really - we talked about it for a few months and I told him it wasn't going to be easy or fun, and it might make things worse for a little while, but that I recognized that it would be hard on him, and that's why the kitten (he's a serious animal lover and had been wanting this for a long time). We got the kitten 4 days before IVIG so it was there for comfort when he was done. And I'm sure you can all appreciate this - he named his kitten "Baxter". We also got the free kids kit from Baxter ahead of time, and while it was WAY too young for him, it did give him a visual about what this was all about. He has definitely told people it was worth it and would do it again if he had to (which it is looking that way lately). Then again he might just be after another kitten....

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I know he is some what afaired of the tonsils coming out. The ENT gave us all the possile side effects and i wanted to run from the room. I also know he is tired of Mom trying to "fix" him. after 8 yrs of dealing with different issues he has lost some hope. He told me he feels fine now and just wants to be left alone.

 

When i talk about PANDAS he says there is no such thing and that he does not have it. so there is deniel --- but he sure wants Mom to give him his pills that he feels are helping. He does not want to slip back into the days where his OCD was so bad he could barely function.

 

I could try and bribe him but i want him to be involved with his treatment and he just wants it all to go away.

 

Its just so hard. He woke up with a sore throat again today. His left tonsil is very enlarged. He wants me to take him for a strep culture. I can see the fear in his face and I want so bad to say ... this is why the tonsils need to come out. But for now i will love him and take the best care of him that i can without trying to control his life too much.

 

off to the Dr. Maybe she can help him make the best decision. I have to also have faith that if tonsils coming out and doing IVIG is part of Gods plan for my son then he will give my son the wisdom and the courage to go through with this. That being said if he has another fit/rage about homework like he did last night i may take his tonsils out myself!!!!!!!

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I have a son who just turned 17 and went through 2 IVIG so far(170 pounds). He was very hesitant and scared of IVIG at first but he understood that he needed help with his ocd and anxiety thoughts so in the end he went along with it. I wonder if your son would talk to my son via email or texting. I believe my son is happy with his treatments ( no complains for 3 days straight IVIG at high dose) as he is doing much better than ever since he started to have pandas symptom. pm me if you want his email address or phone number. I could have my son contact yours too. I think my son could sell it to yours as he has been through so many tests and treatments (meds, diet, supplements, acupunctures to head/like ###### riser movie, hypnoses, smell therapy among others) good luck

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pathfinder i will pm you. That may help my son if he is willing to talk with someone. my son has been through it all also. If i thought something or some dr could help us ( before we found out about PANDAS) we tried it. I feel bad for trying so much but i did it out of love. thanks so much for offering. hope this works!!

 

robin

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My dd is 14 years old and she has had two hd ivig and she is willing to talk with him on Facebook and tell him how much it helped her. If you want to give him her facebook info, send me a private message and I'll send it to you. She is not 100% but admits it has helped a LOT and she's glad she's having another soon.

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I'd also talk to EmmaLily about this one, since I can't really talk about the benefit of treatment.

 

I'm trying to stay as positive as possible here because I've had a terrible week. Here we go.

I agree with MomTo2Pandas. I don't feel like there is anything out there that can fix me. Moreso than that, I feel like letting myself believe that I can be fixed only to be disappointed would be so much worse than to just keep being broken. It's a horrible, horrible mantra, but when I used to be at the hospital multiple times a week I would chant "Hope for the best, prepare for the worst, expect nothing, & you'll never get hurt". I didn't WANT to believe that anyone could make me feel better, just because I knew how much worse I would feel when/if they failed. In my head I figured that if I walked into every doctor's office anything-but-confident, who could break my spirit? As if I had any left. I refused to see any doctor, I refused to even say the word "P.A.N.D.A.S." for about two years, until my Narcolepy symptoms smacked me in the face & I was all but forced to explain what was wrong to people. I don't know what exactly your son has been through, but I'm sure I can speak for him when I say that kids like us, who have been dragged through the dirt by doctors armed with nothing but prescription pads, checkbooks, & agendas, aren't exactly receptive to most in the medical field. Why SHOULD we trust that someone can make us better when so many before them have failed?? This might be a personal one, but I just don't see how someone could ever think it's possible to fix a girl like me. If I go with my old mantra & "expect nothing", no one can hurt me.

 

Another thing is that, if I'm being totally honest, the thought of life without P.A.N.D.A.S. is something totally foreign to us. I say P.A.N.D.A.S. just to encompass everything; Dystonia, possible Epilepsy, possible Lyme, possible who-knows-what-else Syndrome.. I made a PostSecret (I'd highly recommend looking that up if you don't know what it is) a little over a year ago that said "It's all too popular to say 'I am not defined by my disease', but I have completely forgotten who I am without mine". & it's true. IF we allow ourselves to hope for a remedy that even we can't imagine possible, IF we allow ourselves to trust yet another white-coat, IF this miracle treatment somehow fixes what WE ourselves deem unfixable... where are we? Who the H### would I, COULD I be without P.A.N.D.A.S.? I can't imagine anyone who hasn't dealt with this all firsthand really undersstanding this, but you have to realize that this madness is all we know. As terrifying as it is to watch your kids go through their rages, imagine what it's like to feel that angry. Have you EVER been as furious as some of us get? Have you ever been that enraged over absolutely nothing? How about multiple times a day? Have you ever clenched your first until your fingers stuck there? Have you ever beat yourself until you bruised? I'm NOT trying to make anyone feel bad here, but please just think for a moment... Those things are normal to us. Which is not to say that we don't "know better" than to think that everyone behaves in such a way. No, we most definitely see that we're on the abnormal side. But can you imagine being used to those things being your everyday life, & then someone stepping in & saying "I can take all of that away"?

 

& replace it with what, Mr. MagicMan? You say your son's diagnosis was fairly recent, but I don't know how long he's actually been dealing with P.A.N.D.A.S., so once again I can only speak for myself on this one. Personally, I've been fighting this for literally as long as I can remember. Even if it hasn't been years & years & years, this is all we know. Sure, we are all too aware that life sans-P.A.N.D.A.S. would be a breeze compared to the alternative, but just like you guys say you have no idea what your kids go through everyday... WE have no idea what YOU go through everyday. While you wonder what's going on in our minds, we wonder what's going on in yours. What is it like to not be angry?? What is it like to not be afraid of choking everytime you eat? What is it like not to count your steps as you walk?? We are just, if not more, as bewildered by you as vice versa. No one can say for sure, obviously, but I think that trying to imagine life without P.A.N.D.A.S. is JUST as difficult as trying to picture life with it.

What is it like to feel better?

 

 

 

 

Sorry for ALL of that.. It's been a terrible, terrible week & it's only Tuesday. :/

If your son's verbal & you want me to talk to him I'll do my best to. I've done it with lots of kiddos on here before. Maybe if you just show him this that would help some? I hope he turns around & accepts treatment. As terrifying as it may be, he has a beautiful, lifechanging opportunity before him that I only wish I had access to. I wish both of you the best of luck!!! :) <4

Edited by EmersonAilidh
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I think that there is a bigger issue here, and that is attitude toward and willingness to get treatment. As I mentioned before, and Emerson echoed, there is a lot that underlies that, and I think that the teen years are the time to get to the bottom of it, especially for boys. In my case, as I mentioned, I had an accidental remission, and then I took an interest in the science and that propelled me forward from there. But I think that a bit of "light" counseling would have helped. I would have hated the idea of yet more useless therapy; however, I think I could have used some perspective from a counselor, pastor, support group, or wise adult who understood, just to give me some perspective on how young I really was and to try to get me in the right mindset for management of a tricky long-term illness. I got there in any case, but it could have been easier. I'm guessing there are people who specialize in this, since it's a big issue with many conditions, including diabetes, asthma, and tons of others. During my years in the hospital, I saw plenty of teens admitted who would just throw in the towel on treatment with all of these things and eventually would need to be hospitalized.

 

I think this is particularly true for boys, who will soon be men, who are notorious for not taking care of themselves medically especially when it comes to stuff that presents with mental/emotional symptoms. I don't get it, but I know it's true statistically, and I've certainly seen it in my own family. As one glaring example, once my kids & I were diagnosed with immune deficiencies, I mentioned it to my father, since he is ALWAYS sick with disabling infections and has skin cancer, which is also a sign of immune deficiency...not to mention that he had RF and PANDAS, and his Mom is the one who had chronic sinus infections and recurrent pneumnoias and RF and anorexia nervosa, among other things.... It is so clear cut, but he won't go to the doctor even just for a blood test to get his immune system checked out. I am guessing that there is a complicated psychology to finding the answer to your life's miseries when you're in your 70's...but on the other hand, he has always been reluctant to look for answers. I see this SO often in men.

 

Emerson, hang in there, boy do I know how you feel. All I can say is that you'll be surprised, when your symptoms do go away eventually: other stuff quickly fills in for all of the stuff that goes away. I spent so much of my mental capacity on OCD thoughts as a teen, and on thinking about my illness itself and about how to get better, that I wondered what on earth I would think about if ever that 90% of my bandwidth became available. The idea of mental emptiness was more daunting then the mental crap, once I got used to it. But it just fills up on its own; without effort, you find other things to "worry about", regular life stuff like other people, love, work, ambitions, intellectual interests, pets, etc. I had always thought that it would be an active process, that I would need to know how to move on or how to get better, how to fill up my life, but I didn't need to know anything. Once the disease is suppressed, moving on just unfolds on its own. All you have to do is just wake up every morning like you do now, and the rest takes care of itself.

 

I always wish I could do something for all of these teens...guess I'm only a few years away from having my own PANDAS teen boys.

 

I wonder if it would be possible to start some sort of on-line support group for PANDAS teens - like a muti-way counselor-facilitated skype or chat or something. I don't know all of the chat technologies enough to know if this could work or has been done.

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