Upcoming Doctor's Appointment

[wembles]

Hi everyone,

We have an appointment scheduled for my son next week because of suspicions of PANDAS. He is 5 years old (almost 6), and has a history that last May made us think PANDAS could be an answer. His main symptoms are stuttering, flapping his hands/arms, and baby-talk. We finally made the connection that these symptoms cycle in and around sickness this past May when he was diagnosed with impetigo, followed by scarlet fever. He had never had a strep diagnosis previously, but we did notice the symptoms ebb and flow. Prior to the impetigo/scarlet fever diagnosis he exhibited the worst cycle of stuttering/baby-talk/hand flapping that he's ever had. He was waking in the night fearful of bizarre things (like, he remembered eating sand about a year ago and thought he would get lead poisoning). He kept making us promise we would never move from our house. He became obsessed with asking size questions (e.g., what's bigger than our house? what's the biggest planet? what's bigger than the earth? he would ask these questions over and over, despite knowing the answer and having just asked them). His symptoms seemed to gradually improve over the course of 5 months. He was on amoxicillin for 7 days, then developed a full body rash, so our doctor pulled him off it as a precaution. We used a topical antibiotic for the impetigo, but it still took almost 3.5 months to clear (no, he wasn't on the topical the entire time). In August, he caught a cold (started Kindergarten, so it was inevitable), and for 2 days straight blinked his eyes continuously. The hand flapping also increased dramatically.

 

Now the odd part: he is currently completely asymptomatic. His stuttering cleared completely again about a month ago, he has no signs of eye blinking, no baby-talk, no fears, no size questions, nothing. He had a fever last week and still has a cold, and for whatever reason, that seemed to clear up the last remaining hints of any symptoms. We scheduled this doctor's appointment back in August when the eye blinking started, and this was the first opening (it is with a PANDAS friendly doctor). I am unsure what to do...since he is asymptomatic, is there any point in going to the appointment? What could they tell us? Should we cancel and just make another appointment 3 months out again "just in case?"

 

I'd love some input from anyone that has been there, done that!

 

Thank you!!

 

(I updated this in post #9)

Edited January 5, 2015 by wembles

[qannie47]

Well, he certainly is hitting many of the red flags when looking for a Pandas/Pans link. My advice is that you do not cancel his appointment. If this is Pandas/Pans, you are going to need to put a game plan together with your doctor. There is a very high likelihood that you will continue to see future flares; the faster you treat him with an abx, the faster he will recover from a flare. You have caught this early, this is GREAT news.

 

I suggest that you read all that you can about this disorder. The more you understand about it's etiology, what to expect, and treatment options, the better prepared you will be to help your son.

 

Best regards,

Q

Edited November 11, 2014 by qannie47

[Sonshine]

My son had what we now know was his first flare with impetigo (strep infected skin) at age age 5. He also became asymptomatic with minor flares until diagnosed at age 10 with severe sudden onset of OCD, separation anxiety, sudden onset bedwetting, and all the rest. This was in 2008. I wish we knew then what we know now about PANDAS. Doctors are getting involved in preventing future flares. The most recent information is available at pandasppn.org There is a flowchart to diagnose and treat PANDAS. If your doctor has not seen this, he may be very interested. Wishing your family the best.

[dasu]

Those symptoms sound like familiar PANDAS symptoms. Dr L diagnosed my daughter when we were well above a low but still had issues with sleep, anger, anxiety and, although we didnt realize it, she also wasnt eating much. A week into the antibiotics those issues subsided.

[Mayzoo]

I would go and also get the blood work done that they may suggest. If nothing else, the blood work will be a good baseline in case you have future issues, and it may well give you a good starting point in treatment.

[BeeRae22]

I would keep the appointment. Even if you just have basic testing done, you'll have something to look back on in the event that he has any issues later on. There are tests that I wish I had done a year ago on my dd when this started, but I didn't know a whole lot about pandas or pans then-- except that I was pretty sure that my daughter had it!

[wembles]

Thank you all for the advice. We will go ahead and keep the appointment and see what the doctor thinks.

[WorriedDADNMOM]

Yep Pandas.......and yes one issue with ours was........drum roll please...................................................Impetigo!!!

 

Keep the appt and try to learn everything you can.

 

I have two videos on another post today. Look for them.......they are good to help understand what is going on.

 

Let me know if you have any questions.

[wembles]

Update: We had our allergy test and blood work follow-up appointment today. I'm not sure I understand what exactly everything that was tested was, but in short: his IgG (subclass 1-4), Thyroid, Anti-Myelin Assoc. Glycoprotein, Vit. D, Vit. B12, C-Reactive Protein, and Antinuclear Antibodies were all within normal limits. His Memory B Cells were low (I have no idea what those are, so need to research). Food allergy blood tests came back normal, but he was positive for nuts on the scratch test. The doctor wants me to pull him off all nuts. Is that a typical interpretation of food allergies, to pull off the food if only one of the tests is positive? I'm just curious as I've never dealt with any allergies myself! He has never had any visible signs of nut allergy. He was also positive for mold, grass, hay, juniper, sagebrush, and russian olive.

 

The doctor wants to treat the allergies with xyzal. He did not give him a diagnosis of PANDAS or PANS, but said because of his reactions to the last case of strep, he feels something may be going on. He called in a prescription of Azithromycin for us that he wants us to take once a week if we start seeing his symptoms return. My younger son and I recently had strep, but my older son (who is seeing the doctor) did not. He had very mild return of stuttering, difficulty sleeping, and fears at night (wouldn't sleep in his room, wanted to be in our room with the light on). Those lasted about 4-5 days, then went away (my younger son and I are now done with our antibiotics).

 

So, from here just crossing my fingers we don't have to use the antibiotics

[dasu]

Standard bloodwork has come back normal for one of my kids, our doctor reported that isn't used as an indicator - its a clinical diagnosis. I don't know if azithromycin will be sufficient to kill strep strain your son has. My daughter was prescribed azithromycin after her first major flare (well what we originally thought was the onset) and with no change in symptoms. We waited for 4 months to get into our PANDAS specialist, during which time most major symptoms subsided. However the specialist diagnosed her with P and prescribed other abx and once used we saw her back at 95%.

 

What doc did you see?

 

The alergy testing is good as some have reported that they can be triggers for some kids.

 

To your last point - PANDAS does tend to run in families. And some families we have met have had to have entire families treated to solve recurring strep infections.

Edited January 6, 2015 by dasu

[mama2alex]

Yes, if the skin test shows a nut allergy, it's a good idea to remove them from his diet completely. Even if you don't see overt signs of allergy, they are stressing his immune system and you want to minimize that.

 

Did the doctor you saw do any blood tests for underlying infections - strep, mycoplasma, Lyme, etc? It's important to find out if he has any ongoing, chronic infections. If he does and they aren't treated, this could all come back later and be much more severe. That's what happened to us. At age 5 ds had sudden onset of PANS symptoms with pneumonia, but it went undiagnosed and the symptoms faded away in 6 weeks. Then at age 8 it all came back much worse, we discovered PANS, Lyme, Bartonella and other infections, and it took us several years to deal with it and get him stable again.

[wembles]

We saw a PANDAS friendly doctor--he was recommended by a couple families here in Denver. Looking at the blood work, I don't see any tests for underlying infections. He seemed very focused on reducing allergic reactions as a start (his reactions are skin based...no runny nose/eyes/etc.).

I am hesitant to have him on the daily allergy med (his brother reacts with a change in personality to both zyrtec and claritin...gets very irritable), but he hasn't ever been on allergy meds before himself. But at the same time, I want to prevent him from having any more flareups, so I'm willing to try it.

We have a followup appointment in March, unless we have a flare up, then we go in sooner.

[simplyshine]

Just read your post about the doctor recommended in Denver...would you be willing to share it? We are seeing a doctor presently who is very helpful but hasn't done any blood work or allergy testing, which surprised us since he did give our ds a PANDAS diagnosis based on our symptoms list. Thank you!

[wembles]

Simplyshine, I send you a message!

[911RN]

Yep Pandas.......and yes one issue with ours was........drum roll please...................................................Impetigo!!!

 

Keep the appt and try to learn everything you can.

 

I have two videos on another post today. Look for them.......they are good to help understand what is going on.

 

Let me know if you have any questions.

Impetigo can be caused by Staph OR Strep bacteria. So, not surprising it could be a pre-cursor to PANDAS.