7yr old possibly PANS case update and confused !

[vvny]

Hi Everyone !

 

I just wanted to post an update on my 7yr old son's case ....I had posted on this forum a month ago and I have been busy this summer trying to solve or diagnose my son ! After having a year of tic flare ups and OCD and fear/anxiety issues and treating him on abx for 7weeks last year and handling his case only with supplements and homeopathy with mixed results we completed 1st grade ! We finally decided to see a PANDAS/PANS doctor and do all the necessary blood work required for his case .We did the Cunningham panel tests first which showed elevated on one of the bands ~4000(1000 is cut off) . Rest were all on the cut off mark .We saw Dr.B in upstate NY and Dr.T in NJ.They both ran lots of blood work for my son and most of the tests came back negative for any infections (lyme and others....).So now they feel he does seem to have PANS symptoms but are not able to identify what is causing the inflammation. They are running more blood work now for thyroid , genetic tests !

 

We have seen our son have severe flare ups of tics / ocd / anxiety in the meantime in summer even without showing any outwardly symptoms of being ill or any fever ! We started ib brufen , abx and it partially brought down his tics .Took him off antibiotics in one month and now just using some supplements like curcumin , magnesium , immune boosting and other natural antivirals prescribed by Dr.B till the rest of the blood work come back.

Both the doctors feel that he may not need IVIG at this point ....maybe identifying the right antibiotic to treat what is causing this inflammation.

 

We are feeling so hopeless at this point after spending so much money on the tests and doctors and still not able to identify the cause and treatment option for our son.He still has extreme tics going on. Nothing seems to help him much ....I am so worried how he will be able to handle once school re-opens .I have become a nervous mess myself going through all this in summer !

 

Any pointers on what our next options should be ? Is the cunningham report conclusive of PANDAS/PANS (high on one of the bands) ?

 

Thanks

VVNY

[GMT111]

VVNY

 

Firstly I am by no means an expert, my sons immunoglobulins came back negative, however, I had him tested for specific infections which show both exposure and current infections, I was informed by the Microbiologist that my sons low CD57 count may be indicative of chronic infection and since it has a role in populating B cells, these may not be sufficient to produce the anti-bodies to recognise or fight infection. Essentially, B cells play a significant role in the population of anti-bodies so you may need to ascertain whether he has suppression of B cells.

[vvny]

Hi GMT11

 

Yes I do think Dr.T mentioned he was low on something (not enough antibodies ?) which I did not understand . How was your son treated for this ?

[tj21]

Re.: "He still has extreme tics going on. Nothing seems to help him much ....I am so worried how he will be able to handle once school re-opens .I have become a nervous mess myself going through all this in summer !

Any pointers on what our next options should be ? Is the cunningham report conclusive of PANDAS/PANS (high on one of the bands) ? "

In our case, CamKinaseII from the Cunningham Panel was elevated and indicated in tics. He was in normal range for all others, so we have a PANS dx, cause inconclusive. I will say that when ds16 flares up, his tics are the first sign, then behavior deterioration. That said, we are staying on abx (Augmentin) for now, b/c everytime we go off, we have a flare.

[vvny]

My son shows elevated level on the Anti-Tubulin titre and normal range for all the rest on the cunningham panel.

Do you know what that means ? Is it indication of PAN's ? Also I am so confused as I was under the assumption that for PANDAS/PANS the flare ups occur when the person gets sick and you treat them with antibiotics and then the flare up goes away until the next time they get sick.But seems like PANDAS/PANS kids end up staying on antibiotics even if they are well as they seem to have symptoms coming back ?

My son had only one case of strep last year and never got that sick for this past year just one or two viral colds and no fever .But he seems to have tics even though he was well on and off....and that is what confuses me ?

Right now the flare up of tics and behavioral issues started during the spring break when we came back from Mexico.He was fine for 3 months with no symptoms prior to that.And this recent flare up is still going on and he has shown no outward symptoms of being sick even though we ended up treating him with antibiotics for 7weeks that resulted in partial relief from tics but they never really went away.And when I stopped his antibiotics after school ended his tics are back to where he was prior to starting them.But again he is not showing any signs of illness....this is so confusing ?

[Louisa]

 

Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms.

 

If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase.

Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.

Thanks for the information which really fit into my son's situation. I feel like I am seeing a light again. His Lyme and Babesia tests were negative with Quest Diagnostics. Definitely I will explore getting the Lyme test again with Igenex. Do you know how much they charge for the test?

 

Does anyone know of good integrative LLMD in new Jersey or nearby states.

 

Thank you