Some Results? Will it get better?

[T_Anna]

Ok, first a disclaimer:

I'm tired and non-PANDAS son's Bar Mizvah is in two days (Monday) so that maybe be skewing things.

 

Update:

We had plasmapheresis July 30 to August 3. Started propranolol last Friday. And we did HD IVIG last week on Wednesday and Thursday.

 

So far we have only seen some minor improvements in DS15's mood and sporadic energy. He is more smelly (which I assume is more normal for an non hygienic teen). But I'm worried nothing is going to work. He is so sad about not being able to go to his brother's celebration. Today three friends came over and he was up (not just lying on the couch), getting himself food, very animated, etc. But now he is so anxious and almost in tears.

 

Last night I decided that I was tired of being afraid of DS. He had forgotten to take his pills (he had two friends over) and wouldnt take them when I asksd. I snapped and was really honest with how he needs to help himself get better and take his pills, change his clothing, etc. I made him cry, but He got over it eventually. I'm wondering if I let loose because I sensed he could handle it and maybe something is helping or if this is as good as it gets and I snapped after 7 months of having a non functional child?!

 

I guess I'll pursue immunesuppresants next?!

 

We have never tried Minocycline, but if PEX and IViG don't do the trick will a new abx?

 

W still think it's PANDAS (titers, symptoms, cunnigham panel, ibuprofen imorovement, etc), but have come to the realization that he may have had it since he was 2 or 3 (he's 15 now), so that might be why this is harder to "fix/help". He is reading the paper now and talks nicer, but I guess I wanted a HUGE improvement and this is just more in teeny tiny things : /

 

Thanks for reading. All feedback welcome.

 

T.Anna

[dcmom]

Does he have therapy? I think it's important to hit pandas with medical and psychological intervention at the same time. A lot of these may now be learned behaviors that need a strong push to resolve. I highly recommend the program at USF.

 

We saw most gains fromPEX during the first month- but did not do IVIG with it, which could considerably change your timetable.

 

Hang in there- and you were right to snap- parenting OCD/pandas is all about "tough love"- we should not give our kids a free pass.

[LNN]

I'm sorry you haven't seen faster results - I know how disappointing and frustrating it is. You go thru so much preparation and expense and move heaven and earth and then.... you pray to see signs you'll be repaid by getting your son back. We did both Pex and IVIG but not back to back. It didn't "work" for my son except that the failure led us to finally find lyme, which I wasn't willing to consider before then. So regardless of the progress of lack of, you've now done tings that will give you a lot of information moving forward. But I'll still keep my fingers crossed for you that see more good things ahead.

 

I agree with DCMom not only about ERP, now that he may be in a place to do it. But also about the tought love. I've had more than one conversation with my son about the need to be part of the solution. He needs to own this problem with me, not expect me to do it all. Here you are, doing all this behind the scenes work and all you're asking is that they swallow some pills - and they balk?! Sometimes, they just feel like human pin cushions and are looking for some say in things. One of the best things that ever happened was when DS had to stop all meds (except abx) for a week to do a urine test. He felt so awful by the end of that week that he was begging to go back on all the supps. It showed him they do help. Now when he balks, I say "do what you want" (admittedly sometimes in a snotty voice) and walk away. he usually takes the pills within 5 min - once the choice is his. Sometimes he'll negotiate with "Mom, I'll take these three now and the rest after I do xyz". I imagine a 15 yr old looking for some say over things is a healthy sign.

 

On the tough love, you were right to lay it on the line for him. First, you're human, not super human. It's good for him to see you stand up to him and to let him know he's crossed a line. It's good to have expectations of him and enforce them - or let him suffer the natural consequences if he doesn't hold up his end. Second, making him own his share of work is healthy. It says you believe he is capable and you expect him to rise to a challenge and succeed. It's not bad to be firm. Good for you!

[JoyBop]

First of all, Mazel tov to your DS! I can't imagine how stressful it must be to be organizing such a huge event on too of managing all you have going on with your other son. I'm sure its very stressful for him as well knowing that a big family event is going on and be is not able to participate. Give yourself a pass on loosing your temper, I'm sure most of us would have lost it long ago.

 

On the positive side, the fact that your son is still hanging out with friends seems like an outstanding sign. My DS could not maintain any relationships at all while in a flare. I know they are all different but that does look like a good sign. Also, sometimes improvements take time to manifest so don't give up on hope yet. Its amazing that you have been a me to navigate through the system and get so many treatments for your son. That's more than some of us on this forum have been a me to accomplish thus far. You are doing amazing and taking on a tremendous amount. Focus on getting through your big event and the. Give your DS time to find his new baseline. You know that he is probably feeling all the stress around him so give it all a chance to pass. Hang in there!!

[qannie47]

Hi, sorry for how difficult things are for you and yours right now...Try and remember that it really is a 12 wk period in which you should see the results of IVIG....Hang in there....As far as your own stress level...I know how hard that is. You just reach a breaking point. I try to remind myself that snapping at my ds only serves to raise my own blood pressure and solves nothing. There is nothing wrong with being firm though, sticking to what is necessary like taking meds....When my ds is flaring, and I want to through him through the window, I have found that being neutral/firm with enforcing a rule works well for both of us. Like I said, when I get so upset, it only serves to make my ds worse cause he works off of my energy. That has been my experience. I try to remember, (and it is not easy), that he is sick, his brain is inflamed and if he could do better he would...yet I still am firm/I don't negotiate with certain things, without all the yelling, snapping....My own central nervous system thanks me at the end of the day

[T_Anna]

Thanks guys!! DS got stuck in the bathroom today and it was really stressful. But now he's out and his best friend is coming tomorrow morning before the services begin. So now we can be excited again for DS13 (non PANDAS).

 

Therapy. We had done a ton of CBT from October 2012 thru January 2012. It really helped in the beginning with the suddenly severe OCD, but we had no idea of PANDaS at the time or what a flare is, an excerbation, or triggers. It worked really well at first but then DS kept getting sick and none of the therapists sessions were working. Unfortunately, we were given very poor advice from our supposedly pandas expert therapist.

 

Recently I spoke with USF's Dr.S, but he reiterated that therapy with teens is only effective if they are willing participants. At the moment DS is very resistant. At the hospital for peX he hardly answered any questions from the psychiatrist and psychologists who came through.

 

Yes, it is the exhaustion of getting all these therapies and not seeing any results. We will continue to hope that the results may still come.

 

Thanks again,

T.anna

[DsMom]

I have DS13 who loves it that I wait on him hand and foot - supps, food, what ever it takes. Of course he feels like crud all the time. I get wiped out and angry/frustrated too. I feel guilty as heck when I snap, but seriously you are entitled to letting out a bit of steam here and there when they act stinky. Since they are teens on top of thier illness and hormones are raging Im sure that is the icing on top their cake of heck, right?

Don't beat yourself up, he has already forgotten it and it just shows what a great Mom you are that you are still feeling bad about what happend. Enjoy the celebration and hang in there.

 

[lynn]

My DS is 17 and I have to say that as you get into high school, it is really important that they get at least the concept of owning their own future. DS is going into his Senior year and it has been touch and go whether he would get this far (Sophomore year we pulled him out for the month of January and dragged him to Florida for ERP--they also made it clear that nothing good was going to happen to him unless he made it happen.) Part of the equation is indubitably getting rid of the medical problems, but I agree that as he climbs out of the swamp, he will drag his icky learned behaviors with him unless you are your evil twin mother and kick them back to where they came from. This includes everything from being allowed to be in charge of getting up on time to being in charge of not letting his temper make him say unwise things to his father. You do start to see the difference between a child that is so deep in exacerbation that he can't do anything and a child that sort of (in a way) enjoys the hard work of learning how to run his life himself. I've seen this sometimes. Hope we all get there for real.

[lulu4]

I don't know anything about plasmapharesis and how immediate results should be, but our DD13 had IVig on April 29 and 30. A few small things improved right away, but a month after the procedure we were still seeing lots of OCD and anxiety and odd behaviors. At our follow up appt. Dr. L. said it would be 6 months to see how improved our daughter would be as a result of the IVig (with ups and downs along the way!) We are now 4 months post procedure and I do see improvement. I hope it continues. ...So I hope this is just the beginning of healing for your son. I hope the plasmpharesis and IVig combined really bring him a long way, even if it takes a while. Hang in there and best of luck to you and yours!