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AshQuinn

Help, My son has strange behavioral symptoms

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I can't find answers anywhere. I am joining this forum to try to understand what is going on with my son. He had strep throat at the end of April 2010. Since then he's been exhibiting strange behaviors. He is 9 yrs old and has been diagnosed with ADHD and PDD/NOS for 5 years, however has never exhibited these behaviors. Symptoms arise every 10 to 14 days and last 3 to 5 days.

Symptoms include:

 

-excessive sleeping (i.e. 18 out of 24 hours daily)

-random strings of speach and noises

-repetative, random behaviors (ie walking in lines or walking in circles around the house)

-no interest in anything

-no memory of the time lapsed when having the symptoms

-not able to carry out any requests or demands no matter how simple (ie cannot dress himself)

-symptoms seem to be correlated or coincidental with consumption of Red #40 dye

-when awake stares into space and does not reply to being spoken to immediately

-increased aggression and verbal abuse

-complaining of stomach hurting

-no fever

 

Blood work has been done and came back fine. Lead levels have been tested, tested for mono, blood sugar has been tested. Urine samples .. everything tests normal or negative for any virus or disease. Of course we have been to the ER. They turned us away saying they could do nothing for us.

 

We've seen a pedeatric neurologist. We are waiting for an EEG appt. to see if there are any low level brain seisures going on.

His regular pedeatrician mentioned PANDAS but stated that it is a controversial diagnosis. The ped. neuro., I don't believe is willing to accept the PANDAS as a valid diagnosis or condition. She also stated that the symptoms are not indicative of a food allergy or sensativity (Red #40). His last episode of strange behavior does not seem to be related to consumption of Red #40. Both doctors refuse to accept that he could have Lyme Disease although a tick bite has been documented, but apparently not the right species of tick. With each episode he takes longer to return to normal. However, when he is back to normal his behavior and learning abilities are much improved then what they were before we had these problems.

 

Can anyone give me any ideas or leads as to what is going on with my son. I would greatly appreciate it.

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I'm so sorry! The excessive sleeping seems very scary :o

 

I would suggest an immunologist or rheumatologist. Some of his symptoms just seem much more like lyme. I had orignally thought my DS had lyme and had researched it quite a bit.

 

Best of luck!!!

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I can't find answers anywhere. I am joining this forum to try to understand what is going on with my son. He had strep throat at the end of April 2010. Since then he's been exhibiting strange behaviors. He is 9 yrs old and has been diagnosed with ADHD and PDD/NOS for 5 years, however has never exhibited these behaviors. Symptoms arise every 10 to 14 days and last 3 to 5 days.

Symptoms include:

 

-excessive sleeping (i.e. 18 out of 24 hours daily)

-random strings of speach and noises

-repetative, random behaviors (ie walking in lines or walking in circles around the house)

-no interest in anything

-no memory of the time lapsed when having the symptoms

-not able to carry out any requests or demands no matter how simple (ie cannot dress himself)

-symptoms seem to be correlated or coincidental with consumption of Red #40 dye

-when awake stares into space and does not reply to being spoken to immediately

-increased aggression and verbal abuse

-complaining of stomach hurting

-no fever

 

Blood work has been done and came back fine. Lead levels have been tested, tested for mono, blood sugar has been tested. Urine samples .. everything tests normal or negative for any virus or disease. Of course we have been to the ER. They turned us away saying they could do nothing for us.

 

We've seen a pedeatric neurologist. We are waiting for an EEG appt. to see if there are any low level brain seisures going on.

His regular pedeatrician mentioned PANDAS but stated that it is a controversial diagnosis. The ped. neuro., I don't believe is willing to accept the PANDAS as a valid diagnosis or condition. She also stated that the symptoms are not indicative of a food allergy or sensativity (Red #40). His last episode of strange behavior does not seem to be related to consumption of Red #40. Both doctors refuse to accept that he could have Lyme Disease although a tick bite has been documented, but apparently not the right species of tick. With each episode he takes longer to return to normal. However, when he is back to normal his behavior and learning abilities are much improved then what they were before we had these problems.

 

Can anyone give me any ideas or leads as to what is going on with my son. I would greatly appreciate it.

 

Personally I'd say much more likely then not your son has PANDAS. You have a direct tie in with strep leading to OCD and possibly tourettes, along with mood lability/agression. Many kids also have physical symptoms. My son has very low energy when his PANDAS is in full swing. He also looks bad with dark circles under his eyes and pale skin. Read some of the info in the pinned section including the FAQ and the flow chart. Contact one of the big PANDAS docs such as Dr. Kavocevic or Dr. Bouboulis and set up an appointment or a phone consultation. If you can get your pediatrician to accept the possibility of PANDAS, try an extended course of a robust dose of antibioitcs. Azithromycin or Agumentin are the two that seem to most commonly bring some relief. We had better success with Augmentin but most seem to have the best resuts with the Azithromycin. Many do 500mg a day of azith for a while.

 

Did the blood work include strep titers ASO and anti-dnaseB? These don't need to be elevated for it to be PANDAS but if they are elevated then you might have further evidence you are on the right track with PANDAS.

 

At a minimum, PANDAS is something to rule out. Many parents print sections from the previously mentioned info pinned at the top section of the forum to give to their local docs to get them to at least get the open to the possbility of PANDAS and then turn them into converts when they see postive results from treatement.

 

Good luck and sorry you are on here.

 

Alex

Edited by Alex

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I'm so sorry you are going through this. It does sound like it could be either PANDAS or Lyme, but you're going to need real experts to diagnose. I'm not sure where you live, but here's a link to a list of doctors (by state) who've been recommended by folks on this board. If you are in Northern CA, let me know and I can give you extra help. http://www.latitudes.org/forums/index.php?showtopic=6428

 

I would also find a Lyme-literate doctor to "rule out" Lyme disease. No doctor who just summarily dismisses Lyme is actually qualified to do so - if they really knew anything about Lyme they would have done some testing. How did they know the species of tick that bit your son, and how did they conclude that species doesn't carry Lyme or co-infections?

 

Please do find a qualified PANDAS doc and a Lyme-literate doctor to really look into these diagnoses. Best of luck.

Edited by mama2alex

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So much of what you describe sounds exactly like my son's PANDAS symptoms. Sleep disorder is his first one to show up and last to leave. Takes me 4 hours to wake him when he has PANDAS. On home bound for school because I can't wake him. He is verbally and physically abusive. Cannot hear me speaking to him unless I stand right in front of him and make eye contact first but even then can only process a couple of sentences. Lots of stomach /gut pain. The staring into space deal. Also no fever with strep ever.

I would see how cooperative your regular pediatrician will be by seeing at least about STRONG antibiotics. Also Dr. K in Chicago, whom a lot of us see, has a website at webpediatrics.com I found that very helpful. If we knew what partbof the country you are in some would have doctors to recommend.

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My son also sleeps alot when he's flared up. He'll nap for 3-4 hours during the day and then sleep for 13+ hours at night still. And when he's awake, he still looks/acts phsysically exhausted - bags under his eyes and everything. It does sound like you might have PANDAS on your hands...

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welcome,

 

I would start off by getting current strep throat cultures (do the 72 hour culture if the rapid is neg) on everyone (parents, siblings, your son) in the household. I'd recommend this b-4 starting your son on antibiotics. (Have you alredy run strep titers? consider those if cultures are neg.)

 

If you also post were you live, maybe someone can rec. a doc.

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AshQuinn,

The symptoms you describe sound as much like candida/yeast as anything, so I would investigate this before jumping to conclusions re PANDAS. If your son has had strep, I am guessing he was treated at the time with antibiotics? if so, its possible this could have contributed to candida and yeast, as most antibiotic treatment does. I'm not sure if a regular pediatrician would know much about how to treat yeast, but you can peruse this board and the tics/tourettes section for info, and possibly connect with a DAN doc or naturopath. Since you state stomach pains as part of his symptom, that may be a clue right there. Do you give probiotics? I would look into that. yeast treatment may involve antifungals or more natural treatments such as grapefruit seed oil, oil of oregano, etc.

 

Also, please make sure that he is not on any meds for adhd that could cause these symtpoms as well.

 

 

 

Faith

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Welcome. You are smart to rule out anything and everything. Since this is a PANDAS forum, I will address your list from "PANDAS eyes", even though you should be open to things like Lyme as mentioned above.

 

Sleeping...my son had an increase in sleep but not to the point of 18 hours. Also, it was VERY difficult to get him our of bed when he did wake up.

 

Random noises....could be tics. My son out of no where would do odds sounds. It wasn't all the time. Just very random. This symptom, in the scheme of things, did not last long

 

Repetitive/random behaviors...can your son tell you why he does it? For my son, it was OCD related. These odd actions, like spinning, made the "bad thing" okay. ie, he had to spin down the hall since he needed to pass his sister's room and his sister was contaminated. Spinning took away some of the "badness". Also, maybe watch this clip

It shows a boy with PANDAS and some odd actions he did.

 

Carrying out simple requests....my son had a problem with this too, inc getting dressed. For a bit, I had to dress him and he was 5.

 

Staring off and not responding immediately...my son had this too.

 

Increased aggression...no doubt! He went into rages and he directed them at me.

 

My son didn't have stomach problems. You could try a probiotic for that or rule out strep in the gut.

 

No fever...yep. None of my kids...no fever. Had strep.

Edited by Vickie

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He is 9 yrs old and has been diagnosed with ADHD and PDD/NOS for 5 years, however has never exhibited these behaviors.

 

Just to add to Vickie's post...the ADHD and PDD/NOS can all be PANDAS as well. Alternatively, sometimes kids are PDD/NOS in addition to PANDAS.

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Thanks so much for all the advice. Unfortunately, I live in a rural area in Georgia. I have to drive 2 hours to see a decent ped. neuro. at the medical college in Augusta.

For some reason the fact that we are in Georgia rules out the possibility of Lyme disease for his doctors. Although I personally know 2 people in Georgia that have had it!!! The doctors almost refuse to entertain the idea that it could even be Lyme or do a test.

I do have him taking acidophilus (sp?) on a daily to every other day basis.

What is so strange to me is the regularity of the 'episodes'. Then when they are gone he is much, much better than he ever has been!

About 10 to 15 days after the positive strep test he had a UTI, had antibiotics to clear that up too.

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I can't find answers anywhere. I am joining this forum to try to understand what is going on with my son. He had strep throat at the end of April 2010. Since then he's been exhibiting strange behaviors. He is 9 yrs old and has been diagnosed with ADHD and PDD/NOS for 5 years, however has never exhibited these behaviors. Symptoms arise every 10 to 14 days and last 3 to 5 days.

Symptoms include:

 

-excessive sleeping (i.e. 18 out of 24 hours daily)

-random strings of speach and noises

-repetative, random behaviors (ie walking in lines or walking in circles around the house)

-no interest in anything

-no memory of the time lapsed when having the symptoms

-not able to carry out any requests or demands no matter how simple (ie cannot dress himself)

-symptoms seem to be correlated or coincidental with consumption of Red #40 dye

-when awake stares into space and does not reply to being spoken to immediately

-increased aggression and verbal abuse

-complaining of stomach hurting

-no fever

 

Blood work has been done and came back fine. Lead levels have been tested, tested for mono, blood sugar has been tested. Urine samples .. everything tests normal or negative for any virus or disease. Of course we have been to the ER. They turned us away saying they could do nothing for us.

 

We've seen a pedeatric neurologist. We are waiting for an EEG appt. to see if there are any low level brain seisures going on.

His regular pedeatrician mentioned PANDAS but stated that it is a controversial diagnosis. The ped. neuro., I don't believe is willing to accept the PANDAS as a valid diagnosis or condition. She also stated that the symptoms are not indicative of a food allergy or sensativity (Red #40). His last episode of strange behavior does not seem to be related to consumption of Red #40. Both doctors refuse to accept that he could have Lyme Disease although a tick bite has been documented, but apparently not the right species of tick. With each episode he takes longer to return to normal. However, when he is back to normal his behavior and learning abilities are much improved then what they were before we had these problems.

 

Can anyone give me any ideas or leads as to what is going on with my son. I would greatly appreciate it.

 

Don't give up! Don't get discouraged by the physicians that don't agree with what you think may be wrong. You know your son. You know the behaviours started after a Strep infection. It is logical to assume that it may be related. My daughter, 6 yrs old, was diagnosed with ADHD inattentive type in Feb. this year. She had a positive Strep test on May 3rd. Within 3 days of the strep diagnosis she was unable to sleep by herself or go to the bathroom by herself, she was hallucinating, and had movement ticks as well as she just wasn't there and would just stare off into space. We went to the ER and they said there was nothing to be done, and sent me home. We ended up there again a week later...one of the ER docs mentioned PANDAS and put her on an antibiotic. We went home. The antibiotic that he prescribed did nothing. We went to a pediatric neurologist. They said there was nothing wrong with her neurologically. We had a normal EEG test. We went to a child psychiatrist who believed that it may be strep related, but that we should do nothing and it would just go away and prescribed her anti-psychotic medications which I decided not to give her at that particular time because we were going to see Dr. Bouboulis, a PANDAS doctor a few days later. He prescribed a different antibiotic and explained why the other one probably didn't work. Within 2 days there was a big resolution of symtoms. Although, they have returned somewhat on and off in the past month, she is much, much better than she was before. He is having us test for Lyme as well, and had us do a myriad of testing. I am sorry to say that I don't know what his conclusion is from all of the testing that was done as our follow-up appointment is with him tomorrow. Could by Lyme or PANDAS. I'm betting on PANDAS. If you think he may have Lyme go to another doctor and just say he was bitten by a tick, and that you don't know the species. Beware that some Lyme tests have a 20% false negative rate. Even if the intial test is negative he still may have Lyme. Dr. B. had us get testing at Igenix Labs. He said they have the most reliable tests. I had to call and order a kit, and the physicans order had to be signed by him. My daughter also seems to be better in some areas than she ever has been as well as far as her learning abilities and concentration when the symptoms I am attributing to PANDAS aren't as prevalent. Weird isn't it? I am glad you mentioned improvements in those areas. I thought I was going crazy. DON'T GIVE UP!!!! If Lyme testing is negative get to a PANDAS literate doctor!!! I saw that somone put a link in their post to find them. One step at a time. Use this forum as support whenever you need it. It has been a major lifeline for me since this has happened. Even if I don't write a post I read a lot of them and it helps.

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My son exhibited most of the symptoms you describe at his onset of PANDAS. I remember Dr. K telling me ( 2 years ago) that the stomach aches were more than likely anxiety. I couldn't get him to leave the house or do simple tasks either, like get him dressed or brush teeth. We also had repeated words and actions, intense rage, baby talk, and dilated pupils. He also would no longer sleep in his own bed.

 

If I were you, I would definitlely consider PANDAS.

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