FallingApart

Hello, As I posted last week, we have just finished our 5 day steroid burst on my 3 yo dd. She responded fabulously and we ended the steroids with a completely diferent child than the one who started the steroid. We had our weekly meeting with our ped and she told us that after talking with Dr. K. we will 100% for sure regress and will need to do IVIG. I'm fine with this and after the results we saw last week, I was wanting to see if we could do a preventitive IVIG. (I was told we could not. It has to be done during a bout of PANDAS). My question is how long did it take your child to regress? I know this is completely arbitrary and that everyone is different, but I am interested to hear the stories. Each time our dd does something less than ideal, DH and I look at each other and wonder if it is regression or just a 3 year old. So stressful!!! Thanks in advance for your stories!

What is the Benadryl for? Is it to make them sleepy? Since the PANDAS has happened, Beadryl seems to rev up my DD. Prior to PANDAS it would knock her out. I'm hoping to hear great news from you about your dd, Sam.

Sam, I'm so glad to see your update! I've been thinking about you and wondering how things went. It sounds like it was an ordeal. I can;t wait to hear how she progresses so please keep us updated! I hope the worst of this is now behind you!!!

We are seeing our ped on Friday for our weekly appt and I have a call into her about proactive IVIG. I'm hoping to get several thoughts on this before then so that I can present this to her. Like many of you, we have had to basically drop out of life over the last 7 months and today my dd asked me if we oculd go to soccer class again. I want this child back and I will try my hardest to make it happen. I so appreciate your input!!

Thanks for your response, PMom. It is interesting to hear you say that he holds on to anxiety even in the best of times. I am seeing that right now too. The benefit we are seeing (whether from the abx or steroids) are having no effect on the anxiety. Is it your expectation that the IVIG will help with the anxiety? Would you go ahead and do the IVIG proactively even if your child were better temporarily on the steroid or abx? Thanks!

Hello everyone, After nearly 7 months of absolute ######, we started to see the smallest signs of improvement in our dd last week on Monday night. Per Dr. K's request, we had moved to Erythromyacin and after 4 days on that drug, we finally saw little blips of improvement. (Prior to that, we had already tried two other abx, with no change). Throughtout the rest of the week, we continued to see areas of improvement. After going down for so long, these small improvements were miraculous to us and added up to a big change! On Thurs, of last week, we had our MRI and all looked good. So, Thursday night we started our steroid burst. Throughout the weekend and until now we have continued to improve and at this point there is no denying that a big change has taken place in our child. Whether it is the abx or the steroids, can someone tell me how this works. From what I have read on here, this seems like it is likely to be temporary? Is that true? Will we regress once we go off the steroids? (Today is our last day). How long will the steroid burst's effects last for us? Any words of wisdom you want to share? Is IVIG a forgone conclusion? Thanks so much!

Can someone explain these "intrusive voices" to me? My dd is 3 and has PANDAS. She has only just recently made the smallest improvement on her new antibiotic and has just started voicing her anxieties. Before this she was just a meltdown a minute. Now she is at least voicing them and they are just spewing out of her mouth constantly. I'm wondering if what you are describing is going on with her but that she isn't able to voice it. If this is the case, what do I do about it? She is in therapy right now. Thanks!

We started with Augmentin and then moved to Zithromax. After our ped talked with Dr. K and he wanted to check the IGG labs, we moved to Erythromycin. We have been on that for 4 1/2 days even though we are still waiting for the lab results.

Hi there, We have been diagnosed with PANDAS without ever having been diagnosed with strep. All the cultures and the titers have been negative. We now have her blood in for I believe the IGG test. Her behavior changed on Dec 29, 2009 from a child with no sensory issues, fabulous sleeper, normal personality, no separation anxiety or anxiety of any kind, no out of the norm tantrums to us having a super anxious child who doesn't sleep, has 5 hour meltdowns and has severe SPD. This all happened almost literally overnight. The only symptom we don't overtly have is ticcing. We also have some OCD behaviors and reverting to more childlike behaviors. My daughter has lost most of her motor skills that would be available to a 3 yo and the list goes on and on. So, even though we don't have a positive test yet to confirm the PANDAS, we have almost every other symptom. I was hopeful that the antibiotics would show an improvement in our daughter but am now thinking I might have been wrong to expect that. Should I expect an improvement in her when we start the steroids? Thanks so much!

This is a question for anyone whose child is on a med other than a steroid. I believe that I have read that PANDAS kids tend to have adverse reactions to many medications. I know my DD had hyperactive reactions to Benadryl and sedatives. So much so that I am terrified to give her anything other that the antibiotic at this point. Has anyone else found this to be true?

Hello, My 3 yo daughter has had PANDAS since Jan of this year. Our pediatrician has been fabulous in working with us on this. She was already educated on PANDAS and was willing to investigate further to provide the right treatment for my daughter. Until our diagnosis and antibiotic prescription, every day was worse than the day before regarding behavior and anxiety. Once we got on the antibiotics, her behavior stabilized. The anxiety continues to worsen, but her behavior has stabilized. The part I am confused on is how the treatment(s) work. I've been reading through this forum for about a month now and am familiar with most of the concepts. What exactly is the role of the antibiotics? Are they supposed to improve our children? Or just prevent them from getting strep again in the future and thus another bout of PANDAS? Because I feel that we have seen no improvement since we have been on the antibiotics. We are still on our first and only bout of PANDAS and we have seen no improvement in over 2 months on antibiotics - only stabilization. Is the only real treatment for this IVIG? We have our MRI this Thursday and as long as that is clear we are planning to move forward with the steroid blast. Our family is at our wits end with our situation as I know you all must be as well. I think I was expecting that the antibiotics would make some improvement in our daughter but now am wondering if I was wrong to have such expectations? Can you tell me at what point I should realistically start to see some improvement in her? Also, we did the Celiac Disease blood test and everything came back negative except for eggs. This would indicate that we don't need to change her diet much. Has anyone else done this test and had normal results but still had any successful results when changing your child's diet or supplements? Thanks so much!