1tiredmama

I want to thank each and every one of you for your kind words. I couldn't even come back to this thread before now because it was just too painful. Thanks to you, I think I can go into ds's follow-up appt at the end of this month, look Dr. L square in the eye, and say without crying, "Okay, now what?" There must be other ways to get my son healthy. I came back (mostly))from Lupus with treatment. I'm wondering if the same kind of treatment might help with PANDAS in an older teen since both are autoimmune disorders. IVIG is definitely out. It isn't covered, and ds does not have immuno-deficiencies anyway. I'd like to try an immuno-suppressant. Right now, I am waiting while Dr. L. appeals the denial. I was told on Friday that she had called CIGNA, but the person she needed to speak to was not available. I'm trying not to think about it. It just upsets me. Staying busy helps. Thanks again for being there for me. No one else could really understand this. I knew you would.

Thank you, LLM, for encouraging me not to give up hope for ds's intellect. The fact that your son is "a zillion times better" warms my heart. I read your link to CIGNA'S policy. They are getting around it by offering to pay for PEX one day outpatient. I've been told that it cannot be done that way, though.

Yes, indeed! My ds was tested for a gifted and talented program at the age of 6. His IQ was 127. By the age of 9, it dropped to 90! At 12, his IQ was 76! He is 17, and the school keeps testing, the result being around 76! So, I have proof on paper, 127, down to 76! He is learning disabled, and has Aspergers symptoms--very socially delayed. In the year that he has been on abx, he has gone from functioning like a 5 year-old to more like a 10 year-old. You've caught this early, your dd can bounce back. I'll bet her delays are temporary. I asked you in another post, but maybe you missed it--Does your dd still have sinus symptoms when not on an antibiotic?

I am so worried about getting the PEX that ds desperately needs. This child is 17 and has missed most of 3 years of high school because he is exhausted ALL the time and anxious. Not to mention that he has just about every symptom of PANDAS! He'd been suffering for years, and he's lost so many cognitive skills that we will have to take legal guardianship when he turns 18! He used to be incredibly intelligent! Cigna PPO has denied PEX for the third time! I am beside myself! We told our ds that there is a treatment that will likely stop his tics, clear his foggy mind, and restore his energy, and now we may have to tell him that it won't happen, that we can't afford to help him! I wish we'd never told him. I'm so sad, and worried, and angry. The only thing I can tell myself is that maybe it was too late for him, anyway. So many years of this condition have ravaged his brain and stolen his life. I doubt anything could bring him back. Thanks for letting me cry on my computer.

Thank you, LLM and Dedee! You have thoroughly answered my question. I learned a lot! I'm even going to bookmark this post for future reference. You are the BEST!

Thank you. The request was resubmitted and now we wait for approval from their "medical review committee." I'm so frustrated I feel like giving up. We are heading into another year of school with a child who is too sick to attend, despite the fact that he really wants to do it. School starts on August 20th, and PEX, which should have happened a month ago, is still out of reach!

Has her sinus infection cleared, yet? And, by that, I mean is she free of sinus trouble without abx now?

Dr. L wants ds17 to have PEX over three days at Georgetown as an inpatient. My insurance (so far) has approved outpatient PEX. I think we will get the inpatient approval, but I am wondering what is the reason for inpatient, especially for a child who will be 18 next month. Does anyone know?

Wow! Thanks for all the recommendations! I can definitely work with some of these ideas. Am I NOT supposed to be giving a probiotic at the same time as the abx??? Because I have been doing just that.

I've been using Culturelle for both ds and dd. Dd12 has issues with taste, and at times with eating. She is complaining, and becoming increasingly anxious about the Culturelle because she claims it has a taste, gets stuck in her throat, and makes her briefly nauseous. I think taste is the biggest issue here. I need to switch probiotics. I'm looking for one that preferably does not need refrigeration. She has myco and is taking Augmentin and Zith, if that matters. Thank you!

I'm glad you got some answers today from someone who sounds like a competent, caring doctor. May I ask a question? Assuming that your dd has been treated with abx for her persistent myco, how does having lyme play into that? What is it about lyme that keeps a child from clearing another infection, even while on abx? Thanks!

Yes, tics change over time--motor tics, vocal tics, breathing tics, stand-alones or in any combination.

The whole thing screams PANDAS to me. Has she been tested for mycoplasma? My ds seems like he has Aspergers, but I feel certain that it is a PANDAS symptom because he was not always like that. Your little one definitely needs a PANDAS eval.

I got a call from the doctor's office saying that dd (recently dx'd PANDAS) has an active myco infection and that the doctor ordered Zith and PEX. I have not seen the lab results, so I don't know any more than that. Dd is currently on long-term Augmentin. I asked if Zith is to replace Augmentin or be in addition to. The staff did not know. I haven't gotten an answer, yet, nor has the pharmacy received the order. Here are my questions: 1. Will Augmentin alone clear it, if I never get the Zith? 2. How can dd have NO symptoms? 3. Can it cause sudden, severe asthma? I ask about asthma because dd never had asthma. Then, in December 2010, she got a respiratory infection and horrible asthma. She could not walk from one room to the next without an attack. It kept her out of school for two weeks, I'd never seen asthma so bad. It took a high dose of oral steroids and an abx to stop it. She had two more bouts that winter, a week each. Her ped said she had a virus both times. Since then she has been on Flovent daily from Nov-April with success. Last August, she had bronchitis. (Maybe dd had/does have myco symptoms.) 4. Could she have gotten myco in 2010? 5. Could it have hung on, despite 10-day courses of abx? 6. Could it be making her symptomatic periodically? Thank you!

Thank you, airial and Worried. You are right, it is easier the second time around (but, certainly not easy, right?) I know what you mean, airial, about girls and drama queen behavior. I have to tease it out in my house, too, sometimes.

Dedee, thank you for such kind words. They warmed my heart. My kids will be having PEX done at Georgetown--as long as we get insurance approval. I haven't seen dd's results for myself, or spoken to the doctor, but the receptionist said dd has an active myco infection. Unless it can cause severe seasonal asthma, dd has no symptoms--other than PANDAS, of course!

Sending you a PM.

Just last week, I questioned dd's upcoming eval. With the exception of OCD, ds17 has every last symptom of PANDAS. He is disabled by it. His dx was no surprise and quite a relief. Dd12 has had periods of severe bipolar/anxiety symptoms, but her brother's illness overshadows hers. Last week, given dd's "grayer" picture, our PANDAS doctor gave us a probable dx and said we could treat conservatively with a trial of long-term abx. A wait-and-see approach. No surprise. But today, I got a call about dd's bloodwork. Her abx is being changed, and she needs PEX. I couldn't believe it. I mean, I should have KNOWN, but it's such an emotional thing, I think I just couldn't face it yet. I just want to lock myself in a room and take the time to comprehend this, but life doesn't allow for a day off. I know this is a good thing--absolutely. My dd can get better! But, I know that we have a long road ahead of us, and I know from ds's PANDAS the full potential this disorder has. Thank you to every parent who encouraged me to investigate the cause of dd's symptoms. When I started this journey for ds in February, it NEVER, EVER occured to me that dd might have PANDAS--even though she was homebound due to panic disorder and hiding behind her bed from her home teacher! Thank you for letting me know that siblings can be affected, too. This site, you parents, are invaluable!!!

Yes, like mkur said, propanolol is another possibility. I remember now that dd's psychiatrist brought that up as a possibility, but my dd could not take it because she has asthma. Apparently, that could be dangerous.

My dd12 has a long history of anxiety. Most recently, we have dealt with panic disorder that not only keeps her out of school, but had her hiding behind her bed when her homebound teacher would come to the house. We've tried a few meds. Years ago, Zoloft (an SSRI) caused a horrible, sudden change in dd. I lost her completely for a full year--she had 4 stays on a child psych unit during that year. Beware of SSRIs! Ativan and similar meds caused strange thoughts/behavior. Desperate to get her back to school, I allowed a low dose of Abilify (like Risperadol, but fewer side-effects.) It worked! I could not believe the change! Dd even put on the 10lbs she had lost due to anxiety. That was at the end of last school year. I have since taken her off of it for the summer. Now, seperation anxiety is back. Next week, she will go back on Abilify in preparation for the start of school. Dd was just dx'd with PANDAS last week. Dr. L. is treating her with long-term abx. She suggested that we continue the Abilify until winter break, wean her off then, and see if abx can carry her from there. You and your dd have my sympathies. Anxiety can be so devastating, and as a parent, it's hard to watch.

HAHAHA!!! Too funny!

Don't be afraid. T&A recovery is easier on little ones. I had mine done when I was 3, and I don't remember anything worse than a minor sore throat. My ds17 just had his done, and I thought it would be just awful at his age, but it wasn't! He did surprisingly well. In fact, dd12 may need the same, and when I brought it up with her, she said that she isn't afraid because it wasn't so bad for her brother. Relax and look forward to the wellness the procedure will bring!

Thank you, all. Her eval is on Tuesday. I know she needs to go. Psychiatry is only getting her so far. Thank you for reminding me to trust Dr. L.'s experience. I've been thinking a lot since last night, remembering things I'd "put away," like how dd insisted she was fat from ages 3-6 years (until we started meds.) She has more than BPD, that's for sure. It's just so hard to look at all those painful years again. I think the idea of having to do that was really scaring me last night. Dd may be too afraid to go to school now, but she is SOOO much better than she was as a little girl. I'll have to talk about those years with Dr. L. and they were such sad years. But the reality is that at ANY time dd could spiral back into that, and a raging, delusional adolescent is much worse than a raging, delusional little one. If dd has PANDAS, we need to know now and start treating it. Time to put on my big-girl panties.

I'm hoping this post reaches other parents with more than one PANDAS child. I have this nagging feeling that I will be wasting my time and money next week on dd's eval with Dr. L. Ds (17) was dx'd in May. He pretty much has every symptom of PANDAS a kid could have. He is currently non-functioning--can't attend school, can't learn to drive, can't work a PT job... There is always something going on with him. Dr. L. thought dd (12) needed an eval based on a history of severe pediatric BP, panic disorder which keeps her out of school, insomnia, and urinary urgency issues. This came up at the end of ds's (very emotional) eval, so I didn't get a chance to really process it. Now that her appt is just days away, and I'm needing to get a history together for her, I'm questioning the whole thing. If ds had never been sick, then dd's situation would seem pretty bad, but her picture pales in comparison to his. She, too, has been non-functioning at times. But, she does not have the brain trauma that ds has. She does not have tics, OCD, or loss of fine motor skills. She struggles with Math, but lots of kids do. In short, she is lacking the hallmarks of PANDAS. Maybe she has straight-up BPD and panic disorder. I owe it to her to get the eval, but I have second thoughts. My question is to parents of more than one PANDAS child. Did the siblings meet all the criteria for a dx? If they did not, but were dx'd anyway, did they improve with treatment?

I agree with the others. Each case is so individual. If you think that her issue is really a matter of being behind (academically and/or socially) due to lost time, then I would agree that repeating now, rather than later, is a good idea. If, on the other hand, there are lingering issues that hold her back and are likely to continue holding her back, then you may not gain much by repeating a grade. I lean towards following the advice of her educators--as long as you have trusted them all along. They know your child and the 2nd grade curriculum. Have you considered working with your dd over the summer to bring her up to speed for 2nd grade? If you choose to go this route, you must be very disciplined and stick to it. If you aren't sure how to do it, perhaps you could pay for the service. Just an idea.