FallingApart

I think our ped will do the Rifampin and the Clinda, Worried Dad, but at this point I am so scared that we won't be able to get rid of it even with that. I can't believe that your wife's titers even rose while on it. Worried Dad, do you feel that you may have actually erradicated it, or do you think it is still there? What is your gut feeling? Our ped has seen 3 babies with chrinic strep (not carriers) take clinda and then get strep again.

This has been going on for so long that I can't even tell how we determined that she is a carrier. I believe we figured it out because DD had what we thought was a terrible diaper rash all her life but it would never get better with normal diaper rash treatment. Finally when she was almost 3, we had her rash checked by our ped and were all blown away when it was strep. I think a carrier is a person who is infected with strep but has no real signs or symptoms. Our carrier daughter has been on abx for about 9 months now and we thought we were fine. However, we have another very close friend who has a daughter with PANDAS as well. Our PANDAS daughter has never gotten better in her 2 years of this exacerbation (she has improved with IVIG treatments but they always wear off). Our friend's daughter keeps getting infected by our carrier daughter even though the carrier daughter should be fine on the abx. When the friend's PANDAS daughter reacts to our daughter, I will look and our carrier daughter has a bright red bum. It will not culture on any test because she is on such high abx, but the ped and I believe that it is for sure strep. Our PANDAS daughter was ready for IVIG last week but we made the choice to try removing her from her sister instead and the PANDSA daughter improved about 85% without IVIG treatment. I want to tear my hair out in how to kill this infection!!!

Stephanie, I've missed all of this. Can you tell me what OLE is?

I was thinking Rifampin as well, but does anyone know for sure? Or has anyone done it?

I haven't read all the replies, but here is my opinion. In the beginning (we are going on 2 years now) OT was extremely helpful to us! At that time our daughter's biggest issue was raging. DH and I are very mild mannered and were at a complete loss of how to handle this. We were blown away. In the beginning, DD had just turned 3 and didn't have a lot of communication (I believe PANDAS caused her to be a late walker and late talker) so the rages were EXTREME. OT taught us a lot how to handle the rages. We certainly couldn't make them stop, but we could get through them and possibly decrease the duration. I think OT got us through a very rough patch. Once we got our heads even with the water, we realized that DD was behind in everything. Not WAY behind, but behind. Enough that it was going to cause additional frustration for her, so we have kept her in. DD won't listen to us when we try to teach her-ride a bike, write letters, bounce a ball- it all creates a tantrum, but she will listen to her OT. For us it has been beneficial.

Hello to everyone. I've been away for a long time because each time I read posts I am terrified that all of your situations are going to happen to our family so I had to take a break. But I am back now because I don't know where to turn. In a nutshell, DD4 has had a constant PANDAS exacerbation for almost 2 years. We have been doing IVIG monthly for the past year. We did PEX and it failed. Over the past 6 months(ish) things have started to make sense. Our other daughter is the strep carrier. It seems that erradicating step carriage is not that difficult if a person can take Clindamycin. Our strep carrier daughter is only 3 and was constantly throwing up the Clinda. We put her on daily Augmentin and things calmed down for a while but our daughter got strep even while ON augmentin and re-infected PANDAS DD. Finally after 6 months of trying to get the strep carrier daughter to take Clinda, we were successful. We separated our girls so that PANDAS DD body could have a chance to calm down away from her sister. Shockingly, DD recovered without having to be hospitalized. This has never happened. During the 8 dau separation, I have been giving the strep carrier daughter 3x/day doses of Clinda. Well, last night, she got strep AGAIN!! WHILE ON CLINDA! Can anyone speculate/provide insight here? Our PANDAS daughter is set to come back tomorrow and now there is no way I can reunite them. Why in the world can we not get rid of the carrier state?? I can certainly expand on any of these details but I don't want to overwhelm anyone initially. I, myself, am trying to keep an anxiety attack under control! THanks in advance! FA

Thanks Chemar. Yes, we are using HOMEOPATHIC remedies. I'm wondering if anyone else has done this. I'm a little shocked by what she gave us although I understand it. What she gave us was not actually strep as I might have expected.

Hello all, Just wondering if anyone here has been to a naturopath to have their child diagnosed? We are on our second one. The first one was non communicative-she just gave medication to our daughter. We left her because I need communication from the professionals we see. The next person we are seeing seems to be great. Very communicative. She went over everything with me and seemed to pintpoint our daughter to a T. She also gave the remedy to ME to take home and give to our daughter if and when we decided to do it. Compared to the last ND, she is amazing. My question is has anyone here done homeopathy? I want to believe that it will help but am running low on hope. I'd love to hear your thoughts, stories, etc. THanks so much!

This is devastating. Dr. Latimer is such a caring person. Her tragedies are beyond belief. I wish I could help her.

mommd-interesting designation: treating this as an autoimmune vs treating as an infection. I agree with you. But what is the course of action and how is it different for autoimmune vs infection?

Can someone explain the proxies and comments to me? I thought we were just supposed to log in and vote?? I've published this on my blog and asked my readers to vote as well. If there is more I should be doing please let me know. Thanks!

Your story sounds as complicated as ours. I know the anxiety you are going through! I don't have an answer for you, but I am interested in the Pseudomonas. So far, our non PANDAS but strep carrier DD has been diagnosed with this. I believe we just checked our PANDAS DD for this on Weds as well. We can't get rid of the Pseudomonas in our other daughter. I'm starting to wonder is Pseudomonas plays a role in this because our DD got an active strep infection WHILE she was in the hospital and hooked up to the IVIG and IV antibiotics. Pseudomonas is relatively new to me. Is your ped concerned about it? I hope that's not a dumb question, but I am becoming more and more concerned about it.

This is so wonderful to find the source of infection! COngrats! I do have a question though and I think that your situation fits this question perfectly. If your child is on HIGH does, possibly long term antibiotics, shouldn't it remove the source of infection? How could this muecocele still exist with so much antibiotics running through his body? I feel we are in the same situation with DD except we don't know the source of infection. Clearly you son does still have an infection even with the antibiotics, but that is so scary to me. I am not sure if this is a question I'm asking or just a frustration I am venting over PANDAS in general. Would antibiotics ever kill the muecocele or dies it have to be removed? Finding the source of infection is HUGE! Congrats!!!

That sounds like our strep carrier non PANDAS daughter. We have been thinking it is rectal because it has always appeared as a diaper rash. So if you identify it as strep in the gut, what is the course of action? Is it any different than rectal or oral strep?

Good question! What other locations could it be in?

Mati's mom: what abx is your son on and how frequently? Have you also done IVIG?

TMom, so you have on child who has been on Augmentin for 6 straight months? What is the plan for that child? We have tried several other abx for our PANDAS DD and saw zero improvement. i'm starting to feel like I want to keep her on Augmentin indefinitely. I agree with the previous posters about remission, taking care of the gut, and whole foods. We were and are doing so well in that area. For our strep carrier daughter-she isn't getting oral strep-it's constant rectal strep. Would tonsil removal still help with that? I would think not. I'm thinking that our ped hasn't put her on daily augmentin indefinitely for the exact reson that was stated:you need somewhere to go if you get another infection. But, is it a risk we are willing to take? Can anyone answer that? That is why I want to know your plan, T.Mom. I am starting to think that perhaps it is a risk I am willing to take. I am so sick of this crap and my anxiety level, which may have fallen only slightly from PTSD, is now through the roof again! To see your child get worse while the IV is hooked up to her and she is receiving IV antibiotics and IVIG is absolutely terrifying! I know that you all understand!!! Thank you for all your answers. I'd love to hear more!

After having been in this for so long also- I believe my DD got PANDAS at 9 months - although we didn't know it until she turned 3, it becomes a bit easier to see the good points in things. I think your story is very uplifting and I am so thankful for you that your youngest didn't get his shots!!! I hope we all recover!!!!

I haven't been on the boards in a really long time. We have been doing monthly IVIG for DD and trying to rid our other DD of being the strep carrier. This is a nightmare, but one that we are managing...somehow. We just got discharged from the hospital from one of our monthly IVIGs and DD seemed to get worse while we were IN the hospital. DH and I were flabbergasted and couldn't figure out why. We had everyone in the house tested for strep - especially our strep carrier other DD. All were negative. It never even crossed our minds that our PANDAS child herself was the one with strep, but now I'm recalling a few things that tell me our PANDAS daughter actually had symptomatic strep. In all this time (18 months of PANDAS ######) she has never had symptomatic strep. But I believe she did this time. She got the strep on one of the days that she wasn't actually on augmentin for being exposed to strep from her strep carrier sister. It seems that we can put DD on Augmentin and it will clear up the PANDAS symptoms. But she goes off after the course is finished and then gets her symptoms again right away - within a week. What does anyone know about taking the appropriate antibiotic daily forever or for a really long time? I'm concerned about getting resistant to it. I'm concerned about that both taking it every day forever as well as stopping it after a course and starting again 1 week later. What is everyone else doing. In case anyone is wondering why we can't get rid of the carrier state in our other DD it is because she just turned 3 and can't swallow much other than ibuprofen without gagging and vomitting. We've been to the ped for every medicine we have tried and she gags and vomits every time. It seems that until we can get her to swallow Clindamyacin pills, we are in a bit of a fix here....

I HATE PANDAS!!! Ugh, we are going through somewhat of a similar situation over here. A question I am coming to is: "can these children be on their appropriate antibiotic every day for the rest of their lives?" By appropriate, I mean the one that works for them. And people with rheumatic fever are on abx every day - can our children do the same? Reading your post, Amy, makes me wonder this for your daughter as well.

Your description sounds very much like PANDAS. A very simple thing that you can do is to give your child curcumin. THis is the natural antiinflammatory. We hare on to someave been using this now for about a month and I am really thinking we are onto something. It seems that my DD needs to be on constant steroids which is not a viable option. We tried curcumin instead and have been happy with this. I've written a bit about it and th other changes we have made at www.pandasmom.com Good luck. Let us know where you live so we can help you with doctors if you need it. This is one reason why I think the curcumin is good because you can get it on your own...

This is very interesting. Our DD's PANDAS started in extreme at 3 yo and so did the bloody noses. The bloody noses were also EXTREME. Like unable to stop them for at least 20 mins. Huge amounts of blood. Because she was so little and spent most of her 3rd year screaming, we attributed the bleeding noses to the intensity of her screaming. But, as the 14 month long PANDAS episode waned, the frequency of bloody noses also decresed. Now, she might get a drop of blood here and there but that is it. Lord, do I hate bloody noses!!! I do think there is a correlation here...

Hi there, I have only been lurking for the past month because things have seemed so bleak over here. However, we may have found some new pieces to our puzzle that are helping our DD4. I wanted to post it for everyone in case it could help anyone else. I'm putting a link to my blog to keep it concise. If anyone has any questions, please let me know. http://pandasmom.wordpress.com/

We have Premera and they covered it. When is your other daughter scheduled to go? We are thinking of you and wishing you luck!!!

Pixiesmommy, I'm so sorry to hear this! We will be thinking of you and hoping this is just a temporary setback. I know you must be terrified and filled with dread. I know I would be. Please do keep us posted!!!