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Everything posted by ziva

  1. That's awesome! Thanks for getting the word out. Can't wait to see it
  2. My son who is 7 freaked out the first time he had blood drawn. Turned out to be a great strategy for him, he said afterward since he was so busy freaking out, he didn't even feel the pinch...LOL. I was also soooooo worried since it was his first time, he could probably smell my fear. But....the next time we went we talked about being calm, that he would feel a pinch, and brought our IPOD. He sat on my lap, put his head (forehead) on my right arm to watch the video (had earplugs in), and they were able to take blood from his left arm. I think bringing something else for them to focus on really helps. So far we've done it the same way every time (about 8 times since march) and he's done great. We use the same strategy for my daughter who's 6. But she also found it really interesting to talk about and check out all the tubes. It took a while longer her first time, but we just made it all about the facts...blood cells, tubes, bacteria, lab etc. It kind of took the emotion out of it. She likes to know what's going on I should also say that that 1st time with my son he was in a flare, so that just makes everything worse. We ended up going out for a hot wheels car as an incentive each time too. Good luck! I always feel so bad for them. I don't think the pinch is too bad, but just being in a closed in area, near needles is such a stressor. Hollis
  3. Hi Julie~ The book that I seem to use the most is "The Anti-Inflammation Diet and Recipe Book". I like it because it has a chart that's easy for me to flip thru and see what's ok and whats not. It also has some good tidbits here and there that are totally doable. We are pretty strick when the kids are in a flare, but just follow it loosly when they're doing ok. Hollis
  4. Hi Cynthia~ When our kids were first diagnosed with PANDAS, our ped. recommended the anti-inflammatory diet. I do think it helped. We still follow the diet, loosly at the moment, but we get strict with it when the kids are sick, or having a flare in symptoms. Dr. T recommended the ibuprofen for us too, and they seemed to do well on that also. Hollis
  5. I am so sorry that you have to go through this! Your post actually brought tears to my eyes. My son started with PANDAS in Feb. of this year. He is also 7. I am assuming the last med. was Clindamycin. It's super gross tasting. I would definatly start keeping good track of all of the behaviors/tics etc. In the beginning I bought a big daily planner and would write what was going on each day with each child (I have 2 w/PANDAS). But that helps because you can have it in hand and show the Dr. I would also chart the behaviors w/numbers. So if my daughter had an ouburst/rage, I could write that down, describe it, and then give it a 1-10 scale rating. That seemed to help a ton. Also, put the meds. in there. That helped especially for us when trying to explain the rages to the Dr. I could specifically pinpoint when they would get better after abx. So when they tried to tell me I was overreacting, or it was just a "fit", I could show them how the behavior improvment correlated with the timing of abx. I have actually had a doctor tell me that my kids needed psychiatric help, and there was nothing else wrong....grrrrr. We know our kids better that anyone, and also have the "mama gut instinct", so I would say trust your gut....especially on the behaviors. Regarding your ped. that's tricky. Our ped. is actually the one that told me about the PANDAS, but said she will have to learn along the way with me because she's not familiar with it. She also has said that when she has called other specialists in the area to ask for help/opinions, that nobody really wants to touch it. She did recommend an anti-inflamitory diet in the beginning, and when they are sick to cut down on the inflammation. So far it has seemed to help. So we still see our ped. but have also had to seek out other PANDAS specialists. We consult with Dr. K in Chicago, and Dr. T in NJ (and we live outside of Chicago). They have been great especially with longer doses of abx to help clear infections. We weren't sure if strep was hiding somewhere, or just not being cleared and having it over and over. I would also definatly try to get in with a PANDAS specialist asap. That way you can figure out if you are dealing with PANDAS or not, and then have a plan of action. I am not familiar with the dr's in your area, but I'm sure someone will chime in with some recommendations. Otherwise, some of the PANDAS dr's do phone consults. I am hoping that my ped will consult with them through out the year if needed, so maybe that can be an option for your ped? This board is wonderful and you will find alot of information and support. Hang in there, you are a great Mom! Hollis
  6. I can totally relate to you and your feelings. It is just the realilty of how our lives are My kids recently spent the weekend at Grandmas. Before they left I went over all of the specific instructions. I have also been very verbal in the past about germs etc. My daughter called me the second day there and said she was sleeping in Grandma's bed with her. Grandma has not been tested to see if she is a strep/staph carrier. Of course I had a flush of panic, and my husband thinks I am worrying about nothing. He says you can't be worried over every person they come in contact with, but that's the thing....I can and I will. I did not say anything to her because I was kind-of in shock, and didn't know what/and how to say anything to her in that moment without hurting her feelings. She was trying so hard on all of the other issues...germs, diet, etc. But I will definatly bring it up in the future. I also feel so alone in the fact that no matter how much I tell them what we need to do, they don't understand the seriousness of it. But, I think unless they are really in the trenches with our kids while they are going through this, they don't really "get it" as much as they try. My one good friend finally got it when I told her when your kid gets sick they can get over it, when my kids get sick it starts an assault on thier body and brain. I have learned that I definatly need to speak up in the moment and not worry about hurting feelings, but that is sooo hard for me to do. I think that your aunt will just have to deal with it. It's a big fat bummer, but that's just the way it is. That is so great though that your son was on top of it! Hang in there
  7. What a great website! I will definatly check it out, and thanks for asking about adding PANDAS/PITAND!
  8. I had never really thought too much about it, but for a year or so before our 1st PANDAS episode for my DD6 she complained of "things in her eyes" that made it harder for her to see. They seemed to bother her, but never got too bad. She now is PANDAS and Lyme. They are not consistent, but seem to come and go for a few days at at time. The eye doctor was not able to see anything.
  9. This happened to my son too! I think it was also on day 7. I remember reading at the time about kids having a reaction the 2nd time around with it, and also on the 7th day. Not sure why though. My sons hives were rediculous. So, no more ammox. for us either.
  10. Hi Christianmom~ I don't have teenagers that we are dealing with, my kids are only 6 and 7. But I wanted to let you know I also read "Out of the Fog" and actually contacted Beth with questions. When I did, I left my number and she actually called me within 24hours. We spoke for almost an hour, and she was so helpful and informative. So I would recommend contacting her by email or phone, she is wonderful.
  11. Hi Stephanie, That is sooooooo great to hear! Thanks for posting and letting us know. We are also seeing Angelica and are having some amazing results. I will have to post an update too....my kids are PANDAS/Lyme. I am especially nervous though about the start of the school year. It makes me feel so much better knowing someone else using homeopathy is able to deal with strep/illness. Even the thought of it makes me freak out a bit. It's so hard for me to imagine them getting strep and being able to hold tight and trust in the process of homeopathy. But I'm working on it
  12. Hi Christina, We have not had good luck with an ID doctor. I'm not sure where you're located, so maybe you'll have better luck than we have. We saw someone at Childrens Memorial in Chicago. To make a really long story short...the Dr. actually said to me that my kids need psychiatric help.....and this is all in thier head. I of course had a hard time with that. I decided to set a good example for my kids that day and told him that we would have to agree to disagree. I would get the name of the ID dr. recommended and give them a call first. I also have to agree with WorriedDad about thier "expert opinion" making it harder to get help for my two PANDAS kids.
  13. My DS7 has had a very up and down summer in regards to PANDAS symptoms. I haven't been able to put my finger on it until just the other day. It's his teeth. He has lost 3 of them over the last 2 months. He just lost one a few days ago and already seems better. It's driving me crazy because I feel like we're just getting our heads into this PANDAS/Lyme mess, and then something like a wiggly tooth can cause a flare Most of the time I am just not really sure how to know what is causing what....it's driving me crazy. But....now hopefully we'll have a break from teeth, and let things get back to normal for a bit.
  14. Great news, and sooooo good to hear of kids getting better
  15. I remember reading your original post and feeling so happy for you . Such a great feeling to see our little ones happy and enjoying life like they should! I agree with Lynn....NONE of our kids should have to go through this Sending you lots of happy thoughs and prayers for a better day tomorrow. Hugs~
  16. Hi Karen, I'm sorry that don't have any advice to offer I have two PANDAS kids (possibly three..my youngest is looking PANDAS like), and we are just starting down the Lyme road with my oldest. I was actually just going to post something similar, so I look forward to what everyone has to say. I just wanted to say how awesome and pro-active your doctor (and you as a mom) were to even check for Lyme. My ped is great with PANDAS, but not really wanting to even check for Lyme involvment. I know it will be a long/rough road for all of us, but at least you now know what your are dealing with. Hugs~
  17. I just called and made an apt. for bloodwork. I made it for all three just to check and see how everything is going since my DS7 seems to be in a slight flare. I just HATE having to take them in for bloodwork. Makes us all so sad. I wish they could have the laughing gas like they used to do at the dentist to take the edge off Thanks again for the help and info!
  18. Ok, I have two PANDAS kids...DS7, and DD6. They were both pretty easy to diagnose, as they both got strep and within 24 hours and then had HUGE behavior/pshyc changes. My pediatrician knew right away. My DS4 also had strep (back in march/april), but seemed to get it under control with 2 rounds of abx. We did two rounds just to be sure, since we didn't want to re-infect my other two. Since discovering PANDAS in my other two, he has been clingy, and more aggressive...but not too bad. He has always been a pretty mild mannered boy. Never really threw fits etc. But now when he gets upset, his first reaction is to kick/hit/throw/push/punch whatever or whoever is near him, or caused the drama...but I am usually able to calm him down. He is also scared going to bed, and often ending up in our room. I assumed that it was because of all of the extra attention my other two were getting, and watching the other two with all of the rages/aggression. The other day when we were out shopping, he threw a fit that lasted 45 minutes. He has NEVER thrown a fit like this one..ever. It was so like how my PANDAS kids rage. I was able to keep things ok for about 15 minutes until we had to check out. Then he just went crazy. Screaming at the top of his lungs..kicking, hitting, growling, not letting go of the "mini" cart...so we were dragging that along with us trying to leave. Of course we were blocking the entrance/and exit. It was horrible. **But, on a side note I just have to say that a woman came up to me and said "ok where's your car, lets go, I'll push the cart (my DS7 and DS6 were in the cart). And while I was crying and carrying my screaming/kicking DS4, she pushed the cart and hung out there with me for 15 minutes until I could get my son buckled in. She talked to my kids in the cart, and was so happy and distracting for them. She was like and angel Then made sure I was ok, and could get my other two in the car, and told me to hang in there, things were ok and was just so sweet. And while this was happening 3 other people stopped to say encouraging words .... which meant the world to me. I always feel so judged/like I am the worst parent ever when one of them rages. That pouring of support my way will definatly be in the back of my mind next time this happens So nice to know that there are some really great people out there! When I spoke to my DS4 when we got home and asked him why he acted like that, he said sometimes his brain tells him to do things...sometimes he doesn't listen, but sometimes he does. He apologized, and has been ok the rest of the week. So my big question is....could he have PANDAS and just be so mild at the moment that I wouldn't really know. Has this happened to anyone else? Thanks
  19. Hi Tiffany, I definatly wouldn't wait to be referred to infectious disease. We just saw the head of infectious disease at Childrens Mem. in Chicago, and he told me my kids need psychiatric help. Even after I told him three other peds. diagnosed PANDAS, and showed him all the bloodwork. I might push for the specialists in Seattle (if he knows they understand PANDAS), or look for another PANDAS doc that you would be able to go to for abx./further testing. It will prob. take a while to get in anyway, so at least if you make the apt. you could try to get some other tests run in the mean time. My Dr. is similar to yours. She said the same thing about me knowing more, which doesn't suprise me since ALL I do is research PANDAS, treatments, etc. online She also said we would just wait it out, and treat the symptoms/strep when they returned.....but she doesn't feel comfortable with prophalactic abx. Our problem was of course the symptoms are here (although better after abx.), but we aren't showing strep at the moment. We are going in to check titers tomorrow. My son also had Mycoplasma, which I had to push him to be tested for. The ped. was suprised when it came back pos. I feel like it's so hard to tell if there's something going on, or if symptoms are just lingering for a while. I'm not sure what other tests your son has had, but we also consult with Dr. T, and he did a full immune panel work up to make sure everything was ok. We also checked for Lyme. So, we have a Dr. that we can turn to for IVIG, a Dr. for prophalactic abx. if we need, and our ped. in the middle of it all. It drives me crazy that they can't all be in one place, or all take insurance....the bills are adding up fast. And I almost forgot, I would log EVERYTHING. I do, and bring it to every apt. It's been a huge help for me, as well as the doctors. Hollis
  20. Hi Kaviar~ We love our ped. and have a good relationship with her, but we still have not been able to get her on board with any type of prophalactic abx. Actually not just proph. abx., but we just even to try a longer dose (20-30days) when the symptoms ramped up to see if that would help. She suggested IVIG, but was not sure how to help us with that at this time. I have been printing out some suggested info. from this board. There have been some really great links to articles that seem like they would help sway in favor of the abx. I'm sure someone will chime in with those links. So since we were not able to get the abx. from our ped, we have been consulting with Dr.T (ped. neurologist), who has recommended the proph. abx. for my two PANDAS children. It was azith for my DS7, and augm. for my DD6. Our ped. is aware that he has been prescribing abx. This is all pretty new to us as well, but I am hoping that when she sees how well they do on the abx. that she will come around. I know what you mean about "I'm in this online forum for PANDAS and this is what they say". I have said that to every Dr. we've seen so far, and they always look at me like I'm crazy Hollis
  21. Hi Kari~ My two PANDAS kids don't seem to get strep often, but we are still having issues with behavioral symptoms/rages/defiance too. When I spoke to our PANDAS doc about considering IVIG he actually recommended getting the tonsils/adenoids out first. He thinks it would really help. I have heard that they can hide strep. We are in the process now of trying to figure out our next step. I have heard some stories of it really helping, but I have also heard some stories that it made things worse. I am glad you posted this. I look forward to what everyone has to say
  22. Hi Massmom~ I am so glad you have found this forum. They have really helped me sooooo much. Just reading Nancy's response was great...I had no idea about the valerian root.......we will have to try that. We are still new to this. I have two kids w/ PANDAS, diagnosed Feb/Mar when strep was going around like crazy here (Chicago area). My kids do not have strep at the moment, but still have lingering symptoms. The strep was definatly our trigger, but now I think any infection/virus/allergies can cause more symptoms. I know my DS7's symptoms ramp up even when he is losing a tooth. For us, we are having a hard time figuring out what is causing what. Is the strep cleared and now allergies are causing the symptoms? or....is there some underlying infection. They also do better on abx, but we are trying to find out if they need to be on it long term or not. Are they better because the abx is fighting an infection, or is it some other properties (anti-inflamitory) that are helping? We have never done any abx longer than 10 days, so we are trying a 20 or 30 day run now. It seems that everyone is so different in terms of what works for them, and how to discover what is really going on. I think it is great that you were able to see someone to diagnose PANDAS so early on. Did the neurologist recommend any bloodwork. That was one thing that helped our ped. get on board with our plans. One of my kids had high strep titers, which wasn't a suprise, but he also had MycoP....which we didn't know. My other didn't have high titers, but still all of the symptoms. Also, our ped. neurologist(Dr.T) that we saw recommended ibuprofin to help when the symptoms are bad. I can't figure out if it works for us yet, but it would be worth a try. We were also told to get some good Omega 3's. You didn't mention if your daughter has any night time fears. Both of my kids have trouble with going to sleep, intrusive thoughts/fears. We have been giving them 1/2 a tablet of Tranquil Sleep and that has been helping. I also think it is great that you started your daughter with therapy. I always get so sad when I think of what they have to deal with. I am in the process of trying to find someone that understands PANDAS. Welcome to the forum, and don't hesitate to post questions. You will learn so much from everyone here, and thier experience
  23. I am scheduled to see Dr. P/LLMD in Elgin the beginning of July. I am wondering if anyone knows if he does ART, or can recommend someone out here that does. We are in the western suburbs of Chicago. I've contacted the Klinghardt offices and they are not offering any referrals at the moment. We recieved a recommenation for a Dr. in Denver, but.....we are getting so drained financially that I am trying to find someone closer. If we can't find any near us, I think we will be headed to Denver. Thanks!
  24. That's so great that your Dr. even ordered the tests! I've heard of so many Dr's that wont even do that. Hopefully your Dr's views will change once he sees the correlation between the behaviors and strep/abx. I'm so glad you found this forum. I have learned so much from everyone here Good luck, and keep us posted.
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