Too late for PANDAS dx?

[Laurensmom]

Hello all,

 

My dd was dx'd with TS and OCD about five years ago. At present, her tics are mostly a non issue. However OCD is beginning to wax.

 

My child did have a strep culture, but I don't believe she had titers drawn? IF PANDAS was an issue, is it too late to know? Or, to get a proper dx via tests?

 

Any info is greatly appreciated.

 

Thanks!

[thereishope]

If OCD is returning (even without the tics), I always would say take her in for a strep test to make sure she's not sick. Did the OCD go away in the past or did it just remain? I ask because with my son's last exacerbation he had residual OCD we had to overcome.

[momaine]

Hello all,

 

My dd was dx'd with TS and OCD about five years ago. At present, her tics are mostly a non issue. However OCD is beginning to wax.

 

My child did have a strep culture, but I don't believe she had titers drawn? IF PANDAS was an issue, is it too late to know? Or, to get a proper dx via tests?

 

Any info is greatly appreciated.

 

Thanks!

 

I know someone whose dd suffered for 12 years with this and with proper antibiotics she's doing very well now. It's not too late but there isn't a test to prove she has it, that I know of. (someone can tell you more about the Cunningham tests) It's sort of a set of symptoms that makes it likely or not. Some kids respond positively with Advil which reduces inflamation of the basal ganglia. Sometimes doctors will do a steroid burst and if they respond, it is more likely PANDAS. If it is PANDAS many kids do well on antibiotics. (only certain ones though) Keep reading this site. Lots of info to glean. I'm in the middle of this myself. good luck.

Angela

[MomWithOCDSon]

LaurensMom --

 

I don't think you're too late; the only question families like yours and mine have to answer is, if it is PANDAS, will the standard treatments work? Will they take longer? Shorter? Will they have staying power?

 

My son is 12 and was diagnosed with OCD when he was 6. I'd mentioned PANDAS to his doctors early on in his diagnosis, but I basically got waved off; it was even less recognized and/or respected then than it is now. But after I read "Saving Sammy" by Beth Maloney, I decided to try again.

 

We got an ASO strep titers test at our local hospital. The "normal" level varies according to each lab's parameters, but "normal" generally tops out around 200 or so, from what I've seen. My son's strep titer count was 438, twice the norm, though he's never been symptomatic for any kind of strep infection! So, armed with that information and copies of "Saving Sammy," I went back to our doctors and begged for some medical intervention. Our pediatrician asked if I had any idea what antibiotic protocol to implement, and I pulled out a matrix of sorts that I'd fashioned from Sammy's history.

 

We started on 875 mg. of Augmentin, and we saw positive results in two days, which is to say, it wasn't too late for a PANDAS diagnosis for us! But what I'm not clear on is whether or not this treatment will work long-term, or if going 6 years with the elevated strep antibodies and/or the OCD hasn't perhaps physically altered the structure of his brain to the extent that we can't expect the miraculous response Sammy seems to have had.

 

I'm encouraged by this forum because it seems there are a lot of people who are ahead of us in this journey. Hoping they can help shed light on which step to take next!

[MichaelTampa]

On Dr. K's website (webpediatrics.com), he give his experience that as long as you are before puberty, how long the child has had the condition really has not mattered in terms of how well the treatments will work.

[thereishope]

With my son's last strep triggered exacerbation, I noticed that he seemed like he was over his PANDAS exacerbation but he still had residual OCD. At that point, we began to address the OCD like regular OCD, not PANDAS OCD. He then overcame the remaining OCD rather quickly and is currently OCD free.

 

I am assuming you've been through things like CBT and ERP since he has been living with OCD for years. Even if they did not work before, you still hopefully remember some of those stategies. Often, they tend not to really work during an exacerbation ( it wouldn't have worked for my son while in the middle of an exacerbation) but perhaps as the antibiotics start to do their job and he starts to get further on in recovery, you can start to incorporate some of those skills again and he may be more receptive to them. Even if your son does have residual OCD, it does not mean it is there to stay.

 

 

 

But what I'm not clear on is whether or not this treatment will work long-term, or if going 6 years with the elevated strep antibodies and/or the OCD hasn't perhaps physically altered the structure of his brain to the extent that we can't expect the miraculous response Sammy seems to have had.

[MomWithOCDSon]

Thanks for the reply and encouragement.

 

Yes, we've been through CBT and ERP; in fact, we're back in therapy now on a regular basis due to this most recent exacerbation/waxing of the OCD. The skills and techniques definitely help.

 

I think that his dad and I are just flumoxed and perhaps have too high expectations regarding the antibiotics efficacy and timing. When our son was first diagnosed, CBT seemed to work wonders. Then, when his behaviors got "too big" for therapy alone, we moved on to an SSRI -- Lexapro -- and it worked relatively quickly and like a charm for nearly 5 years.

 

But then, with this latest exacerbation, we couldn't find anything that actually worked, and our lives were turned upside down. We had to withdraw him from school, cancel vacations, etc. It's been a nightmare, frankly. Now I finally feel as though he's on his way back, but it is an agonizingly slow and uneven process. So I've not been certain the antibiotics could really work for him. But I'm very encouraged by all I read on this forum, and I am going to reach a little deeper for some more patience!

 

Thanks!

[thereishope]

Is he still on any SSRI's? If so, keep in mind that some PANDAS kids don't react well to them and PANDAS kids have to be dosed different. As for the antibiotics, don't give up. Just don't see it as an option. During my son's recoveries, we'd see setbacks, bumps in the road, plateaus, etc. But eventually we got him back. This last time it took 5 months to get him fully back. It's different for each kid and each exacerbation. Some longer, some shorter. If you've seen some improvement on the abx, that's great! Also, keep in mind, that if need be abx is not the end of the road. There are other options if it comes to that.

 

Do you try Ibuprofen to see if that help eases his symptoms?

[Laurensmom]

Thanks for all the great responses guys. I'll try ibuprofen and see if it has an impact for starters.

 

I just received Saving Sammy in the mail so I'll read that as well and check back in.

[Laurensmom]

Brief update. My dd said that ibuprofen seemed to help. She's not one to think something is helpful if it's not. Also it seems when she's ill the FIRST sign of illness is a dramatic increase in tics. The tics can come days before other symptoms.

 

I'm going to pursue this further with her ped.

[Fixit]

Yes it's us that went 12 years before getting the right antibiotic (Keflex) we took the Cunningham Test which measures the Cam Kinase Levels (Son was 189 Daughter 142) daughter had MUCH worse symptoms. Both had tics, daughters worse and she had horrible OCD. They tested their anti-neuronal antibodies. 3 out of 4 were high for my daughter, only one out of four for my son. Interestingly I tried my daughter on Biaxin as she has Mycoplasma Pneumonia antibodies as well. It made her worse. Put her on Azith (500mgs) WITH keflex (2000mgs) and her OCD became worse. Put her back on JUST Keflex and started a wild yam cream for progesterone and she doing marvelous again. Keflex seems to be the magic cure for us!

 

Nancy

Hello all,

 

My dd was dx'd with TS and OCD about five years ago. At present, her tics are mostly a non issue. However OCD is beginning to wax.

 

My child did have a strep culture, but I don't believe she had titers drawn? IF PANDAS was an issue, is it too late to know? Or, to get a proper dx via tests?

 

Any info is greatly appreciated.

 

Thanks!

 

I know someone whose dd suffered for 12 years with this and with proper antibiotics she's doing very well now. It's not too late but there isn't a test to prove she has it, that I know of. (someone can tell you more about the Cunningham tests) It's sort of a set of symptoms that makes it likely or not. Some kids respond positively with Advil which reduces inflamation of the basal ganglia. Sometimes doctors will do a steroid burst and if they respond, it is more likely PANDAS. If it is PANDAS many kids do well on antibiotics. (only certain ones though) Keep reading this site. Lots of info to glean. I'm in the middle of this myself. good luck.

Angela

 

how interesting...the child with the lower score had worse symptoms....

also interesting are the combinations you tried,,,,the results .....and where you are now....

i guess the messagage is just keep trying!!!!!!

Edited April 25, 2010 by Fixit

[Laurensmom]

Is he still on any SSRI's? If so, keep in mind that some PANDAS kids don't react well to them and PANDAS kids have to be dosed different. As for the antibiotics, don't give up. Just don't see it as an option. During my son's recoveries, we'd see setbacks, bumps in the road, plateaus, etc. But eventually we got him back. This last time it took 5 months to get him fully back. It's different for each kid and each exacerbation. Some longer, some shorter. If you've seen some improvement on the abx, that's great! Also, keep in mind, that if need be abx is not the end of the road. There are other options if it comes to that.

 

Do you try Ibuprofen to see if that help eases his symptoms?

 

May I ask how the dosing would differ for a child with PANDAS?

 

Thanks again all.

[simplygina]

Is he still on any SSRI's? If so, keep in mind that some PANDAS kids don't react well to them and PANDAS kids have to be dosed different. As for the antibiotics, don't give up. Just don't see it as an option. During my son's recoveries, we'd see setbacks, bumps in the road, plateaus, etc. But eventually we got him back. This last time it took 5 months to get him fully back. It's different for each kid and each exacerbation. Some longer, some shorter. If you've seen some improvement on the abx, that's great! Also, keep in mind, that if need be abx is not the end of the road. There are other options if it comes to that.

 

Do you try Ibuprofen to see if that help eases his symptoms?

 

May I ask how the dosing would differ for a child with PANDAS?

 

Thanks again all.

 

My son was put on Zoloft in February 2009 before we realized we were dealing with PANDAS. We started with 25 mg and saw a very positive bump in his mood and coping abilities. A month later we decided to move up to 50 mg to see if more would actually help with the OCD. We thought it might be but we were already heading into spring/summer which is generally a better time for him anyway. During the summer we bumped up a few more times times and settled at 100 mg for a few months, still thinking it might be helping, but not sure.

 

When school started we saw a ramp in symptoms, plus he started having tics. They coincided with a strep infection his brother had in September. In October we met with the doctor again and talked about the increase in OCD and the tics. I mentioned PANDAS but his rapid strep test came back normal. I figured this meant it wasn't PANDAS and assumed it was regular OCD and TS. We decided to bump the Zoloft up to 150 mg. I was worried but had also read that it took a higher dose for OCD than it did for depression.

 

Within 2 days I realized the higher dose was making him manic and activating him to almost choreic like movement. He couldn't still still, talked non-stop at an alarming speed, wasn't sleeping well, and was writhing in a way I had never seen before. I asked DH if he thought the Zoloft had helped much and he agreed that he didn't feel it really had after the initial dose.

 

So we slowly began tapering him off. That's when I realized that the 15 lbs he had gained in 6 months was a side effect of the Zoloft, not him eating too much (he was eating like a bird) or not getting enough exercise (he practices karate 6-9 hours each week). I also think it likely sent him into puberty early because at 10 years old he was definitely starting. Once we went back to 100 mg the writhing and mania stopped. At 75 he stopped gaining weight. By Christmas we were down to 25 mg again. And it didn't change the OCD for the worse at all.

 

We have tried several times to get off the last 25 mg but end up with some pretty major withdrawals. I think the 25 mg may be just enough to boost his serotonin without causing problems. We had decided to keep him there for now.

 

A few weeks ago someone posted a study that showed SSRIs actually increase CamKinase II activity, which explains why so many parents have said the SSRIs seem to make their child worse. I read in another book somewhere (sorry, wish I could tell you the name of the book but I don't remember) that small doses seem to work the best, coupled with diet and exercise.

 

So for us, it does seem to help, but the 40 days of Biaxin we've done so far have done everything and more that I hoped Zoloft would do, which was really surprising to me. I thought it would help more with the OCD and tics, which it has to some extent, but the huge improvement is in his mood and coping capabilities.

 

Biaxin was our 3rd abx try. I had read several posts where switching provided a sudden rapid improvement. That certainly was the case for us. Augmentin helped some, but he still got a raging sinus and ear infection while on the full dose for over 3 weeks. Looking back at his medical record I have found several instances where amoxicillan just didn't work for him. We then switched to Omnicef, which cleared the ear infection but not the sinuses but left him an absolute emotional wreck. I was actually really scared for his mental health for the first time. Then we switched to Biaxin and his sinuses cleared right up and within 24 hours I noticed a HUGE mood change. We ran out once for 3 days and saw a definitely backslide. We also tried to cut back to half dose and within a week noticed he was headed downhill again. I don't know how or why it elevates him mood, but it definitely does.

 

We have to switch off Biaxin at the end of this round to avoid complications arising in his gut, which has me worried. We'll be switching to Azith. I hope it has the same effect for him.