When to be patient vs get more aggressive treatment

[memom]

DD17 pandas (suspect onset 7 years ago without diagnosis), with dramatic ramp up in symptoms 1.5 years ago with repetative GAS infections. Symptoms severe OCD and choreaform movements. Failed CBT and SSRI's trial lasting 9 months. Reinfected again in June the GAS with continued baseline worsening. Dr Latimer phone consult in July suggesting tonsils out first and Cunningham bloodwork. Elevated antineuronal antibodies (Tubulin and Lysinoglyaside) and CamK 157. Tonsils out mid August with symptom improvement for the first time in over a year to about 50% of normal (still continuing CBT and SSRI as not to confuse the clinical picture). Phone consult again beginning of October with DR. L. suggesting next step of antibiotics (has never done prior to this) and month of steroids. 120lb daughter placed on Augmentin 500 twice daily and 5 weeks Prednisone. Definate honeymoon while on the steroids to about 75% improvement with dramatic decrease in intrusive thoughts and ability to resist need to repeat. As the steroid levels dropped, symptoms increased with having more bad OCD days (still not anywhere near last year, but impacting on her education, which she can not afford after loosing last year almost completely). I took it apon myself to increase her Augmentin to 875 twice daily in the meantime and have another phone consult Friday. I guess my question is, given the slow and sawtooth improvement mentioned with others, when is practicing patience prudent vs considering more aggressive treatment (PEX or IVIG)? Also, if not back to baseline (who knows what that is for these kids that have struggled for so many years without proper diagnosis and treatment), do you keep going to get to 100%? My biggest worry is how old she is and college dreams being dashed due to poor school performance (when she was a B student 2 years ago). I will say lastly that I feel somewhat sensitive to the reality that we are in a much better place that many on this board and I know this. I am just hoping to get dd brain to function normally as it really impacts on learning and all her daily interactions/decision making. Anyone meeting her would not pick up on the fact she has a problem. They would say she was quirky and says weird things.

 

Thanks,

Ellie

[thereishope]

How old is she again? Would you mine listing her remaining symptoms.

[colleenrn]

memom,

How long has she been on the increased dose of 875mg and have you seen an improvement when you increased dose? If you see improvement on the 875, I would think about increasing to 1000 and observe for improvement. I can't comment on the IVIG, b/c I have not done it yet with my kids and struggle as to whether or not to try IVIG.

 

Colleen

[KeithandElizabeth]

Hi Ellie:

 

I think that you will definitely get a bias here, depending on how people are treating their own kids.

 

I would say that especially since she is older, I would treat this aggressively now to prevent problems for her as an adult.

 

Elizabeth

[nevergiveup]

Memom,

 

I think you have two alternatives. First i would consider more steriods at higher doses. Since your dd is 17 she doesn't have the same issues with steriods as children. (Stunt growth ). For autoimmune issues steriods are prescribed at high doses for adults. I once took 1000 mg a day for several days with then a very long taper for a while. In, India SC is treated with IV steriods. (They have a lot of SC due to lack of access to abx) Or I would try PEX since her studies are so important right now and IVIG high dose could create fatigue and pretty strong side effects which may hurt her studies. (Not to mention the turning back of the pages that many parents talk about, which I prefer to call the stirring up of the antibodies or basically a relapse.). My dd has had IVIG it did interfere with her studies for a while (1 month), of course her work load is one tenth of a highschoolers. This is just a moms advice. Of course I would trust Latimers recommendation and see what your dd thinks is best. My dd clearly tells me when things are bad and she needs help. After receiving IVIG and getting an opportunity to be relieved from OCD for a while she now is keenly aware of when it returns. (After years of suffering). I think when you have OCD for many years the child finds ways to cope and us as parents recent the baseline thinking our kids are ok, when in fact they are not. These are the coping skills that psychiatrist implement with the kids. But everyday was still a struggle inside for her. I really did not know how much she "hid" or "coped" until she told me how things were for her after IVIG. She is 13, she hates the OCD. Doesn't complain too much about tics unless they are really bad.

[T_Mom]

Definate honeymoon while on the steroids to about 75% improvement with dramatic decrease in intrusive thoughts and ability to resist need to repeat. As the steroid levels dropped, symptoms increased with having more bad OCD days (still not anywhere near last year, but impacting on her education, which she can not afford after loosing last year almost completely)....my question is, given the slow and sawtooth improvement mentioned with others, when is practicing patience prudent vs considering more aggressive treatment (PEX or IVIG)? Also, if not back to baseline (who knows what that is for these kids that have struggled for so many years without proper diagnosis and treatment), do you keep going to get to 100%?

 

Dear Ellie, this seems to be the top question of the illness: "What to do next?"

In our experience we did things along the way to try to bring her back...if she was progressing on a weekly (not daily) basis in healing then we held steady. When things seemed to plateau for a month or so then we tried something, changed something to see. You are doing that--This does take time. Dr. L is a great resource--when you go back to see her let us know what she advises.

 

It would seem that her improvement on steroids is encouraging and had an obvious effect on the OCD at first--

If it was me, with a 17 year old d, I would be asking about the Augmentin and the "Saving Sammy dose" for awhile, to see what Dr L thought--

[memom]

17yo. OCD. Fuzzy "swollen brain feeling"

 

Ellie

[memom]

About 2 weeks. No notice with the increase yet.

 

Ellie

[memom]

Thanks. I too worry about loosing our window for cure.

 

Ellie

[memom]

I also believe though much better, she still fights with distressing thoughts throughout the day. Today on the way to school, she said, I wish I was back on the steroids. My OCD has been pretty bad again. My brain feels swollen and my thoughts are getting muttled again. That was all I needed to make a decision to keep going forward on finding a longer term solution. She has had glimpses of better days now and that is good.

 

Ellie

[memom]

Thanks, that was helpful. That is how we have been progressing till now. I have another phone consult the Dr. L. tomorrow. I feel a little worried since she has never had a face to face visit but rather been treating over the phone. I will see what she thinks. I would be willing to try Saving sammy dose or even a different stab at steroids (though she was pretty swollen face and dramatic weight gain for the 5 weeks on 60mg daily).

[Joan Pandas Mom]

Hi Ellie,

Same situation with my 15 year old son. He is having his tonsills out on Tuesday. How is your daughter doing?

 

DD17 pandas (suspect onset 7 years ago without diagnosis), with dramatic ramp up in symptoms 1.5 years ago with repetative GAS infections. Symptoms severe OCD and choreaform movements. Failed CBT and SSRI's trial lasting 9 months. Reinfected again in June the GAS with continued baseline worsening. Dr Latimer phone consult in July suggesting tonsils out first and Cunningham bloodwork. Elevated antineuronal antibodies (Tubulin and Lysinoglyaside) and CamK 157. Tonsils out mid August with symptom improvement for the first time in over a year to about 50% of normal (still continuing CBT and SSRI as not to confuse the clinical picture). Phone consult again beginning of October with DR. L. suggesting next step of antibiotics (has never done prior to this) and month of steroids. 120lb daughter placed on Augmentin 500 twice daily and 5 weeks Prednisone. Definate honeymoon while on the steroids to about 75% improvement with dramatic decrease in intrusive thoughts and ability to resist need to repeat. As the steroid levels dropped, symptoms increased with having more bad OCD days (still not anywhere near last year, but impacting on her education, which she can not afford after loosing last year almost completely). I took it apon myself to increase her Augmentin to 875 twice daily in the meantime and have another phone consult Friday. I guess my question is, given the slow and sawtooth improvement mentioned with others, when is practicing patience prudent vs considering more aggressive treatment (PEX or IVIG)? Also, if not back to baseline (who knows what that is for these kids that have struggled for so many years without proper diagnosis and treatment), do you keep going to get to 100%? My biggest worry is how old she is and college dreams being dashed due to poor school performance (when she was a B student 2 years ago). I will say lastly that I feel somewhat sensitive to the reality that we are in a much better place that many on this board and I know this. I am just hoping to get dd brain to function normally as it really impacts on learning and all her daily interactions/decision making. Anyone meeting her would not pick up on the fact she has a problem. They would say she was quirky and says weird things.

 

Thanks,

Ellie