feedback needed please! Not sure of son's diagnosis

[cynditk]

Hi all,

Just want some feedback here to see if we are on the right track. According to DR.K's criteria we fit for PANDAS/PITAND, but I don't know, my son presents so atypically. He is 16, and also has an immune deficiency. Back in March he had overnight onset of severe anxiety- he withdrew to his room and wouldn't come out, and was so anxious he couldn't even talk to us at times. He stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. He did not go outside for several months except to go to DR's visits. We suspected PANDAS mainly because of overnight presentation. He has had some mild OCD like always wanting doors closed. No real tics, no real rituals, compulsions. We started him on Zithromax daily and gradually all his symptoms began to fade. We are 3 months out-up to 1000mg daily zithromax- and he is acting mostly normal again- he still gets anxious now but is not consumed by anxiety, and is slowly starting to venture out into the world again. Beth Maloney said she didn't think the Zith was actually treating pandas and suggested Augmentan. This week we tried IM penicillin and took him off zith- after three days he has begun to go downhill and experience anxiety again. He also suffers from a wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation. Unfortunately we cannot test accurately for a bunch of stuff because he's on IVIG for immune deficiency, but I am thinking maybe we are barking up the wrong tree and maybe he has mycoplasma and Lyme, and not PANDAS?

[bulldog24]

my first reaction was Lyme and or bartonella. But I am a little biased as a Lyme patient.

 

The MAIN reason I was thinking Lyme was because your son feels worse on the penicillin shots. That is a normal reaction when you treat lyme. Its called a herx reaction.

 

It certainly wouldnt hurt to test him for Lyme and coinfections (with the right tests)

[kimballot]

Cyndilynn-

 

It is certainly possible that your son has lyme or a co infection. It is also possible that this is PANDAS (PITAND) from some other infection. PITAND is Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder. Many kids with PANDAS go on to have exacerbations with any infection - not just strep. This can include lyme, mycoplasma, and sinusitis.

 

What is your son's immune deficiency and how long has he had it? How long has he been receiving IVIG and what is the dosage?

 

Beth Maloney is great and I know Sammy did well with augmentin, but I would argue that Azith certainly can treat PANDAS (actually PITAND)- in fact, azith is better for intracellular infections such as mycoplasma and some lyme coinfections. Azith is also better for some strep that is able to go intracellular. I think the changes you saw may be more from the lack of azith than a herx from the IM penicillin.

 

The problems with constipation may also be due to gut issues from the azith. Are you using probiotics as well?

 

Have you considered seeing a lyme doctor? They seem to know quite a bit about infections in general and may be able to make some suggestions about antibiotics that could help your son whether he has lyme or some other type of infection.

[MaxParkersMom]

My son to this day is up in the air diagnosis wise. My Ped says Pandas with ADHD, my neuro says strange tick disorder that responds to Azith. The point is I had to get past all this and just push for what I knew was helping him. If you don't get an affirmative diagnosis then just push for what your parental instincts tell you. Do what's good for him. If I hadn't fought so hard and finally told them to get over trying to put a label I never would have gotten help. Now this is just us, but do what you need to do and get him better. We all need vacations as hard as we have to fight doctors about this. My dream is they will get past all this one day and just treat our kids. It sounds like at least your doctors are working with you which is wonderful. IT took us awhile.