Do you do CBT during flares?

[JoyBop]

Hi everyone. I haven't been around this forum for a long time. My 2 kids have been making a very nice recovery from PANDAS and we moved on...or so we thought.

 

MY 9 year old is having the worst flare I have seen in quite some time. He was exposed to two children with strep 6 weeks ago and has been in a major flare ever since, getting worse every day. He is now afraid to use public restrooms to the point that he is peeing in his pants when we get back to the car. He is refusing to drink (so he wont have to pee) which has caused him to be constipated. This has caused more OCD in the bathroom at home and bleeding fissures from straining. Seeing the blood causes him to panic, and the cycle rages on.

 

Heres my question. Our therapist wants to continue doing exposure therapy, thinking thats the only way to help. I thought I recalled Peggy Chapman at the 2013 conference in RI say that you should not do exposure therapy during a flare. This therapist has never seen my child in this kind of a flare and he has always been willing to do the work with her. Now he is refusing to see her. I dont know whether I should be pushing him to continue or give him a break from exposures until things calm down.

 

We have an appointment with Dr. KYle Williams at MGH next Monday. Just trying to do whatever we can until we get there.

 

Any thoughts or links to articles would be most appreciated!

 

Alyssa

[searching_for_help]

Honestly, I'd skip the therapy during the flare and get him on antibiotics. (I'm assuming you don't have him on them yet?) When our dd was young, she went for months terrified of bathrooms that had any chip, crack, or tear in them. (Basically, every bathroom!) It was horrible, but after a few months it just "went away", as suddenly as it came on. We did NOT know about PANDAS at the time, but she always had lots of strep and we would put her on abx. Of course, we never made the connection between the two at the time, but after years of this ****, now we know what was going on.

 

So, if you can avoid the exposure therapy, (knowing that will initially cause more anxiety), and treat the infection - it would sure be a lot easier on your son. The only hitch would be IF you can find the correct antibiotic treatment. That's always the tricky part.

 

Also, it might help to feed him watermelon and foods with high liquid content. And a natural vegetable laxative can be helpful for the constipation. I think one brand is called Senna-X. It's one of the few things that has helped our dd.

 

So sorry you and your family are having to go through this again.

[JoyBop]

So kind of you to reply! It's been one of those days!!

 

My son has been on 500mg twice a day of keflex for 2 years. He's allergic to penicillin so that's our best bet. If we have to desensitize him to it if we need it his pandas immunologist is willing to do it for us.

 

He used to have a fear of gum which was far worse than this because it was on every sidewalk and every chair or table. He literally couldn't leave the house. He also had the fear of someone getting sick and vomiting but it has reached new heights with this flare.

 

I made the decision not to do any more exposures for now. May be considering meds at this point.

[LMG]

I would think desensitization would be a waste of time during a flare and stressful for all involved. Therapy makes more sense for chronic residual symptoms of OCD.

[JoyBop]

LMG what kind of therapy are you talking about? Thanks for the reply. We have already told the therapist no exposures until he can handle it. I'm not seeing how any therapy will work now. But I want to keep bringing hin to keep him int he routine. Our dr recommended seeing the therapist 2-3 times a week during the flare but haven't gotten a hold of any pandas experts yet in exactly what we should be focusing on.

[kmacdonald34]

This is one my questions I have next time I met with our PANDAS drs too. We also see Dr. Kyle Williams and so far have had one appt. I cannot remember his suggestion. It was my first appt and my head was swimming with all the information he gave us. We go for our second appt in a couple weeks with him and this is one of the questions I have. Hope your appt goes well. Do you see any of the other drs there? We also see Dr. Walter and Dr. Pasternak, both who have been very helpful

[JoyBop]

Yes, we see Pasternack , Walters, Williams, and Yuan (GI). We previously saw Dr Geller. All have been the most compassionate and wonderful doctors and we are so fortunate to be a part of that clinic.

 

I'm fairly certain we made the right decision to stop cbt because he was so anxious about it that it was driving him insane. He's a little more relaxed now knowing no one is going to force him to face his fears. At least not until he is ready!

 

Our appointment on Monday can't come soon enough. We haven't been seen there since last June.

[MaryAW]

Have you tried ibuprofen or omega 3's? During a flare I always put my DD on ibuprofen - big help. Omega 3's are also an anti-inflammatory.

[JoyBop]

Thank you Maryaw. We are currently giving him 400mg of Motrin twice s day. We used to give him the omega 3 snd it never did anything to help at all so we stopped. (we gave it to him for about a year) we find Motrin does make a big difference!

[kmacdonald34]

So happy to hear that the specialists at MGH have been so wonderful. We are just starting our PANDAS journey and have only seen each dr. once. We start our second round of appt. this month. I think stopping is the right choice, particularly since you have already seen anxiety decrease. Hope your appt. goes well Monday. Keep us posted!

[mommybee]

@Joybop You are so right to wait until you get the anxiety under control before embarking on CBT. We use MGH too and had to learn that ERP is contraindicated the hard way. So if anyone at the hospital tells you differently, refer them to Dr. Henin at the child CBT program. She can certainly enlighten them about the reasons why this is the case. In a nutshell, the reason why the therapy works is that systematic exposures usually desensitise the patient. He or she learns through repeated systematic exposures that the feared response won't be as bad as it is believed to be. The problem is that when anxiety is as extreme as is in PANDAS, exposures cause full blown panic reactions that reinforce the fear rather than extinguishing it. This is not just theory. There is plenty of peer reviewed research on the subject. I'm certain that Dr. Henin would be happy to share how this works with her medical colleagues if asked.

 

For everyone else, MGH is the best! They made my kid better.

[JoyBop]

Mommybee is there anyway you could send me some links to this study? We are not doing exposures now as my kid is a wreck, but I would love to help educate our CBT therapist. She asked me if I had any literature. I searched but didn't find anything. Perhaps I'll use Dr Henin name. I am not enrolled in MGH CBT program. Oir appt on Minday with Dr Willliams can't come soon enough! Thank you for your response!