New Member- Information Overload

[karmen]

I feel like I have so much catching up to do in figuring all this stuff out. I just got test results back also and am trying to figure out what is going on. I keep reading posts and are trying to piece information together.

My son, Jake, who is 5 had a sudden onset of OCD/tics this past July 2009. He was diagnosed with OCD in August. I have been doing lots of investigating into PANDAS... Jake has been exposed to strep recently and the "brain bully" that is what we call it... is back.

The results we got are:

Cam Kinasse II 188 (into Pandas Category- something passing through BBB- I think)

Anti-Lysoganglioside 160 (fell into normal range)

Anti- Tubulin- (on the high end of normal range (noramal was 250-1000, Jake was 1000)

Anti-Dopamine 1 (high-range was 500-2000, Jake was 4000)

Anti-Dopamine 2 (Jake was 4000, within normal range)

 

I am trying to wrap my head around these numbers... I also am thinking I need to go to the doctor to see if we can get on antibiotics. I had a bad step infection last week.

 

I will keep reading posts to educate myself. I just thought I would put this out there to see if anyone wanted to respond to me directly to help me make sense of this a little quicker.

 

Thank you for all of your thoughts... you all are so inspiring. Glad to find other people out there that feel just as frustrated and confused as I am .

[Buster]

Hi Karmen,

 

The CaM Kinase II is consistent with the range other PANDAS children have had. At this point, there isn't enough data to say that high CaM Kinase II is exclusive to SC or PANDAS. However, if you have other clinical reasons to suspect PANDAS then the high range would lend more weight to the diagnosis.

 

The anti-D1 was just barely elevated (i.e., one dilution out of normal). Otherwise the other values are in range. Has your child had significant symptom changes with infection? Do antibiotics help him with his "brain bully".

 

Wishing you the best.

 

Buster

 

 

 

My son, Jake, who is 5 had a sudden onset of OCD/tics this past July 2009. He was diagnosed with OCD in August. I have been doing lots of investigating into PANDAS... Jake has been exposed to strep recently and the "brain bully" that is what we call it... is back.

The results we got are:

Cam Kinasse II 188 (into Pandas Category- something passing through BBB- I think)

Anti-Lysoganglioside 160 (fell into normal range)

Anti- Tubulin- (on the high end of normal range (noramal was 250-1000, Jake was 1000)

Anti-Dopamine 1 (high-range was 500-2000, Jake was 4000)

Anti-Dopamine 2 (Jake was 4000, within normal range)

 

I am trying to wrap my head around these numbers... I also am thinking I need to go to the doctor to see if we can get on antibiotics. I had a bad step infection last week.

 

I will keep reading posts to educate myself. I just thought I would put this out there to see if anyone wanted to respond to me directly to help me make sense of this a little quicker.

 

Thank you for all of your thoughts... you all are so inspiring. Glad to find other people out there that feel just as frustrated and confused as I am .

[karmen]

Hi Buster,

I must say.. I see you posting lots of helpful information... thank you for sharing your knowledge.

 

Yes.. there are other clinical reasons for us to suspect PANDAS. His symptoms were are pretty rapid onset... in a course of a few days in July, I felt like I completely lost my son for a while. He began with compulsions to want to touch the tv, hit the tv with toys, opening and shutting doors, dropping things repeatedly. He would ask us to take toys away from him so he would not hit the TV.

Then he began verbal tics... he was repeating "I'm Snow White... I'm not...######....I'm stuck, and Mom, your fat." He was embarrassed and could not figure out why he was saying what he was saying. He would run to his room out of embarassment and try to let his tics out there. He kept asking me.. "mom.. why can't I stop saying that?"

He then began licking things... licking tires, the pavement, playground equipment, sand, public restrooms, and yes then he began putting his finger in the toilet then licking it. He even stuck his finger in his poop and licked it.

We took him to the doctor and the doctor actually mentioned PANDAS.. his step culture and titer blood test was negative. But, the doctoer went ahead and put him on antibiotics anyway. Within a few weeks, his symptoms got alot better. He has never gotten as bad as he was in July, but my nephew also has PANDAS and I know that the symptoms of OCD/Tics will most likely return.

So, in the meantime, I took him to an immunologist/allergist that was a parent recommendation on a PANDAS website. The doctor kept talking to me about allergy testing. I was confused about the relationship between PANDAS and allergies. His thought was that if we can help Jake's body fight the allergies, then his immune system will be boosted and better able to fight the strep.

So, we have just begun with this process. Not all the tests have come back yet, but so far we have discovered that there are several inhalents he is allergic to. Also, he is allergic to potato, milk, tomato, and tuna. Since we began illiminating these items from his diet, it seemed that his OCD and emotionally eradic behavior improved. It hasn't been until this past week that he has begun wetting the bed again every night, is emotionaly eradic (got mad and threw our laptop), is scared to go to bed, is repeating stories and phrases, etc...

I am wondering if strep is playing a role here... Since July we have not had a problem with strep or sickness much, so I have not really been able to notice a pattern yet.

 

Anyway... any of your thoughts or advice are helful.

Thank you!

Karmen

 

 

Hi Karmen,

 

The CaM Kinase II is consistent with the range other PANDAS children have had. At this point, there isn't enough data to say that high CaM Kinase II is exclusive to SC or PANDAS. However, if you have other clinical reasons to suspect PANDAS then the high range would lend more weight to the diagnosis.

 

The anti-D1 was just barely elevated (i.e., one dilution out of normal). Otherwise the other values are in range. Has your child had significant symptom changes with infection? Do antibiotics help him with his "brain bully".

 

Wishing you the best.

 

Buster

 

 

 

 

 

My son, Jake, who is 5 had a sudden onset of OCD/tics this past July 2009. He was diagnosed with OCD in August. I have been doing lots of investigating into PANDAS... Jake has been exposed to strep recently and the "brain bully" that is what we call it... is back.

The results we got are:

Cam Kinasse II 188 (into Pandas Category- something passing through BBB- I think)

Anti-Lysoganglioside 160 (fell into normal range)

Anti- Tubulin- (on the high end of normal range (noramal was 250-1000, Jake was 1000)

Anti-Dopamine 1 (high-range was 500-2000, Jake was 4000)

Anti-Dopamine 2 (Jake was 4000, within normal range)

 

I am trying to wrap my head around these numbers... I also am thinking I need to go to the doctor to see if we can get on antibiotics. I had a bad step infection last week.

 

I will keep reading posts to educate myself. I just thought I would put this out there to see if anyone wanted to respond to me directly to help me make sense of this a little quicker.

 

Thank you for all of your thoughts... you all are so inspiring. Glad to find other people out there that feel just as frustrated and confused as I am .

[LNN]

It hasn't been until this past week that he has begun wetting the bed again every night, is emotionaly eradic (got mad and threw our laptop), is scared to go to bed, is repeating stories and phrases, etc...

I am wondering if strep is playing a role here... Since July we have not had a problem with strep or sickness much, so I have not really been able to notice a pattern yet.

 

Anyway... any of your thoughts or advice are helful.

Thank you!

Karmen

 

Karmen,

Based on the recent spike in symptoms, I would take him in for a strep test. If he has an infection, you certainly want him on antibiotics quickly. But since you say you're fighting an infection, (hopefully on antibiotics?) don't be dissuaded if his culture comes back negative. Some kids become "canaries in the coal mine" and can react to being exposed to someone with strep without actually getting a strep infection themselves. Everything you mentioned - his Cunningham results and his sudden onset, would make me pretty certain it's Pandas.

 

Once you know that everyone in the family is strep-free, you might want to consider a course of prednisone to stop the Pandas cycle. Some feel comfortable with a 5-10 day course (which is the time it's commonly given for poison ivy). We've had better success with a 3 week course. But either way, it can be very helpful in stopping the episode. You can also give ibuprofen - it may help.

[thereishope]

Welcome. Yes, take him to the dr and get him on antibiotics. If the rapid is negative, make sure they run a culture and ask that they put him on antibiotics while waiting culture results. Often they will do that upon request. But....if culture comes back negative DO NOT take him off the antibiotics.

 

Make sure you change your toothbrush too if you had strep!

 

I'm thinking you may be new to posting here, but have been reading? Do you have all the important links like the fact sheet, FAQ, etc or do you need those? They are all in the pinned threads at the top of the forum.

Edited May 23, 2010 by Vickie

[Buster]

I agree with LLM, take him in for a strep test. You might want them to take a urine sample to check for a bladder infection too. It is unlikely to be positive given the symptoms you mention. Do you have other siblings in the house? If you can it would be great to get them also tested. At our house, symptom exacerbation was correlated with sister getting strep - i.e., symptoms showed up before colonization or infection in dd. Exposure seemed sufficient.

 

Regards,

 

Buster

 

Based on the recent spike in symptoms, I would take him in for a strep test. If he has an infection, you certainly want him on antibiotics quickly. But since you say you're fighting an infection, (hopefully on antibiotics?) don't be dissuaded if his culture comes back negative. Some kids become "canaries in the coal mine" and can react to being exposed to someone with strep without actually getting a strep infection themselves. Everything you mentioned - his Cunningham results and his sudden onset, would make me pretty certain it's Pandas.

 

Once you know that everyone in the family is strep-free, you might want to consider a course of prednisone to stop the Pandas cycle. Some feel comfortable with a 5-10 day course (which is the time it's commonly given for poison ivy). We've had better success with a 3 week course. But either way, it can be very helpful in stopping the episode. You can also give ibuprofen - it may help.

[Megs_Mom]

Hi - our daughter (now 8) sounds very similar to your son. It's really great that your doc gave abx without the strep connection. I completely agree with above advice - and hopefully your doc will put your son back on abx again immediately. The only thing I want to add, is that PANDAS/PITAND is often misunderstood by the medical community. When we could not find an immediate strep connection (we did not test the first time) for her 2nd & 3rd onsets - we found our local medical group unwilling to help us with abx or advice beyond psychological help or SSRI's (which were offered to us like candy without any testing or concern - while abx was like gold to a beggar).

 

Your son sounds classic between the sudden onset, remission with abx, and high CamK. If you don't find local medical help for him - I encourage you NOT to allow yourself to be confused or discouraged (as we were) by the strong advice you may get from doctors who are simply misinformed or uneducated about PANDAS/PITAND. Go to one of the docs that deals with this every day - and try to get a real experts advice on what steps to take. If I were you, I'd be doing anything to get my hands on abx now - and prednisone if you are sure it's not LYME.

 

We also find that our daughter reacts VERY strongly to Strep or Impetigo exposure. But we can't test & find a causal connection. She also now has a pretty strong blib in advance of illness (by about 3 days), which is either less severe, or is just so well treated now, that it never exacerbates.

 

Quite a few children here have tested positive for LYME - so you may want to ask your local doctor to sign for you to do testing through IGENEX. One of the more common symptoms for kids is apparantly neuropsychiatric symptoms. Also, did your immunologist test for IgG subclass deficiencies? If not, you may want him to take a look at your son's immune system, in addition to the allergy testing. Our doctor also tested for Lupus by running ANA levels (simple blood test) - if you find something on this test, he can refer you to a Rheumatologist.

 

Our doctors treat our daughter based on sudden onset, repetitive symptomatic episodes and perfect responsiveness to abx & prednisone. We are grateful for the treatment without specificity to cause, but continue to research and test to see if we can figure out why she is susceptible to this awful disease. It is possible that she is simply a child that does not run titers.

 

Hope you find some good answers for your son quickly.

[P_Mom]

karmen,

 

In you first post you said you had a bad strep infection last week....then in your second post you said you have not had a problem with strep. Your son may have not have had strep...but, you did, so, he was exposed. That is a BIG problem and will cause an increase in your PANDAS child.

 

Christmas 2008 my younger son started to increase in symptoms and we didn't know why......until my husband took a rapid strep test because he had been having a headache (we have the test strips at home) and came back positive. I increased my sons antibiotic and my husband went straight to the hospital (it was late, docs closed..wasn't about to wait until the morning) ...anyway, husband got on antibiotics immediately, and, with the increased dose in my son, symptoms disappeared the next day.

 

So, just so you know....mere exposure to strep can/will cause an increase of PANDAS symptoms.

[karmen]

I am trying to convince my husband that we need to take Jake to the doctor. I completely agree with ALL your advice. He thinks that I overreact... I think he is in denial. He is concered about putting Jake on antibiotics all the time. He is the type that you don't fix the oil leak until the car is overheating and on the side of the road. Catch my drift.

 

Does anyone know the side effects or how I convince him that this is necessary. I want to catch the cycle early before Jake ends up as bad as he was in July... shane is the type that it has to be bad first. AHHH... so frustrating.

 

Anyone have thoughts on side effects of having your child on antibiotics all the time... data or research I can use as ammunition in my battle to get Jake the help he needs...

 

Also.. can anyone explain the why of using steroids after the antibiotics...?

 

Thank you so much for all your advice and help... It is crazy to think about how many kids are out there battling this and parents are completely unaware of PANDAS... I have talked with several people who had never heard of it.

Crazy stuff.

 

 

I feel like I have so much catching up to do in figuring all this stuff out. I just got test results back also and am trying to figure out what is going on. I keep reading posts and are trying to piece information together.

My son, Jake, who is 5 had a sudden onset of OCD/tics this past July 2009. He was diagnosed with OCD in August. I have been doing lots of investigating into PANDAS... Jake has been exposed to strep recently and the "brain bully" that is what we call it... is back.

The results we got are:

Cam Kinasse II 188 (into Pandas Category- something passing through BBB- I think)

Anti-Lysoganglioside 160 (fell into normal range)

Anti- Tubulin- (on the high end of normal range (noramal was 250-1000, Jake was 1000)

Anti-Dopamine 1 (high-range was 500-2000, Jake was 4000)

Anti-Dopamine 2 (Jake was 4000, within normal range)

 

I am trying to wrap my head around these numbers... I also am thinking I need to go to the doctor to see if we can get on antibiotics. I had a bad step infection last week.

 

I will keep reading posts to educate myself. I just thought I would put this out there to see if anyone wanted to respond to me directly to help me make sense of this a little quicker.

 

Thank you for all of your thoughts... you all are so inspiring. Glad to find other people out there that feel just as frustrated and confused as I am .

[LNN]

Anyone have thoughts on side effects of having your child on antibiotics all the time... data or research I can use as ammunition in my battle to get Jake the help he needs...

 

Also.. can anyone explain the why of using steroids after the antibiotics...?

 

 

At first, we were against prophylactic abx too. But live the nightmare long enough, see how different your child can be when he's healthy, and you start to change your mind. Not that there's no risk to being on abx long term. But 70% of the antibiotics used in this country are given to livestock to fatten them up. So keeping my kid off of abx isn't going to make the world safer from MRSA. Does it put my son at risk for contracting something that will require heavy-duty intervention. yes. But right now he's at risk for having his brain attacked by his own body. So you pick your poison. For us, the scales tipped heavily in favor of abx once we saw that they would bring him back to us.

 

Once you clear the infection that's triggering an episode, you can use a short course (some docs say 5 days, some do 3-4 weeks) to halt the Pandas episode. Pandas is caused by inflammation of the basal ganglia. The prednisone reduces the inflammation and stops the chain reaction of chemicals that are perpetuating the tics, OCD, etc. and lets things return to normal.

 

But because prednisone suppresses the immune system, you want to make sure the infection is cleared (and that other family members are also healthy) or the prednisone benefits will be short-lived.

 

I know some people are concerned about the prednisone and it's not something you want to use all the time. But it's used for croup, asthma and poison ivy. On a short term basis, i personally think you're doing more good than harm. Also, "normal" kids get wired on prednisone. Pandas kids get calmed by it, which is good for the whole family.

 

Don't feel alone in having concerns about this stuff. I think we all shared these worries. But after awhile, you realize you're not dealing with a normal immune system and a normal course of illness. The rules change when you start to battle Pandas. It's a war. You fight to win, not to settle for a truce.

[smartyjones]

Once you clear the infection that's triggering an episode,

Pandas is caused by inflammation of the basal ganglia.

 

you want to make sure the infection is cleared (and that other family members are also healthy)

 

 

llm - curious for your thougths - how would you ensure you've cleared the infection? a certain time-frame of abx? a negative strep culture? that's something i'm troubled by - in dec, my son was in exacerbation and testing negative on strep culture. i was troubled if that was enough to prove he didn't have strep.

 

is that a definite thought that it's inflammation of the basal ganglia? it seems so to me for my son b/c he has a very positive reaction to motrin so it seems a plausible connection. i thought buster had said it wasn't so much inflammation but rather inappropriate chemical reactions. (i certainly could have misunderstood) or could it be that inflammation inhibits correct brain chemical connections.

 

thanks.

[LNN]

llm - curious for your thougths - how would you ensure you've cleared the infection? a certain time-frame of abx? a negative strep culture? that's something i'm troubled by - in dec, my son was in exacerbation and testing negative on strep culture. i was troubled if that was enough to prove he didn't have strep.

 

is that a definite thought that it's inflammation of the basal ganglia? it seems so to me for my son b/c he has a very positive reaction to motrin so it seems a plausible connection. i thought buster had said it wasn't so much inflammation but rather inappropriate chemical reactions. (i certainly could have misunderstood) or could it be that inflammation inhibits correct brain chemical connections.

 

thanks.

 

I think if you could ensure you're cleared the infection, many of us wouldn't be on this board. Most of the time, doctors aren't even sure they've picked the right antibiotic for any given infection (since no one's typing the strain - they're just using a shot gun approach). I guess you can only go on symptoms, if there are any. I know that both of my kids are specific antibody deficient - DS Pandas failed 13 of 14 pneummo titers, DD (Pandas?) failed 8 of 14. So I will now advocate for more than the standard 10 day script. But I don't know if there's a fool-proof way to tell.

 

But the point I wanted to make is that doing prednisone while the infection is still active will only help the infection continue and any anti-inflammatory benefit will be short lived. So you don't want to do it until you feel the infection is gone (tho the Pandas episode may still be going on). I think you and your doctor have to be aggressive with abx and trust your gut.

 

I thought it was pretty certain that there's inflammation of the BG going on. Buster can correct me on the specifics, but I thought that the body's autoimmune attack on the BG created inflammation, which then calls in cytokines, which then results in an increase in Cam Kinase, which in turn causes dysregulation of dopamine (and seratonin?). I'm rusty on the specifics, but I've always had the impression it was like a nuclear reaction or domino effect. Inflammation and Cam Kinase aren't mutually exclusive. They're part of the same explosion.

 

But I'll wait until the west coast wakes up and maybe EA Mom or Buster will see the post and chime in.

[Worried_Dad]

Don't feel alone in having concerns about this stuff. I think we all shared these worries. But after awhile, you realize you're not dealing with a normal immune system and a normal course of illness. The rules change when you start to battle Pandas. It's a war. You fight to win, not to settle for a truce.

 

Truer words were never spoken. Beautifully said!

[peglem]

Don't feel alone in having concerns about this stuff. I think we all shared these worries. But after awhile, you realize you're not dealing with a normal immune system and a normal course of illness. The rules change when you start to battle Pandas. It's a war. You fight to win, not to settle for a truce.

 

Truer words were never spoken. Beautifully said!

Yes, this was wonderfully expressed!

[Buster]

I thought it was pretty certain that there's inflammation of the BG going on.... but I thought that the body's autoimmune attack on the BG created inflammation, which then calls in cytokines, which then results in an increase in Cam Kinase, which in turn causes dysregulation of dopamine (and seratonin?).

 

There's mixed studies on actual inflammation. Giedd in 2000 found that there were volumetric changes in children with PANDAS (see http://ajp.psychiatryonline.org/cgi/reprint/157/2/281) Dale had an excellent summary in http://protoc.incubadora.fapesp.br/portal/...%2072%20195.pdf

 

There have been criticisms of this work (i.e., lack of blinding, statistical power issues, etc) but frankly the results haven't been refuted.

 

However, Kirvan and Cunningham in 2006 started investigating another effect which was that the antibody seemed to bind to the dopamine receptors rather than causing inflammation. So what they think is going on is inflammation is happening to the BBB -- allowing the antibodies to cross. But then once across, the antibodies are binding to receptors on the basal ganglia but not necessarily causing demylination or T-cell attacks. It's really hard to tell, but frankly I feel somehow better with binding rather than "attack". Certainly the lack of leisions as seem in ADEM, gives some comfort that the effect is reversable. Unfortunately, more research needed to see.

 

Buster