Psych recommending partial hospitalization-need advice

[jdude]

Brief background-DS, 12 diagnosed with PANDAS Sept 2010. Sudden onset of OCD/tics/separation anxiety, handwriting deteroration. ASO titres high, had success with antibiotics/steriod bursts. Symptoms wax and wane. Did not pursue IVIG initially as after first episode, tics went away after a few months, handwriting back to normal, symptoms mild (as compared to Sammy from Saving Sammy). This past year, however, has been horrible. He has been in trouble in school (impulse issues). Recently, he was in serious trouble for stabbing a classmate in the hand with a pencil after constant bullying (she was treating him like a leper, making a big production of using hand sanitizer before touching something he touched, refusing to work with him as a lab partner), apparently, when she pubicly announced her refusal to work with him on a lab as they were assigned to do, he finally had it and did something he shouldn't have done. He has had some rage episodes at home (hasn't had one in a while, but when he did he was like a different person-threatening, never actually did anything, but was out of control). He has been seeing a psychologist who is in the same practice as the neurologist who initially diagnosed PANDAS. I thought that by using one in that practice, there would be a greater undertanding of PANDAS. After the pencil incident, she recommended "partial hospitalization"-it's a day long program at a local hospital for a couple weeks. She felt like he needed to take therapy more seriously (he doesn't always recognize his issues, and will use humor to deflect actual work toward changing). Lately, his anxiety has increased...more handwashing, etc., although his mood has been better and he has been more compliant at home.

 

I just got a note from her wanting to re-visit the partial hospitalization idea-not sure what brought this on. In the meantime, his pediatrician (also a PANDAS friendly doctor) feels like he needs IVIG. He has been trying to get it approved through insurance.

 

Although I recognize my son needs help with anger management, anxiety, impulsive behavior, if the underlying cause is PANDAS, what good would the partial-hospitalization do? She (the pscyhologist) assures me that they won't put him on any meds without my consent, but I'm not sure how much I believe. I have read stories of kids being taken away if parents refuse meds that hospitals recommend. I'm just very leery of this approach, I feel like I should pursue IVIG first, as if PANDAS is the underlying cause, no psych meds or therapy is going to help. What would you do?

Edited April 22, 2013 by jdude

[nicklemama]

I would pursue the IVIG. I would only hospitalize as a very last resort. I'm too afraid and too leery of letting a hospital have any control over my son.

[LNN]

I would let her know you are pursuing medical treatment (IVIG) and that you feel hospitalization at this time would be ineffective. I think the risk of his acting out in a setting where his condition is not understood could prompt someone to force round the clock hospitalization or participation in some other therapy or medication that you do not want. I could foresee a loss of parental control. Slipper slope IMO.

 

As for his anger, I have seen dramatic changes in my son (lyme/Pandas) on certain antibiotics and supplements as well as post-IVIG. I now know that certain things are more likely to trigger rages and certain things can help calm him down based on his genetics (from 23andMe testing). I tend to go overboard on my methylation/genetics posts so I won't do that here. But if you ever want to discuss privately, PM me.

 

Best of luck with your decision and with the IVIG!

[SSS]

Is he on antibiotic treatment right now?

[smartyjones]

we have been very fortunate in the past 2 years to have some really good psych providers. previous to that, i was very disenchanted with the entire profession. i am still quite jaded and quick to not trust.

 

we have not been in your situation, so i am not speaking from experience - only from thoughts . . . i would carefully weigh your past and current thoughts and experiences with this psych. as much as they are to help each individual patient, they are also obligated to protect the public good as they see fit. is the recommendation for the best benefit of your child, or a CYA for the professional?

 

Good luck.

[Dedee]

My questions are where do things stand from an infectious stand point. What are his infectious triggers? Is he strep, mycoplasma, or lyme triggered? What antibiotics is he on? Sounds to me like he isn't on the right antibiotics if he isn't making any progress. Are you following titers to make sure they are going down? You need to make sure you are seeing a PANS / PANDAS specialist. Not just someone who believes in PANDAS but one of the top specialist in the field. That will mean you need to travel. This sounds like a serious situation with your son. You need someone who seriously understands this illness and the complexities of treating it. If he has mycoplasma or lyme, I would suggest an LLMD. If he is strictly a strep trigger, seek out one of the PANDAS guys. Make an appointment right away. Therapy is great, but he needs medical treatment also. IVIG will only do it's job if you have the underlying infection under control. We treated with IVIG but it only helped short term until we got the right antibiotics on board. JMHO.

 

Dedee

[jdude]

He's on Augmentin now (actually, at the moment he's on Clarithromycin for 10 days for an ear infection), usually a prophuylactic dose of Augmentin. When initially diagnosed, strep titres were high. Last bloodwork done titres were within normal range. Not sure what other triggers he has, although I will say he has bad allergies..for last month has been extremely congested, have tried three different allergy medications to no avail.

[bigmighty]

Peds might want to run extensive labs. Many PANS/PANDAS kids also have CVIDs. DS has low overall IgG. Something like that often requires IVIG treatment and, if sufficiently low, insurance will pay.

[Dedee]

I would look into other potential triggers both bacterial and viral. If his titers are down you should at least be seeing some decrease in symptoms. My guess is there is something else lurking.

 

Dedee

[MomWithOCDSon]

Before we found a PANDAS diagnosis and treatment, and on the advice of our psych at the time, we entered our then 12yo DS in a similar "partial inpatient" program. I can't say that I would recommend it, and it's certainly not something we would comply with again now, knowing what we know. Here's what we found with the program we entered (things which turned out to be counter to what was "advertised" when we met with the intake people about whether or not this program would be good for DS.

1. At age 12, this is a very tough age (PANDAS or non-PANDAS) for these programs as, in general, the "pediatric" programs are too "babyish" and infantile in their approaches to therapy for our tweens, but the "adolescent" programs tend to be populated predominantly by older kids (13-17) who have both "older" behaviors and "older" problems. Our DS was the youngest in the program he attended, and his co-attendees were kids with substance abuse problems, self-harming behaviors, suicidal and/or homicidal. They used profanity freely and frequently, among other things, that were not especially beneficial to DS.
2. The program told us they knew OCD and anxiety and were prepared to work with him in both group and private therapy on these specific issues; however, he was the ONLY kid in the program at the time with these particular issues, and because the other kids' issues were so much "noisier" and aggressive, it seemed DS just more or less got ignored unless he rose to some bait and caused some trouble.
3. They did "notify" us that they were "adjusting" his meds, but it was usually after the fact, rather than before. And they adjusted them every few days, as well, so how they could've discerned true impacts is beyond me, since most of them take a while to become effective.
4. He was supposed to get private therapy sessions along with group sessions, but from what we can tell, in a full week of attending the program, he only got one, 30-minute private session with a licensed psychiatrist. Considering the fees the program was charging, and the trouble DS was experiencing at the time, we felt robbed on that score, as well.
5. DS wound up sort of "absorbing" a host of new anxieties and worries from his exposure to these other, mal-adjusted/ill kids. He'd never before (or since, for that matter) mentioned any suicidal tendencies, but there was such a focus on "Do you feel like harming yourself?" in the group therapy sessions that he began to worry that maybe he did, in fact, want to harm himself. That was very alarming for us. But all of his talk about anything of that ilk quickly faded once we pulled him out of that program.

In the end, the only positive impact of this program -- selfishly -- was that it gave us a relatively safe place for DS to be for 8 hours each day, for the one week that we agreed to try that program, so that DH and I got a "breather" for the first time in months. But I don't think the price DS paid was worth it. The meds they gave him did not help (and in some ways actually "harmed"), and the ideas and worries he took on from trying to participate in the group therapy just added to his stressors and triggers.

 

If you have any other options, I would explore them first. Or at least make sure you get all the detail on the program in advance that you possibly can, and then if you enroll him, talk with him daily about what goes on there, how it makes him feel, etc. Partial inpatient/outpatient, in my experience, is entirely voluntary, so you should be able to withdraw him at any time if you determine that to be best for him. We did!

 

All the best!

[rowingmom]

Did the recent pencil incident occurr before or after you added clarithromycin? Herx responses are not only physical, but can be psychological as well.

He's on Augmentin now (actually, at the moment he's on Clarithromycin for 10 days for an ear infection), usually a prophuylactic dose of Augmentin. When initially diagnosed, strep titres were high. Last bloodwork done titres were within normal range. Not sure what other triggers he has, although I will say he has bad allergies..for last month has been extremely congested, have tried three different allergy medications to no avail.

[jdude]

Thanks everyone. I spoke with his psychologist and she agrees we should seek medical treatment (i.e. IVIG) first before going down the path of partial hospitalization(especially if symptoms are PANDAS related, she agreed psych meds wouldn't help). i think she was just getting exasperated with her lack of progress with him. I think perhaps she is not the best fit at this time...he's very good at diverting and getting off topic and he needs someone a little stronger to keep him on topic and recognizing his behavioral issues and working toward correcting them. Although he's always had some level of anxiety, the odd outbursts and behavioral issues are new this year, and he doesn't like to talk about what he doesn't want to talk about. Since she's also out-of-network, if she's not making progress, it's best for us to save our $$ toward what may be out-of-pocket for IVIG and find an in-network therapist (and I did get a recommendation, so we'll see how that goes)

 

Regarding the pencil incident-that was pre-Clarithromycin. I actually think he's been better since he changed to that antibiotic. We've had a really good week. He's been cooperative. He's gotten off the XBox when I've asked him to, been ready for his various activities (piano, swimming, tutoring) and generally been in good spirits.

[norcalmom]

I agree - IVIG might be the ticket. Also, please check him for mycoplasma. For some reason, Dr K has said that many rage-y kids have mycoP.

 

I know mine did /does. and it the IgM is negative, but IgG is high - you need to test him again to see if the IgG is going up or down. IgM will evnetually go down for majority of people - if the infection become chronic, or if they get mycoP more than once.

 

best of luck. IVIG worked wonders for DS, and although we do other things as well, it helped him get through a critical time, and although not 100% better, I feel there is yet to be somehting that worked as well, or as fast.

[jdude]

I was checking his labwork from a year ago and the IgG was in the high range. IgM, low. If it's still high, what is usually recommended for that?

[norcalmom]

You should re test and see how the numbers compare. IgG should stay the same, or ideally go down. If it is going up (a small amount not that important - but a few hundred points is) then you probably have an active infection, even if the IGM is negative.