dcmom

I completely agree with worrieddad. Beth has told her story. It will help lots of kids- it will not help everyone. She really can't speak for us and our stories(and she is an attorney so by nature will be more conservative than we are)- and has to be careful to remain credible. We have to continue to do our part by reaching out to everyone we can. Working together is the only way...

SF Mom- This has happened to us 3 times. Each time we saw an increase in pandas, then I found out someone in the class had strep. By the time you find out, the exposure is probably over, because the other kid is out and on antibiotics. Each time, the blip only lasted a few days. I def would up the abx for a few days to be on the safe side...

Colleen- I have been thinking about this a lot lately. My only concerns with switching are: apparently augmentin is a lot harder on your stomach than zithromax, and it is amoxicillin with a better delivery system- which I don't believe has the ability to go intracellular. That being said it is very interesting. Is there any science that would indicate it would be preferential? Eileen

MomMD- Just wanted to bump this up to the top to make sure everyone sees the great news! BTW, I have been thinking lately, that if these kids do have some type of super strep (maybe that is why two years of high dose augmentin finally helped Sammy), why couldn't we treat with IV antibiotics? Maybe that should be added to the pex protocol?

Bronxmom2- I was thinking about you all week, I will try to give you a call this weekend to talk.... I am glad everything went smoothly. We are nice in DC, aren't we And yes, everyone seems to really like Dr Latimer! I thought Julia looked really pale for about 4 days after pex. The first day home she was really on edge- possibly from lack of sleep and stress. Since then I have been noting lots of improvements. I am now really anxious about keeping her that way. I have doubled up on her antibiotics until we follow up with Dr L on 11/10, am not getting any vaccines, and am sending her back to school slowly. Mom md- I assume you meant his cam kinase was 99 after pex (not ivig)- that is amazing... The best news I have heard for a long time. Has he quickly recovered from the relapse he was having?

It is soooo tough for the siblings, isn't it? My non pandas daughter, age 9, has been so impacted by her sister's (age 6) pandas. They are usually constant playmates- but it was tough during the worst times. Non pandas daughter is definitely left with as much (or more) post- pandas anxiety/emotions as mom.

Ugh! It looks like it may be too late for non pandas daughter, anyway. She just came down with a fever and dry cough. The flu has started going around her class this week. Will keep you posted...

Hi- thank you for bringing this up! I am starting to get worried about H1N1. Originally, I was opposed to the vaccine for both pandas and non pandas daughters. The news, my sister in law and now this post is starting to get me concerned. I just put a call in to Dr Latimer, I will see what she says. Julia just had pex, so I really don't want to do ANYTHING. I don't know if we should, could or will get the vaccine. They are vaccinating lots of kids here now- and lots of kids are starting to get the flu in their school. This is so stressful! Why couldn't this have come last year, pre pandas for us. Has anyone on this forum had their kids vaccinated yet? How would being on zithromax affect the vaccination and/or the possible flare-ups? Help! Megsmom- does your daughter have any unusual conditions that would prompt her to tell you to get the vaccine? She was totally against it when we discussed it during the summer...

I haven't tried it- but I will- silly question, but, where do you get epsom salts, cvs? DD doesn't like baths, since pandas, maybe that will get better?

Thanks everyone! Will continue for a few days- she needs the rest, not to mention me - no sleep for Mom in the PICU...

I am sure Beth waited to write the book until she though Sammy could handle it. Don't forget she is an attorney- so of course she will be careful. I know there is some out of date info- but this book can only help those looking into pandas. There is only so much one person can do. She has told her story- she cannot tell everyone's story. I really admire her.

Looking for an amazing, thoughtful, extra-ordinary immunologist to figure this #### out. We can see anyone in DC/ NY/ NJ/ Philly..... Any thoughts?

My dd has always been healthy, like her non pandas sister. Maybe one typical illness per year, recovering normally. She did have strep before, and had the typical symptoms. (I do not think it is how a child shows symptoms of strep- more what strain of strep triggers pandas) No known allergies or immune deficiencies. Mommd- thank you! Please keep us updated! Tested everything except pneumococcal titers. All other numbers excellent. Sigh. Need to find an immunologist in DC or NY/NJ...

okay. DD is home from pex. First night, exhausted, slept well. Next two nights, rash from bandage itching so we gave her Benadryl. She slept beautifully and was amazing the last two days. Last night, off the benadryl- trouble sleeping (not terrible, but asleep at 10 and awake at 6:30 am), not enough. I see a bit of a difference in her. So- can I do benadryl every night for a few more days, just to help the healing? Is this terrible? Should I get kidscalm?

Just a quick update: Julia was very on edge the day after she came home from the hospital. Since then she has been great. A few small things (which are huge, you guys will understand): she is now wiping herself after going potty for the first time since last February (its almost like she just forgot, it wasn't even a discussion), she is drinking milk and eating yogurt (some of her favorite foods, that she hasn't eaten since last February), and now she has been sitting and reading to my mom for an hour (she is still a beginning reader- this is unheard of- never happened before- usually somewhat to very resistant to reading). So although it seems small, it is HUGE! Now on to me, I am in an all out panic because of a few kids who have had pex recently relapsed. Help! It is too much to bear to see how they can be, only to think it will be taken away. I am trying to figure out how high I can go with antibiotics, and how long we can bear to keep her out of school. (she loves school, and wants to go back) Thank you for all the well wishes!!

Well, I am all in on this. DD just had pex and is doing great. I find I am in a complete panic, though. What would be a high dose antibiotic for her (36lbs). She is on 200mg zithromax/day right now. Would there be any rationale to change to augmentin? That is what Sammy did. I feel like, hopefully, we got rid of her bad antibodies.... possibly she has some type of strep that is still lurking, it is key we supress it until it is gone! Help on antibiotics please....

I can buy this. But if what are kids have is a superantigen, what is the answer? High dose abx?

My dd did get a little worse when tapering off the steroids. At the time I thought it was exposure to strep- now, after reading this from several parents, I am not sure. Anyway she got a little worse for less than a week, then went back to almost as good as her best day on steroids.... So hang in there.....

I am not sure Beth is against pex/ivig. I know when she was going through pandas with her son- she looked into it and no one in the country was doing it. She was told it was too dangerous. She connected me with a mom who is interested in pex- to send her info....

I emailed Beth my daughter's story. She is textbook pandas onset. We had a positive throat culture (that was a gift!), but her titers were totally normal when they were tested! I would and do advise anyone who suspects pandas to not have titers done- it can only act as ammo for a disagreeing doc if they are negative. A very knowledgeable psychiatrist (who worked with Swedo) told me, at the beginning of our journey, not to bother with titers or catscans or mris.

If at all possible, maybe you can consider the Saving Sammy type dose of abx for a while. For my daughter, it took at least a month of treatment dose zithromax to help her. Could you find a doc to try something like this- where did you get IVIG- a month of high dose abx as a trial is no where near as involved or expensive as IVIG.... I really hope you see progress soon. I think it has taken others some time also... Hang in there...

T Mom and I are in the DC metro area. Is there anyone else close enough to us to consider a support group? We could also meet with those who come in to town to see Dr L... Eileen

Debbie- please keep us updated. My non pandas dd age 9- has been having daily stomach aches since her bout with strep this year. I am thinking of trying to get her on antibiotics....

Here is a brief description I have written about our experience this past week with plasma pheresis. All in all, it is a tough week for the kiddos (if they have a fear of needles and doctors), but the procedure itself seems simple and safe. We ran into a few glitches, which made it a little bit more difficult than it usually might be. If anyone has questions, please feel free to contact me. The first step in plasma pheresis is to have the central line inserted. We were taken to the sedation team. Two nurses placed an IV in Julia's hand. Of course, the first IV they put in didn't work, so they tried again in the other hand. I don't have to tell you how Julia felt about this, but she was really brave. After this we met the doctors that would do the sedation and catheter insertion. We stayed with Julia while she went to sleep, and then went to wait for about 40 minutes while they inserted the line. The doctor came to get us immediately; Julia was still sleeping when we arrived. She woke up slowly, and starving. She was very nervous about the IV and the catheter in her leg, but she really was strong. She ate, and played, and we were moved to our private room in the ICU. We spent a lot of the rest of the day waiting. After we got to the private room, they drew blood from her IV to see if she could have pheresis that day. It was a go. While we waited, we visited the playroom where Julia did some painting. She enjoyed that, and enjoyed the attention of the child life specialist. Finally the pheresis nurse came to her room around three. This is when the real glitch started. The nurse checked the catheter, and did not have satisfactory flow rate through it. She, and the ICU nurses spent the next two hours trying to flush the line, and reposition Julia to make it work. This was agonizing for Julia, as it hurt every time someone touched the catheter. She was in a great deal of stress (as were we). Finally the attending physician came in to let us know they would put some anti clot medication in the catheter and let it wait overnight. He told us this was common, and unfortunately the difficulty of putting a large catheter (although it is the smallest one they have) in a small child's vein. We were frazzled and disappointed, but comfortable with waiting until the next day. The next morning the pheresis nurse arrived at about 12 pm. We liked this one much more than the one the day before. She had the same problem with flow in the line. This was the start of a really long day of stress and pain for Julia. The nurses spent hours, on and off, trying to reposition Julia, flush the line, and wait. Nothing worked. They were ready to put it off another day. We were extremely upset, and really felt we weren't getting the attention of any of the physicians. Everyone seemed to want to pass the buck. HemOnc told us they were not involved with the line placement. The ICU attending and his nurses insisted the line worked and there was nothing they would do about it. (They did lightly sedate Julia to try more repositioning with no success.) The pheresis nurse explained the machine would not function without proper flow. She connected Julia and tried to run the machine twice ( having to re set it with all new lines each time), with no luck. Finally, the doctor who placed the line appeared. She told us she would get it going. In the end, with local anesthetic and light sedation, she had to reposition the line. This involved taking the dressing off, removing the three stitches, repositioning the line (it turned out it had a kink in it), restitching and redressing. Now at least we had flow. Finally Julia received the first pheresis treatment, which was nothing, compared to what she had been through. She tolerated it really well. The next day Julia and I were awaken at 4am so they could draw blood to test her clotting numbers. Julia was so strong, but how much poking can one little girl bear? The numbers were good, so the pex was a go. The nurse arrived in the morning for what we hoped would be a smooth treatment. We should have known better. This day, there was a different problem with the line. There were some clots around the opening of the catheter. In order to keep good flow, the pheresis nurse had to continually flush out the lines, which meant more fooling with the catheter, more stress and discomfort for Julia. Fifteen minutes into the pheresis, Julia started whining, was white as a sheet, and her blood pressure dropped. They had to postpone treatment for 15 minutes, and pump her full of fluids. Luckily, she perked up, and we were able to complete the treatment. It was another long, stressful treatment for Julia. Afterwards, she felt much better, and went to the playroom for some games and crafts. The fourth and final day, Julia was again woken early for a blood test. Her numbers were good, and it was a go. Finally, she had an easy treatment. The blood flow was good, she had already been pumped full of fluids, so it was just hook her up to the machine and watch some movies. If all the treatments had been like this, it would have been a much easier process. The worst part of the whole week, for Julia, was about to come. She was so afraid to have the catheter removed, I don't blame her. She wanted to be sedated. The nurse came in and removed the dressing, the stitches, the catheter, and held pressure on the wound for five minutes and replaced the band aid. Poor Julia screamed the whole time. Of course, there was some bleeding. So the nurse had to remove the dressing again, and held pressure on the wound for 15 more minutes. Finally she put the dressing on, and we stayed at the hospital a few hours for observation. In the end, it was a difficult week for Julia. If it works, and helps keep her clear of pandas it will be worth it, and I would do it again. If things had gone smoother, it would have been much easier. Having the distractions of movies, crafts, a child life specialist, a therapy dog, and gifts was essential. Having the IVIG bear to play doctor with the week before, and while she was in the hospital was really therapeutic. She does have some good memories. Bringing food from home, and living close enough to run home to shower and see my other daughter was convenient. Having both my husband and I there really lightened the load on both of us. Keeping Julia hydrated with IV fluids before pheresis was key, the one day we didn't she had issues. We are prepared for a couple difficult weeks while Julia recovers emotionally, and catches up on sleep, and tries to get back into her routine. We plan to try to be as careful as possible with her: maintain a routine, keep her well rested, fed and hydrated, minimize stress in her day-to-day activities. We plan to keep her out of school if there are illnesses going around, and prevent any insults to her immune system (vaccinations, etc). We plan to treat any relapse immediately and aggressively with antibiotics and steroids. We plan to keep her on daily antibiotics until the spring, at least, and prophylactic antibiotics until she is out of college, at least. Hopefully in the coming years, doctors and scientists will learn more about managing pandas, to make the parent's lives easier.

This was one of my dd's biggest issues. Luckily, she was in Kindergarten last year. She wore her pjs to school for a month. Couldn't wear panties. As she was recovering she found one outfit she liked, and wore that every day. When she went into "remission" she wore whatever she wanted. Dut- like you I base my daughter's status on her clothing issues. We are in an ok place. She cannot wear anything, but does have many outfits she wears She also hates the bath. Luckily she is tiny- so I just put her in. Once she is in- she enjoys playing in the water. Getting dried is stressfull for her. She hates having her hair brushed, teeth brushed, etc. She is small, so I force it once per day. If she can yell at me- it seems to make her feel better (maybe that is her compulsion). Although this was bad, I think being so little made it easy. I cannot imagine a 10 year old girl feeling this way I certainly lowered my standards, and chose my battles. Pandas certainly teaches you a lot about what is important in life