[Symptoms returning while on prophylactic abx]

Thank you all for the answers. My youngest DD has been sick with a nasty cold, so maybe that could be contributing? Also, he does have a loose tooth right now, I did not realize that that could cause a flare up. I have Saving Sammy, but have not read it all the way through yet. One of my obstacles is, although we have a ped that is working with us, he does not know much about PANDAS, I have sent most of the information to him through email. We have done Augmentin before with not much improvement. Cephalaxin has worked well for him, but the dr did not want to do that for prophylaxis. Isaiah had his tonsils removed in 2010 (before his PANDAS diagnosis), he has not had a positive throat culture since before they were removed. I am interested to see if his ASO titers have gone up since the last time (they were 681 the last time they were taken.) The dr. said that if they have gone up we will up his dose for a bit.

 

Thank you all for the responses. I appreciate them so very much!

Tiffany

[Symptoms returning while on prophylactic abx]

I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose at this time. I just want to make sure I'm not missing anything. I also am interested in possibly starting some natural path options; vitamins, diet changes, ect. Any thoughts would be greatly appreciated!

 

Thank you

Tiffany

[Symptoms returning while on prophylactic abx]

I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose at this time. I just want to make sure I'm not missing anything. I also am interested in possibly starting some natural path options; vitamins, diet changes, ect. Any thoughts would be greatly appreciated!

 

Thank you

Tiffany

[Next stop in the road...infectious disease]

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!

[Next stop in the road...infectious disease]

I agree!! And he was a jerk at first, but then was better toward the end of the appt. But after seeing this email I won't be returning to him!!

[Next stop in the road...infectious disease]

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.

[Next stop in the road...infectious disease]

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!

[Next stop in the road...infectious disease]

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

[Scared...IVIG recommended]

Thank you all so much for you thoughts and opinions. I truely appreciate it! I decided to go with my gut on this one and try antibiotics first. He's only ever been on Cephalaxin for 2 weeks since being diagnosed. So I asked for Augmentin and he is doing a month long course, THEN we will check his titers again and see if it helped the strep infection. If need be we will do IVIG at that time. He's never had any other testing besides ASO titer, CBC and CMP. I keep asking if they need to check anything else, but they say no, if anyone can tell me if there is anything that I should really push for I would appreciate it! Thank you all again, your support means so much to me! Also, he got a referral to Dr. Ferri at Seattle Children Hospital, wondering if we should still make that appt for their first opening in Nov? Again, thank you all so much!

[Scared...IVIG recommended]

I should add, that they've not done any other "testing." Just ASO titers, CBC and kidney function.

[Scared...IVIG recommended]

My son Isaiah just got diagnosed with PANDAS in May. His pedi does not know much about it, but is willing to learn from the information I send to him and such. Isaiah had his first strep infection in Sept. 2009, he then had strep 6 or 7 times in a 7 month period and scarlet fever once. His tonsils were removed in June of 2010 and symptoms worsened, however, we didn't know that it was PANDAS at the time. He has anxiety, OCD, he is very emotional, has started developing a dry cough/clearing of the throat (vocal tic?!) and some aggression. Since May he has had 2 rounds of Cephalaxin for 2 weeks each time, however his ASO titer is still very elevated, 580, 361, 552. They have not done much other blood work besides that. We saw a pediatric neurologist today and he is recommending IVIG. He stated that we could also try an abx for a month, but that it seems Isaiah has a strep that has been very resistant for awhile. I've always thought of IVIG being a "last resort" type of thing and it terrifies me. Isaiah is 5 1/2 years old and getting ready to start kindergarten next week. Does anyone have any advice on this treatment? Is it too soon, or is it worth a shot? ANY advice would be greatly appreciated right now as I am truely unsure what to do. Thank you so very much!

Tiffany

[Soooo frustrated with my mother in law!]

Thank you all for your replies, you all mean so much to me already! I called to cancel the appt that I had with that dr. and the receptionist stated that the dr. would like to speak with me on the phone regarding my son and PANDAS. I spoke on the phone with him today and am considering seeing him, he focuses on detoxifying and natural remedies, which I think would be a good route, just financially it is hard to swallow, since I know we can find dr's that take insurance....but then do I have to get referrals, travel, ect?! I am considering rescheduling the appt. since he did say that he would work out a payment plan with me (when I spoke to his receptionist, she said we would have to pay upfront every time $300-600). I do know that my MIL is concerned and cares, it was just very hurtful the way she came across. I will do everything in my power to get my son "well" but I have to decide what that is, and if we can financially afford one dr over another.

 

Wendy- My in laws live in Sacramento (Carmichael), I believe their dr. friend they spoke with is in the bay area. We live in Spokane, WA and that is where the dr. they recomended to me is from (Dr. Mundall). I will ask the name of the dr. down there the next time I speak to her. I believe his first name is Randy and his wife is a physician as well.

 

Tiffany

[Soooo frustrated with my mother in law!]

So since I've been looking for "the next step" for Isaiah, my in laws have decided to partake in the search for a doctor. They spoke with some friends in their church and a dr here in town came highly recommended (my in laws are in California, we are in Washington state). So I decided to call this dr. and schedule an appt., during the conversation with the receptionist (whom had never heard of PANDAS) she informs me they don't take insurance (of any kind) and that $300-600 would be required up front for the first visit. We are unable to do that at this time, so I've decided to continue my search, as I have been given some names of other doctors that DO take insurance. So in the meantime, my in laws have been texting my husband and I, and at one point said that we need to figure out our priorities. Well tonight my MIL called me and was telling me that we need to take out some credit cards if that is what it takes, and that "other" things (like cars and such) shouldn't matter, since this is my son's life. What the heck??? I've NEVER said anything like that did matter more, of course my son is my first priority, BUT I am not going to drop $300-600 on the FIRST doctor that was recommended to me, without doing some research, which I am actively doing EVERYDAY. She then went on to tell me how I need to take him to this dr because he is more natural and detoxifies the body, and if I plan on putting him on ABX for long term I am basically poisioning him. Needless to say, we got into a bit of an argument, because I could not let this one go. This is MY child, and he is MY first priority, but she needs to let ME raise him!!! Ugh. I am just so frustrated right now. Thank you for letting me vent!!!

[Is the OCD everywhere?]

Thank you for posting this! I needed a laugh today!

[More confused after the dr. appt]

Hello!!! Quick update on Isaiah, he is doing very well since his round of ABX, however after the past couple of days I have noticed some of his behaviors returning, they appear to be more mild, but I am seeing them. We saw the pediatrician Tuesday for a follow up since his diagnosis and being on ABX. I was hoping for some more answers at that appt, but did not get any. The dr. told me that we will just wait for symptoms to return, and he would test for strep (he believes it is only strep that causes relapses) then IF he is positive for strep, he can treat with ABX again, if this continues to happen (which it will, I am assuming with PANDAS) then he could refer us to Infectious Disease. However at this time, there is nothing more that we need to do. I was also under the impression that he would want to recheck his ASO titers, since the only one that was done was with his last infection and was very elevated, I thought getting a "baseline" might be good. I suppose if I pushed for it he would've ordered it, but I wasn't sure what to do, I was in shock, he told me that I know more about PANDAS than he does, which I appreciate the honesty, but frankly it scares the crap out of me. I am lost...I don't know where to go or what to do? Is it normal to just lay idle until another episode hits? He said he would be willing to refer us to Seattle to some specialists down the road if I would like. Should I ask for that now? Should I be asking for certain testing, dr's, ect?? Any help would be appreciated. I just hate to wait until it happens again. Thank you so much.

 

Tiffany

[1st dr. appt after initial diagnosis]

Anyone?? His appt. is tomorrow (Tues) and I am hoping to go "somewhat" ready as far as what to ask for/expect. If anyone has any advice I would greatly appreciate it. Thank you!

 

Tiffany

[success stories...is it possible to post a link at top]

I think this is a good idea! Being new here myself, I feel completely overwhelmed sometimes with all the information I am trying to find out and digest! Sometimes I just look for other "stories" to see what I could be in for, what others like us are dealing with, and ideas of what to do if we run into certain situations! This group has been fantastic and I think a thread such as one for success stories would be wonderful!

 

Tiffany

[1st dr. appt after initial diagnosis]

Hello all! So Isaiah has his first doctors appt coming up in about a week and a half. This will be the first time we've seen the dr. since the initial diagnosis a couple of weeks ago. Is there anything we should expect or ask for? Our ped. is brand new to this and has asked for me to bring in information that I have found regarding PANDAS, so that makes me a bit nervous, however I am happy he is willing to work with us and treat Isaiah. But since both he and I are new to this, I thought I may turn to you experts to see if there were things I need to be asking for (certain blood tests, referrals to specialist, family testing for carriers, long term abx, ect.). As of tomorrow Isaiah will have been on his abx for 2 weeks, and is doing very well! Our ped did call in a new prescription for us to continue while we are on vacation (we leave in the morning for 9 days) so that Isaiah can "hopefully" enjoy himself. Some of his biggest anxieties have been airplanes and 'carnival' rides, we are flying to southern California (from Washington state) and visiting theme parks including Disneyland,so that makes ME nervous, however he is doing well this week and does not seem as nervous, the abx have helped with many of his symptoms thankfully! Although today his symptoms were more noticable, which I am sure has to do with the trip. If anyone can offer me and advice/insight I would greatly appreciate it! I will hopefully have wireless at our hotel to check and respond this weekend/week! Thank you all again for welcoming me into this group, I don't know where I'd be without it and all of you!!

Tiffany

[Normal for symptoms to come and go on ABX?]

Thank you all SO much!! I think charting is definately my best bet, I just wasn't sure how to do it, but Bill's example makes sense as to having different catergories and assigning numbers. Today has been another rough day unfortunately. Hopefully we can be on the upswing again soon. It makes sense the "saw-tooth" pattern that Nancy explained, and although I would love for him to be back to 100% I know it will take time, this has been going on for a long time, I can't expect immediate results as much as I would like them!!! Thank you all though, this has made me realize that this is something that happens sometimes, and that we are still on the right track.

 

airial95- You sent me a spreadsheet?? I looked through my email (tiffnsonny@hotmail.com) but did not find anything? Would you be willing to resend it? It sounds like it would help me greatly!

 

Thank you all again, I am so thankful to have found you all!

[Normal for symptoms to come and go on ABX?]

Sorry for the double post. My computer is acting up, and I don't know how to delete it.

[Normal for symptoms to come and go on ABX?]

Hello!! As you all know I am very new to the PANDAS world. Isaiah was started on Cephalexin 500mg twice a day this past weekend, I started seeing a change in him a couple of days ago and was very optimistic that it was working and he was getting back to his "normal" self, however yesterday was a rough day, his symptoms returned almost completely. I was just wondering if it is normal for that to happen while on ABX, or does that mean that this ABX might not be working for him? It is too early to tell today how he will be, so far this morning we haven't had any episodes of crying, anxiety, ect, so I am hopeful. Again, sorry if this is a silly question, I'm just confused! Thank you so much!

 

Tiffany

[could i possibly read a fiction book?]

This post makes me smile, I am going through the same thing! I am part of book club and had been looking forward to reading our books each month, and meeting with girlfriends to have dinner and talk (about the book and other things), however as this months book sits on my counter, all I can think about it reading more about PANDAS and when the book Saving Sammy: The boy who caught OCD will show up in my mailbox! Maybe someday I will get to my thoughtless fun fiction books again! ;o)

[New to PANDAS...need insight, help, support]

The support that I feel from this group already, amazes me! Thank you so much!! This is just what I need right now!! PANDAS is consuming my every thought...it is all I want to talk about, read about, think about...and no one quite understands like you ladies!! I appreciate you opening your arms and welcoming me and Isaiah into your community, and I look forward to getting to know you all better!

 

I will for sure be calling the dr. to see about continuing the ABX, or making sure we can get a RX while in California (great idea). And the ibuprofen tip is great!! I always try and keep some on hand anyhow, in case any one of the kids gets a fever or something!!!

 

I'm trying not to be too optimistic....but Isaiah's "goodbye" to my oldest son this morning when he went to school was much shorter than usual, and produced no tears! I am hopeful!!

 

Thank you all again, I appreciate it so very much!

[New to PANDAS...need insight, help, support]

Tiffany,

Sounds like you're on the right path and with a ped that actually thinks so too is great! Just read all you can about PANDAS, see if there's any improvement with the antibiotics, try some ibuprofen, see if it helps, then take it from there. My ds 8 is also on cefalexin, he started twice a day, after a few months we lowered to three times a week prophylaxis and when PANDAS flares goes back to twice/day. You may see a gradual, slow improvement over several months (as in my son's case) or if not, then you can explore IVIG as an option, but you've made the right start! Good luck.

 

Thank you!

 

THANK YOU SOOOO MUCH!!! I am so overwhelmed with all of this, it means alot that you would take the time to read my story and comment! I will definately keep reading and keep you all posted on this round of antibiotics! I hope they work, we leave the day he finishes his antiobiotics for a plane ride (nervous) to California, including a trip to Disneyland. I am hoping that the antibiotics will work for him and hold him through our trip regarding his anxiety!

If the antibiotics are working when you leave for disney, you may want to ask the doc for a few more days of ABX. In my experience, doctors do not want their patients to have a relapse when out of town, so the doc may be willing to extend it a few days to be safe.

 

I was wondering if I should maybe do that! I will see how it goes this week with the ABX, then maybe I will call and ask. Especially since he wanted to see Isaiah back in 2-3 weeks, but that is right during our vacation, so I couldn't get him in until after. Thank you!

[New to PANDAS...need insight, help, support]

THANK YOU SOOOO MUCH!!! I am so overwhelmed with all of this, it means alot that you would take the time to read my story and comment! I will definately keep reading and keep you all posted on this round of antibiotics! I hope they work, we leave the day he finishes his antiobiotics for a plane ride (nervous) to California, including a trip to Disneyland. I am hoping that the antibiotics will work for him and hold him through our trip regarding his anxiety!