FallingApart

Wornoutmom, I have a question about schooling. My DD is only 4 and the thought of real school scares me to death. When your son was in and out of the classroom to take breaks and call his therapist, what did that do to his image in school? I can only imagine the other kids weren't always too great about that. Or was your son truly not able to care? I can imagine the kids in my grade school and high school having a hey day at your child's expense. This is the exact scenario that I am terrified about and think I don't want DD to go to a mainstream school because of it. But if she doesn't, then I have to deal with her all day... I'm sort of just thinking out loud here. I am probably in la la land...

UPDATE We ended up moving our IVIG up by 3 days. Today we are on day 2 of our 2 day dose. One of our blood tests came back and it shows an elevated number. I believe it was the ASO titer. I'm not positive on which test it was because some are sent out. But at least one number is elevated at least for DD. Our ped said the number isn't necc elevated according to published literature, but for DDs trends, it is at least 20 points higher than it should be. I am wuite happy to know that there is something scientific to why she had such a bad month. It is so helpful to know that we are not just imagining this or are weak parents.

DC mom, I'm so sorry to hear this! This breaks my heart and fills me with dread. Do you have any sort of plan at this point or have you only been able to identify it so far? I'm glad you are in close proximity to Dr. Latimer. FA

We had sudden onset PANDAS but did not have a positive strep test associated with it. We were tested for microplama pnemon and it was neg as well.

Hi Faith, That is exactly how DH feels. We have done a total of 4 IVIGs. 2 this summer and 2 this fall. The ones this summer brought our daughter back to us. But the results only lasted for 30 days. When we did the one in November, (this was after PEX failed us) we have very good results as well. In November, we were starting at less than 0 because PEX took us down so low. The treatment we did in Dec helped as well. But then DH got sick and DD had an exacerbation that lasted 9 days. We didn't know what ot expect: would it clear up on its own or would we have to tough it out until the next treatment. But her body did heal. But then, whammo - she failed again. Since I wrote this post this morning, it seems she is not quite as bad off as she was yesterday. Friday wasn't great, Sat was horrible and today is like Friday. So it is really hard to tell if this is another blip or if the treatment has run its course. I do still believe that IVIG is helpful. I think this has just been a very unfortunate month. DD weighs 47 lbs and is on 6ml of azith. The box says 200 mg per 5ml. So a bit more than 200 mg/day. Should I up this?

Hi there, If you are doing monthly treatments of IVIG, what is the duration between treatments? We were planning to go 28 days between each infusion. This month has been really bad for DD. She had a pretty serious blip 4 days after receiving this month's infusion. She did actually recover from it, but then 4 days later she is now in another one. We are set to check back in for the next infusion in 5 days. So, DH and I are wondering if this is actually a blip or the treatment is wearing off. I thought that I read that someone on here is doing the infusoins every 3 weeks. Can we get a consensus of the time between infusions here? Any thoughts from you experts on whether we should move our infusion up or stick it out until the planned date in 5 days? Things seem to be deteriorating quickly at our house. Thanks! FA

How are you feeling at this point? Happy that you don't have to go through the PEX or deflated that you traveled so far and didn't get to do it? I like that she recommended the 6 mos of IVIG. I hope this will work out for you. Is your ped easy to work with and will be able to help make this happen for you? Good luck with the flights. I also agree that the flight home was harder than the flight there.

This is great news!! What is the plan from here?

Michael, I am so sorry to hear about this. I can only imagine how hard this decision must have been. I think that we were probably in a similar situation this summer but never acted on it. Most likely because DH and I didn't logistically know how to go about doing it. If DD could have spoken, she would have said the same thing about not sleeping in the past year. I hope that the meds they use to try to help with sleep will work and not actually backfire. I'm glad there is a hospital staff there to tend to the fallout if they do indeed backfire. I feel that DD has an extreme case of PANDAS. We have also done PEX. But for us it didn't work. Our family was so hopeful that it was going to be the golden ticket and were pretty devastated when it wasn't. I think we are the only ones on here that it flat out didn't work for. But I wanted to chime in about that. If you have a true PANDAS doc that is guiding you, I think you should trust it. Of course Dr. L guided us. But we only met with her one time. SHe wasn't an expert on DD, only PANDAS. It is a terribly stressful decision to make. In the end, we went back to monthly IVIG and that is definitely helping. The road is so long, but I do think that creativity and perserverance will pay off. Please update us when you can. We will be thinking of you.

Dabel, our exacerbation lasted for a full year as well. It was horrible. But, we got things under control a bit here with the monthly IVIG and then got an exacerbation even during the monthly IVIG. I was convinced the blip would last all the way until the next IVIG dose. But, it lasted 9-10 days. I would like to chime in again about the colostrum. We have been doing this here for several months. It's a battle to get DD to take it regulalry. But DH takes it regulalry and he has been the healthiest of all of us. It is definitely noticable that his immune system is stronger from it. If we can keep one family member healthy and not spread a cold or other things, then that is great. We are trying to get PANDAS DD to take it but it isn't consistent. Also, in this last exacerbation, ibuprofen did seem to work for us. This is the first time we've seen an improvement from ibuprofen.

Peglem, you can do it!!! We did the trip from Seattle twice. And both times were in the middle of a pretty horrible exacerbation. I know that you will be able to pull it off. One of our trips happened just after one of the airlines did kick a child off the plane for unruly behavior. I told DD about that while we were in the terminal. I felt REALLY bad for telling her, but it actually worked. Each time she would start to lose it, I would remind her about the child who had a hard time and wasn't allowed to fly. Her eyes would get really big and it was enough to redirect her. Mine was only 3 (just turned 4) but you could consider this. I do still feel really bad for having to resort to this, but it did help us.

I believe we are seeing this exact situation as well. And, like Elizabeth, DD is not sick herself. Just having a blip. How long should we expect the blip to last? It has been about 9 days now. It hasn't been constant. But it seems to go hour by hour. We will think she is getting worse when all the sudden she gets better. Then, when we seem to relax for a minute, BOOM, she loses it again. Until this post and talking with Elizabeth today, I thought we were not going to get better until the next IVIG. But that isn't for 2 more weeks. This current blip coincides with DH getting a cold. But how in the world are we supposed to keep them from being around people with colds, etc?

Hi there, Your question is very interesting because we have the same situation. But ours is with the cat. It took me almost an entire year to figure out that our situation was OCD. She seriously has/had a compulsion to make the cat squeal/meow every time she passes him. DH and I are horrified by this. We spent the entire year explaining the correct way to treat a pet. (We have had pets since before she was born) Nothing we did all year long seemed to help. However, we had a stroke of luck just recently. DD just had her bday and turned 4. She asked for a 4real kitty and we gave it to her. Her birthday coincided with a relatively healthy time. We were able to tell her that this new kitty was her kitty and the real cat is mommy and daddy's. She isn't allowed to touch our kitty anymore. Now, when she reaches out to whack the cat (which still happens) we tell her this and it seems to jog her memory. The cat is still getting more bad attention than he deserves, but things are much better. When you mention that your son associates the dog with dying you make me think of something. I know that most people's PANDAS episodes started with a clear link to strep. But ours started exactly timed with the death of a prominent family member. DH and I have consistently gone back to this as a trigger point. Your son's words really strike a dhord with me....

Hi DUT, We have been through this same problem for all of 2009. DD wasn't 2 but was 3 for all of 2009 and since you and I have the same ped, I will tell you everything we have done. We did the Epsom Salt baths, used Kids calm supplement as a drink close to bed time. We give her Melatonin every night. I've not used Valerian but our ped told us to use GABA to help DD stay asleep. I have researched GABA and it doesn't say anywhere that it will help you stay asleep. But our ped tells her patients to take it and it seems to have worked for our DD. I don't know if your 2 yo has any sensory issues but I wonder if a weighted blanket might help. I know it would have helped DD but she would have hated it at the same time. When she wakes up, I have to go in and put almost all of my weight on her lower half while lying completely still to get her to go back to sleep. Good luck and email me if you have any questions.

I wouldn't go either. I might tell your DH that he could go on his own while you stay home with the children. I know that also stinks, but we have done a lot of splitting up this year to make situations work. My only concern there is that then your DH would be around it. That is a really hard one because of course your DH wants to go. And I know if it was mine, he would think I was nuts if I told him I didn't think we should go. But, I wouldn't go.

Yes, we are doing monthly IVIG. IN fact we just checked in today for our second infusion. This will actually be our 4th IVIG but is the first one we have ever actually planned!

Hello, I haven't been on the boards much because we are in a place where we are trying to heal somewhat! Things have actually improved for us! I am shocked and didn't think that we would get here. I think it is a combination of the IVIG and also a new therapy we have started called ABA therapy. I had never heard of this until recently but our neuro psych recommended we get help from them. I really wish we would have started with them in our darkest times. We actually started with them at the very beginning of DDs recovery period. I'm still not entirely sure what all ABA does. But they have been coming to our house and helping us deal with our most difficult issues. DD would never listen to us in the middle of a rage. But after a while, she will listen to the ABA people. And the good part is that she will remember it even after they have left and the situation comes up again. Now, if we were in our darkest moment, I don't know if she would remember these new skills or not. But so far, this has helped us. Has anyone else done ABA? Has it been useful in the middle of a full blown exacerbation?

I feel like I have asked this question all summer long. THis is so hard and so draining. I agree with the TV thing. We have been doing a lot of that here so that we can stay sane. But we have also started ABA therapy. I think it stands for Applied Behavioral A???. I've been wondering if others have tried this and will start a separate post on it. But all of the sudden, the ABA combined with our recent IVIG has made the last 2 weeks liveable. I'm no dummy to think that this will last forever, but I think our whole family are learning some good skills for both an exacerbation period and a helathy period. It seems the ABA people have the answer to the "you can't ust let the child run the house" question that we all face. Now, we have only been working with them for about 2 weeks, so I don't have a ful opinion yet. But, they have actually helped our house.

That's hilarious! TOday is a rare day that I don't have a tension headache from all this, so I will go open a bottle right now, too! Better keep us as healthy as can be!

I agree the psychiatric stuff is torturous to watch. We live in Seattle and oue immuno is Dr Torgerson at Seattle Children's. That said, he and SCH do not believe in PANDAS. However, I told him that I wasn't concerned with the title that he gave her disease, just that he helped us. He was very kind and very knowledgeable. After the appt, I felt we were on the same page and calling her diagnosis 2 diff things but still talking about the same thing. Please let me know if I can help.

Mommd, I can't answer the falling compulsion one, but I wanted to chime in with our story too. We also did PEX at Georgetown at the beg of Nov. I don't know how, but DH and I feel that we are the one family that actually saw detrimental results from the procedure. When we returned home, the only benefit DD saw was her ability to draw had improved. We waited 12 days and when it was clear that she continued to decline, we moved forward with IVIG. During this time we met with an immuno doc. He agreed with what we were doing and also said that he felt that DD's issues might have been at the cellular level which is why PEX didn' help her. He feels we will need to do monthly IVIG for the forseeable future. When I asked him to define that he said 1-3-5 years. He did say he felt that the disease would likely die out on its own. WHen you say you have more OCD and anxiety than before, I know exactly what you mean. We had that too after returning from PEX. Has the steroid burst helped you? We did not see any benefit from our steroid burst. We did the IVIG 3 weeks ago today and it took a full 2 weeks to start to see any improvement. DH and I were just about to call the IVIG a failure as well when suddenly something changed. DD is still not fabulous, but has definitely improved. And now we go back for our next infusion in one week. I know that the time of waiting for the IVIG is excruciating. I wish there was something I could do to help. I am hopeful you will be able to get in very quickly to do it!

Good Lord! Something new every day! As DD just turned 4 she hasn't lost any teeth yet. But of course I will be scared to death of this happening. Question: if you are already on proph abx, how do you increase the dose accordingly when the tooth is close to coming out? Do you double the dose for a while or do something else? I hope this is only a day long blip for Julia.

OMG, Eileen! This is not good. I'm so sorry to read this post. The part you wrote about ballet sounds exactly like my daughter last winter. I know there is a significant age diff between my DD then and Caroline now, but the behavior is the same. The only positive in this is that you know what you are looking for and you have a team in place already that you can work with. THis has to be a huge emotional blow for your family. I look at my youngest non PANDAS DD each day and am grateful for her. I live in fear that we could lose her too. She is so perfect and vivacious and so I understand the pain you are going through. Is there anything I can do to help?

Just an FYI...they CAN get the blood sample out of the central line. We insisted on it because of my daughters terror of additional pokes. We had our ped with us for the first 36 hours and she instructed that it be done. We had no additional pokes. This requires a special nurse to tap into this line, but it can be done. If your child is as terrified of needles as many are, you might consider this. But it is def not standard procdure. Best of luck!

Michael, thank you for sharing this experience. I think this is a technique we call all try with our children in all areas across PANDAS. I know I get so frustrated and want so much to make demands. I know for a fact it won't work so I don't make the demands any more. But I also feel it is not good to just let her get her way. I like this technique for many of the challenges we face in the day to day. The only problem is catching our children before they go over the edge. But it is something to work towards....