Trying not to freak out....

[wornoutmom]

I know I am PMSing, and also found out my boss died suddenly yesterday, so I am not in the best frame of mind myself today. But this week marks one year to when I saw the "change" come over my son after returning from a 3 day business meeting, and his behavior this week is almost identical to last year. We did IVIG 8 weeks ago, saw some "turning back of pages", but I kept holding out hope. We saw good changes around week 3-4, though vocal tics were back and off the roof. Some trouble week 5 anticipating day soccer camp, but pushed through it and was so proud of himself for managing this "exposure" experience. He was expressing his feelings/worries so well and handling things with great maturity. Then last week, we took a family vacation to Hawaii. I was nervous about exposing him to the airplane bugs, but felt this was something really special for our family, to celebrate all we had survived through. He handled a whole lot of uncertainty around the trip with grace and humor. He loved it there and it warmed my heart for us all to be experiencing some good times finally. Dad got "Montezumas Revenge" on the last day, and Carter said he felt a twinge of it but not as bad as dad. We've been home since Saturday. He's been sleeping non-stop again. At first I thought it was jet lag,and/or post vacation let down. But it's been 5 days now and things are getting worse. Had his braces adjusted on Monday, so in some pain. He says he has been feeling horrible (back with his history of non-specific illness - fatigue, muscle soreness, and just general "malaise" that he seemed to be experiencing every 3-4 weeks during the school year). Today his face looks puffy and he has dark circles under his eyes. He's done very little but lay on the couch and sleep or watch tv the past week. And every day he is back to saying his brain is bothering him. Last night he said he thought the IVIG was going to make it all go away, but it didn't. I told him that was the best case scenario, but not necessarily the outcome, and tried to point out all the progress he has made since the winter (not raging, not destructive, not living in constant terror). But today he started yelling and crying that I wouldn't tell him what was happening (this is his biggest OCD trigger - a few weeks ago he was able to acknowledge he felt uncomfortable not being in control and needed to work on that), and even when I did he got more and more confused until he fell asleep. I attempted to wake him once and he yelled at me to leave him alone. He is still on full strength Biaxin (has been since April), takes 500 mg of DHA and Vit C daily along with probiotic, and on 100 mg Luvox CR. We have weaned him down to .125 mg Risperdal. I started the Motrin yesterday. I'm not sure what to do for him now. How long do I watch him spiral down before I declare it's more than a temporary set back? Would steroids help? We have 4 days worth in the closet...We haven't gone through with teh Igenex testing because I've been scared to take him off the Biaxin long enough to get it done accurately. I have been positive with him for many months about his disorder and recovery, but today I am feeling hopeless, helpless, discourage, and scared out of my wits for him. We have a month till high school starts. He's supposed to start drivers ed next week. If he stays like this, its going to be nothing but more pain and misery. I was so hoping things were truly turning around for him, but now I'm not so sure. My mind is going to the worst outcomes, which isn't helping him or me, but it keeps going there... My heart is breaking for him. And I'm tired - don't see how I can keep doing this...Praying this is just a sawtooth, but somehow not feeling so confident...

[kimballot]

I am so sorry to hear that you are having a setback. If I am remembering correctly, your son had the confirmed encephalitis (vie PET) scan in the past.

 

Many people have posted about the benefits of spironolactone for brain inflammation. We've never used it, but it may be worth asking your doc or calling Scott Smith's group -

 

I found this article - if it helps.

 

http://www.vitalitywellness.com/education/pdfs/Spironolactone.pdf

 

and I found this thread

http://www.latitudes.org/forums/index.php?showtopic=7960&st=0&p=64872&hl=spironolactone&fromsearch=1entry64872

 

 

I'll be thinking of you -

[MomWithOCDSon]

Wornoutmom --

 

So sorry to hear about this latest downward "blip." I heard an echo of a lot of what my family has been going through for the last couple of weeks. We got back from our family vacation the third week of July (also air travel, though nothing as exotic as Hawaii!), and though our DS had mustered very well while actually ON the vacation, the slide backwards behavior-wise once we got back was startling. It was as though he had expended all his good humor, OCD management skills and spontanteity during the vacation and now had nothing left for regular, everyday life! We began to wonder if he was re-exposed, either in all the public gatherings out of town, or on the airplane heading out or back.

 

Like yours, my DS remains on full-strength ABX and he was taking 100 mg. of Luvox, also, until very recently. We, too, have a filled prescription of Prednisone in the closet which we've yet to use, though it did cross my mind more than once in the last couple of weeks.

 

We took our DS back to his ERP therapist and said "help us," and we went back to the psych, too, to re-evaluate the Luvox. He'd been on a dose as high as 200 mg. just a few months ago, and DH and I had decided to decrease the dose on our own because 1) we weren't convinced it was helping him at all, and 2) via the Murphy/Storch paper and the experiences of so many parents here, we thought it might be activating him. A reduction to 150 mg. improved his behavior, and another reduction to 100 mg. improved him yet again. So, at this point, after the vacation, we were wondering if we should try going down to 50 mg., or maybe switch and try another SSRI at a low dose level.

 

I'm sorry, I don't remember much about your DS. Does he, by any chance, have any comorbid behaviors in his PANDAS in addition to the OCD? ADHD? Processing differences that might mirror something on the high-functioning end of the autism spectrum? My DS has some of those comorbid characteristics, particularly when the PANDAS is raging, so I attended a session on OCD and Comorbid Conditions (Tics, ADHD, Autism-Spectrum) at the IOCDF conference last month; Eric Storch of Murphy/Storch was on the panel. Anyway, they cited two studies . . . one that's completed and published and one that is currently underway . . . addressing this particular piece of the puzzle. As it turned out, low doses of Zoloft was discovered to be the SSRI of choice for these comorbid kids.

 

So, long story short, we were back at the psych last week and began the switch from Luvox to Zoloft. I am knocking on wood hard enough to make a dent in it as I'm writing this, but my DS has begun to come back around already. He's moving past the obsessive thoughts more readily, calling up friends again, getting through tasks more quickly, has a happier attitude . . . a reversal of all the things we saw going south just a couple of weeks ago. And since he was already on a high dose of abx (Augmentin XR), the Zoloft was the only intervention change we undertook.

 

So, was he re-exposed and it just took a week or two for the Augmentin to level him back out? Or was Luvox always the wrong drug for him, at any dose? Or is the Zoloft really addressing things somehow in a way none of the other interventions could? Don't know, but we're grateful. And I thought I'd share that in case it's something you might investigate.

 

Another thing, too. During DS's toughest part of the exacerbation, our psych had him on risperadol and sometimes zyprexa, as well. Neither of these seemed to be especially effective for him, and I didn't care for the way they "dulled him down." You might consider, in addition to Ibuprofen, trying some valerian root? In terms of calming our DS's anxiety, frankly, we've found it to be every bit as effective as risperadol ever was, without all the side effects. Since it's easy to acquire and inexpensive, it might be worth a try.

 

Most of all . . . . hang in there!!! It can turn around again!

[lyme_mom]

I know I am PMSing, and also found out my boss died suddenly yesterday, so I am not in the best frame of mind myself today. But this week marks one year to when I saw the "change" come over my son after returning from a 3 day business meeting, and his behavior this week is almost identical to last year. We did IVIG 8 weeks ago, saw some "turning back of pages", but I kept holding out hope. We saw good changes around week 3-4, though vocal tics were back and off the roof. Some trouble week 5 anticipating day soccer camp, but pushed through it and was so proud of himself for managing this "exposure" experience. He was expressing his feelings/worries so well and handling things with great maturity. Then last week, we took a family vacation to Hawaii. I was nervous about exposing him to the airplane bugs, but felt this was something really special for our family, to celebrate all we had survived through. He handled a whole lot of uncertainty around the trip with grace and humor. He loved it there and it warmed my heart for us all to be experiencing some good times finally. Dad got "Montezumas Revenge" on the last day, and Carter said he felt a twinge of it but not as bad as dad. We've been home since Saturday. He's been sleeping non-stop again. At first I thought it was jet lag,and/or post vacation let down. But it's been 5 days now and things are getting worse. Had his braces adjusted on Monday, so in some pain. He says he has been feeling horrible (back with his history of non-specific illness - fatigue, muscle soreness, and just general "malaise" that he seemed to be experiencing every 3-4 weeks during the school year). Today his face looks puffy and he has dark circles under his eyes. He's done very little but lay on the couch and sleep or watch tv the past week. And every day he is back to saying his brain is bothering him. Last night he said he thought the IVIG was going to make it all go away, but it didn't. I told him that was the best case scenario, but not necessarily the outcome, and tried to point out all the progress he has made since the winter (not raging, not destructive, not living in constant terror). But today he started yelling and crying that I wouldn't tell him what was happening (this is his biggest OCD trigger - a few weeks ago he was able to acknowledge he felt uncomfortable not being in control and needed to work on that), and even when I did he got more and more confused until he fell asleep. I attempted to wake him once and he yelled at me to leave him alone. He is still on full strength Biaxin (has been since April), takes 500 mg of DHA and Vit C daily along with probiotic, and on 100 mg Luvox CR. We have weaned him down to .125 mg Risperdal. I started the Motrin yesterday. I'm not sure what to do for him now. How long do I watch him spiral down before I declare it's more than a temporary set back? Would steroids help? We have 4 days worth in the closet...We haven't gone through with teh Igenex testing because I've been scared to take him off the Biaxin long enough to get it done accurately. I have been positive with him for many months about his disorder and recovery, but today I am feeling hopeless, helpless, discourage, and scared out of my wits for him. We have a month till high school starts. He's supposed to start drivers ed next week. If he stays like this, its going to be nothing but more pain and misery. I was so hoping things were truly turning around for him, but now I'm not so sure. My mind is going to the worst outcomes, which isn't helping him or me, but it keeps going there... My heart is breaking for him. And I'm tired - don't see how I can keep doing this...Praying this is just a sawtooth, but somehow not feeling so confident...

 

Sorry to always be talking about Lyme but I was just talking to Dr. Jones' (the lyme pediatrician in CT) office today about how the airplane ride home from CT in April seemed to make my son worse. They told me that this often happens with lyme patients. I attributed it to the high emfs which lyme loves. Could be some other factor too. The flight from hawaii is so long that it does not surprise me that it could stir things up. His symptoms sound very lyme-like: the muscle aches, general feeling of malaise, the sleeping, the irritability, the three to four week cycle of symptoms, the puffy dark circles under the eyes, etc. My lyme doctor would start treating him right away b/c lyme is the first thing they suspect b/c it is so common these days. You have nothing to lose by a trial treatment as long as he takes probiotics. You can still get the igg and igm lyme panels from igenex (200 dollars total) while he is on antibiotics. As a matter of fact he may be old enough for a cd57 test which comes back in three days and is covered by insurance. It doesn't work for kids but I know they give it to teenagers but not sure what the cutoff age is. My 13 year old is too young for it I think. I agree that you should not stop the antibiotics if he is not doing well. The right combo of antibiotics make all the difference in the world. WIth lyme they change antibiotics every so often so that they continue to kill lyme. Doxycyclene and amoxicillin are best for lyme and they usually add a second antibiotic like azithromycin or ceftin within a month or two of starting the first antibiotic. There are so many combinations they use but the most important thing you can do is to see an ilads specialist. I am so glad your family had a chance to get to Hawaii after all the stress. Its my favorite place! Lyme isn't the end of the world. It is treatable and patients usually start feeling a lot better once they get on the right combo of drugs. Good luck.

[sf_mom]

I was actually thinking the same thing 'Lyme'.

 

By the way, they did CD 57 on my friend's son and he is only 7. Their Dr. is Stricker in SF.... the one who made the original connection/test on CD57. His results were low.

 

We are pursuing Lyme. My daughter has high CaM Kinase of 157 and normal anti's.

 

-Wendy

[Mary M]

Text me all week end as needed. I may not have internet access. You will get through this...this is just a blip...our kids will get better!

Mary

[lyme_mom]

I was actually thinking the same thing 'Lyme'.

 

By the way, they did CD 57 on my friend's son and he is only 7. Their Dr. is Stricker in SF.... the one who made the original connection/test on CD57. His results were low.

 

We are pursuing Lyme. My daughter has high CaM Kinase of 157 and normal anti's.

 

-Wendy

 

Thats interesting. Dr. Jones told me it doesn't work on kids and my local lyme doctor doesn't use it for kids either. However our first lyme doctor used it and my son's score was 400 when he was most sick with lyme! I figured it didn't work b/c he was glowing with lyme at the time, he had lyme induced bells palsy and several very positive lyme tests-even passed the Elisa with flying colors which is hard to do. I know my local doctor used it on a friend's daughter who is 15 or 16. The guy who invented it must know what the cut off is!:-) so that is very interesting. I'd love to know what the issue is with kids.

[LNN]

Wornoutmom,

I'm so sorry - your family shouldn't have to be dealing with this. I too had a low point this week (we are 7 weeks post-ivig). Lots of kleenex were sacrificed. But after bottoming out, I did an experiment. We've been dosing 3x day with Motrin for about 4 weeks now. Whenever we try to skip a dose, we can tell a difference almost to the hour of when the next dose was due. Earlier this week, DS couldn't do simple addition (math has always been his strength, even in bad pandas episodes). He took a Motrin and an hour later, flew through the same math problems. He looked at me like "this is crazy". So I know that whatever is at the root of our problem is inflammation based.

 

I agree with the others who feel you should do Igenex when enough time has passed. But yesterday I started reading a book on yeast and the many of the neuropsych symptoms we're still dealing with show up on a list in Chapter 1. DS takes probiotics, but he does have loose stools probably once a week and perhaps yeast is the problem that's masking any improvements IVIG may have made. It may be a stretch, or it may be the very thing that's wrong.

 

I completely feel your discouragement - this big gun was supposed to make things better and now you and your son are wickedly disappointed and discouraged. School looms and the nightmare just never seems to end. But please know the answers are out there. We are bleeding edge guinea pigs, but we also need to be stubborn, tenacious mules. There are many things that could be at play. Try to step back and ask yourself what clues you haven't yet pursued. Lyme, yeast, co-infection...I'd hold off on prednisone until you had an answer on Lyme. Try the Motrin on a regular, consistent schedule for a week to see if you notice a difference - often when we dose sporadically, we don't see much change. But now that we're consistent, we do. Try upping the probiotics or adding in other strains. But get some sleep and then see if you can put your Sherlock Holmes hat back on and come back slugging. We're all here for you.

[wornoutmom]

Thanks to all for your support. Not ready to come out slugging yet - I'll get there once I get past the grief of this. He was feeling a bit better today and a bit calmer and we went out to the movies and all was ok, until he got tired and upset at home and distraught again. He is convinced he will be sick again tomorrow and he wont have any fun and the day will be ###### and his brain will torture him again. He doesn't understand why this is happening again to him when it wasn't before and there is no stress. He just wants to go back to his life, but his brain and body aren't letting him. He can't use the CBT he knows because it is too strong. He can't be convinced this isn't forever. He doesn't want more tests or more doctors. I told him we have to try to ride this out for now, until he isn't feeling sick anymore. Dr K says the bench mark for another IVIG is 2 weeks of regression, right? I know our neuro will say this would be the thing to do. But we've yet to pay off the loan on the last one! They also said to make sure to treat any illness aggressively, but how do you do that if it's a virus?? Even Lyme testing will take weeks..It's only been 4 days, but it feels like 400. I HATE THIS *&&&**&@**!!!! DISEASE!!!!!!!!!!!!!!!