PANDAS/PANS with no current infections or is it TS ?

[vvny]

Hi All

 

I am back again seeking some answers on this forums...we are so confused and same goes with the doctors we have seen these past few months ! Other than the cunningham panel showing elevation on one antibody all other tests for any sort of viral/bacterial infections are all normal . My son has multiple tics going on with anxiety and OCD issues. He partially responds partially to antibiotics where his symptoms come down a bit but never goes away completely .Doctors also are confused as they do feel he has some sort of autoimmune issues but are really not sure what to treat as he has no current infections. Can it just be that he has TS disorder although no one in our family has this sort of condition ? I really don't want him to take antibiotics if its not helping his condition...Did anyone have a similar condition where all tests are normal except for elevation in the cunningham panel tests and how did you go about treating this ? All the doctors we have seen here Dr.B and Dr.T say he does not need IVIG yet and have just prescribed supplements and antibiotics that he is currently taking....

 

Please let me know your thoughts if any ...as we feel we are at dead end after spending so much on all the tests and Dr's so far !

 

Best

Vik

[dasu]

What tests for infectious diseases have been done to date? What abx or other meds is he taking now? Have you had igg levels tested?

 

Are there symptoms constant, waxing/waning or relapsing/remitting? Have they been increasing over time? For how long?

 

No family history is a big clue. I have seen this story a few times. No current infections. Its my own kids story. Its PANDAS. They are exposed to some illness, have a diminished immune response (or may not even show any signs) and then present with increased neuro-psych, fatigue, muscular issues.

[mama2alex]

You are definitely not at a dead end. First, what lab was used to test for Lyme and coinfections? All the labs can produce false negatives, but Igenex is more reliable than the others that are commonly used. So find out what lab was used and if it wasn't Igenex, you should retest. Even Igenex isn't 100% - my son and I both tested negative repeatedly through Igenex, though he did have one positive Bartonella result in the beginning. The best way to determine Lyme and coinfections is to go to an LLMD. The diagnosis is a combo of labs, comprehensive history, and clinical observation. There is also a culture test that can be done once you've been off antibiotics for 2-3 months. This is what finally confirmed Lyme for both of us.

Second, was he tested for viruses including HHV6, Epstein Barr, and CMV?

Third, has anyone looked at the possibility of Chronic Inflammatory Response Syndrome (CIRS). This generally refers to mold illness. There are genetic and blood markers that can be checked to determine whether this is an issue for your son. Here's a list of certified practitioners from Dr. Shoemaker's website: http://www.survivingmold.com/shoemaker-protocol/Certified-Physicians-Shoemaker-Protocol There's one in New Jersey.

Edited September 27, 2016 by mama2alex

[vvny]

Dasu , mama2alex,

 

Thanks for sharing your insights. Yes he was tested for all the infections you have listed and the Lyme was done via Ignex.

igg is for allergies right ? I believe IGG cannot be done in NY state as per the doctor we are seeing. He is anyway off gluten and dairy.

He is currently taking omnicef as he allergic to azithromycin. Other than that he is taking a whole bunch of supplements like fish oil , zinc , amino acids , vitamin c , probiotic , nystatin for yeast ...His tics were not that bad when it all started last year post strep infection . It was all manageable until it started getting worse this year since April its almost been constant of many vocal and motor tics and this time the antibiotics are not helping him either. He seems to have tics whether he is sick or not and worse when he is sick and anxiety / fear , ocd along with that too with fatigue !

[jan251]

IgG levels would just be blood tests that indicate the health of the immune system (IgG total, IgG subclasses 1-4, and IgM/IgE/IgA). They were probably done at some point as they're relevant to any discussion of a need for IVIg, but maybe it's time for them to be done again. Check the past bloodwork for any immune system parameters.

 

You might also take another look at your supplement list and think about whether he may be reacting to any of them. Fish oil seems to be a not uncommon problem for tics, zinc doesn't sit well with everyone, and probiotics can be a really peculiar thing (for example, my ds reacts with OCD to saccharomyces boulardii).

[vvny]

Yes his immune system parameters were tested in June and the Dr. feels there is no need for IVIG right now . Thanks for pointing out the supplements one...I will take a look at it again ...he is taking so many of them and they keep adding to it each time we see the doctor . L- carnitine did not sit well with him and he recently started cortisol support supplement as he was having issues with adrenals....He also got a boil on his knee 2 days ago and its seems to be very itchy and it doesn't look like any insect bite....Not sure if its related to anything thats going on .

I am so tired and exhausted trying to find some miracle cure for his condition when there might not be any !

[demeter]

We too hit a "no" improvement time with my son. He was being treated by Dr B and Dr M in Connecticut for Pans. We were addressing many infections as well as monthly IVIG. After a year with no real improvement we took our son to Roger's for the partial hospitalization program. This was our idea not suggested by his current treating doctors. I think sometimes with Pans it is either medical or pysch path. In reality it does not need to be mutually exclusive. Anyhow, for our son Roger's was amazing. I believe he needed all the medical issues to be addressed and then for some reason he was stuck with residual stuff that Roger's addressed. My son was debilitated by OCD, anxiety, intrusive thoughts, however, never had tics. We stopped all prescription meds which was combo antibiotics, and HD IVIG before we checked in last November. He was finished with the program mid January this year and he has been 100% ever since! He still takes zero medication. He does talk to his OCD therapist every 1-2 months for maintence. Anyhow, just another idea. Best to you and your son and I hope for healing soon. Please feel free to contact me if you want any further information!

[vvny]

demeter ,

 

Thanks for replying to my post and I sent you a pm regarding this program at Rogers. I am willing to explore any avenue to find the right treatment for him...and we have forgotten what "normal" is in our home ! As I said , we are not sure if all these supplements he is taking is helping him or causing him more harm ! If not for some support from this group I would be so lost !

He has not shown positive for any infection so far but again cunningham panel report shows elevated for one band (Anti-Tubulin).He goes normal for a week at the most sometimes and then it all starts again out of nowhere ! I cannot see him suffer like this and after spending on his treatment with no help from insurance , there seems to be no improvement this past year in his condition !

 

[tj21]

We had a TS dx when DS17 was around 8 or 9 yrs. old and I'm not ruling it out, however only his cAmKinase II levels were elevated on the Cunningham. Is this same for your son? Our PANS NP said she sees this with tics and that it's usually not "TS."

 

We haven't re-tested, but after PANS treatment for 3 years, we have long periods of NO tics (3-4 mos.) until a flare occurs.

 

Hope this helps re. your original q.

Tracy

[vvny]

Hi Tracy

 

My son has elevated levels on Anti Tubulin on the cunningham panel tests.He seems to be mildly immuno deficinent according to the doctors along with inflammation related to PANS. We have seen 3 Dr.'s so far in NY and none of them have given us a final diagnosis as they seem to be confused and doing the wait and watch thing on antibiotics !

[tj21]

vvny - Don't know about Anti Tubulin (DS17s other results were in normal range on Cunninghame), though found this here : http://latitudes.org/forums/index.php?showtopic=21064.

 

[tj21]

Well, I was searching for info. on L-carnitine and found this old thread, that I'd commented on.

@vvny

are you still here? Any luck? We've been in a bad 3-month flare (screaming tics, spitting tics) that we can't get under control. DS is now 17 and we've been treating PANS for 5 yrs. Trying to get a 3rd IVIG, prednisone burst didn't work this time.

Tracy

Edited June 16, 2017 by tj21