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What now? Here is my story....


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So, I have a 9 y/o who started showing OCD symptoms over winter break. Constant handwashing, asking us if she needed to wash her hands, intrusive "bad thoughts". She was asking about 25-30 times a day but I didn't really catch on until a little over a week ago because she was spreading it out between family members. side not: Her brother has had strep almost constantly since October.

 

I did a seach over a week ago on OCD and she fits it to a tee. I spoke with a child psycologist and they thought it sounded like OCD to them and that she should be seen. Then I took my son in for his recheck for strep and sure enough it was positive again. The Dr. suggested that we get the whole family tested to see if there is a carrier in the house. I also talked to the Dr. about my daughters OCD symptoms and she felt that we should be seen by a Psychiatrist ASAP because of the sudden onset.

 

I left the Dr. and as I was driving home one of the articles about OCD popped into my head and I remembered that they mentioned something about strep so I ran home and did a search and read about PANDAS. I got my other kids in including the one with OCD symptoms and got them tested for Strep and the rapid came back negative so I figured that I needed to go ahead and get something set up with Psych for my daughter. Right before I made the call(two days later) I got a call from the pediatrician that the slow growing strep came back positive on my child with OCD symptoms!!!

 

She has been on antibiotics since Friday and seems SO much calmer today. She has asked to wash her hands a total of 3 times yesterday and once so far today. HUGE improvement. Is this normal to have this quick of a turn around? Does this sound like true PANDAS? Do I still need to go to a Psychiatrist or do I find someone that knows about PANDAS? If that is the case WHO????

 

This has been so hard to go through for the past few weeks. Her hands were raw and bleeding and you could see that she was hurting inside. I want to do whatever I can to avoid this again!! I know it might be too early to tell.....but it sure seems coincidental.

 

Oh, and I had called a friend about the OCD and asked for a referal to her daughters Psychologist and she ended up sending me an article about PANDAS. I had never even heard about it before and now all this information seems to be falling in my lap!

 

ANY help or suggestions would be appreciated!! We are in Colorado so any Dr. suggestions here would be great too!

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Consider yourself lucky that found PANDAS so quickly. :) Many of us don't find it until months/years later (tho' all the while talking to our doctors about issues without PANDAS ever being mentioned to us). It could be that if you review PANDAS symptoms and consider past illnesses that you'll make other connections. Or if she was spreading out the OCD, there may be other current symptoms that she's been hiding. I'm in KY, so I can't help with specific doctors, but I would advise you to see someone familiar with PANDAS. The experts are all to the east of you, but it looks like you're going to get some good local referrals. Your doctor probably did a 10-day course of abx for the acute infection & think that will be fine. While it seems you're getting good suppor there (strep re-check, dr mentioned checking for a carrier), MANY (if not MOST) of our kids need much more than just 10-days. As you do more research you'll find there is no cure but some treatments do seem to keep it at bay...it's good that you're seeing positive results with meds. Get the book Saving Sammy/Beth Maloney. Visit the PANDAS web sites. And hold on. It seems that you caught it early, but some of us do find that subsequent exacerbations get worse. And kids can react to exposure sometimes, so their tests will be negative but symptoms will be off the chart.

 

Good luck on this journey. This forum is a great sounding board and provides many shoulders for leaning.

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Thank you! Still watching and waiting but really shocked to see such a quick turnaround. I have no idea if that is normal or not. My husband did talk to her a little about the handwashing but I don't think that is what changed it? She just seems calmer. Has anyone had a kiddo turn around this fast? She is still doing a few things out of charachter but a huge improvement!

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Thank you! Still watching and waiting but really shocked to see such a quick turnaround. I have no idea if that is normal or not. My husband did talk to her a little about the handwashing but I don't think that is what changed it? She just seems calmer. Has anyone had a kiddo turn around this fast? She is still doing a few things out of charachter but a huge improvement!

 

Yes! Our DS also had significant contamination OCD, and his handwashing was out of control. Within 48 hours of starting the antibiotic, he had calmed down immensely overall, and his contamination concerns essentially disappeared! No more handwashing, no more obsessing over sticky fingers, etc.

 

Congrats to you for acting so quickly! Don't be surprised if the improvements don't continue to come at this fast rate, or even if she stumbles backward briefly now and again as she continues to improve overall, but cheer the improvements and enjoy!

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Has anyone had a kiddo turn around this fast?

 

 

yes, my ds did turn around quickly when we got him on the right abx. he was on azith for 5 days and had a horrible time. we switched peds, put him on 30 days of keflex and in about 3 days he had 100% remission. so, yes, i believe it can happen that quickly.

 

i don't want to discourage you -- only hoping to help with my experience -- i'd like to caution you to have cautious optimism. the results can happen quickly, but there can also be relapses. like i said, my ds had 100% remission. then, about 30 days after the end of the abx, he backslide. i was completely devastated and totally unprepared to deal with that -- i thought he was cured. i didn't know about this forum and this was about 2 years ago -- which seems light years ago in terms of info and what's out with support/info/organizations now. (i can't imagine those that were here 5 years ago!)

 

i'd suggest you research and learn what you can, make plans B and C just in case you need them. hopefully, you won't. i do believe there have many more than a few cases of quickly catching things and having good success with abx. however, you'll just be prepared.

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Wow! You were on that so fast! Congratulations! It is common to see very fast dramatic improvement with the right antibiotic. It is the more chronic, or late cases that are more drawn out. So glad you are seeing such improvement. My son is also a very fast responder to antibiotics. I think where these kids get in trouble is with incomplete treatment by uneducated pediatricians. For these kids, they need to stay on antibiotics until they show they are clear of colonization by culture and/or strep titers.

 

 

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I have to say that the only reason I even looked at PANDAS was because of the article I read on Kids health happened to mention a very small chance of this being a possibility(I need to write them a note of thanks!). Then when I looked it up there were all of the most recent studies from October and December 2010(I think. Without finding these things my daughter would be on medication for OCD right now and not being treated for the strep. I am going to follow up with my pediatrician and see if she followed up with the article I passed on to her. If she did and if she is willing to find out more I will work with her, otherwise I will need to move on and find someone who either has experience(thank you Elizabeth for the names!!) or is willing to learn. Thank you ALL!!!

 

It was really helpful to hear from others that have been through a similar course of symptoms and recovery. I gives me an idea of how to handle this moving forward.

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Yes, I'd say your angels were guiding you. I would print out all the helpful threads pinned here, buy 2 copies of Saving Sammy and give one to your doctor before this rx runs out and request a longer dose, at least double, and in my opinion, ideally a month. Then go from there to consider/research prophylactic dose if she is back to 100%. If she is on amox know that there is a high failure rate with it. Augmentin and omnicef have better clinical records. Do your best to get enough for your other child to clear him as well. I would check both of their titers. ASO & Antidnase b.

 

She has textbook PANDAS with the proven strep.

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I just wanted to post a welcome to the forum. For some, the faster you realize there is an infection after onset, the more optimistic of a faster and full recovery. Along the way, you may see some bumps in the road. It does become hard to determine what is part of recovery and what is a signal that the infection wasn't cleared or she is sick again. Trust your Mommy gut. Here are some useful links to read if you you haven't done so already. I also suggest keeping a journal or a charting system of her symptoms. It helps a lot.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

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Hi there. I'm relatively new to the forum as well. We diagnosed about 2 weeks (at least I think) after my DS4 major episode. He displayed mild OCD symptoms but could have been interpreted as just strange toddler behaviors (he wanted all the lights off in the house but ONLY when a movie was on; he was afraid of going in the bathroom but everywhere else in the house he was fine) Anways, the symptom that caught our attention was a tic where he was constantly touching his head. He tested positive for strep, put on antibiotics for 10 days. He had 99% improvement! I thought it was over. We lowered the antibiotic dose. Within a week, PANDAS was back stronger than previiusly. I'm not mentioning this to scare you. BUT, it became apparent that a short term antiobiotic was not an end to the disease. The symptoms seemed gone but PANDAS lingered. His brain was still inflammed. So, for this reason I personally would strongly suggest a PANDAS doc as well, who is likely to keep him on a treatment plan until his body/brain has healed completely. Hope that rambling made some sense! That said, 2 months into antibiots, my DS4 is now showing a steadier sign of improvement.

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I sent my pediatrician the NIH article and then called her today to tell her that my daughter is doing significantly better. She said she does not believe my daughter has PANDAS. Her reasoning...

 

1. No Choreiform movements.

2. she would not be reacting so well to the antibiotics if it was PANDAS

3. she said since it has been going on so long? I had explained to her that my daughter has gone through phases before where she was obsessed with something. I know it was not everyday but rather I can now remember back(a year or two ago) that she my have had periods where other things may have been going on. I have no idea if it was tied to illness or not.

 

She said too that even if she did have PANDAS we would send her to a neurologist and get her treated with the same medication that they use on kiddos with OCD.

 

I am not denying that there is a possibility that my daughter truly has OCD but I still feel like this looks suspiciously like PANDAS. So, now I am doubting myself and my assumptions. Could use your help here to give me that nudge in the right direction. I am not a Dr. and don't want to act like I am. My Dr. said that there are pediatricians that still do not believe in PANDAS but that was not how she felt. Anyways.....support would be great right about now!

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Quote: "2. she would not be reacting so well to the antibiotics if it was PANDAS"

 

Hi and welcome! NonPANDAS OCD does not respond to antibiotics last I heard, but I'm no expert. And I don't think choreiform movements have to be present to get a PANDAS diagnosis...but strep? Yes!

As for the extended period of OCD symptoms...can you remember sore throats, ear aches which may have coincided more or less?

 

This is such a new condition and the people on this forum are at the front lines of the battle against it...so you are in a good place. Even those doctors who have heard of PANDAS may be following very conservative advice. Hopefully that will change soon. I am glad your doctor is open to the idea of PANDAS...Perhaps she could be convinced to a consult with one of the PANDAS experts? If you haven't already, go through the pinned threads at the top of this forum...lots of good stuff there, including the academic studies which you could send to your doctor. My Edit is to say: It's frustrating but we may well find ourselves having to educate our doctors on this, and when they don't move ground then we have to move on to one who gets it.

 

As for the doubt...I think that comes with the territory. I doubt myself the whole time and that's why this forum helps!

Good luck!

Edited by Ozimum
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My advice...go to a different doc. Most of us have traveled to one of the PANDAS docs out East. (I am from PA...we see Latimer in Maryland/DC area). My older son had a very rapid remission of his PANDAS within 48 hours of antibiotics. It is almost 4 years later and he has currently been symptom free since June.(many bumps along the way) He has never backslid to the place he was when he presented...however, he has been kept on proph. antibiotics since onset. PANDAS does come back with a vengance (many times getting worse and worse) with each strep infection...so, avoiding strep is a must. Also, you may start to find your child reacting with PANDAS symptoms with any illness and immune challenge, (allergies, vaccines, colds, flu, etc)...although the episodes are usually not as severe as with strep. This seems to have been cought early.....your child is responding rapidly to antibiotics...you have the opportunity to keep this controlled without (hopefully) having to go onto more agressive treatments. I am no doc...but, I have two PANDAS kids. This sounds like a PANDAS case to me......don't miss this opportunity....go to a PANDAS doc. (not one who claims to know about PANDAS because usually they don't really know...go to one of the specialists if at all possible)

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I sent my pediatrician the NIH article and then called her today to tell her that my daughter is doing significantly better. She said she does not believe my daughter has PANDAS. Her reasoning...

 

1. No Choreiform movements.

2. she would not be reacting so well to the antibiotics if it was PANDAS

3. she said since it has been going on so long? I had explained to her that my daughter has gone through phases before where she was obsessed with something. I know it was not everyday but rather I can now remember back(a year or two ago) that she my have had periods where other things may have been going on. I have no idea if it was tied to illness or not.

 

She said too that even if she did have PANDAS we would send her to a neurologist and get her treated with the same medication that they use on kiddos with OCD.

 

I am not denying that there is a possibility that my daughter truly has OCD but I still feel like this looks suspiciously like PANDAS. So, now I am doubting myself and my assumptions. Could use your help here to give me that nudge in the right direction. I am not a Dr. and don't want to act like I am. My Dr. said that there are pediatricians that still do not believe in PANDAS but that was not how she felt. Anyways.....support would be great right about now!

 

 

I understand the doubting. You are so new to all of this information. Your doctor has no experience with this. I believe yours is a case of classic pandas. Did you buy the Saving Sammy book?

 

What I would do if I were you, post here where you are, ask for doctors who have experience in your area. You can do phone consults with many if not all of the pandas docs. Dr. Trifilleti in NJ is a good one to work with on the phone. He can work with you or with your doctor. Google him for his website. I would suggest a longer trial of antibiotics, trying if you can to not have a period of time in between. You can get some testing done like titers, other infections etc. while on the longer dose, giving you time to make decisions. You may want to seriously consider prophylactic antibiotics when she is back to 100% or close to it. Make the call tomorrow so you can get the ball rolling. you may just need to get a new doctor soon unless she is willing to consult and listen to a pandas doc. And in time, do consider blood work for other infections to rule things out.

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