porkchop

My son had the chickenpox vac. and exactly 21 days later he got sick and was just not right, and has not been right since, and we are now on the "pandas journey" I have asked all of the dr. that we have been to if this could be a reaction to the vaccine, and most tell me that it is not likely given that the symptoms were not immediate. Myself and my mother are convinced that this is a reaction. Needless to say, my younger son will not be getting any further vaccinations until we figure this out...whenever that may be!

probiotics? I dont know anything about that. Should he be on some sort of probiotic to prevent the stomach issue? Is that something that the dr. has to prescribe?

Hi, My son has been on keflex for about 2 months now and has developed some pretty bad diarahea. The dr. suggested putting him back on amoxicillian but he had episodeds when he was on that and so far has not had any problems on the keflex. School is about to start and I want him to stay on the keflex, but I also need to stop the diarahea. What can I do to help with the stomach issues without taking him off the meds?

My son had symptoms that cycled every 10 to 12 days. Dr.s could not figure out why his symptoms were cycling. He would become exhausted and just layed around all day. He stopped eating, would not get dressed, could not go to school and when he was out of bed he would just pace around the house tapping on windows, his head and licking/chewing on things and sometimes he would just repeat the same word over and over 1,000x a day. His symptoms would last the same 10 to 12 days and then he would wake up on day 13 or so and he was happy and full of energy like nothing ever happend. His cycling lasted for exactly a year...from May 2010 to May 2011 he would have these symptoms every 2 weeks, and then he would be fine for 2 weeks. Then he suddenly stopped cycling and we thought he was cured, but now he cycles with the same sysmptoms only they are 4 months apart now and they last for 26 to 28 days. He has had a few rounds of ivig, iv steroids and is now on keflex. Dr.s are not 100% positive its pandas, but for right now that his diagnosis because everything else checks out except his aso titers and anti dnase.

We live in Maryland, close to ocean city but I take my kids to AI dupont in Wilmington, DE. The neurlogist we are working with is not an "expert" on pandas but he has been extremely helpful in working with us and treating my son. He studied under Dr. Swedo and he is very familiar with pandas.

Hi, I dont think the ID is on board with the whole "pandas" diagnosis. He has been somewhat skeptical of this since day one. However, he had always seen us when my son was "normal" but he did get to see him on Wednesday and his response was.. he never really understood what I was talking about, but now that he actually sees it that its "remarkable" to see the difference. What is a "treatment dose" compared to prophylatic? It doesnt seem any diff to me. He was on 1 teaspoon 2x a day when he tested postive, and its now the same dose.

Hi, My son was recently diagnosed with pandas after 2 yrs. Our neurologist recently ordered a strep culture and when it came back we were shocked..it was POSITIVE. My son had no symptoms at all. They started him on antibiotics and we did round 1 of ivig and solomedral(4/23/12). He was fine, then this past Sunday out of nowhere he starts to show symptoms of an episode.. extreme tiredness, irritable, just sorta out of it. We were scheduled to go in for round 2 of ivig on Monday(5/21?12) and when we arrived it was clear to me that he was def. in an episode. The nuero ordered a strep culture and it came back today neg. How can he have no symptoms and be postive, and now he has symptoms and he is neg? We did aso titers a few months back last time when he was sick in Feb. and his titers were 1700, nuerologist said he has never seen anyone with titers that high before. He has been on amox. prophalacticy, and now the neuro wants him on keflex, but the ID said there has never been a strep bacteria that the amox. has not been able to kill. The neuro. said he will look for articles to send to the ID about prophylactic meds other than amox. The ID said my son is basically being treated as if he has rhumatic fever, but even with rhumatic fever..that does not cause all of these ocd, anxiety, panicky behaviours does it?

Hi, Im looking for advice on my 11yr old who has strange behaviors and possible pandas. Does anyones child have a sort of cycling to their symptoms? Every 3 mths? Does a cold trigger the pandas flares? My dr. said my son had "epileptic spikes" on his eeg, but didnt say he had epilepsy? Do pandas kids have abnormal EEGS? Does anyones pandas child sleep alot during a pandas flare? My son has a very hard time getting up in the morning and wants to lay in bed all day. What about chewing on clothes during a pandas flare? He chews holes through his shirts, and he is eating pennies and toilet paper and any other non food item he can get a hold of, but when he comes out of these "episodes" he doesnt do any of this. He is pale, almost gray looking and severly fatigued when this happens. I also feel these "muscle twitches" that go on all day long whne he is laying down and sleeping. We had been working with a dr. who did 2 rounds of IVIG and IV steroids and then put him on anti seizure meds becuase he thought he had pandas and KLS. He went 4mths with out any problems and we though he was cured, then on day he had an eye exam and they dialated his eyes and put drops in them, and then the next day he woke up "sick", so the dr. thought it was seizures. He had Anit Dnase done it was 400 and ASO was in the 500 range, so thats why we did ivig, but he has never had a positive swab. I think my dr. has given up trying to figure this out, but I cant give up on my child. There is something wrong with him and it seems to me everything keeps pointing to pandas. We live in Maryland and I am interested in finding a good pandas dr. in md or delaware or virginia that accepts blue cross or medical assistance insurance. Dr. Latimer does not take our ins. and I have no way of coming up with the money to pay for a visit. Any info would be greatly appreciated, this is really taking a toll on our family.

Hi, Im looking for advice on my 11yr old who has strange behaviors and possible pandas. Does anyones child have a sort of cycling to their symptoms? Every 3 mths? Does a cold trigger the pandas flares? My dr. said my son had "epileptic spikes" on his eeg, but didnt say he had epilepsy? Do pandas kids have abnormal EEGS? Does anyones pandas child sleep alot during a pandas flare? My son has a very hard time getting up in the morning and wants to lay in bed all day. What about chewing on clothes during a pandas flare? He chews holes through his shirts, and he is eating pennies and toilet paper and any other non food item he can get a hold of, but when he comes out of these "episodes" he doesnt do any of this. He is pale, almost gray looking and severly fatigued when this happens. I also feel these "muscle twitches" that go on all day long whne he is laying down and sleeping. We had been working with a dr. who did 2 rounds of IVIG and IV steroids and then put him on anti seizure meds becuase he thought he had pandas and KLS. He went 4mths with out any problems and we though he was cured, then on day he had an eye exam and they dialated his eyes and put drops in them, and then the next day he woke up "sick", so the dr. thought it was seizures. He had Anit Dnase done it was 400 and ASO was in the 500 range, so thats why we did ivig, but he has never had a positive swab. I think my dr. has given up trying to figure this out, but I cant give up on my child. There is something wrong with him and it seems to me everything keeps pointing to pandas. We live in Maryland and I am interested in finding a good pandas dr. in md or delaware or virginia that accepts blue cross or medical assistance insurance. Dr. Latimer does not take our ins. and I have no way of coming up with the money to pay for a visit. Any info would be greatly appreciated, this is really taking a toll on our family.

Hi, We had some tests run on my son, spinal and blood. I talked with his dr. and he said his lyme was negative, but here is what the results said: Lyme W.B IGG 1 band Lyme W.B IGM 1 band W.B. IGG 0-1 band and then the it says interpretion Lyme W.B. IGM indeterminate What does this mean? This test was done using his spinal fluid not his blood. Also, I was going over it and I found that his ASO titers are 479, and Dnase was 317? Does that mean he has strep? He has not been sick with strep for at least a year, well...he has not had symptoms of strep for that long. No soar throat or fever that I can remember. He also has thyroglobulin antibodies, not sure if this is significant or not. Dr. says he is waiting for 1 more result...NMDA enciphilitis? not sure if that is what he said. My question is, do I accept the answer that his lyme is negative and pursue the pandas or should I go to a lyme dr. and have this investigated any further? Thanks in advance for the replys

My son just had a spinal done last Tuesday. It was done at a childrens hospital and he was sedated, and did not seem to feel it at all. It was very quick. They gave him meds in his iv, he got real still and layed back and they layed him on his side, took the fluid and then put a band aid over the small prick. He never complained of it hurting him, and within 2 hrs he was up walking around like nothing happened. I was hesitant as well, but if I had to do it again I would. Not bad at all!

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!

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.

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.

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.

HELLO, I am new to the boards but wanted to share our experience. My son had his first round of ivig last week. Our dr. gave it to him very slowly over a 4 day period. He was admitted to the hospital thursday night, and they started his dose Friday afternoon and it went for 4hrs. They did this everyday until Monday. They also gave him a dose of tylenol and benadryl a half hour before starting the infusion. He had no side effects except a low grade fever on the 3rd day so they treated him with motrin, waited 4 hours gave him the tylenol and benadryl and then did the last infusion. He never got the fever again, and as far as I can tell never had a headache ( he is special needs). We are now 3 days post ivig and I havent really seen any difference in him. He still has ocd, alot of anxiety and is very emotional and extremly exhausted. The doctor said he will repeat the ivig again in about 2 weeks. My question is when do you typically see improvement from the ivig? I was hoping the after the ivig he would just snap out of this episode, but that didnt happen. Doctors told me to just watch for ANY little change in the episodes. Also, they beleive that he actually has PANDAS with overlapping Klein Levin syndrom symptoms because his episodes are cycling and he is always sleepy/exhausted during them. All of these symptoms happened after he had mono, which he got shortly after receiving the varicella booster vacination.

Which part of southern Maryland are you from? My child has possible PANDAS as well, and we live on the Eastern Shore.

Well, just like we expected ITS BACK!! Everything was going well for the last 10 days, and this morning on day 11 all the sudden he is having an episode. He didnt get out of bed until 1pm today, and when he did get up, he just paced the house in circles, refused to eat anything, complains of his neck hurting, and then crawls back in bed and just lays there staring off out the window. He shows no emotion during these episodes, doesnt play, doesnt care about anything. I am so sick of this!! This is 5 months that these episodes have been occurring every 10 to 12 days and I am emotionaly and physically exhausted. What is wrong with him? Why cant the doctors figure it out. I just want to scream!!!!!!!!!!!!!!

I have asked his doctors on several occasions if he could have parasites. I was told that if he had a parasite he would have severe diareha, or vomiting. Funny not one of them has ordered a stool sample yet. I even told them that this all starts with a bout of constipation, and a day or 2 before he comes out of it he has a massive amount of diareha, and then he is ok for 10 to 12 days. Each time I suggest a parasite they just blow it off. A stool sample is not that hard to order, but how do you get a Dr. to order something when they dont beleive that it is even a possibility? Maybe a certain food is triggering these episodes? I dont know...its puzzling and exhausting!!

Yes, he has these symptoms for 10 to 12 days then he is fine, then he has them, then he is fine. It has been going on for 4 months this way. He hasnt been on ANY meds except for the 10 days of amoxicillin in July for strep that was discovered only through a bloodtest. I dont give him anything..no herbs, no meds, nothing. Unless there is a certain food that may be triggering these episodes? But his diet has not changed, he eats the same stuff he always ate. The dr. thinks he has a metabolic disorder that my be causing these episodes? He does have high lactic acid? and also ketones in his urine which suggest a metabolic disorder. I dont understand how he could have a metabolic disorder all his life, but these behaviors only occurred these past 4 months? I really feel that all this is in relation to the fever, the vacinne maybe? the mono and the strep?

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Just as expected, after 12 days of laying in bed, pacing the floor not eating my son is back to his normal self. However on Monday and Tuesday he was very repititive in his words. He just kept saying the same thing over and over again(could this be vocal tic). When you talk about symptoms waxing and waning, could this be the "cycling" that I refer to? My sons just happen to be every 12 days, so I call it "cycling" He did have a bit of a runny nose last week and he kept wiping his face with his sleeve to the point he gave himself 3rd degree burns under his nose and on his cheek. Could this be OCD? He also did this exact same thing back in April a few weeks before this whole situation started. The more I read on here the more I am convinced that this could be pandas. So far I have gotten no where with MRI, all kinds of bloodwork and Dr. appts. Each time he comes out of his episode I pray that was the last time, yet it comes back every time and has been going on for 4 months now. I just want my child back. This has been exhausting just watching my child slip back into it, knowing there is nothing I can do about it. At least not until we have our appt. on Oct 28th, but even then I dont have alot of hope that the Dr.s are going to be able to help THIS situation. I do have hope as far as a diagnosis for genetics. So I guess for now I will just have to enjoy these next 2 weeks with my "normal" son. I am just worried that one of these days he will go into an episode and not come out of it. This is sooooo frustrating!!!!

I read in the pandas threads that kids have bedtime rituals. Does that mean they have to have these in order to have pandas? My son does have issues about how the pillows have to be, and he wants his blanket over him just right, and he always have to have me lay on a certain side of him and in a certain way. This goes on all day long because all he wants to do is lay in bed and look out the window. As far as nightime issues, he doesnt seem to have any nightmares, he cant tell me what he dreams about anyway. He is normally a really sound sleeper, but when he has these episodes, he is a very light sleeper, waking up at seval times during the night at the slightest sound or movement. I took him to the dr. on Thursday because of a stuffy/runny nose and while waiting to be seen he did something that I have never seen before. He went around to every chair in the waiting room and sat down and stood up 2x and then did the same thing in every single chair...very weird! He is in his 12 day "episode", and should be back to normal on Monday, HOPEFULLY. It just sounds/looks so much like pandas to me. But I just dont understand the cycling of the symptoms every 12 days.

Thanks for all the responses. We live on the eastern shore of Maryland. I have heard about Dr. Latimer, but she doesnt take insurance and I was told it was a $580 charge for the 1st appointment. Thats an awful lot of money to come up with right now, especially being that it may not even be pandas. He does come out of these episodes on the 12th day w/o any intervention, but I am worried it could be causing brain damage everytime he goes into it. It is so weird how it cycles exactly 10 to 12 days and it lasts the same. I def think there is some kind of infection or bacteria causing it, but WHAT?!! This is so horrible to watch him turn into this child who looks like he is dying every other week! He just lays in bed and has no interest in anything. The dialated pupils really scare me though. They are suppose to be doing an EEG but they said it takes about 6 weeks to schedule that because he has to be sedated. Why cant they sedate him and do that in the ER? If he came in w/ obvious head trauma they would do then, so why not now. Just because he has no physical signs of illness they dont consider him ill. I just wish someone would find something wrong so they can just fix it. We are going to University of Maryland on the 28th of October, but that is just to see genetics. I will tell them whats been going on but Im not sure they can help with this situation. We are heading to Virginia this morning for another appt. with Dr. Gubb to see if there is any reason to still suspect lyme, but from what I could interpret on the blood results that was ruled out. Western blot was negative twice, all the co-infections were negative. The only thing that was concern was that his absolute lymphocyctes were really low. From what I understand that just means he has been fighting an infection recently(dr. says from the mono).