FallingApart

Thank you for this info! how annoying, it IS all related. Carrier DD first presented with Scarlett Fever and then what we thought was diaper rash. She has always had strep on her bum. She also constantly tests positive for strep so we had both girls T&A removed. We have also found strep on teeth and gums, but not that often. This Eus Tube thing is not new by any means as I can see all the signs now. It is just the first time I have put it together. Anyone know how to get to that area?

Hi all, We've been dealing with PANDAS and Lyme for coming up on 7 years. I come to this board from time to time. We've never been able to cure my strep carrier daughter of strep no matter what type of abx we have done. Given that carrier child tests positive for strep while on heavy duty abx, we eventually decided to stop all abx treatment about a year ago for both the carrier child and the PANDAS child. Due to some challenges in school, carrier child was recommended to be evaluated by a speech pathologist. Come to find out that our carrier daughter has inflammation in her Eustachian tube(s?). I was with her for the whole test and heard the whole thing and the errors she made were consistent with her speech and hearing over the course of her life. (she is 8). meaning this inflammation is not acute, but chronic. The doc was less than helpful and was ready to shoo me out the door, but he did, however, confirm that you can have strep in your Eustachian tube(s). Anyone else dealt with this. Call it mommy instinct, but I just know that this is the root of our hiding strep. I am really averse to using abx again since we haven't been successful with them in the past, but if someone has a protocol, I'm all for it. We have moved on to homeopathy and trying to help the body heal itself and I am much more comfortable going that route. However, I am open to most anything. TIA. FA

Hi all, For those of you who have school aged, ragey PANDAS, what is your plan for the summer? I started out as SAHM, moved into a fulltime caregiver to my PANDA and am now a homeopath and SAHM. Because I am supposed to be a SAHM I can't fathom or really afford to send my PANDA to summer camp all summer. However, this is truly what she needs. School breaks kill her, and in turn our family. If I could let her go to summer camp each week, she would actually love it. She would limit her rages to home and probably everyone would have a decent summer. Does anyone have thoughts on this? What do the rest of you do? An insane idea entered my mind today. Way back when, I thought I might homeschool my children. I don't think we would be alive if that had actually happened. But has anyone ever approached summer as a homeschooling term? My reason for thinking this is the routine. However, my PANDA is 9, has had this for over 6 years, and won't do anything she doesn't want to do when she is at home. My idea could be a great one or could be setting me up for the worst summer of my life. Anyone have any thoughts? I also have 2 other children and one of them is a baby. FA

Regular old, PANDAS causing strep. Group A. Note, this swab was not done on her throat, only the teeth and I'm thinking gums. My dd did the swab herself.

I don't think it has to do w dental problems. Ped had dd rub the Swabb all over her teeth. Came back pos. dd has itchy and irritated nether regions as well but that test was neg. I would expect that to be neg bc of the daily abx. The ped, however, still thinks that is strep as well. We are tx with a periodontal mouthwash and switched to clindamyacin. Would love to hear any other stories/thoughts on this!

Hello, We've been at this journey for over 5 Yeats now and in that time my pandas dd has only had a positive strep culture 1 time. (Always shows in titers but not a swab). Yesterday our ped found strep on dds teeth!! She said she has been finding this more and more on teeth. I'm thrilled to have found strep in dd, but what does this mean? Ped and I worked out a plan, but I'm wondering if anyone else has experienced this. Thanks! Kathleen

She has not started her period yet. But we noticed a tiny change in breasts. DH and I have to remain hopeful that things might improve on the other side of this. From what I read last night: breast development is first and menstruation is 2-3 years after that. I don't know how it happened with me. But if what I read is correct, she is on the same path as me. I started my period at 11.

Hi all, DH and I are thinking that DD, just turned 8, is beginning puberty. We just came to the conclusion this weekend, so haven't had any bloodwork or discussion with ped. Aside from being floored that we seem to be entering this phase, we are wondering if anyone has experience on this? I've read some posts that seems to say things have improved on the other side of puberty, but what about the phase of going through it? Is it going to get worse, stay the same as it always he been or could we possibly be heading into better times. Here is a very brief history: overnight change at 3y1m, younger sister had scarlet fever. fumbled around for at least 6 months trying to figure out what had happened. Lots of testing, eventually figured out it was PANDAS. Treated with abx, steroids, PEX, IVIG, SSRIs, and homeopathy. Improved dramatically after IVIG although the results would never hold. Homeopathy has been the most helpful along with abx. Just had tonsils removed in both girls in mid October. Currently doing neuropsych eval (for 3rd time) to check for additional issues. I will say that she has not been worse since she had her tonsils out. But her rages, sleeplessness, and ability to understand how her actions impact others are all still there. DH and I are wondering what we are in for for the next few years until we get to the other side. The other thing is her body type. I feel like most of the kids described on here (although this could be completely false) are very slight in their body type. Our DD is quite solid. She has OCD around finding sugary and salty foods and eating them nonstop. Thanks, FallingApart

Hello, We just had a T&A for both daughters 4 days ago. We have a 7yoDD with PANDAS and a 6yo DD strep carrier. Both girls still get strep while on abx. I've been reading through the posts on tonsils and see that some of you have used steroids after the procedure, some clindamycin, and others did other routes. Can people chime in with what changes you made to meds after the T&A procedure and how you thought that change worked? I hadn't thought about steroids although they have always been helpful to my DD as well. We did not do IV abx and I am now wishing we had. Since the surgery, PANDAS DD has been a sleeping machine and I'm wondering if she also had sleep apnea as others have indicated. We had not done a sleep study. Our DD has had PANDAS for 5 years. Thanks, FA

Hello, After 7 years, DH and I are pregnant again! The last time I was pregnant we had ever heard of PANDAS or Lyme. We now believe that my oldest dd got Lyme from me in the womb. We did about 2 years of Lyme treatment for dd and myself and saw some decent results, but never the full improvement we were hoping for, so when the school year began, we stopped. It's been about 2 years now I called the llmd to ask if I should be on an antibiotic while preg. She said yes, but I need to come in for an appt. I have another holistic doc who will write me the rx for the duration of my pregnancy but she doesn't know what to write. The llmd is a few hours away and super expensive. Has anyone faced this? What were you rxed and what was the dose? I will go to her if I have to,but since I won't be pursuing aggressive treatment right now, I'd rather not. Thanks all.

I know ab steroids being bad for Lyme. We never do a full course. Only till we see an improvement. I really and truly HATE steroids! I don't think the steroids made her worse. Perhaps a bit better.

Thanks so much for your input everyone. Things seemed to have stabilized and I did get her on steroids. But something REALLY set her off last night. I was standing right there and to me it just looked like she didn't get her way. She ran home and started singing about how she was going to kill herself again!!!! We have an appt w a LLMD psychiatrist this week and I'm worried that I'm putting all my hope on that appt. I hope everyone else had the most boring of weekends.

Sorry I have been absent. You can imagine how the past few days have gone. We were able to keep her out of the hospital, thank god. To answer a question, I live in Seattle. Thanks to a PM from someone we got the kick in the pants that we need to start Lyme treatment again. I'm perplexed tho because her ped, whom we have a wonderful relationship with didn't even want to run titers on her or start steroids. The ibuprofen is helping but not enough. Thank you for the advice on addressing the trauma of the pandas child now. I wouldn't have considered that because I have such a hard time being compassionate to dd, but I will call and ask that that be addressed in tomorrow's counseling session. Dh and I are leaning more and more towards her having done the whole thing because of my surgery. I had a laparoscopy and have 5 holes in my belly that clearly came from a knife. I don't want to minimize this in any way, but wee also are at a loss as to how in the world she would know how to do something like this. W don't let her watch anything past Clifford!!!!!!! I appreciate everyone's quorum on avoiding the hospital. The counselor told her that if she couldn't follow the rules she would have to go to the hospital to stay safe. I'm not sure I'm going to follow through on that part. When does it ever get easier????????

Sorry I have been absent. You can imagine how the past few days have gone. We were able to keep her out of the hospital, thank god. To answer a question, I live in Seattle. Thanks to a PM from someone we got the kick in the pants that we need to start Lyme treatment again. I'm perplexed tho because her ped, whom we have a wonderful relationship with didn't even want to run titers on her or start steroids. The ibuprofen is helping but not enough. Thank you for the advice on addressing the trauma of the pandas child now. I wouldn't have considered that because I have such a hard time being compassionate to dd, but I will call and ask that that be addressed in tomorrow's counseling session. Dh and I are leaning more and more towards her having done the whole thing because of my surgery. I had a laparoscopy and have 5 holes in my belly that clearly came from a knife. I don't want to minimize this in any way, but wee also are at a loss as to how in the world she would know how to do something like this. W don't let her watch anything past Clifford!!!!!!! I appreciate everyone's quorum on avoiding the hospital. The counselor told her that if she couldn't follow the rules she would have to go to the hospital to stay safe. I'm not sure I'm going to follow through on that part. When does it ever get easier????????

Our 7 yo DD last night said she wanted to kill herself and took a serrated knife to her forearm (the fleshy side). Then later she took the cords from her blinds and wrapped them around her neck. I was in bed bc I just had surgery. But DH yelled at her very firmly to stop and to get in bed. She immediately listened and did as she was told. Our ped thinks she needs to be evaluated with a psych exam. I agree. However, I do not want her near a hospital. I want her strep titers taken and for her to wait for a counselor who is familiar with PANDAS to see her. For those of you who have been down this route, can you offer suggestions. A bit of background: she is definitely in a flare. This is the first time we have ever heard or seen her do something like this before.She is 7 and has had PANDAS since she was 3.

well, DH isn't telling me everything because he doesn't want to stress me out. We have given her strep and arnica as well as chamomile homeopathy pellets. At home this usually always works fine. But we've seen it fail on vacation before. On vacation she gets very rigid, mad, hyper, sensory, and just very difficult to be around and make happy. She is 7.

Vacations are always rough for us. So rough, that I only go about half the time. Right now my husband took our children (1 of them is a PANDAS/Lyme child) to his hometown for the 4th of July. I elected to stay home and have surgery. DH says things aren't going well. This isn't anything unusual, but I thought I packed him with all his defenses. I sent all the appropriate homeopathy with him as well as magnesium and of course antibiotics. Can anyone offer some tips and tricks that help on vacation to get your child to calm down a bit and get back to more of themselves? We were never able to accomplish it on our last vacation.DH sounds a bit beaten down and I feel bad for him. Thanks in advance. FA

So here is an update from yesterday. Both of my daughters the Pandas and the NT slept until 11. We then went on to have one of the best days in quite a while. Now the sleep alone could have been what was needed to help her. But her constant humming was absent. The reading I did about this on webmd for user reviews for ADHD and autism were to do .25 of the .1 4x/day daily. When I had been doing this for my daughter before, I was doing it on an as needed basis. Having taken the drug myself, I think an entire .1 mg pill given to a child before school, playtime, or homework is too much. They will get tired.

Have any of you ever tried Clonidine for yourself or your child? Clonidine is a BP medication. My doctor wanted me to try it bc I am such a basket case and am beyond anxious. Her theory was that if your BP is automatically lowered, then your anxiety will follow. I've been taking it on an as needed basis for a few months. I think that I (Like all of you prob) am SO stressed out, that this will never touch my anxiety. But what it does do, is at it's highest dose, is knock me right out for sleep. And I never sleep anymore, so I love this drug. And I now have high BP from all this stress anyway. Onto the children. I told our ped the GPs thinking on Clonidine and anxiety and said I wanted to try it on my PANDAS daughter and she prescribed the lowest dose for her. I saw no improvement and stopped using it. Last night I told DD she had to sleep in this morning (yeah, right!!!) She asked me to giver melatonin, but it was way past an appropriate time for that. SO I pulled the Clonidine out and gave her a whole pill (the dosage is for 1/2 pill). Next DD comes out and can't sleep either. I gave her a half of the pill. My entire house, including DH is asleep right now. Exciting, yes!!!!! Coffee by myself. However, when will they wake up? 7 pm? So, I looked up user reviews on Web MD and this drug is used for Autism and ADHD. I had no idea!!! And this drug calms down rages and helps the non sleepers sleep. I only get on here now and then, so if this is old news, sorry. But when I have a house full of sleepers, I want you to have it too. Love, FA

I know this is an old topic, but I've been off the boards for a bit. I take 1600 mg of mag citrate for very little response miralax does nothing for me. Tis problem is very irritating. Are there any other solutions that haven't been thrown out yet. My other post mentions the breakdown I'm having and I think my constipation is partially tied to emotional shutdown. But the bathroom problem for me is extreme!!!!

Mdmom, tha is a good point and one that I am starting to consider again. I have Lyme confections and treated dd and myself for Lyme for over a year. We didn't see any improvement. However, during my current breakdown, our ped told me my pandas is causing a lot of problems with dd. that is the first she had ever saiid that. It's interesting to hear you say it is as well. I have no bw to support that I have pandas. I'm not discounting it, I'm just blown away. Our family is perfectly willing to treat the entire family. What does that entail. Abxfor life? Or more?

I have been on the boards for over 4 1/2 years. I've learned so much, tried so much, have enough bottles to open my own alternative medicine store. We've done ivig, plasmapheresis, and are now at this point doing both MD and ND mix of treatment. Within the last month I've had a bit of a breakdown. As much of a breakdown as a mother of a pandas child is able to. But I've stopped being able to remember things, am unable to answer questions, can't stop crying, can't poop, and can literally feel myself closing in on myself. To keep the story short, I've been recommended to a trauma counselor. I've realized that I had a very traumatic childhood and my dd needs are calling up all the trauma from when I was a kid. I'm telling you this because I've always wondered why I've watched the other kids heal and mine only goes thru ups and downs. And the ups aren't that "up". I believe my issues are holding her back. I'm smart enough not to beat myself up over this. At least yet. But someone else out there could be in the same boat. I've also found I'm one stage away from Addison's disease which is adrenal failure. I have a lot to work on

I will do some reading, but my first thought is whether you can take this while on an SSRI? Both DD and I are on one but this sounds like something I would like to try.

I gave DD 2 Culturelle yesterday with lunch. We have used CUlturelle off and on depending on which probiotic I have available when it is appropriate to give it to her. She threw up about 4 hours later but I do not believe she is sick. Thanks for this timely post. What probiotic will you give then? We do HLC Chewables, but they are so expensive and I am wondering if we do need to be mixing them up every so often....

We did IVIG w IV Steroids about 12 times over an 18 month course. I don't remember what the dosage was because DD was 3 at the time. Because she was 3 IVIG was traumatic for her (and the whole family) It involved an overnight stay in the pediatric ward. Thus, we tried to string the IVIG treatments out as far as possible. We went as little as 2 weeks up to 40 days. Then our insurance company required us to see a Naturopath in order to continue paying for the treatments. The Naturopath was able to get the same results as IVIG with just homeopathic strep. Like Philly PA, was it the 18 months of IVIG or was it truly the homeopathic strep? Don't know for sure. I only know that we haven't been in the hospital since then. DD still flares and can get to the point where I would like to do IVIG but then I usually remember that I have missed something in our current protocol. I will say that the ped and I just discussed putting IVIG on the backburner as a soon to be treatment because of the current flare we are in. Good luck to you.