DOES THIS SOUND LIKE A PANDA CASE? HELP!

[swarmie]

Thanks again for your responses! I really appreciate all of the sharing of personal accounts as well as the advice and referrals. I wanted to share with you what steps we have taken since I last communicated on this forum.

 

I have taken the advice to call a medical professional who has previously diagnosed and treated PANDAS successfully. Specifically, I called Dr. Trifiletti (Dr. T., as he likes to be called) for a phone consultation, which took place this morning (Sat.). (He responded very quickly!) I believe we are now in very good hands!!! Dr. T has ordered several blood tests to look for various infections that may have triggered PANDAS or PITAND (standard protocol for PANDAS/PITANDS, as I understand). In the meantime, he has prescribed my dd an antibiotic (Clarithromycin). He recommended a probiotic in conjunction with the antibiotic (e.g., Florastor) to avoid side effects, as well as to thwart off any ensuing nasty bugs.

 

Interestingly, I believed him to say that allergies may play a role in this somehow??? That is very interesting. Have any of you heard about allergies being associated with PANDAS/PITANDS? Any stories to tell?

 

I suspect you all know PANDAS/PITANDS quite well and are receiving good care, but if you want to know anything specific about my dd's care that may benefit you in some way, I would be happy to share.

 

S-

[emmalily]

Thanks again for your responses! I really appreciate all of the sharing of personal accounts as well as the advice and referrals. I wanted to share with you what steps we have taken since I last communicated on this forum.

 

I have taken the advice to call a medical professional who has previously diagnosed and treated PANDAS successfully. Specifically, I called Dr. Trifiletti (Dr. T., as he likes to be called) for a phone consultation, which took place this morning (Sat.). (He responded very quickly!) I believe we are now in very good hands!!! Dr. T has ordered several blood tests to look for various infections that may have triggered PANDAS or PITAND (standard protocol for PANDAS/PITANDS, as I understand). In the meantime, he has prescribed my dd an antibiotic (Clarithromycin). He recommended a probiotic in conjunction with the antibiotic (e.g., Florastor) to avoid side effects, as well as to thwart off any ensuing nasty bugs.

 

Interestingly, I believed him to say that allergies may play a role in this somehow??? That is very interesting. Have any of you heard about allergies being associated with PANDAS/PITANDS? Any stories to tell?

 

I suspect you all know PANDAS/PITANDS quite well and are receiving good care, but if you want to know anything specific about my dd's care that may benefit you in some way, I would be happy to share.

 

S-

 

As I'm sure many others will also report, I developed food and environmental allergies/intolerances at the outset of my PANDAS journey.

 

Congratulations on getting started with Dr. T!

[nicklemama]

You must have been talking to Dr T when I was trying to call and getting a busy signal this morning!!!!!!! LOL. I did talk to him after your consult. I am glad you got your consult w/ Dr T. I was in your shoes just about 40 days ago, when I emailed and left a voice mail message to Dr T, out of sheer desperation. He has turned my son's life around. Forty days ago, my DS was ticcing like crazy, throat clearing and eye blinking. He has/had many ocd's....counting, hoarding, repeating certain words, telling on himself, countless questions about God, talking about death, severe separation anxiety and more, unbelievably. The worst part for us was the anger, irritibility and rage. We lived through this for a year. For a year, I tried to get doctors to listen to me about how this came on so suddenly after a FluMist vax Oct 15, 2009. Our world turned upside down on Oct 17, 2009. That is the day he woke up sick and angry. We had no idea what was about to happen to him and us.

 

The only doctor who has ever listened is Dr T. My DS has 20 more days on biaxin, for a total of 60 days, then we are going to Zithromax prophalactally and see how he does. He's about 80% back to "normal" and its only taken 40 days.

 

We don't, at this time, know exactly what has infected our son. He's never had a throat culture or quick swab. His ASO and antiDNAse titers and mycoplasma titers came back normal, as did everything else Dr T ordered, except for ferritin, which was low. He was last sick w/ an illness in Feb 2010.

 

We are waiting on the results of the Cunningham test.

 

Cindy

Edited November 22, 2010 by nicklemama

[swarmie]

Cindy, sorry to hold up Dr. T's phone line:). I remember when I tried to call Dr. T. for the first time I bet I called at least 7 times in a row, desperate like, hoping the line would be free to talk to someone or at the very least leave a message.... (He must have only one line??)

 

Thank you for sharing with me! I wonder if we'll be in a similar situation in that the blood tests won't tell a whole lot??? It will be interesting to see how my dd does with the biacin. Dr. T. says if this is PANDAS/PITANDS, then she is probably experiencing her first episode, given the "mildness" of her behaviors. I know this is true, but when you hear your child say out of no where, "Daddy, I'm afraid Mommy is going to get a sword to kill me," and "I think it would be fun to die," and so on, it just doesn't seem mild at the time. I'm just grateful for professionals like Dr. T who can help.

 

When this all started, I felt like I had entered twilight zone, everything so surreal. Not happening. Now, because Isabelle is doing this on/off thing (bad day/normal day/emotional lability...), I feel like this thing is trying to play tricks on my mind. One day she's showing OCD behaviors as much as 13 times in 1 hour, another day she has no behaviors at all. Really bizarre and confusing. Ugh. It can really be hard being a parent sometimes. I never dreamt anything like this would ever happen. None of us did, I'm quite sure.

 

I'll pray for your family. I'm happy for you Dr. T. has helped:). I feel much better now that my dd is his patient, that's for certain.

 

Susan