FallingApart

As I mentioned this morning, we are trying to get PEX organized for DD. All the blood that we had stored from this past summer has been discarded. I was completely devastated when I learned that because I know for sure that one of the samples should have tested high. The only sample of have of DD is one that was drawn just before this episode started. It was drawn 2 days before she got sick again so I don't know what those numbers would look like. DD is doing horrible right now with horrible rages, violence, foreign language talk, bed wetting, separation anxiety, OCD, general anxiety, etc, etc. She started steroids last Wednesday and is now on her 7th day. Would the CamKinase number still show up after being on steroids this long? She has shown no improvement and has continued to deteriorate while on the steroids so I would really like to see this number but I am concerned the steroids will cloud the number. Does anyone know for sure?

Hmm, well, now I don't actually know what the dose is. I just looked at the bottle and it says 15 MG/5 ML. We are supposed to do 5 ml 2 x/day for 7 days, then 4 ml for 7 days, etc. I don't actually know what the dosage was the first time around. Our ped prescribed the steroids the first time and this time the rx was written by Dr. latimer. But our ped does has been involved in all the Latimer proceedings and is aware of the dosage. We are currently on 200 ml of Zithromax daily.

I have been absent from the board for a bit because things are very bad over here. We are trying hard to get PEX scheduled with Dr. L for DD but are having a hard time with the scheduling. DD is an absolute mess and seems to be getting worse every day. We went out to see Dr. L last week and she prescribed steroids while we are waiting to get in for PEX. This is our second time on steroids and the results are night and day different. DD was on the 5 day dose last time and showed improvement immediately. Those 5 days were amazing. We are now on day 7 of our 30 day RX and we have seen no improvement at all and instead have seen our symptoms increase a ton! She is on 5ml 2x/day for 7 days and then will go to 4ml 2x/day etc. I'm pretty sure she was on the 5ml dose this past summer for the 5 days when she improved immediately. She weighs 42 pounds. Does anyone have thoughs as to why it would work one time and not the other?

Bronxmom, how old is yours? Mine is only 3. I am also planning on focusing on the activity part too. Thank you for the tip on protien. Mine was found to have an allergy to eggs when we did the Celiac testing. We think we will try giving them to her again after the PEX but can't just yet. We are in the northwest where it is raining like crazy. I need to figure out how to get activity into her without taking her to germ infested places.

We are currently in a holding pattern until we decide what to do next with DD. In the meantime she will be on steroids for at least the next 2 weeks. The RX is written for 5 weeks but I hope we don't have to go that long. DD has the opposite problem that most PANDAS children have. She does not have the self imposed diet restrictions, she is a really good eater and will usually try most anything. I say usually because we are in the middle of a PANDAS epispode and are now on steroids. Because she is such a good eater and because she likes milk so much, she is not super thin. I'm concerned that the increased appetite that goes along with the steroids is going to add yet another problem for us. She seems obsessed with eating candy, finding chips and needing even more milk and salt than usual. My brain is not working very well in the middle of this PANDAS episode and so I am turning to you all for help. I am wondering if you can offer suggestions on good, filling snacks for her. I know this should be so simple - just offer her a banana. But we all know it's not that simple. If she doesn't want a banana at that moment this could be a crisis for the whole family. So, I need some back up ideas. Hopefully this could be helpful to everyone who is doing and will be doing steroids.

Hi there, My DD is 3 years old. The IVIG was a miracle for us. Both IVIGs were 2 day doses and each time DD showed signs of improvement after the end of the first dose - so only half way through. She definitely does great on OVIG, it just seems her effects don't last. We haven't yet gotten her CamKinase numbers because we ran out of blood. We didn't know about the test the first time and then ran out of blood the second time. We will certainly get it this time!!!

Hello, For those who have done it or those who know a lot about it, is Plasmapheresis a cure? Our DD has done IVIG twice. At 34 days past the first IVIG she relapsed. Today is 34 days past the second IVIG and she is relapsing again. I am going in for a consult with the ped in a few hours. I spoke with the ped very briefly this morning and our ped spoke with Dr. Latimer. It appears Latimer is recommending Plasmapheresis for DD. I think I am ok with this route because I really don't want to be doing IVIG monthly. I don't have any details yet because I haven't met with the ped yet to hear what she has to say. But for those who have done it can you tell me your thoughts? Also, is there anyone on this board who has done IVIG and then went the Plasmapheresis route? Can you tell me about that? I would love to hear anything you have before I go to meet with our ped. She mentioned that we might be going to Georgetown this week. Of ocurse I will update this after we meet. Thanks so much!

yes it was.

I am also a bit confused on the backsliding issue. Melanie, I think our children had their IVIG at around the same time. DD had a backslide 20 d post IVIG so we upped her abx from 2 times per week to daily and it helped her. But how much can you up the abx? If they are already on the max dose for their weight daily, how much more can you give? But an issue our ped thinks we are dealing with is the lifespan of the antibodies. DD relapsed at 34 days last time. Our ped thinks that is because the antibodies from the first infusion were no longer working and therefore she needed another infusion. I don't know if that is accurate or if it's because we didn't have her on daily abx. But either way, DD responded immediately to the IVIG and was fine again. Is this backsliding or a relapse?

Pixiesdaddy, Your update makes me so happy for you and your family. I hope so much that the improvements continue. I believe our situation is similar to yours and understand your need for the 5 day a week caregiver and can still call it a good week. Your description of improvement sounds very positive and like things are going in the right direction. Are you planning to do only 1 round of IVIG for pixie or will there be more? I hope today is a great day for your family!

Has anyone been able to use their findings to present to the insurance company? I am pretty positive that my daughter is relapsing again right this minute. Ugh!!! Today is day 33 and last month it was day 33 as well and we did the treatment on day 34.

Hi there, I think that I may have inadvertently found a good thing. Perhaps it is a good thing because the doctor was PANDAS friendly. But the immuno doc that we are going to go see in Nov recommended that we see a neuropsych in order to get dd tested. The immuno doc said that a neuropsych does tests that are standardized and are recognized within the industry. We took this to mean that whether your child has PANDAS or not, these tests could be useful to you. OUr whole family went to meet with the neuropsych yesterday and it was a very positive experience. I do think a large part of it was likely due to her being PANDAS friendly. Last week's meeting with the child neuro was a total nightmare and he does not believe in PANDAS. I'm wondering if anyone else has done this route, what you think of it and if we should discuss it. If you have never heard of it (which I hadn't before 10 days ago) I wrote a blog post about our experience and you are welcome to read it here, http://pandasmom.wordpress.com/2009/10/09/...-pandas-friend/

Stephanie, I just looked at your blog and see that you and I seem to be in the same situation. I have a 2 and a 3 year old. I have also just recently started a blog and am wondering if you might gain anything from reading it. Our family has done IVIG 2 times for my 3 year old and we have had good results. But I also feel the same excruciating fear and despair that you do. http://pandasmom.wordpress.com/

Thanks everyone. So, are you saying then, that it should be a high dose to a max dose daily for more than a year?

I feel like this question has been asked a lot, but can we get a simple definition out there? For anyone whose child is "doing ok" right now, what is the definition of adequate prophylactic abx? What is the best drug? How high does the dose need to be? How often does the child need to receive it? For how long? It seems like most people are on Zithromax. We are as well. Based on your feedback, we are now doing it daily. But, how long should we give it daily for? We are going to see the ped tomorrow and I want to tell her the dosage change we made and suggest we keep this change for x time. But I don't know how long that should be for. Is the daily recommendation for 1 year or is that for the "until PANDAS is a distant memory?"

Can you send them outside to play? I wouldn't let the neighbor girl in last week with her cold and my girls were not allowed to go in her house. I will let the other expert parents chime in with other advice, but I would quickly get the children out of your house.

I've been wiating to post this until I tried it out and saw the effects on our own family. Below is a quick background and then the effect on our family. My BIL was an Olympic hopeful althelete for Australia. When we first met him, he was alwasy drinking cow's collostrum shakes and our family thought he was wierd. We asked why and he told us that it was great for building muscles and was an athlete thing. That is pretty much what I remember from the story initially. Well, when DD got sick, BIL immediately told us that DD needed to be drinikng collostrum. He said that in addition to whatever else he was using it for, it was also an immunity booster. He drank the shakes for 3 years and was never sick during the entire time. At that point, that was all we knew about it. My sister and BIL then looked into it further and the main ingredient in it is immunoglobulin. Now, granted, it is from a cow. But, when I heard that, I was all over it. Our family has been using this for about 4 weeks now and we have seen very good results. I know that my DD got sick last week but I believe that is because we slacked off in giving it to her. We have tried to slip it into the girls milk, but they can tell the taste difference. So, we have been making "milkshakes" and they think they are fine. My younger DD (2) isn't a fan of any type of milkshake and only drinks a few sips. But my PANDAS DD drinks the whole thing. And right now, my younger DD has green boogers and a cold and the PANDAS DD does not. Last night we refroze the milkshake and will try giving the girls just "ice cream" today. If anyone is interested in this, let me know and I can get the brand name and ordering info. I'm a bit worried you are going to think I'm nutty. But, when I read Manda's post, I thought it could maybe be one more thing that might be bale to help her and that others should know as well.

Manda, Pixie sounds just like my DD prior to the IVIGs. I've ben absent for a few days and haven't seen this post until now. But my response is to up the antibiotics as well. When DD had her setback at only 20 days post IVIG, I asked why this would be. The other parents mentioned we were likely on too low of a dose of antibiotics. Since that post, I've been doing daily Zithromax and DD has gotten better. I know that Zithromax is a different drug than you are taking, but I would also like to chime in and recommend you upping the dose or frequency of the antibiotic. Our example was that we were supposed to give her Zithromax 2x/week for the next year. She got a cold and the ped said to give her 3 straight doses and go back to our 2x/week. But, you all said to do the daily dose. That is what we have been doing for over a week now. The setback lasted 2 days and we are doing pretty well now. Manda,, I know what it is like to go through the day with your raging child who needs you 24/7 while you have a migraine. I had a migraine that lasted for 5 weeks from this. And when DD relapsed last weekend, I actually wrote in my blog that I wasn't sure I have the phyisical and emotional energy that it takes to care for this child right now because I haven't recovered from the last episode. I'm also going to make a separate post now about cow's colostrum that is an additional supplement that I might want to recommend to you specifically.

Does running the toothbrushes through the dishwasher do anything for us? Or is that just making me feel safer but isn't really doing anything. I run them through the dishwasher each week. I've been thinking about using a wipe on the tube of toothpaste as well.

So, based on my post about our 20 day post IVIG setback, it appears we are not on enough abx. If I up DDs meds to 200 mg Zithromiacin daily, what do you do before the dentist visit? Do I give her a different, additional abx? Or an additional dose of the Zith? ALso, for those of you who have the siblings on abx as well, how often do you give it to them? The ped has our non PANDAS child on Zith 2x/week. Would you want that child on abx daily as well or is 2x/week enough?

Very interesting- DD weighs 41 lbs. EA Mom, didn't your DD just do IVIG as well? How long will she be on this dose for? My ped is open to listening to whatever I suggest. I also have plenty of meds to just start giving daily meds to DD. But, our ped said that the half life or the shelf life or whatever it is called-the time it stays in the body to fight off an infection is 3 weeks. So she said that DD's body is protected from infection for 3 weeks after taking a dose. Now, she did say this several months ago before we really knew exactly what we were dealing with. I'm happy to up DD's meds to every day. I'd love more input from all of you.

She is on 200mg of Zithromax twice/week as a preventetive abx. The ped said to give her 1 full dose, which would be 3 days, as an additional.

It is very interesting to see that many parents on here have their own neurological problems. I, also, developed a strange neuro problem 4 days before delivering my PANDAS dd. I am scared when reading about lupus and the mention of the potential of passing lupus from the mother to the fetus. I have not yet been diagnosed with Lupus, but it is a possibility. I'm not trying to find another disease for my child, just trying to find answers....

So, an update is that yesterday was better than Saturday. Not perfect, but better. I will certainly take better!!! As long as we don't go downhill, I can probably handle it. Yes, she is on full strnght abx. But a question there. The ped said she should do 3 days of Zithromax and that is equal to one full dose. Is that accurate? Or should we do more? That is a good call on the animals. I am pretty good about washing them, but will gather them all again today and do them, just in case.

I completely agree about the loss of your own brain. Mine isn't functioning as well either. I do understnad your question and yes, she is definitely better even though her symptoms have returned. The rages are very short and the behaviors are manageable, they are all just there. And they take so much effort and energy to manage. We do have a dog and did have him tested. He was negative. I also had some abx that I never used on DD that I gave to the dog just in case. I'm wondering if when we were at the ped's for our regular consultation if she was exposed to strep.