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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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saidie10

Cam Kinase 179...does my child have PANDAS?

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Hello all! It has been a while since I have been on the boards. I find myself creeping back in though as we again deal with the prospect that our younger son (6) might have PANDAS too like our older son (8). For an update and to help you understand where my question is coming from, both boys took the Cunningham Test in the Summer of 2010 because both boys had symptoms of PANDAS to some degree. Older son scored 164 and younger son scored 179. Older son had clear and sudden onset of symptoms with tics and anxiety, anger, frustration, separation anxiety, and tantrums beginning in the Summer of 2008 and OCD appearing very abruptly in the Summer of 2009. We saw a clear change in handwriting and math skills as well. Older son also had elevated anti-neuronal antibodies and elevated titers (ASO and AntiDNase B) while younger sons were within normal ranges. Older son had an Immune Deficiency in Subclass 2 while younger son, although very close to abnormal, had levels within the normal range.

 

Our older son simply changed during the Summer of 2008 and we can almost certainly track it back to a case of impetigo. While we waited for doctors to listen to us, our son suffered with 7 strep infections over an 11 month period. He suffered so very much and I was so thankful to find a Dr. willing to do the right tests and get us the dx we knew we were dealing with. As for our younger son, he has always been the "difficult" child, the moody one who would throw tantrums. This makes it very difficult to say these are PANDAS symptoms. That being said, our younger son also quite obviously would react when infected with strep with PANDAS symptoms. We have seen the huge pupils, separation anxiety, bed wetting incidents, OCD and tics. These improve with abx. We removed his tonsils in January of 2011 to prevent him from suffering and to keep him from bringing strep home to the house to effect his brother which it had so many times. Two weeks ago though, our younger son started having increased anger, frustration, anxiety, tics, OCD and even a bed-wetting episode. Turns out his cousin whom he spent all weekend with last weekend tested positive for strep. I contacted our older sons doctor right away and he agreed to run bloodwork on our younger son a few days ago. His ASO was 193 with <200 being normal and his AntiDNase B was below 60. His last titer levels were both under 100 about 7 months ago so it has rising. Should we test again in 6-8 weeks?

 

MY GUT is telling me this child has PANDAS just like his brother. He scored 179 on the Cam Kinase, he would have obvious PANDAS symptoms when he had strep infections, with improvement of symptoms during and after abx treatments, yet I really don't know if I will get treatment for him unless his titer levels are elevated! I thought some kids would not have elevated titers and that shouldn't exclude them from a PANDAS dx? Our older son's doctor did agree to try our younger son on 10 days of penicillin but I just don't think that is going to do it!!! Everyone was ready to do something for our older son last Summer because he had the clear cut onset and all the abnormal levels, but my younger son is suffering too I just know he is! Would you guys say with a Cam K of 179 and what I have described to you that he has it too? What would you do if you were me? Any and all advice is GREATLY appreciated!!!!

 

As an update on our older son, the good news is that right now he is doing well! Since August of last Summer, he has had one high dose IVIG and 3 lower booster type doses. He has been on daily penicillin, probiotics and DHA since then. The IVIG's were truly miracles and we thank god we finally found a doctor willing to help our child! If we would have continued down that road I can not even imagine the state our poor boy would be in right now. It truly is a nightmare when I think about what would've happened if we had not pushed and fought for him, knowing in our gut he had this new and controversial Disorder. Now he is by no means cured but he is slowly healing and we hope he continues to recover. We know there will always be chances for him to slip back, but we are hopeful and we will do our best to help keep him healthy! He is completely off the SSRI that the Pedi Neurologist put him on in 2009 when she told us he likely had Tourrette's and OCD. Boy it felt great to send her the letter that she was wrong and she better stop doing such a disservice to children whom come in presenting with these symptoms! She told us that he couldn't have PANDAS...it was too rare...blah blah blah! If only she had done a simple freakin bloodtest she would have seen his extremely elevated ASO and AntiDNase B titers and we would not have had to wait another year before someone finally listened to us!

 

Okay, now that I have got all this out there...hit me with your best opinions!!!!! Thank you all so very much!

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I will probably be a lone voice here, but I want to remind you that elevated CamK is not unique to Pandas. You need to look at the other anti-neuronals and clinical picture.

 

You do paint a clinical picture of some sort of health-related behaviors. The fact the your younger son has always been difficult raises a flag in my mind that there may be an underlying issue deeper than strep, especially if anti-neuronals were in normal range. I don't think it's a bad thing to meet with the doctors who've helped your older son and do some testing or trial treatments for your younger son, in conjunction with some cognitive behavior tools for emotional control. It's a good place to start.

 

I only caution you to not jump immediately to Pandas based on your older son's experiences. I always assumed that all of my kids' issues could be explained and treated with one diagnosis - Pandas. Turns out there are several things contributing to our picture and I think I did my kids a disservice by ignoring symptoms that didn't fit neatly into Pandas because I wanted so badly for there to be one answer, one solution. As you head down this path, which again, I think is reasonable, just be sure to always stop and do a reality check. Don't ignore things that don't fit, don't expand the Pandas definition to accommodate outlier lab results or behaviors or responses. For me, it turns out that all those little things that didn't follow the script ended up being important.

 

I do hope you find collaborative, curious doctors and that your younger one finds relief quickly.

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sadie-

 

Hi! So glad your older son is doing well!

 

From our experience- I would start trying pandas treatment right away.

 

Firstly, low titers are meaningless- so I would drop them from the equation (I am sure you know this).

 

I have two girls with pandas. Youngest diagnosed first due to overnight onset of debilitating ocd (by overnight I mean about 4 weeks).

 

At the same time, older daughter had strep, and went from my easy sensible kid- to a difficult kid :( We didn't think she had pandas, because she was just being difficult. We attributed it to newly onset stomach aches (which were actually pandas) and/or stress of sister's illness. Even though we were learning so much about pandas and ocd, we could not see it in our second daughter, ggrrr. After 6 mos, we came around and had her do the Cunningham test. Her camkinase was normal (which threw us off course for another few months), even though her antineurals were a bit elevated. Well , a few months later she contracted H1N1, and it became crystal clear she had pandas. Maybe it was denial, but it was much harder to really see what was happening with our older daughter.

 

Now, both of my kids have VERY similar courses of the disorder.

 

So, we know, just from anecdotal info from the board (and my neurologist now routinely asks about siblings upon diagnosis of pandas), that one pandas child greatly increases your odds of having another. You have some correlation of symptoms with illness. You have some indicators (though not perfect) from the Cunningham test that something is going on. And, you have ocd. I think the only puzzle piece your are missing is response to pandas treatment (although you already have seen benefit from antibiotics).

 

So- while I am not completely contradicting LLM's advice (she is very wise, and knows a TON about lyme and other issues)- I would say your most sensible course right now would be to try pandas treatment. We have chased testing on TONS of stuff. Both of my girls have probably given 30 vials of blood, looking for a "cause" or other "problems". Frankly, they test normal, or great, in every test- except Cunninghams. All of those blood tests, while they ease my mind, have really been a waste of time. We have gotten amazing response to pandas treatment- and IMHO that is the truest test. If, of course, you don't see the resolution of symptoms that you see in your older, you need to be quick about switching courses.

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I didn't read your post thoroughly, but if it was my child, I would run every test I could. I know it's difficult to take blood with a young child (and that's not an issue with my son), but it's worth it (just my opinion). At least run all the tests that your insurance will pay for. One thing I hugely regret with my son is that we didn't test sooner for EVERYTHING. OCD can be caused by many, many types of infection, not just strep and lyme. Every test gives a little bit more information about what is going on. And I would run the ASO test again in a few weeks to see if it is rising/falling (as well as the DNASE and mycoplasma if they'll let you). And move forward towards PITAND treatment even if the ASO stays low if you still see symptoms, as it certainly won't hurt to try antibiotics for a few weeks. This is just what I would do. Wishing you well.

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LLM - you said "You need to look at the other anti-neuronals and clinical picture." You are so right and that is my biggest hang up! I feel as though his clinical picture when he has had or been exposed to strep is obviously PANDAS, but I get so hung up on the Cam Kinase and the other anti-neuronal test results. On one hand you have this high Cam Kinase which Dr. MC wrote on his test results...within upper PANDAS range, and then you have the other page with the anti-neuronals and she wrote "normal". With my older son, even she said classic PANDAS case and if you look at the results she sent us, his anti-neuronal page says "extremely elevated...you almost always NEVER see these types of numbers in children that are normal". So I do appreciate your advice...it is great advice. I don't want to jump to treatment for anything until we know for sure, I just don't know sometimes with PANDAS that aren't clear cut, how you can know for sure?

 

thenmama, dcmom and Christianmom - thank you all for your thoughtful insight and advice. I know a mother's instinct is important too as it was VERY important for the year and half we fought (well I personally as DH was in a fog at the time) for our older son to get the treatment and help we knew was right for him. My younger son had all the initial bloodwork done when my older son did and that is when we saw his titers were normal and his brothers were elevated. They did test for Mycho P and both were normal. Do you guys think it would be crazy to do the Cunningham Test again? See what's happening now? We have thought about Lyme testing but I just can not get anybody on board for that...it seems really far fetched for our little one (I know you never know but just how we feel).

 

Again, thank you all so much for the insight! I knew when I woke up this morning I would have some great and thoughtful responses from other Mother's struggling with similar issues!

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u]Do you guys think it would be crazy to do the Cunningham Test again?[/u] See what's happening now? .

 

I know Diana P. had this test re-reun on her son, I believe before and after IVIG, so maybe you could ask her if it is worthwhile to re-do. I personally would not spend the money on that as I think if you are going to pay out-of-pocket for a test, there are others that might give you more information--for example the GI stool test by Metametrix or IGENEX testing. I had the Cunningham test done on my son (CamK 168) and was glad I did as it convinced me that he at least had something physically wrong with him and did not just have regular OCD (if there is such a thing). That said, I would not rule out PITAND if my son's CamK had been normal. I personally would not run it again.

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I don't think you can get Cunningham's test re-run now. Aren't they still looking for a commercial lab with a projected date in the spring?

 

My girls' experience is similar to DCmom; two girls, one more severely impacted than the other. Spent the $1000 on igenex lab tests; neg for lyme and co-infect., bordeline Bartonella IgG, then spent another $200 to re-run with even cleaner results than the first time. In the meantime, we tried Bactrim and Zith on the doc's advice and NO behavioral changes, just resulted in liver distress that was temporary.

 

We never ran Dr. C's test because at the time we were considering it, prior to treatment beyond abx, we were socking all of our dollars away for treatment. Both have T & A removed (whole family does.) My girls both had highly elevated anti-DNAse B and ASO, but completely asymptomatic of strep and never cultured positive. If there is one thing we all have in common, it's that our kids don't always respond the way they are supposed to; be it tests or illness! And to keep things lively, not only do they not respond the way they should.....they do not all respond the wrong way in the same way. (How many double negatives can U jam in a couple sentences???)

 

The only treatment done for my younger dd has been abx and T & A removal. AGAIN, upon office exam, ENT was unimpressed by her tonsils (they looked normal to a doc that looks at tonsils all day long), but removed them yielding to her pandas doc. Surprise, surprise....after the surgery he says they were a complete mess with evidence of chronic infection. Our kids are chameleons whose presentation can be an enigma. The whole diagnostic and treatment process can be such a conundrum! The sibling connection is definitely there, the more severe one usually paving the way (and to some degree) "saving" the other one, now that the parents know the drill.

 

All folks can do is offer up there stories for you to make a connection or discount. As my good friend Philly says "You don't want to end up hopping on one foot just because someone told you to with authority." :D

Edited by JAG10

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You are at a difficult crossroad right now and all anyone on this forum can do is to offer you advice based on their experiences and you can take bits of this advice and apply it to your situation and throw out the rest. On that note, this is our experience:

 

We chose to treat PANDAS aggressively with 6 IVIG's with our son and the first IVIG brought miracles and then we never saw the same gains with the rest of the IVIG's. We were at a complete loss until Lyme mom started posting and even though her posts scared me to death and I thought lyme did not apply to us since we do not live in a lyme area and all of our sons symptoms seemed to be related to chronic strep, we eventually tested both kids and discovered lyme underneath everything.

 

The lyme treatment took a good year of severe bumps, but both kids are stronger than ever today! I know Dr. K does not test and treat for lyme, but he did tell me that before doing an IVIG on our daughter, we must treat for lyme first because high dose IVIGs are really immune suppressing and the IVIGs will not be as effective if there is a chronic long term infection. We never ended up having to do an IVIG on our daughter and quickly quit the high dose IVIGs on our son since you ultimately do not want to suppress the body if there is an infection.

 

I do think that there are many other infections, without lyme, that can create PANDAS symptoms and I would check for mycoplasma and bartonella along with strep to make sure that you get rid of all infections before going on to steroids and IVIG/PEX.

 

So, this has just been OUR experience and I know that everyone on this forum has different experiences to share. I believe that the more other people share their experiences without judgement of others, the more we can learn from eachother!

 

I hope this helps!

 

Elizabeth

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My daughter had the Cunningham test in June 2009 shortly after a 5 day steroid burst. Her CamK was on the lower range of PANDAS (136) and the anti-neuronal titers were all elevated. We were told my daughter was "classic PANDAS" at the time by her treating PANDAS doctor. We later went on to find we are dealing with lyme & bart as well, and didn't see real improvement until we addressed it. My daughter still reacts to strep too. It's possible to be dealing with more than one infection. Just sharing my experience.

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Still urging folks to give the GAPS diet and homeopathy a try! We've also done IVIG (6 times!), but have seen the most

improvement with these other measures. Hoping everyone has a great day...

 

God bless,

Holly

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saidie10----when Dr. MC wrote: "extremely elevated...you almost always NEVER see these types of numbers in children that are normal"--can you share what they were?

 

I've been told by an immunologist and neurologist that antineuronals are not indicative of anything for sure...that random "normal" people walking down the street can have them in their blood. Even our "pandas specialist" is not treating aggressively for our dd with a CamK of 168, high antilyso, and antiD1 4000 (4 times the mean!).

 

christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help?

 

Jag10---I like that statement by Philly! I think I took the "forcefully" part and ran with it.....

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The part of your post that caught my attention was where you said that this child has always been your "problem child" and you can't really say exactly when things started. This is how it was for our daughter. Our oldest son was a classic PANDAS presenter with handwashing OCD and anxiety immediately following a strep incident. My second son with milder symptoms following illness, but really not requiring intervention until recently (another post entirely). My daughter was always the "strong willed child". To the point that we started seeing a family counselor when she was 3 to get a plan on how to deal with her "strong will". Looking back now we realize it was all mini episodes of PANS. When they are 2 or three it is easy to pass off as a phase or terrible two's. Then there would be months of good times, you know the routine. She was not a classic presenter (at least not to me). So it wasn't until she was seven and received the flu mist and then there was a huge exacerbation that we could deny it no longer. Now looking back over the years, I see that all of her behavior really wasn't "strong willed" it was OCD that she was unable to verbalize because it started at such a young age. It didn't appear like the OCD in the other kids. Although I know now, it can appear very different in different children. So this last year has been horrible trying to get her stabilized. It has taken 2 IVIG's, antibiotics and CBT and we still have some work to do.

 

I would imagine your "problem child" is most definitely a PANDAS / PITANDS child. He may not have high strep titers but that doesn't mean there isn't something else involved. Like I said my son was strictly strep triggered so I thought that would be my daughters issue as well. Wrong. She ended up positive for Myco P. Her strep titers were only slightly positive and she really didn't respond to antibiotics used to treat strep. It wasn't until she started Biaxin that we saw progress. Clearly with Cam Kinase levels that high you can't deny there is a PANDAS / PITANDS issue here. I think your only questsions are, what is the infectious agent..... which specialist are you going to use...... and how aggressive are you going to be? JMHO! Best of luck with your boys....

 

Dedee

Edited by Dedee

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christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help?

 

 

My son's Igenex testing was questionable for lyme and negative for co-infections. Right now he is being treated for KPU as he tested high (30.5). He just started treatment with our naturopath. I'll post if we see improvement. Still waiting for results from Metametrix complete stool profile.

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saidie10----when Dr. MC wrote: "extremely elevated...you almost always NEVER see these types of numbers in children that are normal"--can you share what they were?

 

I've been told by an immunologist and neurologist that antineuronals are not indicative of anything for sure...that random "normal" people walking down the street can have them in their blood. Even our "pandas specialist" is not treating aggressively for our dd with a CamK of 168, high antilyso, and antiD1 4000 (4 times the mean!).

 

christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help?

 

Jag10---I like that statement by Philly! I think I took the "forcefully" part and ran with it.....

 

Hi...sorry I am just getting back to you. My son's D2 was 16,000. I really don't understand a lot of information about antineuronals, but I will tell you that when I was at the TX Symposium and asked Dr. C a question about my younger son (like the one I asked you guys here) when I mentioned the D2 of 16,000 she rolled her eyes as as if to say "my god that is high". So I believe that the antineuruonals are significant and mean something. Again, I really don't understand all the medical stuff, I just know that my son has stuff going on in his brain that is not right and these tests they did helped to indicate that.

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