Anyone else with a 2 year old being diagnosed with PANDAS

[Stephanie2]

My boys started having pandas symptoms abruptly at the ages of 15 and 20 months. After several years of abx and the resultant clostridia, we have jumped ship and moved to classical homeopathy which has been a lifesaver in numerous ways for my severe pandas sons (who also had autistic features, chiari malformation, severe food allergies and asthma, constipation, you name it). They have been off all antibiotics since January and April and our lives are returning to normal.

[erinm6066]

On 10/20/2011 at 11:42 AM, airial95 said:

My son had his onset at 20 months, and was dx two months after his 2nd birthday. Your story sounds very familiar. We chalked SOOOO much up to the "terrible twos". Prior to his onset, we had a few ear infections, but nothing like what you had experienced. He had an impetigo infection (strep of the skin) that ended up being what set him off.

 

All of our blood work that has been run has always been normal (not even an elevated titre). Like you within about a week of starting abx the aggression was gone and witin about 10 days the tantrums were down to an hour or so (still long by most people's standards but we were just excited to be able to leave the house again!!!) and we saw the little boy we knew again.

 

We see Dr. Muprhy in Florida as our specialist. When we first saw her (at around 31 months old), she had said that our son was the youngest confirmed case that she had seen - with clear onset at 20 months. (She wrote a case study on him - not sure when/if it was ever published - but I edited it for accuracy for her).

 

Our son will be 4 next week, and we're still fighting the good fight. Our biggest issue has been continual infection - 8-10 strep infections (throat, skin and nasal) in less than 2 years. He's headed for T&A next month, and we're hoping that breaks our cycle. When he's on abx, we've gotten him back to about 85% each time. (I won't say 100% because PANDAS symptoms do look an awful lot like a difficult 2-4 year old sometime...so we may be at 100% but with a little bit of a bratty kid? ) At this point, we've only used abx because we've had success with them, and personally, IVIG or PEX scared us a bit with him being so young (and small - he's still only 34 lbs!). We are open to both of those options as he's gotten older, if the T&A proves not to kill our chronic infection problem. Honestly, if we were facing your history, with the C.Diff, etc...I don't think we'd be as hesitant against pulling the big guns out early.

 

The biggest tips I can give you if he is PANDAS (which he does sound like it):

 

- Try giving him ibuprofen when things are bad. Long scientific explanation short - it blocks the inflammation in the brain and helps alleviate symptoms. It has been a WONDER DRUG for us. (there are side effects - espcially with the liver, but we use it sparingly, only when we REALLY need it, or we're going somewhere that we can't risk an outburst.)

 

- Journal his progress. I've always said PANDAS in the real little ones is basically "developmentally appropriate behavior on steroids - bad steriods". I found a post on here from another parent who suggested a system for tracking symptoms. It didn't quite fit us because it was geared towards older kids, so I adapted it for my little guy and his symptoms and started an excel spreadsheet. It helped me identify things that we thought were PANDAS but turned out to just be normal kid stuff, as well as identify key patterns that were an early indicator of strep. (Early on it was biting for us, now it's bedwetting - those things almost ALWAYS led to a positive strep dx.)

 

If you'd like to PM me, I'd be happy to share my spreadsheet with you, and if you ever would like to chat with someone who has walked the definitive PANDAS road with a toddler, I'm here!

My son is 2 and just received back all his bloodwork and cunningham panel. He has elevated levels of Mycoplasma, Cocksackie, Lyme and Would you be able to send me that tracker? I just joined and am not sure how to private message  - we have not pursued any kind of treatment yet as our follow-up is on November 8th - but we are in the midst of a flare and I used your ibuprofun solution at 2am last night and finally got him relaxed, off his fixations, and down to bed. SO THANK YOU!!