Dedee

My daughter is 8 and weighs 64 lbs. She was on 250mg of Zith daily along with Minocycline when she got peri-anal strep. They stoped the Zith and gave her 10 days of Augmentin. We had stopped the Augmentin on a Friday (and restarted the Zith), and on Sunday she had a throat swab that was positive for strep. She is now on Biaxin. So my experience is that Zith did not cover her at all. Also, my daughter only gets mildly elevated strep titers. In fact they are very close to normal and her pediatrician once said she thought it was probably normal for her. Wrong! We are having spring break next week so we have decided to take another trip to Florida for a follow up with Dr M. and get a short 1 week CBT refresher. Also, we have an appointment with Dr. B the end of the month. My husband is working his butt off trying to make enough to pay for all these trips and the medical bills are stacking up. But what else can you do????

Nancy, I'm a little late to jump in here to say how happy I am for you and your family. It's a given that your son would turn out so well with such a warm and compassionate Mother in his corner. You are a great Mother, and your son is so lucky to have you. It's wonderful that you are able to see positive rewards for all of your hard work. I too, want to thank you for sticking around to support others who are still on that journey. You are an inspiration and a wealth of knowledge. With Appreciation and Admiration - Dedee

My daughter has been constipated as long as I can remember. Also, has had complaints of stomach pains and heartburn for years. We have seen GI doctors and had her upper and lower GI series done which showed everything as normal. We have found that high dose probiotics and miralax to be the biggest thing to help her. She takes magnesium occasionally, but not sure I give her enough to make a difference. Magnesium is supposed to really help. I believe stomach complaints are very common in these kids and our integrative doctor says it has to do with inflammation in the gut as well as the brain. I do find she complains more during flares than when things are going smooth. Wish we had the answer to some of these strange issues these kids deal with. Dedee

I fought giving my son SSRI's for a long time because I didn't want him on any psych meds. Finally after he started asking me to get him some medicine to help him get better, I relented. He is now on Lexapro and doing much better. My other son had taken celexa and done well also, he has since been weaned off after several years of antibiotic therapy. I was hesitant to start the meds but we started at a low dose and increased slowly and are seeing good results. If she is really that miserable, I would do it. JMHO. Best of luck. Dedee

Thank you so much everyone. Last night wasn't too bad. She was mostly very humble because she knew she had done a really bad thing and I think was very afraid of my reaction. That wont last long. LLM, your description of a conversation with your son is almost identical to some of the incidents that we have. So frustrating. I have her on milk thistle for detox but havent heard about resveratol. I may try that. She is on Gutpro 50billion units for probiotics and I try to get her to drink lots of water, but I doubt she gets enough while she is in school. I'm going to try to stick it out on the Augmentin I guess. The ped only gave me a 10 day supply so I will see how things go after that. I just really think we need to have more testing. There must be something else at play here or this myco / strep combo is really doing a number on her. I just can't get to another doctor quick enough. I guess you all know how that feels. Thank you all so much for being here for me and your kind and supportive words of encouragement. You all are my rock! Dedee

Last week I thought I had it all figured out when I found that my daughter had peri-anal strep. I took her to the ped and she gave us Augmentin (dd never had that before). I was really excited thinking this must be the reason she had been doing so poorly and now maybe we would get some relief. Well, we did start seeing improvement after the first day and actually had about 2 really good days before all ###### broke loose. She was horrible all weekend.....raging for long periods of time, crying over everything, etc. So the kids were out of school today and she stayed home with her brothers. She called me at work wanting permission to do something and when I said no she started having a fit at home. She kept calling me over and over and finally I had to stop answering the phone because I was going into a meeting. While I was in the meeting, my son texts me a picture of my daughters bedroom window which was broken because she had thrown the phone at it when I didn't answer her call. Nice. So I had to call my husband to go home and deal with things. I just can't figure this out! What is making her deteriorate so badly? I guess I am mostly just venting. I just don't know what to do. I'm not sure I can wait another month for the appointment with Dr. B. I was looking into a LLMD that I had a lead on, but they are out of the office till Wed. I was hoping maybe by some miracle, I might be able to get in there sooner. This is just about more than I can handle and still work a full time job. Unfortunately, I can't quit because our health insurance comes from my job. I usually try not to have these pity parties, but I can't seem to shake this one. Thanks for listening. If anyone has any words of advice, I would greatly appreciate hearing it. Dedee

Hello, I don't have much time, so I'm just going to get right to the point (and my opinion). I think your daughter has PANS and has had it for a long time. OCD in children is more than rituals, lining up things, handwashing and counting. Although those are often seen. To me, your description of your daughter is classic "chronic PANS"(my term, not official). I was in denial that my daughter had it since she was a toddler. Now in hindsight I see everything more clearly. Her two older brothers had it but because she wasn't exactly the same as them, I kept telling myself that she was different. Wrong. Now she is eight and has been on a downward spiral off and on since the flu mist 15 months ago. I know it's hard to deal with treating 2 PANS kids at the same time. Going through that myself. But I think waiting to see how your son responds would be a mistake. It's the big elephant in the room....attack it one bite at a time. JMHO. Dedee

Arial95 is right. Dr. M usually does prefer the antibiotic approach. We have seen her with our oldest son several years ago when she was at another facility and most recently with our daughter at USF. However, we were having such an awful time with my daughter and part of my daughters issues (at that time) was that she wouldn't take medication in any form. In fact if we tried to force liquid or she thought it was mixed in food or drink she would induce vomiting. So at our second visit, I was absolutely defeated because there was no way to get her better if we couldn't get any antibiotics in her. I brought up the topic of IVIG and Dr. M agreed due to the fact that we were only seeing worsening symptoms and no other way to attack the issue. The first IVIG brought us to the best place we have EVER been with my daughter, including getting her to start taking medications (pills). When she started to regress (even while on antibiotics), Dr. M suggested a second IVIG. We didn't get as good a response with the second as with the first, but still some improvement. We still have maintained some of the gains we made with the IVIG, such as her being able to swallow pills. Also, she is still able to attend school, which she couldn't do prior to the IVIG. So the seperation anxiety is much better. However, the rages, ODD, and most OCD issues have all re-surfaced. Since we had to pay 100% out of pocket for the IVIG, we aren't looking at doing another right now. However, I do think that Dr. M takes things very much on a case by case basis and as Arial95 said, she usually likes IVIG in situations of immune deficiency. But for us (we didn't have immune deficiency), she looked at the big picture and agreed. It's just not the first thing she jumps to. If you know already that you want to go that route, than I would probably choose someone known to use that as a first line therapy. If you prefer a more conservative approach, with potential to move that direction if necessary, I think she is great. JMHO. Dedee

Again, thank you all for your caring responses. Your experiences and suggestions are invaluable. We had an interesting turn of events today. I took my daughter to our pediatrician so they could check the rash on her bottom. Pediatrician said it was peri-anal strep (as I suspected). Daughter had been on Zith 3 days a week in addition to her Minocycline. So the pediatrician gave her a 10 day round of Augmentin. My pediatrician believes in PANS but is still very hesitant with the antibiotics. I usually get them from the Integrative Medicine doctor we use but I was unable to get through to her today. I believe my son probably has anal strep also because he was complaining about 2 weeks ago of the same thing and I sort of ignored the whole thing. I’m not sure why I haven’t seen this as a possibility before. She gets this same sort of problem every few months. I’m not convinced this is going to solve everything. After all, she got a 5 day run of IV clindamycin about a month ago. I would have thought that would take care of such issues. Evidently not. So I guess we will see where things go with this. I think we are still planning on seeing Dr. B the end of March. I have been searching and searching and there doesn’t seem to be any good LLMD’s anywhere around us. Clearly going to be another full day trip somewhere. Question will just be where? My son is seeing some improvement since we started Lexapro. Nothing huge, but he says the thoughts aren’t as persistent. After researching more on his previous Lyme test, I just question more what the previous doctor had told us about those results. He had 2 bands that were Lyme specific which the doctor at that time said meant it was negative. So we just continued with the Myco P treatment. Even now with the Myco titers being back to normal (and the symptoms persisting), the doctor still doesn’t mention pursuing Lyme. I don’t get the idea that he is part of the “real” LLMD list. So I guess the question is should I try to get some Lyme tests done for my daughter and possibly test for other co-infections in my son prior to going to see Dr. B? I just really wonder how an LLMD will read his results. All I know for certain is that something around here has to give. We are on our last leg with these two kids. My daughter especially is so difficult to deal with. I need some answers and some action…..Quick! Dedee

I just want to second everything that DCMom said. The best thing we can do for our families is to seek some sort of CBT or ERP therapy. I am speaking mostly in terms of those who have children with raging and defiance issues. I have three PANS children, but it's my daughter who rages and has ODD that has absolutely torn our family apart. The best thing we did was to go to USF for their CBT program last summer. We are going back for a refresher during spring break and also to take my son (who didn't go last year). It is so helpful for the entire family and they really understand PANDAS and children. Even if you can't make a trip to Florida, find a program near by and give it a try. JMHO. Dedee

You have just described my daughter almost completely. We are struggling with the same issue right now. Also awaiting to see another specialist in late March. I do have an idea though that my daughter may also have anal strep because of what I found a couple nights ago. Think we are going for a strep test on that this afternoon. Strep can hide there and not show elevated titers or other signs of apparent illness. Guess I will see this afternoon. As for your question about how to decide if her behavior is her illness or normal 5 year old behavior.....Well my husband struggles with that all the time. He always wants to know is that her OCD or is she just being stubborn? What we have been told by CBT & ERP therapist is that actually it doesn't matter so much the cause as the response you give her. Even if it is OCD they still have to know that it isn't acceptable to hit, throw, etc. We don't scream or call names regardless of how we feel (these are therapist words). You and your husband will need to come up with a game plan ahead of time on how you are going to react in each situation and stick to it. One of our issues is taking medication. Always has been. So that is a "no compromise" situation. No matter how much screaming, crying, complaining, storming, locking herself in her room, we never back down....EVER! I found that when I do it once, I have lost completely. By the next time, she won't take any at all. So last night she had a screaming fit for two hours because I told her if she didn't take her medicine there would be no TV and no play time that night or the next day. Obviously, I can't force her to swallow (tried that before), but I can take her toys, TV, video games, play time, everything dear to her until she agrees. Of course, this makes her furious, so beware the wrath....she becomes a raging inferno. My husband had to hold her for a long time last night just to keep her from destroying the living room. BUT...once the dust settled (two hours later)she walked over to the table and took all her pills in about 30 seconds. Done. Of course, my husband and I are looking at her and thinking WHY did we just go through all this if you can do it that quickly??? I don't have the answer to that. I couldn't even answer my husband when he said "so was that OCD or defiance or what?" I only know, for us, in those situations, we can not give in. We have to pick our battles, but the really important stuff, it doesn't matter. The line is gray, but the therapist have just told us to pick the big issues and never give in. Of course, that is all easier said than done. My best suggestion is to try to get into a CBT or ERP program. That has helped our entire family tremendously. Best of luck. Dedee

We had a horrible night last night again with my daughter. It was a 2 hour ordeal just getting her to take her medicine. While she was dressing for bed she mentioned that her bottom was still hurting. She had told me yesterday and I had put some desitin on it. So this time while I was putting medicine on it again, all the sudden it hit me....what if this is peri-anal strep??? I have never seen it, only heard others here talk about it. My daughter has this issue with her bottom every few months where it gets extremely red around her anus (sorry for too much detail), and is painful and itchy. I have always sort of put it down to the fact that she is always constipated and has trouble with her bowels anyway. She has been complaining about feeling bad and having a stomach ache for the past week or so. My son also does this occasionally, but I would say maybe only a couple times a year. I have just never put the two together. Where have I been? How could I have overlooked this? Can someone please give me more information about the symptoms and how it looks and so forth. In the past it has eventually gone away after treatment with desitin and other rash type treatment. Would it do that if it was strep? Can someone please help me piece this together?? Dedee

Hello everyone....I am mostly a PANDAS / PANS poster but am beginning to suspect that two of my kids PANS symptoms may go beyond the current Myco P. diagnosis. My 12 year old son has had symptoms for several years in response to strep but usually symptoms would resolve with antibiotic treatment. My daughter has had "mild flares" at different times during her life but her huge flare was 15 months ago after a flu mist (she is 8 now). It was at that time that we found out that both my middle son and daughter were IgG and IgM positive for Myco P. They have both been on antibiotics for about nine months. First Zithromax, then they switched my son to doxycycline and my daugher to biaxin. My son has since had myco p. titers that came back in the normal range but his OCD and anxiety symptoms have not resolved. My daughter went on to receive 2 HD IVIG's and then most recently a five day round of IV clindamycin and is on oral Minocycline. She did wonderfully last summer after her IVIG's but after a few months started a downward spiral that we can't seem to pull out of. She is still IgG and IgM positive for myco p. Her strep titers are only barely elevated. She has had full strength antibiotics for that and is now on Zith 3 days a week as is my son. I'm just not sure where else to turn if not to look down the Lyme road. I know that Myco p. is often a co-infection of lyme, so I guess it makes sense to start there?? One of the local doctors that we have seen who is a "PANDAS believer" and also listed as an LLMD really has me confused. Since he was on the list as an LLMD, I spoke to him about it and he really didn't encourage me at all. Just said that the antibiotics they were on already would treat Lyme so there wasn't really any point. So I'm very confused about the whole LLMD thing. Like I said, I have actually seen 2 doctors local for my children's PANS and both were also listed as LLMD's. But neither of them really seem as aggressive about testing like some of the things I read from this board. They were both more wishy washy about how it's not a real definitive diagnosis and we are already on antibiotics and so forth, so then that makes me question myself. I don't know, maybe we just don't have any really good LLMD's in our area. I even went to ILADS and got names but there weren't any others listed for Tennessee. We have appointments scheduled for both kids to see Dr. B in late March. This will be a 13 hour drive for us, not to mention the stress of riding in a car that long with 3 PANS kids. If anyone has any advice or experience that might be helpful to this situation, I would love to hear it. Also, if you know of any really good LLMD's in or around the Tennessee area I would greatly appreciate a heads up on that. You can just PM me with that info if needed. Thank you all so much for reading this far and for any help you may be able to offer. Dedee

So glad things are better for you. Praying for that 100%! Dedee

Thank you all so much for your supportive and caring responses. You guys always come through for me in the really bad times. This is one of those times (in dealing with all our kids), that I am truly at a lose of which path I should take next. I know you all understand that (at this point) I feel that I should be clear about what I want our next move to be before making or going to our next appointment. Otherwise, I risk the chance of making a very long, expensive trip and coming home with no more than we have now. We had a tough week-end. My daughter's defiance and frustration intolerance is escalating. In addition, my husband's intolerance is increasing, and he isn't dealing with this well at all. I tried to have a talk with him this morning (during a moment of sanity)to try to make him understand that his responses to her behavior have a huge impact on her. It all makes me so sad. He loves her so much, but it's so hard for him to understand why she can't just control her behavior, even though he completely believes in this illness. She constantly complains of a tummy ache and he thinks she is faking and trying to get attention or trying to get out of taking her medication. I try to get him to see that when she gets worse is when her physical symptoms come back also. When she is good, she doesn't complain with her stomach. Anyway, I guess we will try to keep the appointment with Dr. B. and tough it out for the next 5 weeks. I am going to talk with her doctor and see about increasing her Lamictal. That seems to be helping a little, at least short term. I just wish I understood what was causing this downward shift..... Again, Thank you all for your support and guidance. With Much Appreciation and Affection - Dedee

Most of you are familiar with my daughter’s situation. She had an acute onset 15 months ago after a flu mist. She is fighting Mycoplasma and has been on antibiotics for nine months, had 2 HD IVIG’s last summer, and one round of IV antibiotics (two weeks ago). Also we recently started her on Lamictal which is currently up to 50mg per day. We saw great improvement after the IVIG’s but then regression again after a viral infection. Things have gradually gone downhill this winter and we can’t seem to get back on a road to recovery. Her Myco p. titers are still elevated which is what prompted the round of IV antibiotics a few weeks ago. We have seen mild improvement with that but nothing huge. The Lamictal seems to be helping some and I have a call in to the doctor to see if we should discuss increasing the dose. My question (and my suspicion), is whether she may also have Lyme. We have tested her for many other infections, but not lyme or its co-infections. Then integrative medicine doctor that we see said she would do it but wanted to see how she did on this last protocol we tried because it is also used to treat lyme. It was the combination of IV Clindamycin for 5 days with pre and post oral minocycline. Again, we saw some improvement but nothing huge. Don’t think we are herxing……we were / are being very pro-active in preventing a herx or yeast. The antibiotics we have used in the past are Zithromax for six weeks but saw little results. Then went to Biaxin and got great results but when she started to regress they switched to Erythromycin which she was on for little over a month before we decided to try the Minocycline / Clindamycin IV protocol. She also still takes Zith 3 days a week to prevent any strep exposures. Her strep titers were slightly elevated at one time, but back to normal now. The supplements she is on are: Fish oil, NAC, Vit C, ALA, Vit D3, Probiotics. We have an appointment to see Dr. B. in late March but I’m not sure that is who we need to see if this is a Lyme issue. I am also taking my son when we go see Dr. B (if we keep the appointment), because we are also having so much trouble with his OCD also. He has been positive for myco p also but after about 6 months of antibiotics his titers returned to normal. Problem is, that his symptoms (OCD, anxiety), have never gone away. I’m just at my wits end……we don’t have any good LLMD’s in this area. I have to work really hard on my husband and convince him that this is really a necessary appointment because of the expense and time. We will have to take several days off work and drive about 13 hours (with 3 PANS kids) to get to Dr. B. If I end up still needing another doctor after that……well, that is going to be a hard sell if you know what I mean. We spent 3 weeks in Florida last summer at the Rothman Center doing CBT (an awesome program) and we have seen Dr. M several times. That’s a long trip as well. So, I guess you understand my concern over where I need to turn next. I am desperate for advice / opinions. Life is very overwhelming right now……. Dedee

I agree with LLM's post. I just wanted to add that OCD presents very differently in different kids. I have three PANS children all with OCD. However, I didn't recognize the OCD in my daughter for years. She isn't typical hand washing or contamination fears. She has a very rigid personality with low frustration tolerance which on the outside looks alot like a strong willed (or spoiled) little girl. There was a post on here not to long ago in which someone (I can't remember who) discussed the differences in how OCD can look in children. It was a great description and I wish I had saved it for reference for others. Maybe someone will come along and remember where it was for you. My daughter could easily be mistaken for bipolar. Even my husband has mentioned it....although after my response, I doubt he will ever say it out loud again. It is much easier to label these children than go through the long process of accurate diagnosis and treatment by these doctors. When I took my daughter to Dr. M in Florida and we were discussing the difference in how her PANS looks and why I was so hesitant to call it OCD, she just shook her head. She said in children, it often looks just like my daughter (rages, inflexibility, frustration intolerance)and that it is actually more rare to see the "typical" handwashing type OCD in young kids. I think as a society, we would rather just label the parents as bad parents or label the child because that's what is most commonly accepted. So my point is that you may be missing OCD behavior because you (or your doctor)have labeled it as something eles. Just something to think about. Don't give up. Dedee

Yes, I completely understand your frustration. I recently took my son to a doctor who was supposed to be a "PANDAS" doctor only to be told my son probably wasn't PANDAS / PANS because he didn't have strep (he has positive IgG & IgM for myco p.). We continued to talk for a while before I finally realized that he really didn't get the concept that other infections can cause this illness. His only recommendation was SSRI's, even though my son has an immune deficiency. He didn't even look over the previous labs. So, this really re-enforces my belief that there are only a few "real" PANDAS / PANS specialists out there. As much as I hate to say it, you may have to take a road trip. We recently found out that one of the really great specialists actually takes our insurance even though he is several states away. So our only obstacle is trying to get there in a car with 3 PANDAS kids. I would suggest checking into some of the true "specialist". You may not have to pay so much money if you are willing to take a nice ride through the country. We have seen another specialist in a different area that was also on our insurance. Again, the issue was just the travel, but that actually wasn't as bad as you might think. Clearly though, you need someone experienced in dealing with this on multible levels. I suggest trying to get in ASAP! Best of luck.... Dedee

Thank you so much for sharing. Really needed to hear that right now. You deserve to brag on your son for his hard work and for yours. Dedee

Just want to say welcome to the board and I am sorry you have to find yourself here. You have come to the right place and you will get great information and support from the wonderful people here. It's great that you have already started antibiotics and have an appointment with a specialist. I applaud your quick action. You may want to PM someone on this board from your state and see if they know anything about your specialist. Unfortunately, some here have gone to see physicians claiming to treat PANDAS only to find that they really are not true PANDAS advocates. Long story.....lots of politics. That is most likely not the case in your situation, but it never hurts to check with someone who has BTDT. If you aren't getting much improvement from your current antibiotic after about two weeks, it wouldn't hurt to consider a different one. Zithromax has a good reputation for turning things around quickly with these kids. It has an additional immun-modulating affect that most of the other antibiotics don't have. Also, if you aren't using steriods or Motrin, you might consider going ahead with that. Giving Motrin or Advil a few times a day can help with symptoms by decreasing inflammation. I feel sure with your diligence you will get your daughter back. It takes persistance and determination but I sense that you have what it takes. Best of luck in your journey. Please stick around and keep us updated. Best Wishes - Dedee

I am so sorry for the pain that you and your family are going through. I can feel the dispair in your post and it brings tears to my eyes. We have all been where you are (many still are), and understand the darkness and isolation that you feel. God has given your little boy a wonderful Mother to get him through this difficult time and I know you will rise to the challenge. I understand your sadness and I think the best way to work through that right now is with swift and definitive action. As the previous posters have stated, you need to immediately choose a PANDAS specialist and make an appointment. Sometimes it takes a couple of months to get in so make the appointment ASAP. As you said, you may have to travel, but I assure you it is worth it. If you are in doubt as to which one, make an appointment with two and then decide between them and cancel one after your decision. My point being not to waste time.....get an appointment. Ok, guess you got that empahsis. Once you get a physician who understands and validates what you as a Mother already know, you will feel more empowered and in control of the situation. Most importantly, your son will begin to get the treament he deserves. Try to ignore the "other" health care providers who are ignorant and may make you doubt yourself or just plain tic you off. (No pun intended...Couldn't use the word I wanted to). We have all had to grow thick skin and learned to tune out the stupidity. Stay focused on your family. I know with you guiding this, your son is going to come through this and your family will be stronger because of your dedication. I wish you the best of luck on your journey. Please keep us updated on your son's progress. Best Wishes - Dedee

AMEN Sister!!!!

I just want to add how proud I am of those teenage girls for being brave enough to go on national television. Being a teenage girl is hard enough, then add to it all this controversy (and BS)regarding their symptoms. Everyone here on this forum realizes this isn't mass hysteria but imagine having that being branded on you as a teenager. I feel so terrible for each of those kids and their families. It is hard enough to deal with the sudden onset and all the emotions that go along with that. I can't imagine adding all this media attention to that. Praying for them all..... Dedee

OMG....My daughter is SOOO loud. She is the third of 3 kids so we thought for a long time she was competing for attention. I have also had her hearing tested but it was fine. We constantly tell her to talk in a softer voice but it is something we have to reinforce almost daily.

I really can't add anything more to the good advice that you have already received. Just wanted to emphasize what others have said about getting on antibiotics prior to the T&A and remain on them after the surgery for several weeks. For us the T&A gave great improvement to our oldest son but he was on Augmentin for three weeks prior and nearly a month after. If I were you I wouldn't let this week end without an appointment with a specialist. The longer this goes on the worse the symptoms and the harder it is to treat. Go to one of the "Big Dogs" and get the help you need without wasting your time with the others. Best of luck... Dedee