Both Kids doing better....Question though about Steriods...

[Dedee]

You all know about the struggle I was having with my son a few weeks ago, the terrible depression and perfection OCD......Well, I am happy to report that he seems to be improving. Yes, it took two different Psychiatrist and many tears but he seems to be coming out of this horrible episode. Needless to say the first Psychiatris we saw (who was paid for by insurance), was absolutely no help. Spent more time filling out the insurance form than talking to ds. I was so frustrated that this was all our insurance had to offer in terms of outpatient mental health services (frustrated, but not suprised). So, I finally gave in and made an appointment with one who was highly recommended but doesn't take insurance. I called his office and after explaining the circumstances, they gave us an appointment the same week. Of course I loved this non-insurance Psychiatrist. He was really good with my son. He believes in PANS and while he doesn't treat, at least we weren't debating the topic. He worked with my son on his OCD issues and also changed his medicine. My son has been able to start one of his school projects that he was previously to afraid to begin because he was so afraid of not making an A on the project. This was a huge accomplishment. He even says he feels better. Whew, what a relief.

 

Now, about my daughter.......She was having a flare because of a recent bad cold (not related to ds flare which started months ago), I was using Motrin which was helping a little. I had a steriod prescription for me and decided to do a taper with my daughter based on reports I have heard on this board. I know this isn't probably the best thing to do without a physicians supervision, but desperated times and all....I did 20mg for 6 days, then 10mg for 6 days, then 5mg for 6days, now I am starting the 2.5mg. We have seen good results. This is the first time my daughter has ever gotten oral steriods other than just a steriod dose pack and when she got IVIG. I am just wondering what will happen when we stop the steriods. Will she get bad again?

 

The other issue is this.....Even though my daughter is much better with the steriods, and she has been better prior to this illness, no matter what we do she always (and I mean always), has lingering OCD. It just seems that even when she gets all the other stuff under control (rages, moods, anxiety), there is still this under lying OCD. So I just wonder if I shouldn't just give in and get her an SSRI. I have held off because I worry about her gaining weight and then having body image issues, then you end up with an anorexic teen (am I going to far here).

 

I have one son who gained on an SSRI and another who hasn't. Both were helped with their OCD. My oldest son took SSRI's for several years and when he went off he did loose the weight but he will always have the memories of growing up as a "chubby boy" (this is what he tells me). It's very hard for me to know what to do for my dd. I know that she really needs it. Her OCD seems very refractory to everything else. She has been to USF three times and she has the knowledge and tools to work through things, but most days are still a struggle for her and frankly it wears on the whole family. The last thing I want to do though is trade one problem for another. Thoughts??? Opinions???? Experiences????

 

Dedee

Edited September 9, 2013 by Dedee

[msimon3]

Dedee, we saw the same symptoms come back after a steroid taper. This confirmed our suspicion that the symptoms were immune related. It would seem that if your DD's symptoms get worse, then those symptoms are somehow influenced by her immune system. If the OCD is unchanged, steroids or not, then it would seem as if the OCD may not be caused by the infection or perhaps the OCD is no longer a function of the infection or the immune process.

 

Maybe some standard blood work could be used to see if your DD is still fighting an infection after the steroids? Some people also think CD57 is a useful marker for chronic Lyme while others say it is inconclusive. This year Eva Sapi confirmed that Borrelia build biofilms that help the pathogen survive in the body despite antibiotic treatment. You might want to engage your LLMD on a discussion about biofilm+antibiotic protocols if that is something they would consider.

[airial95]

With my son, we always had lingering OCD between flares. It was always the one symptom that wouldn't completely subside. It would get better, but there were just some rituals that were stubborn. Instead of using medication, we decided to try CBT/ERP therapy. The way our pediatrician described it in our case was this: our son was forming new neural pathways every day, and while he was in a flare, some of these pathways were being formed with the idea that some of these things were just "normal" (like washing your hands after using the restroom - just something you always do without thinking about it.) Like a bad habit. Then he used the drug addict analogy - people addicted to prescription pain meds did have a legitimate reason to be on them in the first place, some sort of injury or severe pain, as time goes on, the injury heals, and the pain meds are no longer needed, but the psychological response becomes "if I don't take them, I know I will feel bad, so I have to keep taking them."

 

Now replace the pain meds with an OCD ritual, even after the PANDAS/biological reason is gone, the child only remembers that doing whatever ritual it was made him feel better - the actually compulsion is gone, but it's replaced by the knowledge that not doing it made him feel bad, so he should just do it not to feel bad - like a drug addict.

 

It's sort of a convoluted analogy, but it seemed to make sense to me.

 

The therapy has really helped for both kids. Mine are younger (5 and 7), and my youngest started therapy about a 9-10 months in to his PANDAS journey (dx at 26 months old), so a lot of his therapy really revolved on how WE should react to his compulsions, how to address them without encouraging them (which we often did).

 

A word of caution - therapy won't be very effective if you're not managing the health aspect of PANDAS. Then it's just like throwing deck chairs off the titanic. But if you're handling the medical side and seeing just a few lingering OCD symptoms - it can be very effective. I know lots of folks have raved about the USF/Rothman Center intensive program. We use them for our regular therapy appointments because they are local for us.

 

We don't do the therapy continually. It's usually 1x per week for about 2 months, and then over the next 2-4 months it spreads to every other week, and eventually to once a month. The best thing we got out of it is that it has given both of our kids a vocabulary to safely discuss/describe their feelings. Which has helped mitigate many an OCD related meltdown/panic attack.

 

I felt more comfortable taking this approach than medicating partially because my son was so young at the time, but also it has given them tools and techniques to use even when in a flare.

 

Ooops!!! Just saw that at the end of your post you said you have gone to USF before. We have found that anytime we get the lingering OCD, we go back for a refresher, yes they have the tools, but sometimes they just need to be reminded. Maybe a local therapist that can give you those touch ups?

Edited September 9, 2013 by airial95

[lfran]

Our doctor just suggested inositol and a number of google pages describe it as a natural ssri that some ocd clinics have had significant success with.

[Dedee]

Uggg......after posting this yesterday, wouldn't you know it we had a terrible night with my daughter last night. As I said we are tapering the steriod and are down to 2.5mg. She had a major meltdown last night complete with rage / violence, the whole nine yards. Haven't seen that in several weeks. I have had it. She just wears me out. Just when I think she is getting better.....WHAM, here we go again. Some days I don't know how much I can take......

 

Dedee

[LexMom]

Sorry...we have that experience also. My DS will have a great day. He'll be really happy when I pick him up from school, then cry himself to sleep at night and refuse to go to school the next day. It's so frustrating. I try to remind myself that at least we are not where we were a year ago.

[JoyBop]

I would not assume that the OCD is not immune related if it didn't dissapear with steroids. The fact that she got better with them is plenty if evidence. It can take a long time for he OCD to just go away. The more connections that are made in the brain the more it changes the brain and how a person behaves and processes things. When someone who has had OCD for a period of time, its going to take more than a short dose if steroids to see the end of it.

 

As far as SSRIs everyone person is different. Ds8 is on Zoloft and while it doesn't make the OCD go away, it does take the edge off so that we can try to work on his coping strategies. He has not gained any weight on these meds but again, every child is different. If your doc is offering a solution, I would be inclined to try it. You can always stop taking it if it doesn't give the best results.

 

I hope you are getting the answers and help you need. Glad to hear there has been good progress.

[dcmom]

Also- what age/ weight is your dd- your dosage was low- even when my dd's were 6 to seven, we started at 40mg.

Edited September 14, 2013 by dcmom