Daughter just diagnosed with PANDAS - HELP, please

[kayleesmom]

Hello,

I just came back today from a meeting with a child pshchologist who thinks my 4 year old has PANDAS. I have never heard of this before and I have so many questions. She deveolped mild/moderate OCD symptoms one day (sudden onset, I could name you the day). The psyc. asked me today if she had had strep. I told her no, but it's funny that she mentioned that because she had complained of a sore thoat off and on for about 4 weeks (same time as the symptoms started). She had no other symtoms and the peditrician tested her for step a few weeks ago and it was negative so they told me it was allergies. At that time she also had tiny bumps (few) on her chest and tummy. The psyc called the dr and prescribed her a round of antibiotics and said that it would take care of the OCD symptoms. I was so excited to hear the, but when I got to my computer and started researching PANDAS it doesn't sound like it will be that easy. Do the symptoms go away after treatment of a round of antibiotics? Do they come back if she gets strep in the future? Does this OCD cause permanent damage, and will she have disorders int he furture? Please give me all the info you can on this because I don't know much about it. ALSO, how could she have ahd strep with no other symptoms, acting fine, and test negative, and no one else got it from her????

Please help, I'm so sad today.

[dcmom]

Kayleesmom-

 

I am in a rush right now- many will give you some input. Please let us know what area of the country you live, and what antibiotic (and how long) the prescription is for. Will reply later....

[kayleesmom]

I live in Tennessee. I have not picked up the antibiotic yet ( I will after work), bu tI am assuming it is a standard dose/round, probably about 10 days.

Thanks fo ryou reply, I'm really pretty down right now. Will her symptoms go away after the antibiotics( the psyc seemed to thinkso, but that's not what I'm reading). I didn't even know she had strep, even the test was neg, so how will I know if she gets it again?

[Phasmid]

Fortunately, you are in the best place you can be right now- so many people in this forum know so much and have so much experience (good and bad!). Don't panic just yet, but I know the "down" feeling quite well. There is hope. Dr. Kovacevic is one of the most experienced (in terms of numbers of kids he has treated) and he offers a huge (almost too much) amount of info at www.webpediatrics.com. The response to an antibiotic therapy depends on the target organism, but you will know pretty soon if it is working or not. If not, your doc will probably try a different antibiotic. One thing to know early on is that this disorder can be triggered by other microorganisms, and not necessarily Streptococcus bacteria. Your doc should at some point order several different lab tests to determine if something other than Strep is at work. My son responded extremely well to antibiotics alone, and he was possibly one of the worst cases. You need to read as much as you can because only you can determine whether or not you have the right physician helping you. Hang in there!

 

 

 

I live in Tennessee. I have not picked up the antibiotic yet ( I will after work), bu tI am assuming it is a standard dose/round, probably about 10 days.

Thanks fo ryou reply, I'm really pretty down right now. Will her symptoms go away after the antibiotics( the psyc seemed to thinkso, but that's not what I'm reading). I didn't even know she had strep, even the test was neg, so how will I know if she gets it again?

[thereishope]

Welcome. Pick up those antibiotics today and start them. Be very good about giving them and don't forget doses. While you're at the store, you can also pop in the aisle where they sell PROBIOTICS.It would be by digestive health. This is good for maining the good bacteria in the gut and for strengthening the immune system. Space the probiotics out from the antibiotics. MAybe a 2-3 hour spacing. Then mosey on down to the Omega 3 aisle. Omega 3's and DHA are good for the brain. Hopefully it will help her brain heal and they have been known to ease OCD. Then turn to the next aisle and pick up some Ibuprofen. For some, Ibuprofen will also ease PANDAS symptoms. Then go to check out and have them stare at you and wonder why you're buying all of it:)

 

Here are some good threads for you to read. I suggest printing them out. They may answer some questions and lead to new ones...

 

PANDAS Fact Sheet

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

 

PANDAS FAQ

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

 

Hopefully, you will see some improvement over the next few days. Some see dramatic, some see a little Let's hope you see something. I'm not saying you will definitely have your child 100% back to themself by the end of the 10 day script, but when you see that improvement, it's priceless. The actual timeline for recovery varies child to child and sometimes, you will need to change treatment to see results.

Edited April 30, 2010 by Vickie

[thereishope]

btw...It's actually pretty common for PANDAS kids not to get classic symptoms of strep. My son's behavior changes are the only symptom.

[Fixit]

well...prior to this last onset a year ago...ds would ALWAYS completely remit with just abx.....

my ds is 10, last onset was at 9

so yes they can work...

how do you get a diagnsis of pandas???? i just asked my the guy i'm seeing and he says there is no such"diagnosis" yet...though he treats for pandas, as his kids have it....

[momaine]

Since you've caught it right off you should have a better chance of having the antibiotics work. I actually know of one little girl near me who had strep and came down with a ton of anxiety that same week (couldn't go to school and wouldn't even come down stairs for days because the dog had thrown up on the floor once) I knew her mom and pressed her to get antiboitics right off and stay on them for at least a month. The best she could get from her doctor was Ammoxicillian for a month in addition to the normal dose she was first on but she slowly got better and seems to be in a good place right now. She's back in school and behaving normally now.

 

Best of luck to you! Keep reading here.

 

Angela

[Megs_Mom]

Hey there - I am so sorry that you and your daughter are going through this. You'll find a lot of support & ideas here, whatever your situation turns out to be. Hopefully, the abx will work really well for her - how long since the sudden onset OCD's start? Our daughter got her first episode at age 3. It was coincidentally (not because of the severe OCD, but due to an ear infection) treated with abx & went away for 3 long terrific years. When it came back at age 6, it was much more difficult for us, as we did not know what she had, and had a LOT of wrong diagnosis. I'm so delighted that your doc is saying PANDAS right away. That is a start.

 

So, now that you know she has PANDAS, even if you get rid of it altogether, just remember this time. Journal it, talk about it - so that if it should ever return, God forbid, you'll have the confidence to immediately know the kind of help you need.

 

Our daughter is now (age 8) successfully treated with abx. Should she get another severe episode (we've had 3 or 4 now - 1 long one that had 2 peaks, so might have been 2), we will likely move on to IVIG. But she is a very happy little kid right now, and that is what matters to us, day by day. Keep focused on today, and don't look for daily improvement - kind of look at where you are on a weekly basis. Hopefully the abx will help.

 

Personally, I do think it is extremely important WHAT abx they have given you and what the dose & duration is. You may want to share that here, so that we can share some perspective with you. If it does not work, we'll all want to know that she had the best abx for this illness.

 

All my best -

[Doug]

Here are 2 sites for you

PANDAS network.com

and web pediatrics.com

Tracie

Edited April 30, 2010 by Doug

[Stephanie2]

Maybe this will make you feel better. I believe that both of my neices had pandas episodes a year ago. One of them followed her mom around and cried if she left the house. She also had quite a bit of depression (this came on abruptly and lasted 6 months). My other neice became defiant, emotional and had a bunch of sensory sensitivities over a 3 month period. Then it vanished. This was all while both of my boys were in a pandas exacerbation and each had strep. My neices were constantly exposed to my sons. Anyway, each of their episodes went away without antibiotics and it hasn't happened since then. In fact, one of my neices developed strep throat 6 months ago. The doc caught it early and treated her with a standard dose of antibiotics and she was fine.

 

So maybe that is what will happen. I think most people on here have very severe issues (including myself, 2 boys with very bad pandas that are not responding to standard treatment). Don't get scared quite yet! Actually, you are very lucky that you received this diagnosis so soon. Many of us have gone years without the proper diagnosis (took 3 very long painful years in our house).

 

Let us know how it goes!

Stephanie

[kayleesmom]

Thank you all very much for your replys. I'm sorry, I'm just now responding, as I only have internet access at work, and I am off on weekends. I picked up the abx on Firday afternoon. I started them on Friday afternoon, so she has had 3 doses so far. I did notice that yesterday she seemed to have a better day, but last night during the night she wok up and was repeating her OCD sayings (that is the symptoms she has with this). Someone asked me how I got a diagnosis of PANDAS. Actually, I got it from a psychologist. I had talked to her dr about these strange phrases she was repeating over and over and he suggested I talk to a psychologist who immediately siad PANDAS. I had never heard of it. SHE called the dr and asked far a round of abx for my daughter. And this is where we are today. I'm not sure how to even go about talking to her dr. I'm not sure he even thinks this is a real issue. My daughter has been her usually playful self more this weekened, I do know that. From doing some reading, it sounds like everytime her or someone in our family gets sick, this will start again??? Is that correct, even if it's not strep? Does this go away as she gets older, or is it something she will have forever? Also, what is the IVIG thing everyone is talking about??? Thanks for your help.