Early signs? Next Steps?

[mdenglund]

Hi, All -

 

I cannot tell you how grateful I am that I came across this site and information on PANDAS in general as my 4.5 year old daughter started to show recent symptoms that match what I have read.

 

Just this week, she was diagnosed with rectal strep. She was complaining about the need to go, and constant 'dripping', which began obsessive wiping. Upon bringing her to the clinic, the Dr. did not think it could be strep based upon looking, but we encouraged swabbing and testing anyway to rule it out - came back positive. This was just several days into the onset (or noticeable increase) in symptoms. She is now on Amoxicillin. Beyond this, we have seen a big behavioral shifts. This is primarily surrounding the start of irrational behavior (upset about things to the point of screaming and shaking – almost like a panic attack). She does also have anxiety - not severe, but noticeable.

 

 

I have read a lot over the past 24 hours, and am trying to decipher a tactical plan to ensure we do all needed in the near term to assess if these are indeed early symptoms. When I talked with her Dr. about it, they said to wait out the Amoxicillin, and see if the symptoms remain or come back - she has seen cases of PANDAS. Is this the right thing to do? Should we schedule to get her tested for strep again at the end of the Amoxicillin? She has had strep in the past that has come back quickly (or it never went away) after Amoxicillin, so we are fearful that will be the case again. I read that all others in the house should get tested too? Finally, is there a right or wrong way to address her behavior when she displays the obsessive or irrational behavior?

 

Sorry for the length of this!

Many thanks for any insight you are able to offer!

 

Regards,

Marty

[Chemar]

Welcome Marty

Just bumping your post up so others can respond

[blakes_mom]

Hi Marty, First off welcome and congratulations for connecting your daughters symptoms with strep so quickly. Also good for you for being persistent about insisting on a strep test. I would highly recommend that you retest after the antibiotic treatment. If your daughter was given plain Amoxicillin it may not be strong enough. Have you checked out pandasnetwork.org site yet,it has a lot of good information.

[LNN]

ACN (the host of this site) also has a booklet on Pandas that may help. http://latitudes.org/store/should-you-consider-pandas-ebook/ and you might find some helpful articles on the ACN general website http://latitudes.org/

 

Yes, re-test after the amox is done. Swabbing everyone tests to see if anyone in the family is a carrier (someone who has strep w/o outward symptoms). My DS went on a rollercoaster of treatment early on with amox and augmentin. He'd get symptoms, go on abx, symptoms would resolve, our script would end, symptoms would re-start, he'd go back on abx, symptoms would decrease, abx would end, symptoms would come back.... But after a few rounds of abx, the swabs came back negative. Could be b/c he stopped copperating with the swabs and they didn't get a good sample, or it could be b/c the strep had colonized in the crypts of his tonsils away from where the swab reached. In any event, after 10 months of this up/down nonsense, he had a T&A (tonsil/adenoid removal) and that put an end to this cycle.

 

For addressing behavior, there are two behavioral therapies that help with coping tools -CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention specifically for OCD). If you start a new discussion with her behaviors, some resident ERP experts may be able to suggest ideas. In general, CBT and ERP aren't effective at stopping the behaviors at the peak of a Pandas episode, but they do give you a common vocabulary and will help your daughter understand what's happening. Then, as the flare subsides, the CBT abd ERP tools help resolve the behaviors faster and lessen the chances the behaviors will become habits. Two books appropriate for her age are Tiger, Tiger Is it True by Byron Katie (talks about how sometimes thoughts don't match reality and you need to use real facts to boss back the worry thoughts) and What to Do When Your Brain Gets Stuck by Dawn Huebner. What to do When you Worry Too Much (also by Huebner) also helps with anxiety.

[mdenglund]

Thank you both for the reponses and additional resources!!

 

With the swabbing - would it require another rectal swab, or would it be present in the throat too? If we were to get tested, which would we do??

 

llm - I had read about others who saw success with tonsil/adenoid removal. Was that something recommended to you by your doctor, or did you recommend it to the dr. after the continued symptom returns?

 

Sorry for the continued newbie questions! I appreciate the guidance and insight!

[pr40]

here to second everything said. make sure that there are no other infections and find someone willing to prescribe profilactic abx and different ones as well -- i think that is all I can add.

[JoyBop]

I don't think the strep infection would necessarily correlate wihna throat infection, but you should still check both. Also, you should ask for bloodwork looking for Lyme, mycoplasma or other signs of infection.

 

My dd was 2.5 when she got PANDAS and is now almost 5 so I know how impossible the behaviors can be at that age. We did have a behavioralist work with us before we knew what we were dealing with. She did CBT but not for OCD specifically because we thought we were just dealing with anxiety and sensory issues. It's very hard to find an effective therapist for this age but if you can, its great to have some strategies for helping her to self regulate.

 

You can on me for me ideas that worked with out little one. Nothing fixes them but you can help to minimize the environments that cause the anxieties when in a flare. Example; we could not take dd into any public place where there was even a small gathering of people bc she would freak. She needed lots of personal space and would attack anyone who intruded so being aware of that space and teaching her how to ask for it was helpful. There err many other techniques we applied the helped for a parenting perspective in maintaining some normalcy in the house, but again, nothing fixed her. It's all about giving the. The support they need to deal with it, and making boundaries and rules very clear to further reduce stress.

 

Our dd had miraculous results from tonsillectomy. Her tonsils were very large and we did a sleep study bc our insurance only paid for tonsillectomy based on sleep apnea. Thank goodness she had it!! Mt son had the same thing done but it don't help his pandas one bit so go figure.