Closing in on PANDAS dx? Test results

[kos_mom]

My DS saw Dr. L in June--she suggested DD 19 be evaluated. Appointment not until October 2, but as she is quite nonfunctional now (always feeling unwell, ongoing gastric problems, pains in in legs and back, increasingly agoraphobic--rarely leaves house and is mostly in her room, very little appetite, two asthma attacks this month, in addition to severe pneumonia in May, as well as minor OCD and severe insect phobia, also occasional seizures and mysterious nonpsychotic hallucinations both visual and auditory for years) I wanted to do as much as I could in advance. Her new adult PCP seems interested in possible Pandas, but knows little about it. I have a few questions I hope someone can answer.

 

DD's abnormal tests results from July 17:

 

ASO 656 (Range 0-169)

Anti DNase B 147 (Range 0-120)

 

Note: She has not been tested for strep for three years and has significant recent abx history. May 9 to 17, 5 day Z pack for pneumonia. May 11-May 15 IV vancomycin and cefepime in hospital for necrotizing pneumonia. May 16-May 26 Avelox 400 mg. July 4-14 Avelox 400 mg for possible pneumonia flare. 7 day Avelox 400 mg again starting July 26 for same reason.

 

IgE 197 (Range 5-159)

 

CRP 22.42 (Rheumatological range 0-10, cardio range 0-3)

 

Iron 47 (53-190) (Has problem with too frequent periods)

 

Normal test results from tests showing up on Pandas Network and IOCDF sites : thyroid, vitamin D, IgA, IgM, and IGg.

 

Question 1: Does this all look consistent with Pandas?

 

Question 2: What other tests should I get?

 

From Pandas network, looks like EBV, Mycoplasma pneumonia, Western Blot, Herpes Simplex, Stapholococus, CD4, and IgG subclasses 1,2,3 (what about 4?)

 

She's had EBV, so I am not sure if there is any point in testing (she does get sweats and chills almost every night though). I also read testing for CMV, but she's tested positive for that in the past. In addition she once tested positive for Babesia--should I get that re-tested?

 

Question 3: Should I get her ASO and anti-Dnase tested again? It's been two weeks since last test. If not now, when?

 

Question 4: DS has post T and A appointment with Dr. L on August 8. Any views on previewing DD test results with her then for opinions on abx teatment pending October 2 appointment? Other option for early treatment would be to have her P doc, who is at NIH but sees patients on the side and knows Swedo and colleagues, consult with his NIH colleagues for a recommended course of action.

 

Much thanks for any advice.

Edited July 30, 2012 by ko's mom

[mdmom]

Please keep in mind that PANDAS is now a sub-diagnosis of PANS - Pediatric Acute-Onset Neuropsychiatric Sydromes. PANS can have one or more infectious/environmental triggers.

 

Your daughter has an awful lot of physical symptoms, which makes me think there is something in addition to strep causing PANDAS.

 

Just to further complicate your life, I'm going to suggest you see a Lyme Literate doc to rule out Lyme and co-infections. My son's psychiatric symptoms were so intense that we overlooked his physical symptoms. Your current doc could be part of a team of docs helping. LLMDs are very good at finding infections no one else thinks to look for, not just Lyme.

 

When we started treating Lyme and co-infections and strep (LLMD also found high viral load), mhy son's PANS symptoms started abating. I can still see lingering PANS symptoms, mainly in the form of OCD but for us it has worked to the get infection load under control before directly addressing the autoimmune issues.

 

Hope this helps.

[PowPow]

sounds like she was awfully ill with pneumonia this spring & summer!

any idea of pathogen? Did they do a sputum c&s or anything?

Even if infection is cleared (as I would sure hope all those abx would be doing)--

it may have set the autoimmune path in motion.

Do you see worsening on the Avelox?

It is is fluoroquinolone antibiotic, which have been known to cause hallucinations and other neuropsychiatric behaviors.

When she is better, would you consider trying prednisone, to see if it helps her?

I think any advice you can get while waiting for Dr L is great.

I understand about the LLMD/babesia issue (been that route)- but we got our most help from Pex & Steroids (oral and IV).

Has anyone given her solumedrol or other corticosteroids during any of this pneumonia treatment? Did you see a difference?

 

Another lab avenue to check- if you can get someone to- would be Anti-nuclear Antibodies or other autoimmune markers. that might help point in a direction - though either way probably does not make a difference- just interesting to know, I guess.

We see Dr L and once you get in there-- you are in good hands! Just keep being persistent and organized- it seems like you are definitely staying a big step ahead of this- AWESOME!

Edited July 30, 2012 by PowPow

[cobbiemommy]

I would recommend the streptozyme titer and streptoccoccal serotype testing. A full immune workup is probably in order to see if your daughter is holding onto the antibodies for strep, tetanus, and other illnesses.

 

If you mention daughter's test results, do it at the end of the appt. Keep it brief and know that she cannot prescribe meds because she has not seen your daughter. You could ask for a recommendation of an antibiotic for other doc to give or ask her to do a phone consult at your expense with the other doctor. Just a thought.

 

Cobbie

[kos_mom]

Thanks for all the replies. The pneumonia was major--she was in hospital for six days: they still were treating very seriously in our two trips to the ER this month. She has been on steroids as on both trips she also had major asthma attacks (her lips were blue the second time). The first time she was given 60 mg of prednisone for 6 days and the second time 40 mg for 5 days, with a taper ordered by her PCP, which we started today. I didn't see an improvement the first time, but clearly she was coming down with something, culminating in 103 fever last Wednesday. Since her Wednesday trip to the ER, I have begun to see a real change for the better in mood starting Saturday, although her energy level remains very low and she continues to spend much of her day in bed.

 

They didn't identify the pneumonia pathogen--in fact they said they were alternating their two big gun IV antibiotics to ensure as much as possible was covered. Interesting about the Avelox and hallucinations--didn't know that. Hers are longstanding so I don't think they are related, but I will definitely be on the alert as she is still on Avelox.

 

Her ANA is fine. Her Babesia test was with an LLMD we saw briefly three years ago. He also tested for Lyme and said it was negative, but then added sometimes you have it and it doesn't test positive. (Yikes! Would really prefer not to have to deal with Lyme--controversy over treatment for that seems exponentially higher than that for Pandas/PANS!) I am adding streptozyme titer and strep serotype testing to my list.

 

For Dr. L, I was planning to put the relevant results together in a short list and show it to her at the end for a recommendation. I think I can get another doctor to prescribe on the basis of what she says.

[Hopeny]

sorry your DD is suffering so much. even though yes I 110% agree it's a very unpleaseant path it sounds like your DD needs a full Lyme eval with a very experienced LLMD which can cause many of the symptoms you describe, we started with Lyme and now find ourselves with Lyme/PANDAS. As far as I know, if someone has Babesia that would likely mean Lyme too. A negative WB or Elisa test for Lyme doesn't mean all that much. On the bright side if it does turn out to be the case, with treatment for both conditions your DD has the best chance for recovery. Babesia also needs very specific treatment. It is impossible with Lyme especially a complex case to self treat in an early stage. Wishing you the best

[bulldog24]

I agree that Lyme needs to be looked into further