Abigails_Mommy Posted May 19, 2011 Report Share Posted May 19, 2011 (edited) Hello Everyone! I am so glad I found this forum! My name is Casey and my dd Abigail is 5. In Jan 2010 she had a cold and the dr threw in a strep test thinking it wouldn't be positive, it was. Shorly after the excessive wiping started. She goes back to the bathroom atleast 5 times. Then the SPD symptoms started. In Jan 2011 she started crying saying bad words were stuck in her head. Jerk, stupid, fat, dumb etc. She'd run to me screaming to make it stop. She also started having UTI symptoms, took her in, everything was fine. At that time I brought up everything else and he referred to child psychologist. For about 2.5 weeks it was ######. She was in the bathroom all the time, crying about bad words, wouldn't leave my side, was repeating herself over and over, just miserable. I came across Pandas researching OCD and everything seemed to click. I switched doctors and this one was willing to listen. Her bloodwork came back fine but he still prescribed Cefdinir. It was like a miracle, my baby was back! Then 2 months later her friend tested positive for strep. A few weeks later the constant wiping came back. Now we are about 11 days into ###### again. Same thing UTI symptoms but no infection. Is scared to death I'm going to leave her, refuses to go to school and screams bloody murder if you force her, wants to be home all the time even when out doing fun activities, she refuses to play soccer anymore, is wiping all the time, and has regressed to basically a 2 yr old. She throws tantrums all the time, you can't take her anywhere. She bites and hits herself and throws herself down on the ground. She didn't even do that at 2. Her Dr refilled the Cefdinir, didn't help. I requested Azithromycin but he only gave her 5 days. We saw a Dr that deals with allergies yesterday and he was no help at all. I can't find a doctor to take me seriously. She is miserable and I'm hanging on by a thread. Any help/info would be greatly appreciated! Edited May 19, 2011 by Abigail's_Mommy Link to comment Share on other sites More sharing options...
rockytop Posted May 19, 2011 Report Share Posted May 19, 2011 I would start with-- 1. Sure sounds like PANDAS to me! 2. Do you live near a PANDAS doc? Having dealt with this for 2 girls, one very very sick and one pretty bad (though much better post pex & IVIG!-YAY!) I honestly would head straight to a PANDAS doc. I would not waste time, money or your sanity! Easy for me to say-- I live quite close to one. Link to comment Share on other sites More sharing options...
Abigails_Mommy Posted May 19, 2011 Author Report Share Posted May 19, 2011 There are no doctors here that I know of. I've been researching and the allergist doctor has treated Pandas but he doesn't think she has it. Says yeast?? I'm about 5 hrs from Dr K so it looks like we might be heading there. I'm in St Louis MO and I called Springfield MO today from a list of Pandas doctors but they aren't taking new Pandas patients. I'm just so upset, stressed, and worried for her. Its your job as a parent to make it all better and it's so hard to look at her miserable, turning into another child. Link to comment Share on other sites More sharing options...
JAG10 Posted May 19, 2011 Report Share Posted May 19, 2011 Hi Casey, I have an Abby also, but she is almost 8. However, it is my older dd11 with the more significant pandas. You have a lot going for you; you've found us, your Abigail is very young and you are proactive!!! My older dd had this for many, many years and was almost 10 before I found out what was causing the problems. She has been getting treatment for about 16 months and is soooo much better and well on her way to being "neuro-typical." Can you tell us roughly where you live? Jill Link to comment Share on other sites More sharing options...
Abigails_Mommy Posted May 19, 2011 Author Report Share Posted May 19, 2011 I'm in St Louis MO Link to comment Share on other sites More sharing options...
JAG10 Posted May 19, 2011 Report Share Posted May 19, 2011 So you know you are 5 hours from Dr. Kovacevic. There are other parents who have seen Dr. Chugani. If you scroll down the topics to Vickie's post about a pandas newsletter, there is a link about this doctor leading a PET scan study at Children's Hospital of Michigan. Could that be a possibility? I agree; do not pass go or collect $200, go straight to a pandas specialist. Last summer, I flew and drove from the Philly, PA area to Chicago to get my girls seen by Dr K. Now we see Dr B who is within 3 hours driving. Hopefully, others will chime in soon. It's past my bedtime. Hang in there, Casey. Link to comment Share on other sites More sharing options...
Abigails_Mommy Posted May 19, 2011 Author Report Share Posted May 19, 2011 thank you Yea I'm thinking we are going to Dr K. It just so crazy I live in a city with 2 amazing Children's hospital but no one takes Pandas seriously. I know I can't be alone in Stl. Link to comment Share on other sites More sharing options...
lmkmip67 Posted May 19, 2011 Report Share Posted May 19, 2011 Go to the Pandas Dr! I complained at first about the 2 1/1 hour drive. No more. He feels close to me.I am closer than a good deal of his patients. Not worth the time or the energy or the funds going to other doctors. Link to comment Share on other sites More sharing options...
SarahJane Posted May 19, 2011 Report Share Posted May 19, 2011 First, I agree that it does sound like PANDAS. I also agree with going go an expert. We drove 8 hours from Lexington, KY to see Dr K & we did IVIg. Today is actually the 6-month post-IVIg point, & while there have been flips, bumps, & a 6-week treatment for myco p, right now we are in a pretty good place. Some OCD, age regression, etc...but WAY better than 6 months ago. And I had 2 local drs tell me it wasn't PANDAS...took Dr K less than 15 minutes into our phone call to call it PANDAS. And maybe you've seen this in your dd, but subsequent exacerbations can continue to get worse...I'm sure you don't want a third one. Link to comment Share on other sites More sharing options...
Ozimum Posted May 19, 2011 Report Share Posted May 19, 2011 (edited) Hi Casey, I agree...go to a PANDAS dr. In the meantime, would you consider going to an alternative practitioner such as a naturopath or homeopath? and not just for your daughter, but for yourself as well. The stress of dealing with this thing has a toll on parents too. I was lucky that after we ditched our family doctor (who wanted to put us all on SSRIs! Grr!) I found a doctor who had homeopathic training and he realised I was falling apart too and checked me for a number of things like Vit D, and gave me magnesium supps, among other things and it helped me alot! Edit to say: It also helps that our new Dr supports our PANDAS dr. Also, if you haven't already, check the useful threads at the top of the PANDAS board. Edited May 19, 2011 by Ozimum Link to comment Share on other sites More sharing options...
nicklemama Posted May 19, 2011 Report Share Posted May 19, 2011 I live 5 hrs from Chicago too, only the other way from you in MI! We see Dr K. Get on the phone, make the appt and get her there. Link to comment Share on other sites More sharing options...
thereishope Posted May 19, 2011 Report Share Posted May 19, 2011 (edited) Welcome. I'm looking at your timeline...did you test your daughter when the friend had strep? The UTI symptoms you refer to, assuming you mean things frequent urination, is a symptom of PANDAS. While deciding to see a specialist or not, you can take the whole family in for strep tests (rapid, culture, maybe even blood work) even if they do not have symptoms as exposure to strep can worsen symptoms as well. If that little girl who had strep is a close friend to your family, you could ask the mom if she could take her daughter in for a follow up to make sure the antibiotics cleared her daughter too. As for the doctor mentioning yeast, well, yes it could possibly be part of the equation but probably not the whole answer. For that, you could give your daughter a probiotic daily. She may also benefit from Omega 3's and a good multivitamin. Kids, or I should say people in general, can benefit from probiotics even if they do not have any existing yeast issues. Here are some useful links for you to read... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl= PANDAS Flowchart http://www.latitudes.org/forums/index.php?showtopic=6688&hl= It seem like a lot but it may help answer some questions you have or lead you to others. Edited May 19, 2011 by Vickie Link to comment Share on other sites More sharing options...
Dedee Posted May 19, 2011 Report Share Posted May 19, 2011 I agree with everyone else. Do not wait. Quickly make an appointment with a PANDAS expert. The distance is not important compared to what you are going through. We drive 12 hours to see our specialist. Wish we could afford to fly but we have to take the whole family so we make a road trip out of it. You will discover that things move very slowly in the medical field. We have been waiting nearly a month for insurance approval for IVIG. And it took just as long just to get someone to agree to do it. Every day is ###### in our home and my family is in turmoil. The sooner you can get on the road to recovery the better. Do not let anyone or anything sway you from your mission. You are in the right place and everyone here is great to offer support. You daughter is lucky to have such a courageous Mom. Link to comment Share on other sites More sharing options...
patric Posted May 19, 2011 Report Share Posted May 19, 2011 There are no doctors here that I know of. I've been researching and the allergist doctor has treated Pandas but he doesn't think she has it. Says yeast?? I'm about 5 hrs from Dr K so it looks like we might be heading there. I'm in St Louis MO and I called Springfield MO today from a list of Pandas doctors but they aren't taking new Pandas patients. I'm just so upset, stressed, and worried for her. Its your job as a parent to make it all better and it's so hard to look at her miserable, turning into another child. Hi, We also see Dr. K. and he has been wonderful. We wasted our time with 6 doctors prior to him and most had never heard of PANDAS and the ones who had, did not know how to treat it. When we made our appt. Dr. K. said we could do a consultation over the phone if we were too far away so maybe that is an option. We are very fortunate to live only 20 minutes from him. Good luck! Link to comment Share on other sites More sharing options...
airial95 Posted May 19, 2011 Report Share Posted May 19, 2011 So sorry you're going through this. I agree with what everyone else has said, get to an expert ASAP. In the meantime - when your daughter is showing strong symptoms, try giving her a dose of motrin. I can reduce the PANDAS related inflammation and help the immediate situation. We can get to almost back to normal with a standard dose of motrin during the bad times. IT's a band aid fix at best - but it's a great tool in the arsenal, especially while you're waiting to get into Dr. K. Good luck! Link to comment Share on other sites More sharing options...
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