FallingApart

Hello, This has probably been asked before, but I am having a hard time finding a compilation of answers. Can we start a thread of supplements that we give our children? Can you list what you give your children and why? Which probiotic do you use, which additional supplements, etc? I have just come accross Olive Leaf extract and am wondering if anyone else has used it. Or what do you use as a supplement to boost your child's immunity? Can you use the same probiotic consistently or do you need to switch it every so often to introduce different bacteria every so often? Then, what do you do if your child does start to show signs of a yeast infection from the abx use? We have boosted the use of probiotics and yogurt when this happens, but I am wondering if you all do something else as well. Thanks!!

Hello again, I am confused about whether our kids are more likely to get sick in general or whether they only have a problem fighting off an infection once they get it? I have always thought it was that they couldn't get rid of the infection once they got it, thus all the horrible PANDAS symptoms. But now am also wondering if they get sick more often than other children as well. Thanks for your imput!

Hello, We have just recently completed our IVIG and had fabulous results from it. We have had 27 days of what a normal family must feel like because it has been 27 days since we did our IVIG. Our DD is coming back to us and life is becoming enjoyable. DH's father has terminal brain cancer and lives on the opposite coast from us. He just received bad results from his latest brain scan and we are waiting to hear how dire they are. However, the cancer is terminal and we have been told that he has 1 year. My husband is going to go visit his family for Labor day and my PANDAS daughter- age 3 1/2, REALLY wants to go. Since we have only had 27 days of a normal family life, I am absolutely terrified to let her go. I feel like we are sending her into an abyss of geographical germs on the plane and in the airports that she will travel through. I am still rational enough to know that this is a bit extreme to freak out that much. But part of me thinks that by keeping her here, she is exposed only to local germs rather than so many different geographical germs by traveling coast to coast. Can you guys weigh in and tell me what you would do? THe situation is dire on either side. FIL is a wonderful person and DD would provide a nice change of pace for the bad news they have just received. But I also don't want to undo all the hard work we have just accomplished. Ugh!!! Thanks!!

What a great question! ANd great timing, too, as today was our psychiatrist day. I think that the therapist has no ability to help our DD. At least that was the case until 2 weeks ago when we did the IVIG. The only benefit there was to our family was a bit of an outlet for me. Our dd is only 3 so I can still talk about her in front of her. I agree with the other posters that the CBT is not helpful when in an episode of PANDAS. I think these children are incapable of learning some things to a certain degree - CBT being one of them. We are 2 weeks out from our IVIG and the jury is still out on whether I think they can help us now. We are supposedly seeing the best in the area so I am trying to remain optimistic. Glad to see that it isn't just us that uses TV. We used to be a non-TV household. I don't know what the heck kind of house we are now. We are just trying to survive.

Hello everyone, Below are the codes that our ped used: IVIG 90283 Infusion 96365 I believe these are the hospital codes. THe CD#9 codes - which I believe are insurance codes were 279.4 and 323.41

OMG, do you need any more "She has a possibility for X"? Sorry to hear they told you that. But I am glad that the doc wasn't concerned about the actual nodules.

Hello, I got the code that our ped used for our IVIG case and will update my thread with it in just a bit. Everyone here is right, at least regarding our case, that it can't be called PANDAS. We used autoimmune encephalitis, I believe. But, I will update with the exact code on the other thread. Best of luck to you.

Is there any concern for the other siblings' immune systems if they are on preventitive abx? Will it weaken their immune systems if they don't have the need to fight things off due to the abx use? My other dd is only 2 yo so I am worried about that since she is so darn young.

OMG, this web just keeps getting bigger!!! I hadn't thought about putting the other siblings on the abx. But if you do that, what about the parents? Do they need it too? Like you, we are one week out from our IVIG with our 3 yo PANDAS daughter. I don't want to lose the effects either. It seems that everywhere I go people are telling me that their children are sick and I swear I am going crazy with fear! I'm interested to see what others reply about this. I hope that you will start to see some great results from your IVIG soon! Best of luck!

Hello, I have a 2yo and 3 yo and am constantly looking at bums. How do I tell the difference between rectal strep and diaper rash? We were at teh doc yesterday for our follow up from IVIG and the ped believes that both girls have a stomach bug. She thinks it is a stomach bug and not strep but she did say the the symptoms that my PANDAS daughter described were very close to strep symptoms. The only thing she was lacking was a fever. Last night the non PANDAS daughter had what I thought was a diaper rash but now, looking at it in the daylight, how do you know??? Most likely it is just diaper rash, but I am scared to death that it is strep. It is just in the bum region not the front. Can someone enlighten me? Thanks so much!

Hello, Here is a new update on our daughter. We had a pretty rough day on Sunday. That was the first day home from the hospital. She spent the day throwing up and had a headache and also experienced nausea. Since she is only 3 she didn't understand nausea. I could see what was happening in her body. She thought she was going to throw up but nothing happened. So, we go a lesson in the difference between nausea and throwing up. My husband and I were so sad to watch her go through this. Even though she was quite sick, I was able to see improvements in her behavior. Then, yesterday, she woke up and was able to tell me that she felt better. The first thing she said was "you said I would be better today, mommy" and smiled at me. We saw great improvements in her throughout yesterday as well. There was an incident at the playground that pretty much should have ended our day but instead she just got over it in a way that a normal 3 yo would. But the big one is happening right now. My daughter woke up at 6 am to use the potty. She looked groggy and still tired. Prior to Sat, that would have been the end of the night for us. But instead, we got her what she needed and the child WENT BACK TO BED!!!! I know there are other parents out there whose days start at 4 am when your child wakes up for whatever reason and can't go back to bed so you know what I mean by how huge this is!!!. This is amazing to me! I am still so scared though that this is somehow temporary. I have no idea how to feel about this as the parent. I'm of course happy about it but also scared to pieces that it is going to be taken away. I'm trying to live in the moment and enjoy every second of this new child.

Thanks for your kind words, all. We are now about half way through day 2. I feel like I did see some small, immediate improvements in her yesterday and they continue to be there today. However, we still see an angry child in a few instances. But, I'm not sure that is fair to pass judgement on since she has been in the hospital and in a bed for so long. The staff continues to do a great job with us and so far I see no discomfort. I've tried to check with her repeatedly for aches and pains. Other than the IV site bothering her, she seems to be doing quite well. I, however, continue to be scared to death. I'm terrified that I am pacing way too much weight on this procedure and am going to be let down. I'm so glad that this forum exists so I can unload here.

Hello, Just an update that we are here at the hospital with our 3 yo DD. We have started the infusion and are almost at the top speed for the dose. The staff have been amazing by taking things methodical and slow. Our daughter has tolerated everything incredibly well and shockingly has slept through about 90 mins so far. She had all the pre-meds. It has been incredibly hot here this week and I know my dd was dehydrated. Because of all the advice about hydration from you all, I asked that she receive IV fluids throughout the entire process and they complied happily. So far, so good. I knew ahead of time that this would be stressful, but OMG, the actual act of being in the hospital with your sweet child for such a procedure is beyond me. Since she is so young, they admitted us until tomorrow night and this is just so huge to me. I'm so hopeful that this will be a turning point for us. More later.

Thanks so much everyone for your responses and PMs. Our Ped tried the ins co last night but they were closed. She will be calling them again any time this morning and is likely going to be using 279.9 or 279.4. That is what she said last night when I last spoke with her. I will update this post with what she actually decided on and the results. She is taking the orders to our hospital this morning at 9 am and we are taking our daughter at noon. We will stay overnight and hopefully come home tomorrow. I am scared to death but incredibly hopeful. Again, thank you so much for your help! You all are the ones who helped make this happen for us!

Hello again, I can't tell you how much I appreciate your replies to my earlier post. Because of you all, we are so close to getting the IVIG scheduled for tomorrow. In fact, it is scheduled right now. There is one last aspect that I would like to see if I can work on prior to it and that is insurance. Our ped talked with the hospital that is going to administer it and it will be $10k. I know this is not news to any of you. But for those of you who have used the autoimmune encephalitis diagnosis, do you know what the code is? Our ped is also looking for it, but she also has her job to do so I thought I would see if anyone here might know this code. Thank you so much for all your help. You are a great group of parents!

I told our ped about Shae and that is why I posted this question. She said if we had PID or another "recognized" disorder we could get IVIG immediately. That is the roadblock we are running into.

Yes, she is affiliated with our Children's hospital. But, she can't order the IVIG and get it approved because our children's doesn't believe in PANDAS. This is what she has been told. Are we missing something?

Hello, Our ped is very supportive and open to doing IVIG for DD for PANDAS. The problem is our Children's hospital doesn't believe in PANDAS and won't allow IVIG to be done for "only a case of PANDAS". Our ped is working in conjunction with Dr. K, but he apparently is on vacation this week. We are hoping to do the IVIG ASAP and would rather not wait the 10 more days until Dr. K returns from vacation to find out how we can get a hospital to take us. Has anyone with "only PANDAS" (meaning no other "recognized" autoimmune disorders) sucessfully done Dr. K's protocol of IVIG at a Children's hospital? If so, can I speak with you about this? I need to know the logistics on how to make this happen. My ped is working on speaking with other docs on this, but I said I would ask you all to see if one of us could save some time in getting an answer on this. If you have a recognized autoimmune disorder, our Children's hospital will give you IVIG tonight. But since PANDAS is not on that list, we can't get the physicians there to write off on the procedure. Thanks so much!

Glad to hear I am not alone. Your story of the shoe throwing sounds exactly like something my dd would do. SO frustrating!!! I agree that this can't go on. Are we all just walking around down in the dumps or is anyone managing this in a decent way?

THanks for your responses. We were supposed to do the IVIG yesterday but it didn't happen. Now, we are waiting for next week. That is why I had such a bad day yesterday. Vickie, I also feel psychologically scarred. Also, like you, life has not been easy. We have had some pretty major health problems over the last 5 years. Prior to that, though, it was pretty much easy living. What I would most like, though, is just to accept this for what it is and move on in a positive way. Is anyone doing this successfully? I live in Seattle, WA if anyone else is local. Take care!

Hello again, I am having a very bad afternoon and feeling like there is no end in sight for this disease. I feel like we will be working towards fixing it and fighting it forever with little to show for the fight. There is no need to go in to the details of why I have had a bad day, I'm sure we have all been there before. But, can anyone help share tips on how to stay positive through all of this? I don't want to be this downbeat person. I want to be realistic about our circumstances, but I would like to remain positive and hopeful throughout everything. I am having such a hard time imagining a life wher this isn't my only priority and where I don't look at people who have a "normal" life like they are aliens. I'm assuming you can relate and am wondering how you all survive the day to day. I am a mom to a 2 and 3 year old and am so beaten down. I'm already on an SSRI. I exercise regularly. That only happens because I can take my girls in the stroller to exercise class. I never eat, drink, or sleep- well, you know what I mean. Obviously those are areas I could improve upon. Are we all walking around totally depressed or am I at the bottom of the barrell?

Sam, it is great to hear that she has improved! I'm thrilled for your family! I'm sorry to hear about the complications, but I hope the worst of them are behind you now!

Hello again, I feel like I am asking so many questions and I am sorry to clog the board. I hope these questions are helpful to other people as well. My question from yesterday spurred this one. At what point can the IVIG be done? My dd had a successful steroid burst and is doing well currently. Can we do a proactive IVIG so as not to lose the ground we have gained? Or do we have to wait for her to regress before we can do the IVIG? It seems there are varying understandings on this. I'm hoping my understanding is the incorrect one. My ped believed that we had to wait for DD to regress before we could do the IVIG. Can anyone share their thoughts or stories? Thanks so much! Kathleen

http://webpediatrics.com/

Wow! That is really interesting! From my understanding, that is directly from Dr. K. We are in a decent state after our steroid burst and I would really like to do the IVIG right now to just keep the results going. I asked this to my ped, who asked it to Dr. K. I believe this is what I understood my ped to say. I personally have not spoken to Dr. K. My ped is consulting with him. Are you speaking with him personally? If not, I wonder if I should try and set up a consult with him. I really want to stay with the progress we have made. Please feel free to send me a private message and perhaps we can chat on the phone about this? I could certainly be saying this wrong. I am still trying to understand it all myself. Looking forward to your response!