Teen unable to discuss treatment?

[T_Anna]

Our doctor is working on having DS admitted to the hospital for PEX (maybe Monday). DS is still in bad shape and as I posted lately, now added a lot of ticcing (choreoform mvmt) to the overall picture. I would love to prepare him for the hospitalization or PEX, but anytime I mention PANDAS or even that he wont be sick forever, he flips out. He cannot bare to hear anything relating to treatment/doctors etc.

 

Anyone else have experience with a teen in a flare that couldn't talk about his illness (besides "i wish i were dead" or "it will kill me eventually")?

 

Last night he said he wouldn't 'ever' be better. I said don't say ever... and he cut me off telling me NEVER to talk about these things : (

 

Getting him out the last time to see the doctor was tough, this time who knows.

 

Last night was the first time that he couldn't sleep and he actually ASKED for Benadryl or something that would help. I gave him two and he finally fell asleep, but then woke around 7:30am, upset, and came into our bed and went back to sleep, solidly till now. Since he has only slept on the couch and ottoman for 6 months, I'm sure my bed is more comfortable : /

 

Asking for meds was a first and a good sign, but I'm so tired of looking for tiny glimmers that something is working. He is still so non functional and stuck in severe OCD.

 

T.Anna

DS15

 

 

 

[Dedee]

I know this must be such an awful time for you. I'm just going to give you my opinion based on what I went through with my son several years back. Please understand, we were not experiencing anything to the extent you are going through. My oldest has denial as his primary source of coping. When I decided it was time to get counceling help for him he was very angry and wouldn't talk about it and said he wouldn't go. He was 15 at the time. We had to be very firm and tell him this is a parent decision not a decision that will be made by the child. We explained that God gave him parents so that when he was too young or too sick to be able to make the right choices for his life or his health we would be there to step in and make them for him. We told him no one loves him more than us and we would always make the best choices for him and whether he agreed or not he just had to trust our decision. No discussion. I would throw in that if doesn't come willingly that you would call an ambulance and have him taken to the hospital because again, this is the best thing for his health and his life. Keep emphasizing that there are times in your life that you are too sick to know what is best and that is why he has parents who love him and always want what is best for him. But very firmly and without waver, let him know that you intend to do your job as a parent which is to get him the help he needs.

 

I would not offer this as an option and I would tell him what the date is you intend to go and make sure he understands that an ambulance ride is always an option. You are doing the right thing here. I know that you know that. Even if you do have to force him to go, you could very well be saving his life. You should not feel guilty about that.

 

My son tried very hard to play my emotions. He didn't speak to me for a week. I kept very cool, almost detached, but I did keep saying that everything I do is because I love him and that nobody loves him as much as his parents or knows more about whats best for him. Our counselor said it was very important that teenagers understand that they are not in control of the decision and that actually makes it easier for them sometime. They can however decide how they will get there (by force or amicable).

 

I truly hope things go well for you and that this treatment is helpful. I feel so bad for what your family is going through. Please keep us updated on your progress.

 

Dedee

[T_Anna]

Thanks Dedee. I think that I will use your phrases. He definitely wants to get better and is pretty patient with blood tests, IVs etc, but I think it's the fear of leaving his comfort zone that really throws him.

 

The last doctor's appointment we "sprung" on him that morning (appointment was at noon).

 

With a week long hospitalization, he prob should have a little heads up/advance warning!??

 

Is there a downside to that?

 

Thanks again,

T.Anna

[trintiybella]

My child could not talk about her illness. She would be aggressive if I brought it up because she had so many intrusive thoughts, that it actually "hurt" to listen to me. The probiotics calmed her as did vitamin D. In the past a very low dose of seroquel really helped too. I feel for you. This is so hard when they close down. Good luck Anna!

[MMC]

Our DS15 cannot talk about PANDAS either. He will not read about others who have the illness, or attempt to gain any understanding of it. He says he just wants to be normal. Today is his 2nd CBT/HRT appointment. His main issue is tics, but OCD sure has flaired up in the last 6 months, so we sought out this treatment at Duke with Dr Gammons. I hope he cooperates enough to gain from it.

[Wombat140]

With mine it wasn't that I hated thinking about it (I did and do, but too desperate to care about a little thing like that), it was that it actually caused an OCD problem - having any of my OCD things mentioned to me immediately set them off. OCD does pick 'em, doesn't it?

[T_Anna]

I agree that OCD really plays on 100% of all his responses : (

 

T.Anna

[JoyBop]

I can totally identify with all the self defeating thoughts and rage and OCD getting in the way. But my child is only 7 and still looks to us for support. I can only imagine how hard this is for your teen and your family. I guess my take home point is that when they are irrational and defensive, reasoning doesn't work. You somehow managed getting him to the doctors beautifully last time. This might be harder as he will actually have to go in this time. If it were me I would be discussing a plan with the psychiatrist and admitting doctors for support and a plan. Have you ever tried a medication to take the edge off the rage? I know it's a last resort here, but you might consider it in order to get him into the hospital for treatment. Are they able to do PEX at home like IVIG infusions? Even that might be challenging.

 

It would be awfully hard to get him to stay in the hospital against his will so I can see how difficult this can be. Do you work with a psych that can work with your do drs and hospital with a plan of action ? Even if you do manage to get him in the building how can you sustain him once in? I know our psych would be working on desensitization strategies now.

 

Best of luck and hang in there!!!