What can we learn from each other?

[norcalmom]

I've been going round and round on the whole chronic infection, possible Lyme, pandas, wheel for weeks now.

 

Is there some symptom, test result, or presentation that might help us distinguish (even a percentage) of these groups from one another? To help decide the right treatment (or combination of treatments)?

 

Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome.

 

Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read.

 

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

 

Thanks for your input and time.

[T_Mom]

Hi NorCal Mom--

I like the idea but need more info. on a few of these questions. (Your questions are bolded below.)

 

"Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy"--Do you mean this would be a child that is not episodic? Continually has symptoms--if so, for how long, i.e., for over 6 months, one year?

"Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline" You have said "weeks" but many Ps children have MONTHS of symptoms not weeks, perhaps a revision?

 

"How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)" In our case, my daughters have NO symptoms at baseline, they are "normal" once more--can you include an option for this?

 

"What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced" --unclear what completely balanced represents, perhaps just note that they have both? As you know, this proves to be a difficult question to answer as Ps morphs week to week, showing a variety of behaviors/symptoms ever changing.

 

Thanks for giving this a try--If you establish a Survey Monkey site perhaps you could post it and we could enter the info. directly to save you the time. Take care--T.

Edited March 3, 2011 by T.Mom

[peglem]

I'll give it a try.

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

BUT, WHEN ALL THIS REALLY GOT ROLLING, SOMETIME BEFORE 18 MONTHS OF AGE, WE HAD LOTS OF ILLNESS/EAR INFECTIONS/UR INFECTIONS-ETC. NEVER CHECKED FOR STREP UNTIL SHE WAS 10 YEARS OLD-AND IT WAS CHRONIC AT THAT TIME FOR AT LEAST 2 YEARS B4 WE STARTED CHRONIC ABX. WE HAVE NOT CHECKED FOR OTHER INFECTIONS- MYCOp OR LYME.

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

BASELINE MOVED UP CONSIDERABLY THROUGH EARLY PERIODS OF NO DX OR TREATMENT. WE KNOW SHE IS TRIGGERED BY STREP BUT DO NOT KNOW IF THERE MAY BE OTHER TRIGGERS OR NOT- INFLAMMATION FROM INJURY SEEMS TO TRIGGER. BASELINE RIGHT NOW IS FAIRLY DYSFUNCTIONAL BUT LOSS OF AGGRESSION/SIBs. FLARE IS A RETURN OF RAGEY AGGRESSIVE BEHAVIORS W/ SELF INJURY AND EVEN LESS FUNCTIONAL

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

CAMK-242

ONLY ANTINEURONAL ELEVATION WAS ANTI-D2, 8000?, 16,000? I DON'T REMEMBER WHICH IT WAS

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

IDUNNO. WE HAVE SO MANY FREAKY MOVEMENTS THAT I'M UNCERTAIN WHAT IS TICS AND WHAT IS COMPULSION. VERY POOR COMMUNICATION SO ITS VERY HARD TO TELL

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5

6-10

10+

tics, obsessions, compulsions, add/adhd, dialated pupils, phobias, reassurance questions, regressive behavior, insomnia, decline in math or handwriting, depression, extreme irritability, emotional liability.

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

ITS ALWAYS PRETTY BAD, BUT FLARES TEND TO BE A SUDDEN INCREASE IN INTENSITY AND FREQUENCY, MORE THAN AN INCREASE IN ACTUAL SYMPTOMS, WITH THE EXCEPTION OF AGGRESSION, ENURESIS, AND SEPARATION ANXIETY.

tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, reassurance questions, regressive behavior, rages/tantrums, insomnia, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

CURRENTLY ON 500MG ZITH EVERY OTHER DAY AND IVIG EVERY 3 TO 4 WEEKS. WE HAVE IN THE PAST SWITCHED OFF ZITH TO A 2 WEEK COURSE OF RIFAMPIN & AUGMENTIN TO BRING HER BACK FROM A BAD SPELL. SHE HAS A POSITIVE RESPONSE TO STEROIDS, BUT ITS SHORT LIVED. WE'VE ONLY EVER DONE THE 5 DAY COURSE. WE JUST WENT OFF OF LAMICTAL AND INITIALLY SAW DRASTIC IMPROVEMENT FOR THE 1ST COUPLE OF WEEKS. RIGHT NOW SHE HAS SOME CRAP GOING ON THAT I DON'T KNOW WHAT IT IS...NOT HER USUAL PANDAS STUFF. MAYBE RELATED TO GOING OFF LAMICTAL OR SOMETHING ELSE?

[butterflymom]

=

Edited February 3, 2016 by tampicc

[kimballot]

Norcalmom - I don't know if you've ever seen some of the theories proposed by Dr. T last year. You can find them here http://www.latitudes.org/forums/index.php?showuser=3144&tab=topics - just click on them for more details. Dr. T came up with these before we realized that lyme was also a frequent infection in kids with PANDAS, so I don't think lyme is well represented in his models - but mycoplasma is in there.

[SSS]

I've been going round and round on the whole chronic infection, possible Lyme, pandas, wheel for weeks now.

 

Is there some symptom, test result, or presentation that might help us distinguish (even a percentage) of these groups from one another? To help decide the right treatment (or combination of treatments)?

 

Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome.

 

Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read.

 

My child has:

Lyme

Chronic infection

Chronic Strep-normal titers, but whether there is strep left in the gut or peri-anal region, I can't say for sure.

Significant Immune Deficiency

No known current infections

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) exposed to active strep as infant, unexplained fevers, strep again at 2 yrs. age. I would say we have been chronic, with periods of 'phases' (can't leave mirror/house for 4 weeks, because can't get hair bangs 'right' 3 months of terror about a character in a book leaving stripes on her body, clothing: currently we are on only grey colored sweat pants, etc.)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? CamK 175, only Anti-Dopamine 1 high- 2x the mean.

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later- our tics are 'mild' mostly vocal, however, tourette type breakdowns- loss of control of body movements, attacking, and verbal (name calling, the light swearing)

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad- I'm not sure what baseline is- we have phases of varying problems.

one

2-5

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

We have tried Omnicef, Augmentin SR, and Azithromycin. Holding on the daily Azith. Did a 4 day steroid burst, hard to see real improvement from that. Saw real improvement starting Azith. (about first 4 weeks) and then large backslide. Just did 1st (pray last) HD-IVIG this week. Continue on Azith. Have had no choice but to give frequent ibuprofen because of rages/breakdowns. Praying for recovery/remission with our IVIG.

 

P.S.

Our 'bad phases of different problems' did not come after a viral or bacterial illness that was evident- for the most part, this child does not get illnesses very often. Normal immune panels.

Edited March 3, 2011 by S & S

[Kayanne]

My Daughter (8yrs) has

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

• 
   
  
• CamKII was 112, Anti-neurals were all within the normal range. She was tested about 1 1/2 months after she FULLY recovered and was asymptomatic
  
• Results of Immune testing was all normal except elevate IgE -- she does have seasonal allergies. She was tested June 2010.
  
• With her first exacerbation, strep titers were ASO-800 and AntiDnase-480. Her blood was drawn just before she tested positive a 4th time on the rapid strep test.
  

What symptom group would you put your child in:

tics only

ocd only...we were never able to really distinguish if her coughing into the crook of her arm was OCD or a tic. However, for the most part it was OCD.

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

N/A - they don't exacerbate - its always pretty bad

one - rigid about following rules, but it is so minor that it is not even noticeable except by us and her teacher.

2-5

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

one

2-5

6-10

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dilated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, sensory defensiviness, piano fingers, witholding urine and stool, refusal to eat or talk because of a "feeling in her throat", catatonic stares, sticking her tongue out and to the side of her mouth, excessive guilt (telling on herself) and not able to make simple decisions.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

• 
   
  
• Since August, she has been taking 150mg of omnicef daily to prevent strep. We have had 3 strep notices from school, and have noticed a slight increase in OCD that calms down after about a week. I think it is working great.
  
• She sees a CBT therapist monthly.
  
• Supplements: multi vitamin/mineral, fish oil, probiotics, sometimes L-tryptophan.
  

Past treatments:

• 
   
  
• For positive rapid strep tests: 5 days of omnicef, 10 days of amoxicillin, 10 days of augmentin (rifampin added on days 7-10), and 10 days of clindamycin
  
• For PANDAS symptoms: Monthly prednisone tapers and 150mg Omnicef 2x/day from Feb/March '09 to August '09 (we tried a week of amoxicillin in March '09, but went right back to the omnicef because she had a mild rash, and was backsliding.
  
• For prophylaxis: June-Sept '09: 100mg azith daily -- Sept '09-February '10: 250mg pen vk 2x/daily. She also had her tonsils and adnoids removed in June 2010.
   
  

Edited March 3, 2011 by Kayanne

[norcalmom]

Hi all - thanks for taking the time to reply.

 

My purpose is to try to get a few of the Lyme folks replying too, to see if there is anything different about their presentation. I just find it odd that some kids have clear exacerbations. Within days of illness, that last from 1 month to 2 months, and then return to baseline - sometimes a "new baseline"..with a couple more symptoms that do not remit. The baseline "creeps up" this is what happened to my son, and I've seen other folks post about that as well. I believe that in cunninghams' desk, in the file containing surveys that are sent in with the blood samples, weather or not there is a way to group our kids and therefore get better treatment, exists.

 

I don't understand why a chronic infection would do this. I know there may be inflamation of BBB that lets in more anit-neuronal antibodies...but with EVERY illness? And, I did observe that with one illness - a stomach bug, my son had symptoms for 2-3 days only - only as long as the bug. With the other viruses, it would always be 4-6 weeks. It took a while for me to see the pattern, AND it took a little while for the pattern to develop fully. First 2 exacerbations were different (in retrospect). His first illness was several weeks prior to OCD, and tics were several weeks behind that. The other symptoms (about 7 from the list) came somewhere in there. They almost all gradually remited (over...about 2-3 months) and then he got a cough...two weeks later (at the end of his cough) ALL symptoms returned at the same time. Ever since then - all symptoms come within days of illness - often bedwetting and insomnia are a couple days ahead of everything else - including the virus. This is what I don't like about the "sudden onset" criteria. Is it sudden, if the symptoms were there before? And, Swedo has also said that this is a common pattern - it IS the pattern for SC. I just think most people miss the connection the first time, because it is spread out.

 

Cunningham has said that kids exacerbationg have higher Cam K levels and antineuronals...so ..if that is true, its int' just the BBB inflamation. Also wondering if chronic infection causes higher Cam K II (like SC does). Or Lyme. Her new letters going out state that normal (non-pandas) kids have average Cam K II of 135 when they have an active strep infection. So, infection alone appears to raise these levels.(at least Cam K II, she does not mention anti-neuronals)

 

Do Lyme and Chronic infection kids have this exacerbation pattern? Or lack of exacerbation all together?

 

Maybe there IS no difference. And maybe trying to put these kids in different groups is for naught - perhaps they are all int he same group - perhaps, it isn't genetics alone that determine if your child is more likely to get pandas. Perhaps its is Genetics + underlying infection (chronic or otherwise) = pandas. In which case perhaps some kids will get better on appropriate antibiotic therapies alone. Perhaps some will need both antibiotic therapies, as well as ivig to correct autoimmune issues after the infection is cleared.

 

Its just so exhausting to hunt for infections like lyme and mycoplasma (who know what else) ..You think pandas is controversial? HA! I'm now consulting with lyme experts, mycoplasma experts, pandas expert and immune expert. None of them agree upon anything! The data just isn't there, and none of them has seen enough kids of the different groups to tell if there are different groups- maybe its all the same? They each think my kid belongs in their group. So, which treatment to pick? Currently I'm leaning toward another ivig (like many that have had two..and that is what they needed). Why is that the case? either - the immune system was "retrained", or the antibodies from the ivig killed off the underlying chronic infection (that the child's own immune system was having trouble with) ...or both. (or the ivig reduces inflamation in the BBB and closes it to infection..which seems a minor component relative to the other two things, but almost none of the research I've read talks about this as the primary issue.

 

T.Mom- thanks for your input. Yes, I'd like to do a survey monkey, but want to get some antecdotal info (and feedback like yours on the questions and how to pose them in ways that make sense) before sending it out, so it is better. Only have one shot at it. So thanks for pointing out some of my oversights.

and, your question on exacerbation timing - I guess I'd have to say that if exacerbation lasts more than 6 months, it isn't episodic. Wouldn't child be exposed to illnesses in 4-6 months...and just appear to stay in exacerbation? perhaps I will just have another option for "different pattern" observed.

 

For example - Saving Sammy - I'd put him in chronic infection, non-episodic group. Chronically high strep titers, and every time he went off meds symptoms returned. And he had to have very, very high dose of meds (did he ever get rid of that infections, or only bring the titers down? ). And the antibiotic was specific for his type of infection.

 

Kim - will look at that, vaguely recall a long document where he tried to classify kids. Will revisti in light of new discoveries will be interesting! Thanks

 

Tampicc and S &S - thinking of you - good luck in your recovery period. I think you will see alot of good things, but post ivig healing has some ups and downs. Best to you and your daughter. Waiting to see results is difficult period.

 

I want to say that my son is VERY improved since ivig. I refuse to allow my child to go all the way back to where he was prior to ivig. Weather we do another, or heavy duty antibiotic protocol for (possible) lyme or mycoP infection, or both, that is what I'm trying to figure out.

 

Peglem - thanks as always for taking time. Your daughter is very unique and we could learn a lot. Did you ever do any pcr testing for mycoplasma in her? There are some interesting reports of mycop and autistic kids. Acutally the parents of the autistic kids are the ones with the mycoP. One report said that 75% of kids born to solders that had gulf war syndrome (which was found to actually be chronic mycoplasma..possibly from exposure to weapnized mycoP and/or the fact that these soldiers all got about 20 vaccines prior to deployment) ..were autistic. That is a huge, astounding, number. Its a specific mycoplasma they have. Mycoplasma ferrmentans. (sp?). MycoP (not neccessarily that type) is a common vaccine contaminant as well. So both the parents and the babies had myco P exposure, as well as multiple vaccines. Babies had mycoP exposure from parents. Soldiers had it either from weapons or the 20+ vaccinations they got at one sitting prior to deployment (or both). Its interesting reading anyway. A bit conspiracy theory, but since your daughter has had this from very early age and has autistic presentation, thought you might be interested. Came across it in my mycoP research.

[MichaelTampa]

As an adult, I hadn't responded, thinking I'm a bit out of the group you're looking at. But I think I can add a few tidbits.

 

After being diagnosed with TS, I ran into this site and then considered PANDAS and then lyme. I had a 183 (or 186?) CamK score. Cunningham will say that the score relates to autoimmunity but is not specific to infection. My TS diagnosis really came from major psychiatric symptoms of depression/anxiety/OCD with minor tics/spasms. But, I did have rage attacks--not as horrific as some I've seen described here as similar to that one movie where the kids are possessed--but plenty bad enough. And the rage attacks were exacerbations--but, they were documented as responses to environmental stimuli (fluorescent lights, wireless devices, perfumes, ...) rather than bacteria or virus. I really think that's the key in differentiating PANDAS from lyme--exacerbations from the bacteria/virus.

 

I think some things that MAY help differentiate lyme from PANDAS are: chronic fatigue, joint pain, muscle pain/fatigue, and other neurological diagnoses such as autism, ALS, and MS. As every story goes with lyme, every case is different, you don't need chronic fatigue to have lyme, you don't need joint pain to have lyme, and so on.

 

But, if someone has not just low-level lyme but significant levels of lyme in their system, untreated, over time, the chronic fatigue is going to get there. I don't hear about chronic fatigue much in PANDAS, but have with some lyme kids, it seems a big signal to see that in a kid, they are normally so energetic. Depression is another one that commonly develops over time with lyme. One well-known lyme doc will say that 90% of autism is lyme, and perhaps that's just his experience based on who he ends up seeing, but it seems there's a bit of a pattern there.

 

Vitamin D levels for those with lyme do get extremely low. I have no idea what people see with PANDAS, but that might be another thing to look at.

 

Anyway, wanted to give you what I think are a few clues in helping differentiate lyme from PANDAS.

[norcalmom]

Michael - thanks, this is helpful. I'm especially interested in your "exacerbations" - when I use this word, I'm referering to a fairly long period of time, about 4-6 weeks, of very bad symptoms, and usually adding symptoms that were not there before. For example if you had 4 or 5 symptoms, and they were a "4" in severity...then almost overnight, you had 8 sypmtoms, and all of them are a 9 or 10 in severity - and they say that way for weeks.

 

 

You say that environment would do this to you - was it as long lasting, or did symptoms go away when the environmental trigger was removed?

 

My son also has D3 on low side, but I'm reading with new recommendations - we're all low. Mine was same as my son's - I think we were both about 25, and we do supplements now. Need to recheck - thanks for reminder! Do you know how low most lyme patients are?

 

Kayanne - thanks for reply and using color - much better than bold (could swear I checked for a way to color text before...now I se it!) right next to "Sizes".

 

This is good..I may go ask some lymies to come over to this board to respond as well. Thanks again.

[eljomom]

MichaelTampa-

VEry intersting---so does that mean that you STILL have pandas and exacerbations? Having CamK that high??

Also, I was under the impression that CamK was showing that there was inflammation from infection, and the anti-neuronals were the autoimmune indicator. Did she explain it in any way?

[dut]

My child dd7 hasLyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baselineGroup 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

we also had a reaction to an acute food allergy

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

165% camk and all antineuronals at top of normal (i think) we did this 2 years ago at a time when she was totally symptom freeWhat symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came latercompletely balanced

 

 

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-56-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

 

currently on biaxin (exploring myco infection chronic) has had abx and steroids uin the past

Edited March 3, 2011 by dut

[MichaelTampa]

I think when I was pursuing I saw exacerbations as a good link and explanation for what was going on, was very caught up with looking for a cause. But, never from infections, never 4-6 weeks or anything like that. It was more like, spend a couple days in a hotel with wireless devices and fluorescent lights, then upon any little trigger of something someone does not right, big rage attack. Rage attack perhaps minutes or hours. But other symptoms of headaches and fatigue would come from these environmental triggers, but would typically to go away overnight with sleep. It was all very much caused by the environmental triggers, and would wear away over hours or a day or two.

 

On the CamK, not an expert on that anymore, not sure if it's inflamation like you say or antibodies or whatever. But, only know that, it is not infection specific, lyme will cause a high CamK, just like PANDAS. She didn't give any special explanations for me in particular. I'm kind of guessing at this point, that I never had PANDAS. All the past symptoms are now explained from lyme, have almost gone away with lyme treatment (still continuing treatment at this point), never really had an exacerbation that appeared triggered from infection.

 

I think mid-20's is a fairly typical vitD for lymies, but I have heard of lower, like 8. I know when I got my 25 or right around there, my doc said he had never seen one that low. Perhaps another lyme clue would be you keep taking vitD, you get no change in the test levels, bump the dosage, still no effect, and so on. This happened to me, I think others as well. A doctor who checks these levels in patients and has them supplement to get it up would probably be a good resource, they could speak to how quickly it goes up in "normal" people (if they have any such patients). It's a clue that something is seriously depressing the levels (chronic infection such as lyme), but also note, the lyme bugs will use vitD too, so that could be another reason why they suppress it. I'm saying all this, but keep in mind, I don't know at all what happens to vitD with PANDAS in absence of lyme--perhaps the same, perhaps not. By the way, I always caution on vitD supplementation, for everyone, but particularly for those with lyme. It's a hormone, something to be careful about, and you could easily be helping the lyme more than you're helping yourself.

 

On the exacerbations of longer length, gave a talk recently to a local group, mentioned I do believe there a numbers of people infected, low level though, low level of symptoms, doing more or less okay, explaining the symptoms in other ways. Then, you have some event--trauma, accident, death of relative--and the person reacts very badly to the event, much more so than one would expect. This happened to me, spent a couple hours in very cold water thinking and thought I was going to die as the sun was slowly going down. I got PTSD, no surprise, but my chronic fatigue, my headaches, my wireless/fluorescent light sensitivies, and on and on, all got worse, slow recovery from PTSD, and so on. This happens to others with low-level lyme. The PTSD creates real physical problems/weaknesses via chemicals, and accidents like broken bones or exposure to cold, all these things weaken the body physically. What happened to me there is the lyme had a wonderful place to grow following that event, my immune system was just severely weakened by that, that is why all the lyme symptoms got worse. This took probably 3 or so months to get back to functioning symptomwise anything close to what I was at before, even with lots of treatments along the way (but none were lyme targeted, this was before all those ideas came up). Anyway, finally getting to the point of, yes, maybe one exacerbation of longer length, a pretty dramatic one. I guess I mention it in the light of, some longer exacerbations can be lyme related. For anyone trying to sort out an exacerbation as PANDAS vs. lyme, a little tricky. Another reminder I think, to look for, in PANDAS as distinct from lyme, is it really triggered by exposure to infection.

[jayjay]

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

 

LYME, BARTONELLA, HIGH STREP TITERS

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

MY CHILD HAD 3 DISTINCT EXACERBATIONS WITH ILLNESS BUT RETURNED TO BASELINE UNTIL WE GAVE HIM THE FLU MIST. NEVER REALLY CAME OUT OF IT UNTIL TREATED FOR BOTH PANDAS & LYME.

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

 

CAMK WAS 150.(BLOOD FOR THAT WAS DRAWN ON DAY 15 OF A 21 DAY PREDNISONE TAPER) ANTI-TUBULIN AND ANTI-DOPAMINE 1 = ELEVATED. ANTI-LYSO. AND DOPAMINE 2 = LOW

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

NOT SURE

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5 - ANXIETY, OCD

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10- VOCAL TICS, OCD, ANXIETY, DECLINE IN HANDWRITING, DIALATED PUPILS, RAGES, ODD, SUICIDAL THOUGHTS, SELF HARM (BEEN TOLD THE LATTER TWO ARE SYMPTOMS OF BARTONELLA) JOINT,FOOT PAIN CAME AFTER FIRST IVIG.

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

 

CURRENT TREATMENT- AZITH.,MINO., & IVIG EVERY 8 WEEKS. WE HAVE SEEN THE MOST IMPROVEMNT SINCE WE STARTED TREATMENT FOR LYME PLUS PANDAS IN OCTOBER 2010. BEFORE THAT WE TRIED DIFFERENT ANTIBIOTICS, ZOLOFT, A TOTAL OF 4 PREDNISONE TAPERS,TONSILLECTOMY AND THE 1ST OF 4 IVIG'S. WE WOULD HAVE INITIAL IMPROVEMENT BUT COULD NOT SUSTAIN A REMISSION. THAT'S WHY WE LOOKED INTO LYME. ALSO WITH THE PREDNISONE TAPERS WE WOULD HAVE DRAMTIC OVERNIGHT IMPROVMENT BUT SYMPTOMS WOULD GET MUCH WORSE THE LONGER HE WAS ON THEM.

[smartyjones]

My child has:

Lyme

Chronic infection -- toxoplasma gondii; CMV

Chronic Strep

Significant Immune Deficiency

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe) -- last exacerbation over a year ago due to flu; general up and down since -- currently about 90%-ish; odd 100% remission with stomach flu -- short term has happened two times

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

 

What symptom group would you put your child in:

tics only

ocd only -- possibly some tics that are more compulsions than overt tics

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.potty talk, control of sibling, poor cooperation, decisions are monumental; blaming others; sound sensitivity, loud talking, cognitive inflexibilty; 'Asperger-like' social behaviors, trouble with the potty and with bathing

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

integrative MD who does a form of ART and homeopathy; just recently testing negative to strep; currently having troubling kicking CMV

this could only be due to the subjective way that we all rate symptoms and behaviors - but i am surprised in the responses that there is only one other person - kayanne, i think - ? -- that rates 10+ symptoms. could the number of troublesome behaviors mean something. of course, maybe i separate out behaviors that other people lump together and that would explain it.

 

from the time i've been reading this forum, there does seem to be 'groupings' of symptoms and i've got to think that means something.

 

norcal -- i do think this is such a quandry to determine the cause and when to stop looking;. i posed this question to Dr. T awhile ago -- on this forum -- we had clear strep indicators -- ASO of 898 and positive culture at onset, 100% remission when found the right abx. however, when off the abx, he relapsed. Dr T answered that you can always do more testing -- however, it's expensive and may yield false negs and pos, so yeah -- where do you draw that line of enough testing? we did go searching further when ds was not really moving in a healing direction. we found lyme, toxoplasma gondii and CMV -- along with other troubles due to that -- low serotonin, lead, fungal, parasites.

 

could longer, stronger abx have corrected some of the infections? we haven't done IVIG or PEX. would one of those have helped his system correct the other infections or other troubles? did the other infections cause trouble or were they just in the barrel to help it overflow? SO MANY unknowns!! i do currently think the CMV is a problem b/c that's all he's currently testing for and he's still not 100%. i'd say his issues now are controlling of his brother, blaming others and irrational upsets. would some of the others be more related to lyme or strep and we don't see them now w/o those infections? so many questions.