CBT/ERP

[Mary M]

 

Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.).

 

Funny, all of the SIDE EFFECTS of zyprexa listed above are symptoms of a PANDAS exacerbation in my dd. We have had eating and non-eating symptoms at various times though.

Mary

from Michigan

[laure]

I am wondering if SSRIs or other meds would help at all with OCD anxiety, once medical treatment for the underlying cause has begun to work. In Saving Sammy, Beth Maloney indicates that they used Stratera (ADHD drug) and Zyprexa (commonly used for Schizophrenia) for this purpose, with great success. I was going to ask my doctor about possibly using something to help with returning to school, and contamination issues which will likely be exacerbated there.

 

Laure --

 

We are one of those families who uses abx, supplements, CBT/ERP AND low-dose psych meds to help our DS through the worst of the OCD. It has worked for us, but, as you know, there are as many experiences as there are kids! And, from our experience as well as the peer-reviewed paper by Dr. Tanya Murphy, I can tell you that if you decide to go the SSRI route, keeping the dosage very low is key. Sometimes, even "PANDAS psychs" don't fully grasp that, so we parents have to be very vigilent about it.

 

Personally, unless your child is entirely nonfunctional, raging 24-7 or something along those lines, I wouldn't recommend Zyprexa; it is what most docs refer to as a "heavy hitter," and the side effects are not good (increased urinary frequency, dramatically increased appetite, weight gain, sonambulence, etc.). We used it, and I've read some other families have used it, for short periods in their darkest hours, many times just so their distressed kids can finally get some rest.

 

As mentioned before, though, it's important to recognize that none of these drugs actually "treats" what underlies the OCD; they just treat the symptomatic behaviors. However, in our case, we've decided that having our DS be functional, happy, attend school, get through homework, enjoy his friends, eat regular meals, sleep well, laugh, excel academically, etc. is a fair trade-off for adding some low-dose Zoloft into his treatment regimen. The hope is that, as his immune system matures and he gets well-versed and more mature in using his ERP skills and tools, we can eliminate the Zoloft over time.

 

All the best to you!

 

 

Thanks for that advice Nancy! She is being very aggressively treated for lyme, babesia, and bartonella right now, plus a few viruses. She is absolutely making progress, but it is summertime and there are not many stressors. I usually err on the conservative as I consider any other treatment to alleviate symptoms, since she is high-functioning right now physically, and a strong enough student that, at this age anyway, (4th grade last year) she could get by without bringing books/homework home. Although I know her confidence academically would increase a lot if she could, because she hangs out with others who are perfect A students across the board, and school should ramp up this year. She usually fakes it well, but there were trying times in the spring where she didn't make it to school, or music lessons, or hockey practice, etc. because of contamination fears. It is a tough call since she gains a great deal of confidence from being very athletic, and weight gain and general fogginess that zoloft might create would then work against this end of her mental health...I guess we could experiment...waffling here...how much zoloft does your son take? My dd is 92 pounds.

[dcmom]

Mary-

 

YES- the docs here at USF believe the parents need to learn to be the child's psych when done.

 

I am here for the full three weeks, my dh will come for the last few sessions. It would have been great for him to be here the whole time- I am learning so much.

 

The doc is compassionate, yet tough.

 

I REALLY think daily therapy for three weeks is a great way to get started. There is just no way to tack this in one session. I do envision us back here in the future.

 

I agree with the others, there have been times that my kids were in horrible shape. BUT- these tools can be used then- in the babiest steps you can imagine. I think it is helpful to just start giving them a sense of control. BUT- ERP/CBT is NOT a substitute for medical treatment, but I have found equally as necessary. My kids also seem to get to periods of NO symptoms, then OCD will hit like a mack truck, overnight. At that point, we do a lot of trying to calm things down- and get medical treatment.

 

I really think the whole family needs to understand what ocd is, that it is not the child's fault, and the process to start bossing it back.

[JAG10]

I don't think even baby steps worked with the symptoms my dd was exhibiting at that time. I'll phrase it this way; it would not be ethical for a therapist to work with someone who is drunk or high. They're not really aware of what is going on, can't hold a thought in their head for long, and it just isn't productive at that stage.

 

We went through the evaluation and 4 sessions of CBT when the therapist concurred....$1000 later. I just think many Peds and psychiatrists don't know what the heck to do with these kids and know therapies can't "harm" them. Well, when you need to prioritize financial resources as well as your emotional time and energy, it can be harmful if it is "wasted" when the child is not able to utilize the strategies or vocabulary being discussed.

 

I just think it is worth considering to give yourself permission to give the medical angle some time to work to get the child in a place where they are more aware IF you have a kid who exhibits those types of cognitive symptoms, not everybody does so it might not be something all can relate to.

[MomWithOCDSon]

It is a tough call since she gains a great deal of confidence from being very athletic, and weight gain and general fogginess that zoloft might create would then work against this end of her mental health...I guess we could experiment...waffling here...how much zoloft does your son take? My dd is 92 pounds.

 

We've not experienced any fogginess or weight gain on Zoloft, though some other psych meds have made contributions in those regards (Zyprexa, Seroquel, Abilify).

 

SSRI dosage is not usually weight-related, but for comparison's sake, my DS is 14, 145 lbs., and takes 75 mg. He began at 25 mg., and we left it there for a full 6 weeks to see how he would fare before increasing it. Then we increased it to 50 mg. and left it for another 6 weeks before increasing it again to the 75 mg. level. After another 6 weeks at 75 mg., we tried moving it up again to 100 mg., and within 3 days, DS was definitely "activated:" agitated, antsy, unfocused, etc. So we brought it back down to 75 mg., and he's remained there since.

 

In our years with 2 psychs, several exacerbations and attempts to assist with SSRI's, I would recommend the following in general: 1) start with 1/2 the dose originally recommended by your doctor (unless your doctor happens to be Murphy or one of her staff) because few of them really get how minimal a dose may be appropriate for a PANDAS kid; 2) don't be persuaded to increase a dose too quickly, always give a certain dose a full 6 weeks to reach full efficacy before trying an increase; and 3) no matter what the dosage, if you see your child become increasingly anxious or "wired" in the 2 or 3 days following beginning the med or new dose, it's not a coincidence -- it's either the wrong med or the wrong dose for your kid.

[Mary M]

I was able to speak with Dr S at USF yesterday. Nice conversation. They have openings starting at the end of the month. I am hopeful that we can provide dd with some concrete tools for success while she is more functional post IVIg. Timing is everything with our kids isn't it?! Plus three local psychs called me back now so we have some local support as well.

Thank you everyone for your comments here. I have said this before but it deserves to be said repeatedly,

without all of you I do not know how I could have managed with this thus far,

Mary

from Michigan