FallingApart

Can you tell me how you culture your dog? I called our vet after reading this post and they told me that the dog can't pass it back and forth to humans. I aid I wasn't concerned with that explanation that I just wanted him tested. They want me to come in and have a discussion about how best to culture him because they said there were different ways to do so. I think that I need to find a different vet. But, while I'm waiting, can you tell me the method used to culture your dog? Throat swab, urine, skin, or blood? THeese were all mentioned to me on the phone. If your dog does have it or is a carrier, is one round of abx enough? Or do you have to keep having him/her cultured and redoing the abx?

Has anyone has minerals or heavy metal testing done while any of the blood work has been done? We are still at the hospital waiting to be discharged. Our ped has not seen these results come in yet and is still waiting on them. She does not think that I am off base and thinks perhaps we could have 2 things going on. Before everyone else rushes out for more bloodwork, I will let you know how ours turns out. Since we actually did have a kiln in our house from the previous owner for up to 40 years.

Thanks everyone, I was too worn out last night to give too many details but perhaps I can provide a few more here. DD literally had a new PANDAS symptom surface every hour that afternoon. But, since they look like behavioral issues, and we were supposed to be healthy, I just thought she wasn't listening. And of course there was a lot of yelling in our house. Mainly by me. And I spent the whole night wondering if I was over reacting and there was nothing wrong with her and that she was just being a kid. (This disease really does waste a lot of people's time and thought processes). But the last straw for me was when I went out to the car for 30 seconds and returned to find both children, the cat and the dog on the kitchen floor eating cat food (The eating cat food has been one of her "Wierd things" for as long as we can remember). I yelled and my younger DD said "Sorry mommy, the dog and cat moved away from the food knowing it was wrong, but the PANDAS DD just sat there looking at me. She wasn't inside herself in any way. I completely lost it right there in the kitchen and pretty much haven't stopped crying since. As for why this happened. Our ped also agrees with all of you that the lifespan of the antibodies is over and DD's body is working on its own and therefore is not working. As for the plan going forward - we don't have one. We have insurance to do this 1-2 more times and I think our ped will now do this preemtively for sure. But she is also planning to call Dr. K to see what he recommends. The other thing is that we are waiting on the results of the blood tests from the lead and manganese from my post from last week. She would be on Zith 2/week. It is 1 tsp each dose. I think the box says 500 mg, but I'm not positive. I also have her on multivits, kefir, magnesium (not manganese ) but nothing extra for immunity boosting. Still trying to figure that one out. Please let me know if you have thoughts on this and any reccs.

HI everyone, Just to update you from my earlier thread from 2 days ago. In our case, the OCD behaviors were not a minor blip. We very quickly relapsed into a full blown PANDAS episode. All of her behaviors came back. The whole thing took from 4 pm until 11 am the next day and all the behaviors were then present. They were quite mild compared to where we were before our first IVIG, but they were all there. Our ped decided to send us straight to the hospital to do the IVIG. We are in the middle of the second dose right now. I don't think I have ever felt this low in my whole life. Watching it come back that quickly and that wholly was absolutely devastating. I feel like I am losing my ability to function. If anyone has any tips on how to stay strong, I could use them. Thankfully my husband returns tomorrow but I don't know how much more depleted I will be by then even. I'm not trying to complain. I just know that you all understand. I am really and truly at a loss as how to pick myself up and go on. On a side note: this nurse CLEARLY does not understand how important sleep is to a PANDAS child. I've asked her 900 times to shut up and let her sleep and she keeps messing with her. DD slept for 3 hours last night .

No help here, just chiming in support. I, too, would be freaking out!!! Do you have a good ped? Or are you seeing Dr. K or Latimer? I would get the next consult available if it were my child. But I am a worrier. I will be interested to see what others say.

Thank you so much everyone! She is on Azith - twice weekly. Those of you who go to an immuno-can you tell me how you found one that you liked? DO you mention the word PANDAS? I feel that if I mention that, they will dismiss me. I also feel like we have had every blood test under the sun done. I don't know what in the world all the Iggs are, but I feel like we have had them all tested. Could an immuno do more for us? I am happy to go to one. I just thought that since the IGgs that our ped tested for came back fine, that we didn't need an immuno. This is SO stressful. The aggressive behavior towards her sister is now starting as well. I just want to cry and do not see how I am strong enough to do this again. In no way did I even start to recover myself in the 5 weeks that we had a healthy child after her IVIG. If this were your child, would you be thinking this was just a temporary blip or would you be freaking out as I am? My mother's intuition tells me that this is not just a bad day/week. But I don't want to overreact.

July 31-Aug 1 was the IVIG Since I wrote this last night, ALL of her OCD beaviors have come back as well as most of her PANDAS behaviors. I was up with her most of the night trying to get her to sleep. She got about 6 hours of sleep, which is typical for a PANDAS episode. Plus, her ability to listen and follow directions seems to be plummeting. This all seems to be happening at the same time. If I am honest about the timeframe, I would say this started last weekend when we attributed it to lack of sleep. I now believe this to be another PANDAS episode, but wanted to check in with all of you to see what you thought. Our insurance said we could do another IVIG one month after the first. We are going to the Ped this morning and I am hoping she sends us to our hospital directly for the IVIG. I don't think I am strong enough to go through this again. And of course, this is the one weekend DH is out of town. I haven't slept or eaten since he left!!!

Hello, We are in our first relief from PANDAS and I don't know what to expect from my child. Obviously I want her to be 100% well 100% of the time. But can you tell me what you see in your child during a time that they are well? Do the OCD behaviors wax and wane and the child can still be healthy? DO other PANDAS symptoms show up from time to time in small doses and your child remains healthy or does it mean a PANDAS episode is imminent? I am specifically referring to an instance of an OCD behavior that showed up today in DD. We haven't seen this behavior since the IVIG. My child hated cracks in the ceilings and walls prior to the IVIG. We were not able to go in restrooms that had them and had to cover up any imperfections in her bedroom every day. After the IVIG, this OCD behavior magically disappeared. Today, out of nowhere, she mentioned it in the parking garage. What do I make of this? I, of course, freaked out inside. I asked her how she felt and she said she felt fine. But she is only 3. Most of her other behaviors were fine aside from that. I noticed a few other minor OCD things today as well, but only because I was on the lookout for them. Does this happen in your children who are currently not in the middle of an episode? Or when they are healthy, are they 100% healthy? Thank you so much!

What about the S. Thermopolis? Does that one have it in it?

Our ped recommended Jarrodopholis. We use 2 capsules in the morning and 2 at night and put it in her milk. But, I also would like to know what others use.

Just an FYI. DH and I went the magnesium route. I did quite a bit of reading on it yesterday and that is the route we chose to start with. We did one Epsom salt bath and did the CALM at night. Whole Foods was out of the Kids CALM. Because DD took a nap yesterday I was pretty anxious about her sleep. So we decided to give her a very small dose of the adult CALM. We did 1/4 tsp mixed with sugar and water. DH said she was so tired at bedtime that it was like we had given her Benadryl/ She went right to sleep with no snuggling. Who knows if it was the magnesium or if we were just having a good day. But...we will be using the magnesium in our house. A few questions though. Do you also use melatonin in conjunction with this? What form do you give it in so that they will tolerate it? Also, for Epsom salt users, how much do you put in the bath? The Epsom Salt Society said to use 2 cups per bath tub. If I do that, I will be going through a box a week. Can you buy this in bulk somewhere? Also, do you feed your children any foods to combat diarreah? THen, my last, but possibly most important questio in whether this is helpful when your child is in a PANDAS exacerbation? Right now, we are in a calm and are still having sleep problems. If we regress, can this be something that will possibly help us? I'm so hopeful you will tell me that it will. I am very thankful for this piece of advice! Thank you!!

Manda, That is interesting that you say a therapist thought your DD might have been abused. That is the first thing our ped thought with our DD because of the initial symptoms and how sudden they were. We went with it for a while until we became aware of PANDAS. I would imagine that most of us parents are suffering from PTSD from all of this. I'm hoping your situation improves soon and that your appt goes well today.

Can someone point me to the contact info for Wendy?

Hi there, I have 2 tubes of blood that we drew from before our steroid burst. Our ped would like to send them to Dr. Dunningham. Can someone tell me if I can still do this and how to contact this doctor? Also, the blood has been stored, so would it be allowed in this study or does it have to be fresh? Thanks!

Wow, Susan, thank you so much for this information! I had no idea about magnesium! We will be trying this today! Can you tell me how old your child is and which supplement you use specifically? Do you use Kids' Calm or something else? Do you do both Epsom salts and the supplement? Can you do too much magnesium? Thanks!!

Does anyone have a child who consistently sleeps through the night? Who gets the appropriate amount of sleep for their age? If so, can you share any tips on how you are accomplishing this? Are people using supplements? Are you using Benadryl? How often are you using this? Does anyone know how long melatonin stays in your system? Meaning, should it keep your child asleep through the night? Or does it just help them to fall asleep? When DD is in a PANDAS episode, Benadryl has an excitable effect on her. Right now, she is doing ok with her PANDAS and Benadryl will sedate her, but how often can I give her Beadryl? Should I ask her ped for a sleeping med for her? Also, the Beadryl doesn't seem to keep her asleep all night long and she isn't getting a full night's sleep most nights. This is not making for a happy, rested child or a happy mom and dad.

Peglem, OMG, I'm so sorry! What a horrible shocker! Has this happened before? I'm not familiar with your story to know if this has happened before. Do you have a plan of action to know how to combat this or is this the first time it has come back? Please keep us posted how you handle this so we can all be educated.

Good luck! Please keep us posted and let us know how everything goes. Will you be spending the night or going home and coming back again tomorrow?

If she is a PANDAS kid, will a sedative work? We tried sedatives with my 3 yo PANDAS DD and it had the opposite effect. I can't remember the name of the drug because we threw them out, but there were 2 prescriptions from our ped that were meant to be sedatives.

Bronxmom, I also was never able to spend a day at home alone with my child until right after the IVIG. It seemed torturous to me. We went anywhere and everywhere just in order to not be at home. But, since the IVIG (until this weekend) I see what other parents must get to enjoy - a day at home with their child(ren). For us, this change did not happen until we did the IVIG. The abx and steroids were not enough for her.

DCMom, Your situation sounds exactly like what the past 48 hours have been like for us. I'm very glad you asked this question and will look forward to hearing what Dr. Latimer says tomorrow. My child is only 3 so no one thinks their child would have strep at this age still. Can someone explain why the daily Zith might help our children as opposed to the twice weekly? If it is supposed to remain in their systme for 21 days after taking it, why would giving it to them daily help them? I did give DD her dose 2 days in a row in the hopes this would help, but I don't understand why.

Hello, A strange thing happened today that led me to come across the term manganese poisoning. I came across the wikipedia entry for it and was shocked by what I found. I wanted to know if anyone else has familiarity with this or thinks I am nutty for looking into this. I will try to keep this brief. We have lived in our current house for just over 5 years. Prior to this house, we had no real health problems. Right after we moved in, I got pregnant with our first child, our PANDAS child. At 6 mo of pregnancy I got my first migraine ever in life and have had them ever since. I have them pretty regularly since the day they started 4 years ago. Then, 4 days before I delivered DD, I got what the docs thought was Bells Palsy. But it never resolved, had additional non traditional symptoms associated with it and was close to 100% paralysis. They tested me for every autoimmune disease that there is a test for but I never tested positive for anything. Then, at 9 months, DD contracts PANDAS. Fast forward to this round of PANDAS. DH is at his wits end and said about 2 months ago that he wondered if something was wrong with our house because no one else has such wierd health problems. We asked the neighbors about the people before us and that had been here for 7 years. They were all fine. Today, just randomly, the man who grew up in this house drove by to look at the house. We invited him in to look around. It turns out that the mom was a potter with a kiln in the basement and she lived here for 40 years! So, I looked up possible toxins from having a kiln in your basement and that is when I found this excerpt from the wiki article. In initial stages of manganism, neurological symptoms consist of reduced response speed, irritability, mood changes, and compulsive behaviors.[2] Upon protracted exposure symptoms are more prominent and resemble those of idiopathic Parkinson's disease, which it is often misdiagnosed as, although there are particular differences in both the symptoms (nature of tremors, for example), response to drugs such as levodopa, and affected portion of the basal ganglia. Symptoms are also similar to Lou Gehrig's disease and multiple sclerosis. http://en.wikipedia.org/wiki/Manganism Has anyone else ever come across anything like this? Have your children had their blood checked for lead or other metals or elements? Why would anyone check for that? I certainly wouldn't have thought of it before today, but we are having all of this run on Monday.

btw...I did more reading on the Olive Leaf extract and it said it is great for boosting immunity but not to be taken with abx, as it will negate the benefits of abx. So, if there is anyone on this board who is not using abx, this might be something to try. But not for anyone whose child is on abx. Thos of you who are on abx, what do you use as an immunity booster? And also, how do you give these to your children? Are they chewable, do you mix them in a drink? Or can your children swallow pills? My dd is 3 and can only handle chewable gummy vitamins.

I am so glad that you asked this question! I am scared to pieces about this. Our newspaper said that 1 in 2 will be affected by the swine flu this season. I hope that is being blown out of proportion, but I'm still terrified. My child is only 3, so we are just starting school for the first time next week. I'm looking forward to what others have to say. But, I do have one thought/question. For those who are doing IVIG in the midst of this, do you think that will offer any additional protection for your child through this winter?

So, it looks like they fall into both camps prior to the PANDAS diagnosis. But, how about after they become a PANDAS child? Does that make them more likely to get sick? I've understood it to be what peglem's immuno said below: What the immunologist said is that kids with an immune deficiency get sick alot, much more frequently than normal and will get more intensely ill, because the immune system isn't fighting the infection efficiently. But, PANDAS seems to be autoimmune, which means they wouldn't necessarily get ill more frequently, just that exposure to strep increases the number of antibodies in the body that are cross reacting(attacking) with the basal ganglia. So, even if your child is able to fight off the actual strep infection, the presence of the antibodies is what causes the PANDAS, not the bacteria itself. Antibodies tend to persist in the body for awhile after the infection has been eradicated.