What do I do while we wait for appt?

[shannon aka mommy]

I have a 14 year old with a clinical PANDAS diagnosis. We have an appointment with Dr Murphy at USF May 23rd.

 

My question is what do I do until the appointment? Does it make sense to start any therapy for the OCD or sensory issues?

 

My husband is pretty bent on "treating the cause and not the symptoms"... I would say that my son is stable right now. He had maybe a half dozen tics yesterday, mild OCD, moderate sensory and moderate/high anxiety. He is homeschooled so I have canceled pretty much all of his classes. He stays home all the time which really cuts down on problems -- he has a really difficult time in the car -- noise from his little brother and sister in the back seat drive him crazy. He spends most of his time with headphones on which I purchased recently so he would stop yelling at us all to be quiet -- he can still hear us though -- sigh. It breaks my heart watching him struggle so much. It's like his life has come to a complete halt.

 

He is on the elimination diet. We know he has multiple food sensitivites so we are trying to figure them all out. I read about Singular causing some neuro problems so we have started backing off of it (I'm going to do a separate post asking for advise on that one.).

 

Should we be doing anything else while we wait? Feedback is appreciated.

 

Shannon

[dcmom]

Hey Shannon- Do you live in FL? If so, I highly recommend doing therapy with Dr Storch's group at USF.

 

Therapy works best in conjunction with medical treatment. That being said, your son sounds stable, so it may be a good time to start therapy (or at least find a really good therapist). A good therapist will know how hard to push your son, it can be done in baby steps. He should really start taking steps toward getting out into the world. The longer his ocd is accommodated, the more stuck it gets. I would try to start slowly, and then when he is being treated medically, push him harder.

 

I think Dr M treats mainly with antibiotics- which is not always the magic bullet for all kids- so I think it is important to at least set the expectation for him that the goal is getting back to his "normal" life and age appropriate behavior. You can work on one issue at a time, baby steps- start with things that you have a reasonable expectation he can be successful at. Reward him.

 

Have you tried Ibuprofen? It helps some pandas kids- takes the edge off. I would consider dosing 4x a day for up to 5 days, and then backing down to once per day.

[Dedee]

I agree with DCmom. While I am a believer of "treating the root, not the fruit" concept, there is much to be said about "accomodating" OCD. It's very hard as parent's, to come up with a plan on our own to know exactly how to react and be supportive but not accomodating. There is a fine line there. That's why DCmom's idea about getting in to see Dr. Storch and working with his program should be a high priority (just my opinion). I believe you are in good hands with Dr. M. We have used her for years. Right now your son doesn't sound extreme but if you continue to accomodate (reinforce) his OCD, it will get worse. As parents, we don't do this on a conscience level of course. We love our kids and we are trying to do our best to alieve their anxiety. Problem is they must learn to manage that anxiety on their own and most times that means getting an individualized plan. The CBT program at USF has years of experience dealing with PANS / PANDAS children with OCD and they know exactly what they are doing. So you can try some advil as others said. Many times that helps. Maybe even some basic supplements such as fish oil, and magnesium. Also, not sure if this will help or not, but last Friday I re-scheduled my son's appointment with Dr. M. He was scheduled to go in mid April. It would have been a first time visit for him (my other 2 kids have seen her). Wonder if they have filled that appointment yet? You could always call and see. Just a thought. Best of luck.

 

Dedee

[PowPow]

Just another ditto here!

If he is at the stage where he is willing to try therapy to learn some coping skills for OCD and sensory difficulties, by all.means, do not let this time go by.

It will not cure PANDAS, but it will sure help him.

I will "third " the USF/DrStorch recommendation

Edited March 27, 2012 by PowPow

[shannon aka mommy]

Yes, we are in north FL. It looks like it would take about 7 hours to get to St Pete. I have family in Vero (3 hours -- a little better) perhaps if we stayed with them we could start therapy for the OCD. I will talk to my husband about it tonight. Is Dr Storch easier to get in to see?

 

Interestingly, we did receive a call about an hour ago from Dr Murphy's office asking for any labs we have. I wonder if they are trying to decide who gets your appointment DeDee? I'm really happy to hear such good things about Dr. Murphy. We have been frantic trying to figure out what is going on with our son.

 

I didn't realize I was bending to OCD. I can see your point...I'm not sure what to do about it really. This is where I'm feeling like we need some professional help.

 

Thanks for the feedback.

Shannon

[dcmom]

Shannon-

 

You can call Dr Storch- he is a psychologist in charge of the therapy program there. You can stay at the Ronald Mcdonald house (we did- wonderful experience) during therapy. If you could do this concurrent with seeing Dr Murphy- or even set it up for this summer- you would be in really good shape come Sept.

 

Good luck!