Jump to content

Menu

PANS/PANDAS


scbusf
 Share

Recommended Posts

Long story, but how do I ask our Pediatrician to rule out PANS/PANDAS?

My 13 year old does have a history of Anxiety/OCD, but last summer, she had been doing so well and Covid just sent her back into a pretty bad place.

  • Like 1
Link to comment
Share on other sites

1 minute ago, ktgrok said:

This may help? Symptoms and medical history are the main way it is diagnosed, there are some links on that page to those. https://pandasnetwork.org/diagnosis/

Thank you. We are seeing the Pediatrician this Thursday. Kiddo is still losing weight because she is restricting her food. I thought it was her OCD latching on to needing to save food so we don't run out. But I think it's wise to rule out PANS/PANDAS.

  • Like 1
Link to comment
Share on other sites

11 minutes ago, scbusf said:

Thank you. We are seeing the Pediatrician this Thursday. Kiddo is still losing weight because she is restricting her food. I thought it was her OCD latching on to needing to save food so we don't run out. But I think it's wise to rule out PANS/PANDAS.

A quick and dirty thing to try is ibuprofen 3-4 times a day for a few days. If the OCD is brain inflammation it may help. If it does, that points to inflammation, and may help doctor understand what is going on. 

  • Like 2
Link to comment
Share on other sites

OCD also "develops"in many people during puberty. My daughter has OCD and her OCD obsession/compulsions are food related. It took us four relapses of anorexia to figure that out, diagnose OCD and find a great ERP therapist and med that worked.  She had OCD traits as young as 7, developed anorexia and developed full-blown OCD at 13/14.

  • Like 2
Link to comment
Share on other sites

59 minutes ago, ktgrok said:

A quick and dirty thing to try is ibuprofen 3-4 times a day for a few days. If the OCD is brain inflammation it may help. If it does, that points to inflammation, and may help doctor understand what is going on. 

I added in a daily antihistamine when my DS12 was having PANDAS flares (now several years ago). Was very helpful with the advil.

Link to comment
Share on other sites

13 hours ago, retiredHSmom said:

OCD also "develops"in many people during puberty. My daughter has OCD and her OCD obsession/compulsions are food related. It took us four relapses of anorexia to figure that out, diagnose OCD and find a great ERP therapist and med that worked.  She had OCD traits as young as 7, developed anorexia and developed full-blown OCD at 13/14.

Yes. I didn't include all the details in my post. She has had anxiety and suspected OCD for many years. She was also adopted from China at 21 months old. She isn't restricting food due to wanting to lose weight or thinking she's overweight. She's doing it because her OCD thinks she needs to save food so that we don't run out. Or save food so that someone else can have more. She was doing really well and came off her anxiety meds in late 2019. Then Covid hit ...... That sent her back into a hard place.

Link to comment
Share on other sites

You need a PANS/PANDAS specialist to properly diagnose.  The right blood test can be helpful if the child has a persistent infection that is causing brain inflammation which is causing symptoms or severity of symptoms.  PANS can have viral triggers, though, which was the case with my DD (coxsackievirus and influenza.)  A viral trigger will not show up in a blood test, although there was something about my DD's bloodwork that was consistent with a PANS diagnosis according to her immunologist. (I don't remember what it was.) 

The telltale sign of PANS/PANDAS is a sudden and severe onset of symptoms.  I do think it's possible that my daughter had OCD tendencies when she was young but she had a severe onset when she was 10yo of sudden and extreme OCD, tics, food restriction, separation anxiety, academic and behavioral regression, urinary incontinence, and just plain bizarre behavior.  The week that she started ibuprofen, she started coming back to being herself.  After a few weeks of ibuprofen and antibiotics, she was making drastic improvements. I will never know if it was an early strep infection that got that ball rolling years ago, a genetic predisposition to OCD, or her PANS onset that triggered her lingering OCD.  Her very severe symptoms resolved with anti-inflammatories.  She has never displayed tics outside of that time period.  

It's definitely worth looking into, because untreated brain inflammation can lead to permanent damage.  This info might be helpful -- https://iocdf.org/pandas/ 

Link to comment
Share on other sites

7 hours ago, scbusf said:

Yes. I didn't include all the details in my post. She has had anxiety and suspected OCD for many years. She was also adopted from China at 21 months old. She isn't restricting food due to wanting to lose weight or thinking she's overweight. She's doing it because her OCD thinks she needs to save food so that we don't run out. Or save food so that someone else can have more. She was doing really well and came off her anxiety meds in late 2019. Then Covid hit ...... That sent her back into a hard place.

Maybe, my point wasn't clear. My daughter wasn't restricting food because she thought she was overweight.  Her OCD told her that there might be bugs or ground glass in it, or that if she ate then her mouth would be dirty and she might touch her mouth and get food on her hands and then when she touched her eyes, she would get food in them and go blind.

It is common for OCD to worsen in puberty and whether it is worse because of PANS/PANDAS or simply because of OCD, finding a therapist skilled in ERP can be life-changing.

I would give anything to have known when my daughter was 13 that she had OCD.  Conventional treatment for eating disorders did nothing for her, three times, we needed to treat the OCD.

She is now 24, has a college degree, two masters, a job that she loves and is getting married in 31 days. She still has OCD but it is manageable.

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...