FallingApart

The info I was reading on chelation was regarding adults. It makes sense to me that their bodies might have toxic levels of these heavy metals but our DD is only 4. Is this really a concern? Chemar, I see though that you are saying you have done this (or something similar to it. I'm still learning what this process is). How did our sweet children get these terrible metals in their bodies??? Not that I really expect anyone to answer than question, I'm just a bit shocked.

Hello, I know this is a very old post, but I'm wondering if this is something that people are doing and if so what the results are? I've come across this in the reading I have been doing recently and am very curious about it. We did have a concern about heavy metals and our DD and had her tested for a variety of them at the end of the summer. DOes anyone know if it's possible to test normal on the blood test but still have high levels of heavy metals in your body? Thanks so much!

Gina, Where did you get all your inflammation knowledge from? Did you get it from INflammation Nation as well or from Dr. Weil or somewhere else? Have you seen a nutriotionist/dietician or any other professional or did you do it all on your own? I'm thinking that by the time I do all the reading I might know as much as the professional who will never have heard of PANDAS. But any insight you have is greatly appreciated. Thanks so much! Does magnesium have anti inflammatory properties? I've always noticed it to have a great effect on DD but I don't know if it is touted for being anti inflammatory. I will need to look this up.

Ok, this is what I wanted to clarify for myself. Thank you. So, PANDAS is an inflammatory disease. Has anyone here tried an ant inflammatory diet with your child? Dr. Wiel or Floyd Chilton? I am currently reading Inflammation Nation and am starting to think that I might be on to something here. This, along with Turmeric...This theory talks about reducing chronic inflammation in your body with certain foods. Has anyone else tried this?

Hello everyone, I feel that we have been at this for so long that I have possibly lost sight of the most basic concept of PANDAS. How much of PANDAS is an inflammation problem? Am I corect in thinking that the whole issue with PANDAS is that is causes inflammation in the brain which then causes all the "stuff" that we as parents are seeing in our children? I'm not trying to minimize what PANDAS is, but I am not sure I have been focusing enough on the actual inflammation part of this throughout all of this. I think I might need to go back to the basics here but I can't even remember what the basics are at this point....

We are doing every 28 days at 1g/kg. But so far we haven't made it through a month without a major breakdown that required steroids. We are also learning a lot over here. I think there is a much higher degree of inflammation that we originally thought. But, now, what do we do with this knowledge???? Ugh...

i try to cook with tumeric...will that help? or in these cases do you need it more concentrated like curcumin....and what about the spice cumin???? i've heard tumeric is good for aurthritis and an anti-flamatory..i know some use it for that and it helps!!! The reading I just did today said that cooking with it doesn't provide much benefit. Not much of the turmeric is absorbed. I only saw this on the wikipedia site, so I could be wrong... I thought the same thing...

Chemar, Is your son seeing a dietician for this? Or are there sites that you would recommend as particualrly helpful for this diet? I've done some reading but so far, things seem more vague than I would like. Do you have any tips for me? I'm thrilled to hear that this is helping you. As I was reading about it today I was really thinking that this is something that could be really helpful for us.

Hi everyone, Has anyone used turmeric as an anti inflammatory for your child? I've seen this referenced on other sites but it didn't actually dawn on me that it could be useful to DD until this afternoon. DD clearly has an inflammatory issue. I know that PANDAS is inflammatory itself, but we can't seem to get this under control. DD has been on steroids twice since Jan 31 with an IVIG in between. Thankfully, the steroids do seem to be working, so this is providing some data to us. But, I don't feel that we can just keep giving her steroids. Maybe I'm wrong and I'll just get over it, but I get so nervous giving them to her each time. I've just come across the idea of an anti inflammatory diet which I am looking into. But I also have been reading about turmeric as a natural anti inflammatory. I'm wondering if anyone else has done it. If so, has it helped? Also, does it interact problematically with antibiotics? How do you give it? DD is 4. She will allow us to crush up a pill and dilute it with water and administer it via a syringe. I wonder if I am in the dark ages that I haven't considered this before or if no one else has heard of it either. I hope everyone is well!

I was actually just reading about this! But as a more broad range topic. I have come to realize that our DD has a problem with general inflammation. She clearly has PANDAS, but since Jan 31, she has already been on steroids twice with an IVIG in between them. Another mom who has an autoimmue disease herself asked me if we had tried an anti-inflammatory diet yet. I was just looking this up this afternoon when I came across the fish oil as part of this diet. I'm very interested in it but also a bit dismayed because I feel like DD is already naturally drawn to these foods anyway. I'm interested to read the rest of the replies. I'm also interested if anyone else has tried an anti inflammatory diet with their children yet?

DUT, we have used GABA and I can tell you our regimen. I think you know that we, also, had the 8-11 times/night wakings. I still haven't recovered from that. I feel I have PTSD from it. Seriously.. At the height of our sleeping issues, we gave DD 3 mg of Melatonin and 1 GABA pill (can't remember the dose. But it was an adult dose. Sometimes we broke it in half, sometimes we gave a full pill). We also did Kids Calm throughout the day and for sure, right before bed. We also had her soak in Epsom Salt baths each night. When we used this regimen, we got the best results. Now that she is sleeping better again, we do only the 3 mg of Melatonin each night before bed. Since you and I have the same ped, you know that she is a big believer in using melatonin to put the children to sleep and GABA to keep them asleep. However, when the situation gets bad, these other remedies are ones I would try as well. Good luck!!!

I agree with JT. This also sounds a lot like what we are doing with our DD. Our people call it ABA. But it is working on the behaviors that are so detrimental to your household. They are behavior therapists that have been immensely helpful to us. I agree with JT that not much helps when the child is sick. But we did hire the behaviorists to come specifically for when DD is sick so that they can see what we go through and offer suggestions. There is a HUGE difference in the amount of struggle we encounter with the behaviorists when DD is sick vs when she is healthy. I also second the Explosive Child book. But every family's situation is unique, and having a consultant come to your house to guide you can be extremely helpful. THe people we are working with work mostly with autistic children. But they also have had children and adults with mental disorders as well. I found this very comforting to know that they have success in modifying behaviors of some extremely challenging individuals. They have helped us immensely.

I don't have an explanation for you. However, we have the dame situation over here. EVEN with IVIG. I was thinking that it was because it was winter and she is exposed to everything. And also because we believe her sister is a strep carrier. But, it is interesting to see that you see the same situation and that they see montly situations in the AUtism world as well. Now, what do we do with this info? Like you, I am going nuts with this constant cycle that doesn't seem to get any better... Congrats on the baby. I can only imagine hoe full your plate must be!!

dcmom, this is exactly what happened with us with our DD. Our first steroid burst (5 days) was a miracle and the second (4 weeks taper down) had no effect. We went to PEX 3/4 way through the failed second burst. Then PEX didn't work for us either. It was a very dark time for us. We don't have any explanation for why the steroids didn't work the second time. I would love to know why they didn't work. DD has a cold right now and the ped wants to have her do 5 days of them if she tanks with this exposure. DH and I are pretty nervous to try any steroids again. Will your insurance approve IVIG? If so, I think you know, this is the route that is working for us. I am all too familiar with how bad this is when the steroids don't work. In fact, we had what seemed to be "roid rage" from the prolonged use of them on top of everything. It was horrible!!! Dr. L told us to give it time, but time didn't work for us. We did all 4 weeks and saw 0 improvement. I would love to hear if she has additional thoughts when you update her on your situation. Good luck!

I didn't realize that it might need to be more than one poke. If we end up doing IV abx for the non PANDAS DD that is the carrier, it will be over 10 days time, so I would think we would be able to draw from it on multiple days. Our ped said they can leave the IV in for 3 days at a time, so 4 pokes total.

just an fyi... we used diazapram for this exact reason. it backfired on us. It did in fact make DD more calm, but somehow, it made the actual poke itself 900 times worse than without the drug. I agree that buying her worked the best in our situation.

Guys can you explain "get tested" to me? I mentioned this to our ped and she said that getting our family's ASO (I believe that is the one she said) would only tell us if we had been exposed to strep in the past year. Can you explain this to me? I'm sensing that there might be more to this story.

A couple of thoughts: our non PANDAS DD has been on prophalactic Azith twice weekly for 6 months. THat is why the ped didn't prescribe Azith for this. We are working on asking a compounding pharmacy to make something for us but they were closed over the weekend. As for the labs for this daughter, now I am a bit scared after reading your post, Wendy. I agree with you that we should test her. But, this DD is the most even tempered, sweetest child in the world. She really has no issues. So, when we figured out that she has had strep for over 2 years, the ped and I were thrilled and assumed this meant she would be immune to PANDAS. But I think what you are telling me is that this is not necc the case. Is that right? Lastly, the cream that the ped prescribed way back when actually was an abx cream which is why this kept clearing up on it's own...

Hi there, I know there is a very similar thread going on right now, but I didn't want to derail it with this question and story. Just a quick recap. We have 2 children that are 17 months apart and are now 2 1/2 and just turned 4. Our PANDAS daughter appeared to have gotten PANDAS out of nowhere on Jan 1st 2009 after the baby got scarlett fever. Fast forward to now - One PEX and 5 IVIG's and only temporary and day long relief for our family during all this time. Our youngest daughter has had a horrible diaper rash her entire life. When she was 9 months old, I took her in for it and the ped told us to use triple paste ointment which didn't work. Then she gave us Slivadene (?) which seemed to calm it down. Our youngest would get this rash all the time but soon we were dealing with PANDAS and I didn't have time for really dealing with this rash. Well, our youngest had the rash again last week and we were out of the cream. I asked the ped for a refill and a lightbulb went off in her mind that the rash oculd be strep. So we cultured our youngest and it is STREP!!! Our youngest has been cultured many times this past year and has always been negative. But each time she has been cultured, she didn't have a diaper rash. The ped, my husband and I are floored!! The youngest is the carrier! And she gets this rash ALL the time!!! But, or course there is a problem. We tried to give our youngest the abx of choice and she is unable to do it. She keeps throwing it up. She has a horrible gag reflex and is completely unable to palate the clyndamiacin. My question is whether anyone else has the carrier living in their house? Were you auccessfully able to eradicate it? How much does fixing the carrier improve things for the PANDAS child? Thanks!

This website has info on all the drugs associated with the recall. http://www.mcneilproductrecall.com/ I'm a bit nervous because we just finished our monthly IVIG and did round the clock ibuprofen and Benadryl. Of course I ran out during this time and just purcahsed 7 more bottles on Thursday. I will have to read this closely. Thanks for bringing this to our attention

I'm sorry. I misunderstood. We are on our 5th IVIG and all have been consecutive days and at the dose you mentioned. Did they say why they are doing it that way?

that dose should be 1 mg/kg EACH DAY. I found this confusing for the first few infusions. Good luck to you. We are in the hospital right now doing our monthly infusion.

Hi there, DD does not have tics. Also, when you say she doesn't have diminished motor skills, you may change your mind as time goes on. DD just turned 4 and when her PANDAS started she had just turned 3. Throughout this past year, I definitely watched her gain and lose moor skills. At this point she is very behind in all types of motor skills. Keep looking for a ped or other specialty that will support you.

I agree with Vickie. I'm not concerned about DD's perception at this point. But, if this is still happening in jr high/high school, I will be really concerned for how the other kids will treat her. I'm glad to hear that you are saying it isn't horrible. As for the hypervigilant, I wonder what word they use for me in our chart!!!

We test the ASO titers and Anti DNASE B numbers each month. If things are going hunky dory and these really are just a preventetive treatment, I would imagine those numbers should stay stable. But this month was pretty rough for us so to see that one of the numbers was elevated makes me pretty happy. It shows that her body has an infection in it. Maybe someone else can explain it in more detail. I fully believe that her behavior was directly related to this infection. Since we are still in the hospital, I can't truly assess her behavior yet, but will keep people updated.