FallingApart

Elizabeth, he did mention B cells. But I didn't understand really what he meant. But he did say it could be at the cellular level and he did say the B cells could be a part of our problem. So I bet you are right.

We had our immuno appt yesterday at our Children's hosp in Seattle. Our Children's "doesn't believe in PANDAS". I knew this going in but this immuno doc is highly resprcted and also a friend of our ped. For that reason, our ped had been able to explain our story to him prior to our visit. I made it clear at the beginning of the visit that I wasn't hung up on him giving us a PANDAS diagnosis or even his believing in it. My only goals were for him to help us, stabilize our daughter and help our family. The doc was very kind and ver thourough. He and his team spent 3 1/2 hours with us. He only sees paties 4 times a year and we were one of them. His thoughts were very interesting. He said he wasn't surprised that PEX hadn't worked for us. He said it is possible that DDs "issue" is at the cell level and if so, PEX wouldn't have touched it. (At this point, we had been there for over 3 hours, so I wasn't sure how many more questions I could ask. I really wanted to ask his opinion on why it worked for everyone else's child though). He said that based on the things that had worked thus far for DD, he believes that she has some sort of inflammatory autoimmune disease going on. He also feels that she doesn't fit neatly in any existing disease. He ruled out CNS Lupus and other diseases but said there isn't one that she does fit in. For that reason he can't give whatever she has a name. I asked if this is uncommon and he said it is not uncommon for auto immune diseases not to have a name. Really, I felt like he was telling us we have PANDAS without telling us we have PANDAS. He seemed to agree with everything I said just not the name. He was nice and I didn't have to defend myself and so I felt fine with the fact that he didn't call it PANDAS. He believes that we will need to do IVIG monthly for at least a year. Possibly more. Like 3 or 5 years. He said that if this was caused by a virus (strep) that these types of autoimmune diseases typically "burn themselves out after a while" That is fabulous news, yes???? He lso said that even if it wasn't caused by a virus, they often burn themselves out as well with therapy (IVIG). After we left, I did feel that we FINALLY have a team on board who can help us. It also helps that DD seems to have started to stabilize after this IVIG. She is no gem yet, but she is tolerable and seems to be improving. All in all, I think I can start lending some positive posts here and there now. Thanks for supposrting me through our darkest times!

OMG, I am sooooo sorry for this appt for you!!! We have had our share of these horrible appts and I know how they make you feel. I'm so sorry for you!!!!

This is my question too. Our DD just turned 4 and has been in an exacerbation for an entire year. We had 2 brief reprieves with the 2 IVIGs we did. But I saw first hand that therapy was unable to reach her when she was in an exacerbation. We have just signed up for ABA therapy. This firm provides ABA therapy for autistic children and is taking our daughter even though she hasn't been labeled autistic. I'm wondering if she will benefit from the therapy and either unlearn the PANDAS behaviors or learn replacement behaviors instead.

Hi ELizabeth, Yes, the plan will be to do monthly IVIG. The only question we all have is whether, or for how long, she will need that. Since we did PEX, will she reall NEED monthly IVIG? We thought PEX was supposed to be the cure. Of course we will do whatever is necc but we are wondering if she will need a full year of this or not. Surprisingly, yesterday continued to be a good day overall. There were still some pis$ed off moments. But DH and I were able to deflect them. We didn't used the diazepram, she took a nap on her own and went to bed with only melatonin at night. She did wake up last night and come to our bed and was very restless. I could tell her mind wanted to sleep but her body couldn't. Her eyes remained closed but her body was thrashing everywhere. I decided to try some Benadryl and she is still alseep now. She needs to get up though because we have our Immuno appt this morning!!!

I was way too upset to write yesterday... We finished the second IVIG on Friday and on our trip home from the hosp DD sang the entire way. She never sings. She was clearly a different person. If I had to judge the IVIG on that car ride I would have said it was a success. We went back to the ped Sat morning for the 3rd dose of the IV abx and the ped removed the IV. Again, I would have said she was a transformed child. DD missed her real b-day and that day was supposed to be her party. We had cancelled it but all her presents were at the house and the cake, etc. Just before we started "the party" (our little fam and grammy) we told her no about something and she went nuts. Biggest rage to date or so it seemed. From therethings were absolutely terrible. All of Sat night and then again all day yesterday. DH and I were flabbergasted. Howe could IVIG work for 12 hours and then simply suddenly shut off???? We still had 3 doses of Diazepam and the ped was fine with us using it so we gave her a dose of it yesterday morning. It certainly heped but didn't "fix" her. We basically just waited for yesterday to end. Now here we are again awake for a new day. I could just tell when we woke up that she is different. Who knows what level she is at this morning, but I can tell that she is slightly better. This is very different than what we saw the first 2 times we did the IVIG. Those times it worked instantly and completley. That's all for now...

Judy, did you get the codes you needed? If not, please contact me with your phone number and I can find our paperwork and call you on the way to your appt. I do have them here but have to locate them. As for the b-day...we just "celebrated" ours as well. It was horrible and completely depressing. Your post rings true with me. I hope today goes well for you!

Thanks, Faith! I am waiting till she wakes up to make another judgement. But, I am thinking it is possible we might have seen some benefit. I will certainly post after the first time she is told no this morning. We are in Seattle (PST) so she is still asleep. Which is a good sign!!!!!

I saw this trial as well and was very upset to see it actually! I dodn't want there to be any connection with IVIG and scizophrenia. I showed it to our ped on Thurs and told her that I couldn't find results either. Is this the trial with 13 children? if not, I found one with 13 children done in 1997. Results not avail. The site said it had been updated around 2008. I, too, would love to see the results.

We haven't slept in a year. But when things are at their worst we get about 4 - 6 hours/day. We have done all the things mentioned here but also added one more. Our doc feels that GABA helps keep children asleep. So melatonin to put them to sleep and GABA to keep them asleep. WHen DD is in an exacerbation we cannot use Benadryl. If she is healthy, we will sometimes use both Benadryl and Melatonin. Like I said, we haven't slept in a year and are pretty desparate. In the last 12 months we have only been healthy for less than 60 days (both IVIG times) I posted a question like this just prior to our PEX and I do feel that the GABA addition might be what made the difference for us. Good luck to you. I hate waking up for the day so early. One day we woke up at 12:45 FOR THE DAY!!!

Holy cow! We had night terrors at 4 months. I know night terrors are things that any child can have. But more similarities...

We still to this day have not been diagnosed with strep. Does that mean DD is a carrier or she has something else that brought on and is causing PANDAS? I don't know. What I do know was that from 0 - 9 months DD was a very easy baby. She had a few issues but had no real sicknesses and no sensory issues, sould go to strangers, etc. All the things you are concerned about with a newborn were not an issue for us. Then, in the middle of the summer at 9 1/2 months she just started crying and pretty much didn't stop for at least a week. We thought it might be teething, displeasure at not yet being mobile, who knows. But it was out of the blue and out of character for her. Since we had no idea that we were looking for something to be wrong we went back to expecting her to be our perfect and easy baby. But from then on her personality was different. She was different at playdates, she stood out from the other kids in different non-autistic ways. I now know it was PANDAS. Her behaviors were to just git really irate about things that shouldn't matter. No ability to share or take turns. Even at an agae appropriate level. Never developed manners like other people's children or our next child did. Just very rigid and inflexible. It came on suddenly and never went away. And now we are where we are today...

That is interesting! My child is always hot! She really doesn't put words around what she is feeling very well, so I would never have though hot flashes. But she is always yanking her pant legs up and turning them into shorts whenever she gets hot. Now that you bring this to mind, I would bet that is exactly what she is feeling because I don't see this 24 hours a day but more like many times a day but only maybe 2 days a week.

Hi all, We are back at our local hospital for the IVIG. We have administered the IV abx which is called Ceftriaxone. We have 3 1/2 hours to go on today's IVIG. Thanks Peglem for your advice on the anxiety med. We did use it and we did see effects. However, DD is just way too distraught and it was unable to help her at the time of the actual poke. She was beyond hysterical. Her actions were like that of one of her rages. Except that she wasn't raging, she was showing her emotions and was terrified. We had to stop several times because she kept jerking her hand. The first poke didn't work. The second worked in that they got the IV in but were unable to get blood from it. We had to wait until the Benadryl took effect before we could do a 3rd poke to draw blood. Of course she woke up and was hysterical at the third poke as well. Luckily the Benadryl put her back to sleep pretty quickly. My expectations are both in the gutter and super high for this. I keep watching her like a hawk to see if there are any improvements. She has only been awake for an hour. So far she has been quite nice. But we see this every morning as well. Then, once something pis$es her off, she is in rage mode for the day. I did tell her no already about something and she didn't like it, but was able to get back on track. However, we are sitting in a hospital bed eating popsicles and watching movies so it might not be the best environment to judge in yet. I'll keep you updated if I see any positive changes.

Yes, I will definitely post the name of the abx when Ilearn it. THe ped said the name but I had never heard of it before. I don't believe any of us are using it right now. Perhaps it is only available IV. Will let you know what I learn. Eileen how are things for you? And Ellen, yes PLEASE do tell us how that appt goes. I feel your statement mirrors our situation as well and I would love to know what Dr T says. Our improvements are only around drawing and sleep. And they are very minor.

Thanks for reporting this Isabel. I know momtocole probably appreciates it and I know I do GREATLY. We are leaving for the hospital in 90 minutes and I am still feeling anxious about the steroids having not worked the second go round. Our ped called Dr. L yesterday but didn't hear back from her. We are going ahead on our own. Your post is very helpful to me. Thank you.

Unfortunately we don't know what we are thinking. The reason we did PEX was that we were thinking the antibodies had worn of. Our ped consulted with Dr. L and the result was that given the short relief we got from IVIG, we would likely need to do it monthly for the foreseeable future if we wanted results. So she suggested PEX as a more permanent/longterm cure. All the sudden I am thinking though, that perhaps DD also needed IVIG with the PEX in order to heal. If whatever virus/bacteria she is afflicted with is still in her body, her memory cells would continue to make the bad antibodies to fight it. Wouldn't it? My only question there is why everyone else's children seemed to get results without an IVIG added to the PEX. I believe our ped thinks that DDs fever was indeed the swine flu. The whole ICU had the swine flu while we were in the ICU so it would make sense that she would get it. If it wasn't the swine flu it was the regular flu.

Peglem, are there any adverse effects with that? I just spoke with our ped about doing verced for tomorrow. It is considered somewhat an anesthetic drug and therfore I don't think you can just get it from target and go to your lab. Our ped thought there was a possibility but it isn't as simple as abx. I would love to use something tomorrow as well so would love to know if there is any other option that hasn't caused adverse effects.

Yes, Buster that is mostly right! You have it down better than me!!! The only thing is that we have been on one form of abx since rither June or July. We moved around a bit until we settled on Azith. We've gone between 2x/week to daily depending on the dose. I haven't quite convinced my ped that this is what we should do even though I have a year long rx for daily Azith.

Hello parents, This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan. DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear. The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments. We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it. When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage. I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated. Thanks!

I know what to recommend!! We used it while in the hosp for PEX. It is called Verced. I don't know how to spell it but that is how they all pronounced it. We did it IV but I would imagine you oculd do it orally. It did take away a lot anxiety for DD but not enough around the poke and the removal of the pokes. However, I would say that if your daughter is at 99% right now, this would likely do the trick for you. I think it was because we were at 0% that we still had issues with those points. Because it did reduce anxiety quite well in other areas. Good luck!!!

Momtocole, this is the same question I have today. We have been on Prednisolone 2 times. One was a 5 day burst and we saw miraculous results. The second time was a 30 day course and we saw 0 improvements. It is even possible that our DD was worse during this time. She is so horrible right now that it is hard to tell if it is the steroids that made her worse or what the cause is. I just returned from the ped (who by the way says that there is no way DD is schizophrenic...) and she and I both feel we should go back to IVIG for DD since this is the only thing that has helped DD. But, like you, I am sared to death that if the steroids didn't work, will the IVIG work this time. I'm hoping someone will come on here and tell us that their child didn't respond to Prednisolone but did to IVIG. Are you still giving the steroids today or did you stop?

The post about childhood schizophrenia has me thinking and terrified. I would imagine there are a lot of us who are pretty scared right now. And to add to that, I went and saw DD's psychologist today - without DD> The psych told me that she has been thinking childhood schizophrenia for a while now as well. Granted, we are her first PANDAS case, so... But, as I read through various posts, I see that some children are on SSRIs, some Respiradol, some other drugs, and some are on none. Can we talk about the non antibiotic drugs our children are on. Each time we have tried anything on DD (in an exacerbation) they have had the paradoxical effect on her. THerfore we are terrified to try anything else on her. However, when we were in the hospital for PEX, we gave her Verced (sp?) for anxiety and somehow that one worked. Our ped was there to witness this and saw that anxiety is clearly DDs major symptom. That would make one think that she would benefit from an SSRI or an anxiety drug. But, we did try an anxiety drug this summer (can't remember the name) and it backfired. So, can people reply with the meds they have tried and if they have been successful or not? I would love it if my child had "only" PANDAS and not schizophrenia. Lastly, who here has done cognitive behavioral therapy? Have you seen any benefit from it? We have tried it and DD has received zero benefit from it. She is unable to take what she learns and apply it to the next troublesome situation. Thanks in advance, all.

Peglem, We just did PEX with Dr. L. We traveled from Seattle to do it. We did it in 2 trips. It was quite the ordeal, but we menaged it. We have also drivien cross country with our PANDAS child and I might have some tips for you on attempting to fly. The 3 day trip might be worse than getting it over with in 8 hours of flying time traveling. Dr. L did imply that she would get PEX worked out with the insurance company. I think other posters are correct in saying that your possible only expense would be the $580 consult. Plus all the travel expenses. We had to take my mom as well. We also had to fly my husband and other daughter to Ohio to deal with his termanilly ill father but all told, the 2 trips cost around $10k. We also flew our pediatrician and paid for her stay. So it might have been closer to $8500 without that. All said, it was a huge undertaking.

So, Peglem, did it actually help in the end then, or would you have gone back to "normal" regardless. Dcmom, I am so hopeful that it is the flu that is masking any PEX benefit. But it is hard ot hold out hope still. I am still hanging on though. I will for a month.