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Next stop in the road...infectious disease


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Hi all!! I haven't been very active lately, the holidays were so busy at my house!! Isaiah is doing well at the moment, we just finished a 2 week course of Cephalaxin and that has DEFINITELY helped SO much!! I have my little boy back during parts of the day! :) He was able to enjoy Christmas and his birthday ( <-- which is on Christmas day), which was awesome! We are traveling across the state to Seattle on Thursday to see Infectious Disease at Seattle Childrens Hospital, wondering if anyone can let me know what to expect, or questions to ask?? Isaiahs ASO titers aren't coming down, in fact after a month of Augmentin they were higher than before antibiotics, so they are wanting to figure out where the strep is, I think?! But since this is such a big trip I want the make the most of it! We traveled over there in Nov and saw neurology and we have plans to do IVIG after "flu season", but in the meantime we are hoping infectious disease can be of some help! Any tips would be greatly appreciated! :)

 

Thank you!

Tiffany

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Hi Tiffany --

 

Good luck with the Infectious Disease doctors! Do you already know whether or not they accept PANDAS as a viable diagnosis? I just know that locally (Chicago), our children's hospitals preimenent infectious disease expert is a vociferous PANDAS nay-sayer, so I think, in the future, I would always be sure to ask questions of the doctor/department before making the trip, expecting help, you know?

 

Assuming they are willing to consider, if not full-out accept, a PANDAS diagnosis, I think I might ask about having an ENT assessment; I guess the sinuses is one place that strep can "hide," if you will, and I'm pretty sure that's where my DS's long-term issues emanated from, though we never had an MRI or anything to confirm it. I know some kids here on the forum have, though. Another "place" to look for strep might be the gut, as well.

 

So, depending upon your DS's medical symptoms, maybe ask for some guidance in one of those directions? So if he's prone to upper respiratory issues, maybe an ENT, or if he tends to have gastric problems, maybe go that route.

 

Good luck!

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Hi - we saw inf disease at Seattle Children's when our dd first got her diagnosis. We had a sudden, overnight onset, a textbook presentation and a history of anecdotal strep but only had a "beta hemo strep not specified" swab result. We didn't get the help or reception I was expecting. I thought we had a solid dx and were just going there in order to get help in finding the strep and working out which abx to use for treatment and prophylaxis.

 

I'm afraid, I felt dismissed, felt as if they saw me as a'munchausen by proxy" kind of mother and very disappointed that we didn't get the help we needed.

 

We didn't even get to see the dr until the very last after we had been seen by a junior dr and a trainee who then went away and talked with the team. By the time we saw the dr, the team had made their decisions and the dr came to tell us it wasn't PANDAS and we had better look elsewhere in terms of help eg psychiatrist. They weren't outright rude, just super dismissive and I had no opportunity to argue/question. Now, or with better prep, I would've presented ourselves better and worked the situation to get something positive out of it....

 

This was nearly 4 years ago and the PANDAS world has moved on since then. If I were going back there now, I would find out the hospital's stance on PANDAS and the particular viewpoint of the dr first.

 

The attitude may be totally different these days.

 

I don't want to put you off, just want to recount our time there as it could've been a totally different experience for us had I known in advance what to possibly expect.

 

Hope it goes well and that they are more receptive these days...

Edited by dut
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Thank you both! We saw neurology in November, at that time the dr. called the infectious disease dr. that was on call and explained our "case." I don't believe they were 100% convinced of PANDAS, however they were concerned with his strep levels and said it would be a good idea for him to be seen. We saw inf. disease here in Spokane, and although he "believed" in PANDAS he said he did not know enough to feel comfortable treating my son.

 

I appreciate you being upfront with me about your experience at Seattle Childrens. I feel like I can go in with open eyes and be better prepared if they try and dismiss his diagnoses.

 

My son does get a lot of upper respiratory infections, more than the average child, so I will definitely keep sinuses in mind. I have been thinking of asking if an MRI might be beneficial. I'm also hoping to find out if they can culture the strep through a blood test to find out if his strain is resistant to certain antibiotics, as we have had no luck getting his #'s down. I'm not sure if that is possible, but figured it doesn't hurt to ask. I am really hoping that this won't be a waste of our time, money and energy.

 

Any other insight, what to expect, ect would be greatly appreciated!

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Unfortunately, my contact with Children's neurology makes it appear that they have not changed their outlook on PANDAS. Here is an email I received from a Dr at Seattle Children's this past summer.

 

I do not subscribe to the PANDAS theory. PANDAS is very specifically described. Most people who think their child has a=it are grasping for straws. I have no special treatments to offer. I have no idea why I am on that quack web site.

 

Dr. Ferri

 

I found this Dr's name one of the PANDAS websites. I believe he has since been removed.

 

My son also had classic PANS symptoms with sudden onset. We are being treated elsewhere with great success, he has Mycoplasm pneumonia. Don't be discouraged if they are not receptive, and hopefully you run into a progressive Doctor.

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Wow, I am shocked! We saw Dr. Ferri in November and he is the one that referred us to Infectious Disease and agreed that IVIG would be a good option, it will be done by our neurologist here in Spokane that does support PANDAS. Dr. Ferri wasn't 100% convinced I don't feel like, but he wasn't dismissive either. Your email from Dr. Ferri honestly made my jaw drop. Thank you for sharing that. I am hopeful that our appt. with infectious disease will provide some positive results, however if not...I won't give up! :) I'll keep you guys posted on how our experience is.

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All, I agree that for us ID was a waste of time and money, which I am refusing to pay at this point. We have abandoned the normal medical route about getting ID and neurology on board and not really treat whatever has been going on. Too much rime and money to keep on that route.

Our girls were both diagnosed with Pandas/pans. And pyroluria at an integrativeauto ped. We are doing a cocktail of various vitamins and abx for the dd that has been battling longer. Whatever you choose as a path to recovery that is best for you and you are comfortable with then follow your gut. I just think the medical community is slow to be educated and your living it and you are your chimes best advocate. Just thought I would throw my two cents in. Hope it helps. Good luck and God bless!!!!

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Thank you all so much for your replies. After reading your posts on this thread I went into Infectious Disease in Seattle with the mind set of: "They aren't going to "believe" me, their going to blow me off and tell me PANDAS doesn't exist." I was ready! Imagine my surprise when none of that happened!!! They LISTENED to me, they asked me questions....the said "Isaiah's symptoms fit the diagnoses of PANDAS!!" This was a huge step in the right direction for me!! We now have a pediatrician, neurologist AND ID on board with us, and working to find the best treatment for Isaiah! I feel so blessed!! I know there is not clear cut treatment and we still have a long road ahead, but I feel like we're at least on the right road! :) They did a throat culture and some lab work yesterday, depending on those results we will then decide which antibiotic will be best to try prophalactic treatment! I just wanted to let you all know, I 'think' some of the dr's at Seattle Childrens *might* be starting to get it!! My fingers are crossed! :)

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