FallingApart

SO I have spent most of my stolen moments this afternoon looking at childhood schizophrenia. On schizophrenia.com there is a lot of good info. They also mention all the different illnesses that should be ruled out before you get to a schizophrenia diagnosis and they actually mention PANDAS on there. But for some of us who have super extreme cases, I am wondering if it is possible that we could get a PANDAS diagnosis when there might be something else/in addition to the PANDAS diagnosis. Things are so incredibly bad over here that I am just wondering if there is even more to this than "only" PANDAS. I have no idea if it is schizophrenia or if there is actually anything else. Maybe we just have one of the most extreme cases...

I have no scientific background for this but I have also had the term schizophrenia cross my mind many times during all of this. Does anyone know if they are actually related?

Our second test was 189 and we have every symptom. All of our symptoms are extremely severe with the exception of tics. They are mild.

After I posted this I thought about the fact that the ped might prescribe Tamiflu. LLM would you advise against it entirely after your experience? I do have the oscio stuff and will start with that this morning right away. I'm glad to hear that this isn't an absolute horrible setback for everyone. I am also completely shocked to say that PANDAS DD is actually being VERY nice to me this morning. She is following my directions when I give her instructions that will help her feel better and she is being polite to me. I'm completely flabbergasted!!

Alex, your post scares me to no end. But it is because of your post and MomMD that I have one thought for you. Prior to doing PEX, we did 2 rounds of IVIG and got literally instantaneous results. We had 31 days of bliss each time. Then on day 32 life returned to hel!. It was after the second one that we decided to do PEX. The week before we were scheduled was when your post and MomMD post showed up and I was terrified and devastated. Like you, I think that Dr. Latimer thinks that a one time PEX is the all out cure. However, 2009 has been such a hooror film for us that I simply coudn't leave the hospital without any other information on what to do if we found ourselves in a situation like what I have seen posted here. We live in Seattle and getting to see Latimer is not a simple task. During one of the pharesis sessions I asked Daisy some questions. I told her that getting results has never been our problem but that keeping them is the challenge. I asked her if she sees that IN GENERAL with all auto immune diseases - not just PANDAS. She said that sometimes they do. I asked what happens in that situation. She said she had no knowledge with PANDAS, but with other autoimmune diseases they do PEX then use the appropriate drug to get the patient back to baseline. Then if the patient spirals out of control, they will do another PEX. Some patients require only one more treatment, some every six months some even monthly. But she had no knowledge of PANDAS specifically. I felt much better getting the worst case scenario. I feel Dr. Latimer thinks one PEX and your done and I am terrified that is not the case. I'm wondering if in the PANDAS case, the drug to get the children back to baseline is IVIG. I would love to hear others' thoughts on this. I breifly mentioned this to our ped and she thought it made sense. But we are only 7 days out and are still waiting to see effects from the PEX. But now that we have the flu I am scared, scared, scared!!!

To add one more layer of negativity to my story from yesterday, DD woke up in the middle of the night with a fever, headache and bodyaches. Since she is only 4 and this is the first time she has used words to describe an illness. Having just had the swine flu myself, I'm assuming this is either the flu or the swine flu. Has anyone who has had PEX encountered the flu? Anyone gotten it so shortly after PEX? Should that fact add to my stress level? I believe both of my girls have it (DD2 and DD4). Any advice on what to do? I saw recently that someone posted about using Valtrex for viruses. I was going to ask our ped about this in general. Any thoughts on that? Thanks so much!

she turned 4 last week

We had one done just about a month ago. It was done for insurance reasons also. We wanted to show what she looked like pre PEX and post PEX. EEG was "fine". The neuro who did it for us thinks PANDAS is a farce and all we were told was that the "EEG was fine" So I don't know if there were any spikes or not.

Do you have access to a neuropsychologist? This person can provide cognitive testing both before and after IVIG/PEX. You/neuropsych can then take this and show it to your insurance company to show why the IVIG was necc. If your son is in a horrible state, you can fill out the test yourself rather than him. I filed it out for my daughter. I feel like we finally have a case for the insurance comapny that shows DD is one way without IVIG/PEX and another way with it. I think these tests are very key. Perhaps there is another profession that can provide them to you as well, this is just the route we used. We did IVIG in hospital 2 times. The cost was approx $15k each time. That was 2 night stay.

Thanks everyone! It is helpful for us to hear that not everyone had an instant change in their children. I know this is unrealistic to expect, but we did see it with IVIG and I was thinking for some reason it might be even better with PEX since PEX is a bigger deal. I want everyone's children to be 100% fine, but it is helpful for me to read that not everyone's is/was right away. As far as how she looks. That seems to come and go too. When we were still in the hospital, I thought she looked a bit better. But somehow, the steroids seem to be doing worse things to her even in just these past few days. Her cheeks are enormous and iti s really hard to get past that to look at her to judge how healthy she looks. I know exactly what you are referring to though - the just looking healthier - because we saw it with IVIG. Right now it is just really hard to judge because she is not looking her best. Does anyone have any tips for trying to reduce the weight that was added with the steroids? I'm so thankful that she is young and has time to grow vertically. But I am worried these effects of the steroids will be around for a while! The learned behaviors is a good thought. I just met with the neuropsych again today. (If there is anyone who hasn't done this yet, I can't say enough good about it. Ours is PANDAS friendly though- so that would make a big diference). They came and observed us prior to PEX and I think they think our situation is even worse than we think it is! It was so validating to get someone else to see how bad it is. They said we need an aide to come in to help her learn problem solving skills. I was so thankful that a professional suggested this and is going to help us set it up. I believe that DH and I are very good at this, but we are just out of energy. I have a question. Perhaps there is no answer though. Does anyone know why IVIG could work so quickly for us and PEX would take longer? What would the reasoning be? When I wrote this post, DH and I had just had a talk about learning to accept our explosive child permanently. We had all but given up hope. Thank you for your support and your stories. Perhaps we can pick ourselves back up once again and keep hoping!

Hi everyone, I've been away for what seems like forever. We were at Georgetown last week for PEX and the one thing I forgot was my computer!!! We are back home now and settling in. We did the PEX and the folks at Georgetown were fabulous and did an amazing job. While we were there we saw a few very minor improvements in DD. She was able to sleep a bit and her drawing abilities returned. But her behavior is still terrible. In fact, it seems worse!!! The fact that we saw some improvement in the hospital made me think this might be like the IVIG where we saw instant improvement, but so far it is not like that for us. Upon returning home, DD's behavior seemed to get worse than before we even left for PEX. I understand she has been through a major trauma and i am so hopeful that is what we are seeing in her are the effects of the trauma. Her art skills are amazing and she sings now. That just blows me away. But I am just so stuck on the behavior. It is so hard to make it through the day when your 3 year old is throwing chairs across the room because you told her no or her tower fell over. I don't mean to be a downer over here. I almost didn't write but I knew that I would want to hear how someone's experience went, so I am filling you all in. Of course, I will keep everyone posted at any improvement we see. If anyone else who has gone through PEX feels that their situation was like ours, can you please let me know. DH and I are in need of some hope. And on top of all of this, DD has gained a TON of weight from the dreaded steroids. It is so sad to see. It is like the problems just keep mounting. Now I just hope we don't get hit with DCMom's insurance problem!!! Ok, I hope my next post will be more positive!

Question re: advil. Do you give the standard dose for the child? Or a larger dose? And do you do it every 6 hours or just twice a day? How long is it safe to continue giving advil regularly to our children? This last week we were concerned that DDs liver was failing because she was yellow. We ran labs and she is fine. Our ped thinks that the yellow-that then turned into severe paleness-is a function of the PANDAS taking a toll on her body. But it scared me to pieces thinking about all the stuff she takes.

We realized we had a serious problem at 3 years and 2 months. I was at a loss to figure out what it could be. I had considered PANDAS because it came on so extreme and so suddenly, but at that time I dismissed it because DD didn't have strep. Now that I know what I know, we are clear that this is PANDAS and both myself and our ped believe she got this for the first time at 9 months!!! This board is so helpful in telling me what other tests to look for and treatments to do. I feel we have one of the extreme cases and I am hopeful that all of your advice and the hard work of our ped and the other specialists will all pay off when we go for PEX next week. We will be in the hospital receiving PEX on DDs 4th bday.

Thanks EA Mom. That is what I needed to know: whether she is in the PANDAS range or not. We are going for PEX on Monday. We were going regardless of the results of this number but it is nice to have something confirming our diagnosis. How is your daughter holding up?

Mom MD, so glad to hear this. I have thought about you a ton this week! We go for PEX next week and your story scared me so much! Is your son back to baseline after last week's setback? I've been off the boards most of this week, so forgive me if this has been posted already. I'm so hopeful for you and all of our families!!!

This is the only number I have received so far (no anti-neural anti-bodies). I just spoke with our ped and she said that it should classify as PANDAS. But I'm still confused as to what the number really means. This is our only sample so far that we have sent in for testing of DD's blood. All the others that I thought we had stored from the summer had been discarded. This sample would have been 6.5 weeks past her second IVIG.

I know there are so many questions about the Cunningham numbers and I apologize to add one more to the mix. But what number indicates that your child has a big case of PANDAS? We did send our sample in to Cunningham even though DD was on steroids and had been for over 7 days. Our results are as follows but I don't actually know what this means: DD CamK score... 139 normal age matched control 98 the score of 139 falls just below the median for the Pandas group Does this mean that our blood says we don't have PANDAS?

Does anyone know what this pure pyruvate supplement is and whether we should try introducing it to our children? Perhaps that is the dumbest thing I could say. But this morning has looked like a scene from the exorcist at our house. No joke.

That is so wonderful! I was wondering how you were going to fare at the 4 week mark. It seems that it is going well and I am thrilled for you! I hope she continues to improve!

Eileen, I've been thinking of you every day and wondering how things were going for you. I;m glad you are home and that it is over. I;m very much looking forward to your update.

Here is an update from last night. Again DD is 3 so the method of giving her supplements has to be considered. We gave her 3 sprays of time release melatonin. But since she wouldn't be able to do the actual spray, I sprayed it into a syringe and then gave it to her orally. Then I also gave her half of the smallest adult sized GABA sublingual tablet. We did instruct her to put it under her tounge and leave it there till it melted. Luckily she is a child that likes to suck rather than chew, so this worked for her. All in all, I think this was a lot of supplements for her. But she was exhausted and was telling us that she wanted to sleep. She instantly fell asleep at 6:30 and slept until 2:30. She started to wet the bed but didn't go all the way and ran to the bathroom and then told me we needed to change the sheets. When I came down to her room, she was resting in her tent. That was how I knew she would eventually go back to sleep. She wasn't raging or playing, but resting. After DH and I changed the sheets she and I climbed into bed. It took about an hour of my rubbing her back and legs, but eventually she did fall asleep. I stayed the rest of the night with her. She woke up a few more times, but when she realized I was there, she went back to sleep until 6:15 this morning. Who knows if that was a one time deal or if we can repeat it tonight. But you can be sure we will be doing that exact same ritual each night until we get to do PEX!

I didn't know that about the supplements. I will think about adding them for her. Yes, she did start the prednisone. But this waking at 4 am happens with each PANDAS exacerbation-steroids or not. DH and I have certainly been wondering if the steroids could be adding to the sleeplessness though. Since it is already half way through the day, could I give the steroids to her 3 times today? 4 this morning and 2 this afternoon and 2 tonight?

Elizabeth, do you know the thinking behind the calcium and B-12? Why was your child taking those? Also, for the time release melatonin...I think this is a great solution. But DD is only 3 and I can't get her to take a pill unless it is something palatable that she can suck on like a tic tac. We are doing the liquid melatonin. I can put something tasteless in her drink or something gross tasting in a syringe followed by a tic tac. Do I have any other options?

Hello, I know we have talked a lot about sleep but I don't know if anyone else has this problem other than us. DD is in the middle of a PANDAS episode right now and it is not good. I don't have much energy to write but I feel that our situation mirrors pixiesmom in intensity. DD is completely exhausted. We cannot give her Benadryl or it will have the opposite effect. We have been giving her Melatonin, Kids calm and epsom salt baths. We have been successful in getting her to fall asleep. But, she wakes up at 3:30 or 4:00 am each day and cannot fall asleep again. And then the rages start. For the rest of the day. In the past we had tried giving her Benadryl at 3:30 to try and drug her to sleep but it backfired. Our ped recommended GABA if she was unable to sleep through the night. However, given how bad things are over here and the effect Benadryl has, I wanted to check with you all first. Has anyone tried this? Our ped said it "should" help someone get an uninterrupted night's sleep. Also, I know people have mentioned 5 HTP. Can this be used in conjunction with Melatonin? What is its purpose? To fall asleep or stay asleep? I know the Melatonin works for us so I want to keep that one. But we all need some sleep over here and are wondering what else we might be able to add. Does anyone have any thoughts? Thanks so much!

SF Mom, wouldn't the IVIG help to lower his number also? Do you think it is in our best interest to do the test or not do it since she has been on the steroids for 7 days?