Pandas?

[porkchop]

I have been reading the boards for several months now trying to decide whether or not my son has pandas. I have posted once before, but that was before we found our dr. We have been going to a dr. for about 4 months and he said he thinks its pandas but is also looking at klein levin syndrome. My son has alot of the symptoms of pandas but what has the dr. confused it that his symptoms are cycling. He has an "episode" that lasts about 2 weeks, then he is normal for 2 weeks and then the episode happens again. Klein levin symptoms cycle, and from what i have read, pandas do not cycle? Here are his some of his symptoms: he gets very tired and sleeps alot, he refuses to eat at times, other times he will only eat a certain food during the episode, he paces the floor walking in circles and chewing on his shirt, he licks things and he has anxiety. Sometimes he has major meltdowns over nothing, and other times he has anger at small things. He will tap the side of his face and then tap the other side, he taps his teeth with his fingers, he pushes buttons alot for example he will go into the bathroom and stand there and flush the toilet several times in row, or in the car he will wind the window up and down several times. He seems to be in a constant panic attack sometimes, will not get dressed and does not respond when spoken to. He repeats the same few words over and over again sometimes, and often stutters. We have been through several other tests trying to figure it out, but it all leads back to pandas, we just cant figure out the cycling. The dr. did throat cultures and titers when he was NOT in an episode, and they where normal, and then when he was in an episode his titers where in the 600 range but his throat culture was normal, and then he repeated again after and episode and he said his titers had come down. He never had a positive strep test. This all started after a chicken pox vacinne, then a high fever, and then mono. He had a round of IVIG the first week of April, and he did not have an episode for about 23 days, which is longer than he has gone with out one in a while, so does that mean he has pandas and that the Ivig worked, sorta? The dr. wants to schedule him for another treatment this week, but how many times does he need this ivig? Does this even sound like pandas? So far all the other tests the nuerologist has done have come back normal. He even did a presentation on my son with 30 other dr.s to see if anyone had any other ideas or treatments in mind and he said they all thought that the pandas and the treatment plan was the best way to go, but again they where all confused because of the cycling of his symptoms. This has been going on for a year, and I just want my child back. It is so hard to watch him play and be normal, and know that at some point he is going to be sick again. he is missing out on so much, he has missed 70 days of school already. he is special needs also, and has severe speech delays so it is hard to know what he is thinking or what is bothering him when he gets like this. Any input would be appreciated.

[smartyjones]

tired -- are you seeing a 'pandas expert' or a dr who believes in pandas? i think there can be a big difference.

 

first, i will disclaim that i am a big believer in getting to the root cause of the trouble. both my children have shown to have numerous infections. ds6 had clear strep indicators, had 100% remission but relapse. when he wasn't getting healthy, we searched for other infections. ds9 went straight to our current dr when he started with symptoms and was found to have numerous infections. i now consider them to be PITAND - multiple causes.

 

are you familiar with the distinction btwn PANDAS and PITAND? you do have some evidence of strep with titers but it sounds like you have multiple evidence of other infections as well.

 

i looked at the klein levin foundation and saw they state they don't know a cause. it sounds to me like your ds has enough history of infections to NOT just label with a syndrome that seems to fit and not keep searching for the cause. perhaps it is 'klein levin' . . . but why?

 

good luck.

Edited May 9, 2011 by smartyjones

[porkchop]

The dr. I am dealing with is not an "expert" in pandas but he studied under Dr. Swedo and knows her personally and has spoke with her collegue about my sons case. He is looking into anything else he can think of to make sure that he is getting the right diagnosis, and that he is not missing anything. He said he will refer him to see Swedo at the NIH if he cant figure this out. We are going in for a lumbar puncture tomorrow and then possibly a 2nd round of ivig. He is going to look for inflammatory diseases. I have read about klein levin, but he does not sleep all the time like that. He does sleep more than usual, but is that uncommon in pandas kids? I thought I saw a post once where the child was hard to wake and slept alot more during a flare? He has the ocd, he has the anxiety, he has the meltdown/rages but he does not have any strep infection(that we can find). We have ruled out lyme, although the dr. said he will look for that in his spinal fluid, and so far it seems to point to pandas/pitands. It just seems like his symptoms change all the time, but they remain the same. He has the ocd, anxiety, but I guess how it presents seems to change from epsisode to episode. I just cant figure out the pattern. If it was pandas, wouldnt the symptoms come and go less frequently than my sons? What is it about the every 14 days that is causing us to see the flare up of his symptoms? Thats the part that has us all confused.

[kimballot]

tired -- are you seeing a 'pandas expert' or a dr who believes in pandas? i think there can be a big difference.

 

first, i will disclaim that i am a big believer in getting to the root cause of the trouble. both my children have shown to have numerous infections. ds6 had clear strep indicators, had 100% remission but relapse. when he wasn't getting healthy, we searched for other infections. ds9 went straight to our current dr when he started with symptoms and was found to have numerous infections. i now consider them to be PITAND - multiple causes.

 

are you familiar with the distinction btwn PANDAS and PITAND? you do have some evidence of strep with titers but it sounds like you have multiple evidence of other infections as well.

 

i looked at the klein levin foundation and saw they state they don't know a cause. it sounds to me like your ds has enough history of infections to NOT just label with a syndrome that seems to fit and not keep searching for the cause. perhaps it is 'klein levin' . . . but why?

 

good luck.

 

I am also a big believer in finding the "root cause" with PANDAS/PITAND and I do believe there are many infections/ types of inflammation that can bring on exacerbations. I am wondering if you have considered lyme infection (or a tick-bourne co infection) for your child. I am not an expert in lyme, but my understanding is that some of these spirochetes can form little cysts that they hide in so the immune system does not find them. I believe they stay in these cysts for about 4 weeks - then come out to reproduce - then go back into cysts. While they are out of their cyst form the immune system can find them and go into attack mode. If you have a child with PANDAS/PITAND, this monthly cycle could correlate with an autoimmune response that would last a couple of weeks and cause a flare up of PANDAS symptoms. Again - I am not a lyme expert and I may have this all wrong... but you might want to look at the lyme board and google around about cycles with lyme disease.

[KaraM]

I was just going to say the ask the same thing...has any doctor suggested testing forr Lyme, some other tick borne infection, or possibly a parasite that cycles??

 

I am also a big believer in finding the "root cause" with PANDAS/PITAND and I do believe there are many infections/ types of inflammation that can bring on exacerbations. I am wondering if you have considered lyme infection (or a tick-bourne co infection) for your child. I am not an expert in lyme, but my understanding is that some of these spirochetes can form little cysts that they hide in so the immune system does not find them. I believe they stay in these cysts for about 4 weeks - then come out to reproduce - then go back into cysts. While they are out of their cyst form the immune system can find them and go into attack mode. If you have a child with PANDAS/PITAND, this monthly cycle could correlate with an autoimmune response that would last a couple of weeks and cause a flare up of PANDAS symptoms. Again - I am not a lyme expert and I may have this all wrong... but you might want to look at the lyme board and google around about cycles with lyme disease.

[LNN]

The fatigue and the cycling of symptoms also made me think of tick-borne illness. Yet the rise in titers is also interesting and not something to dismiss. In lyme land, the 4 week cycle is common with a cyst-cycle of lyme and the neuro-psych OCD might make you consider bartonella. Has your son ever had any rashes or anything that looked like stretch marks? Has he had any antibiotics - and if so, how have his symptoms responded?

 

Here's one suggestion for your doctor - check your son's immune complexes. Elevated C3d complexes might indicate a chronic infection. Elevated C3a complexes can suggest lyme and elevated C4a can suggest mold issues (someone from the lyme forum correct me if I got these two crossed - I'm going from memory). The immune complexes aren't proof in and of themselves, but they can tell you something about how active various immune system pathways are.

[butterflymom]

=

Edited October 9, 2015 by tampicc

[MomWithOCDSon]

I can also vouch for the fact that the behaviors can "morph" from exacerbation to exacerbation, especially the OCD behaviors. And those can even morph within a given exacerbation period. So if that's the sort of "cycling" you're referring to, I would think that it would not, by definition, discount PANDAS/PITANDS.

 

My DS may present primarily with contamination OCD for a period; then the contamination will "step back," and he'll be left with "just right" and perfectionism, or scrupulosity. Then, a few weeks later, it will be more about thought rituals. And the "fears" seem to cycle almost continually; which one takes the front and center position seems to have more to do with external triggers (e.g., a health class focused upon human sexuality one week will trigger one fear, and then a social studies unit on racism the next week will trigger another fear) than it does DS's own psyche.

 

I agree you need to aggressively pursue the correct medical treatment for your DS. That being said, if you haven't already, you might also want to consult with a psychologist or psychiatrist who's well-acquainted with OCD and anxiety, ideally along with PANDAS. Perhaps that professional could better examine and offer an opinion as to the atypicality of the "cycling" and other related behaviors. That could then be added to the medical picture in formulating the best treatment protocol going forward.

[porkchop]

Thanks for the replys. We were seen by a lyme doctor and he ruled out lyme and co infections. The only thing the tests showed was that he had high lymphocytes adn low neutrophils? or vise versa, I cant remember. The neurologist said he will look for central nervous system lyme (in spinal fluid) anyway because I keep asking about the possibility that it could be lyme. Will that show any lyme and any co infections? There were several dif things that occured just before my son started having these episodes, one was a tick bite behind his ear. He had a chicken pox shot, few days later had a tick pulled off him, about 21 days after the chicken pox booster he had a very high fever and slept for 3 days straight. I am not sure about a rash, but both my kids always get big lumps after any tick bite, and the dr. always give me antibiotic cream for the bite. He is not on antibiotics, he was on 10days of amox after a blood test back in July after all this started and it revealed he had strep, yet he had no symptoms of strep and I was told mono and strep go together. The antibiotics did nothing. He was seen by both a therapist and a phsyciatrist, and he agreed that there was something going on that and it was medical and not mental. he has had eeg's and they have been normal. He does have alot of muscle twitching when he is resting while in these episodes. If he had lyme/a co infection than the ivig would not help? I am assuming that it did help because he actually went an entire month without an episode, but unfortunatley is now in one.

[butterflymom]

=

Edited October 9, 2015 by tampicc

[smartyjones]

Babesia is said to cycle rapidly (two weeks, or even faster. . . .so this one might fit your son)

 

 

your initial question about sleepiness -- my kids have not really had trouble with excess sleepiness. i don't know that i've heard of that as a type of hallmark symptom as much as interrupted sleep or trouble falling asleep. of course, if he has trouble going to sleep or getting adequate rest at night, it would follow to be excessively sleepy.

 

i went to ds's dr last aug, mainly b/c i have thyroid issues and was experiencing much irritability. he concluded i had multiple infections as well, including babesia. you may want to look into that. sleepiness had not so much been a problem for me now, but i think i had some acute tic borne illness symptoms a few years ago and they had kind of subsided. back then, at times i would be so sleepy, i'd lay down on the floor to play with the boys and their cars or to read and would fall asleep. i also had some breathing things that i now think were likely babesia. perhaps that could explain the sleepiness -- ?

 

my ds9 is negative on all TBI tests through lab corp. however, he had pretty classic babesia breathing symtpoms -- shortness of breath, pains, seemingly exercise-induced asthma. he blew very low on a flow meter and pulse ox was low. chest x-ray and cardio consult were fine. he couldn't play 4 minutes of baseketball in jan/feb. an inhaler did help. traditional med kind of shrugged their shoulders.

 

he's done well with our treatment. yesterday, he climbed an extremely steep hill on a hike and was tired but barely winded w/o the inhaler. i don't think he could have done it w/o stopping multiple times a few months ago.

 

my point being iwth that story is tests results can be questionable. but you sound quite pro-active and your dr seems on the ball. i definitely think you have enough in the history to still be thinking about an infectious cause.

Edited May 9, 2011 by smartyjones

[porkchop]

fogot to mention a few things that could be important, he often complains of jaw/neck pain just before slipping into an episode. Also, when not in an episode, he will complain that his heart hurts. Sometimes he will go outside and run for a minute, and then he comes in breathing hard and says "heart, heart" and I put my hand on his chest it is usually pounding very hard, after very little exercise. Today I watched him get up and play and run, and withing an hour he was very spacey, tired, wanting to just go to bed and he is pacing the floor, his hands are cold and clamy and he is emotional. I just watched him walk down the hallway and he stopped at every doorway and he would "blow air" in each doorway. Is that ocd? He will continue to be like this for about 14 days, and then on day 15 he will wake up and be perfectly normal, and back to himself. It is so hard to watch him slip away every 2 weeks and become this child that can not function. I worry everytime that he may slip into an episode and not come out of it!

[matis_mom]

Hi,

I've not had time to read all the other replies but it seems your son is going on a 4 week cycle. The tiredness is what caught my eye... My son also had the tiredness, sleepiness. He also seemed to get worse every four weeks (usually around full moon). Some say this is due to the fact that parasites (which sort of "protect" the borrelia) have a four-week cycle. It's all very complicated for me to explain. Anyway, ds was first diagnosed with PANDAS with underlying Lyme Disease. All Lyme tests were negative at the time so we just pursued PANDAS treatment, but he could not sustain his gains. So, two years later, he is testing positive for Lyme. I don't know if you have already ruled Lyme and co-infections out, but for starters I would really look at the lists of symptoms (you will find several online) for both Lyme and Bartonella, and see if you find anything that would lead you that way. Just keep in mind no test is 100% accurate.

[matis_mom]

fogot to mention a few things that could be important, he often complains of jaw/neck pain just before slipping into an episode. Also, when not in an episode, he will complain that his heart hurts. Sometimes he will go outside and run for a minute, and then he comes in breathing hard and says "heart, heart" and I put my hand on his chest it is usually pounding very hard, after very little exercise. Today I watched him get up and play and run, and withing an hour he was very spacey, tired, wanting to just go to bed and he is pacing the floor, his hands are cold and clamy and he is emotional. I just watched him walk down the hallway and he stopped at every doorway and he would "blow air" in each doorway. Is that ocd? He will continue to be like this for about 14 days, and then on day 15 he will wake up and be perfectly normal, and back to himself. It is so hard to watch him slip away every 2 weeks and become this child that can not function. I worry everytime that he may slip into an episode and not come out of it!

Goodness, I just read this last post of yours... jaw pain is a very typical symptom of Lyme Disease! I had this myself at the onset of my illness. Heart issues have also reported in Lyme patients. Get to an LLMD!

[butterflymom]

=

Edited October 9, 2015 by tampicc