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I need help and advice. My 6 year old is scheduled to see dr. B in ct 11/30 but he cant wait any longer. i have been calling to see if there are cancellations but there havent been any.

 

but tonight he started pinching the heck out of his hands. between the hand washing and the pinching they almost look bloody. He is a wreck and I refuse to let him go on like this. Its not going to happen.

 

SO I will call dr. b tomorrow and beg to be seen this week. If I have to camp out in the parking lot I will.

 

he is on cefprozil from the ent. He is scheduled for T&A in 2 weeks or so. I cant see that happening. He has no one to treat or diagnos him for PANDAS around here I have tried since feb.

 

can someone please give me some more names of docs who specialize in PANDAS? I live in Massachusetts willing to drive where ever I have to> It would be best to have a doc that takes insurance as I am super broke and I cant afford it otherwise. I need him to be seen this week. It cant wait. I will do anything.

 

can any psych meds help at this point? I have been avoiding them like the plague, but he might need them. He has hydroxizine for anxiety, which we used 2x with ZERO effect, and clonidine to sleep which is helpful.

 

 

PLEASE HELP

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Can you get some anti-inflammatories into him? Aspirin? Curcumin? I personally had great results using curcumin with my second dose of antibiotics right after I got my diagnosis.

 

Wish I had some names for you...but the doctor I see took four months for me to get into him. I can give you the info on him anyway, if you would like. He's in CT.

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thanks. Please keep the suggestions coming. I will take any names.

You can try contacting Dr. Michael Jenike at http://www.mclean.harvard.edu/about/bios/detail.php?username=mjenike He wrote this article http://www.ocfoundation.org/default.aspx?id=2279&terms=pandas , is very compassionate, and may know of someone who can see you - even if he cannot.

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I sent you a PM with some more names.

 

Someone mentioned anti-inflammatories...I'd echo that and add Advil/Ibrofin to the list she suggested.

 

Some have found a little relief with Inositol. It's basically vitamin B-6 and is supposed to help with Seratonin levels (like and SSRI). It is water soluble, so anything the body doesn't absorb will be eliminated. You can get it at whole foods (in the supplement section...Jarrow brand...I think where the liver support supplements are found). It can make you gassy, so start small. It has a very slight, sweet taste and can be put in juice or water. I can send you some article on it if you want (just email me your email address).

 

Hang in there. I remember very well those desperate days. It's one minute at a time.

 

Are you tracking symptoms using some sort of journal/chart? I suggest doing that as well, so you can see for yourself and show a doctor if there is a trend building (especially after starting treatment). All the days start to run together otherwise. I can send you a sample chart as well.

 

Kara

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I would e-mail Dr. T (e-mail address is on his website) and PUT AN URGENT FLAG ON IT. Or you could call his office, but in my experience e-mail is faster. He'll get you in as soon as he possibly can--probably today or tomorrow. And I don't think he will be offended at all if you then switch to Dr. B. Just hate that you would have to spend the money twice, but if it's an emergency, you might have to.

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I second that. Dr. T is great for emergencies and getting people started. I would contact him ASAP.

 

I would e-mail Dr. T (e-mail address is on his website) and PUT AN URGENT FLAG ON IT. Or you could call his office, but in my experience e-mail is faster. He'll get you in as soon as he possibly can--probably today or tomorrow. And I don't think he will be offended at all if you then switch to Dr. B. Just hate that you would have to spend the money twice, but if it's an emergency, you might have to.

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I would put a call and email into Dr.T. While cefprozil can be effective in treating strep, it can sometimes be ineffective with intracellular strep. In cases of intracellular strep, azithromycin (zithromax) is better. If I was in your shoes right now I would do a phone consult with Dr. T and he will most likely give you zithromax to add to the cefprozil. If it were my child I would give both cefprozil AND zithromax for at least 10 days. Try giving ibuprofen every 6-8 hours too.

 

Hang in there!

Colleen

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Ibuprofen for anti-inflammatory qualities. Cease all dyes and preservatives. Start Vite's and Omega's (we give our 5 year old Gummy Bears/Fish). Omega's can decrease tics over time. Push Omega enhanced foods (milk, eggs, etc. and fatty salmon). Can you get your Ped to start Augmentin or even better, a run of Azithromycin? I believe that the abx your kiddo is a Cephelosporin. I think (not sure) that it is a lower level abx, targeting ENT symptoms. It may not be the ticket for PANDAS - I am just speculating - I don't know this - it is certainly better than nothing! My son was on Augmentin when he was really PANDAS affected last year and we gave him a run of Azith right along with it.

We go to Dr. B. He is great but unfortunately ovwewhelmed with so many of us with PANDAS kiddos. Keep trying - they do get cancellations occasionally. Call them every day and stress your urgency but try not to lose it with the front desk ladies. They are good eggs but tough, out of necessity!

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