Dedee

I think in the grand scheme of things, it really is petty. My son's hand writing is horrible and has never gotten better after his biggest flair. Finally one of his teachers told me to stop worring about it and leave him alone. He is good in everything else. That was years ago. As my son tells me all the time....College is about computers! 2 words for your daughter.....Spell check!

I agree with all the above. I can also sympathize with what you are going through. The best thing we ever did was to teach my daughter to take pills when she was 7. We used skittles and I was so shocked at how quickly she learned. It's something we struggle with everyday. Some days are less of a struggle than others. We make it non-negotiable also. No medicine, no play or TV or games. Sometimes it gets really ugly. When things are good, she can take them in no time, other times it may take 30 minutes or longer to get it all down. It's my worst nightmare. Wish I could say something magical to help. Just know you aren't alone. Keep up the good work! Dedee

You need to see a PANDAS specialist as soon as possible. Most likely this will involve travel but it will be worth it in the long run. Make your appointment now because it may take a few months to get in. Local physicians and pediatricians are not going to be able to get you through this. I know it seems like a lot of trouble but it really is necessary. Most folks here travel for their specialist. If you live close to one of the good ones you are fortunate. In the mean time you can try ibuprofen for inflamation and keep the antibiotics going. Dedee

I am so sorry for your current state of confusion. There is nothing worse than when you start to doubt your own decesion making. I have been there, it's not pretty. Just remember you have been making good solid decisions for your son up until now and you will continue to do the right thing moving forward. This is a very confusing presentation I will admit. His regression with combo antibiotics is very similiar to what my daughter is going through also. We are just now seeing a little break in her flair since I increased the amount of the motrin I was giving (based on Dr. T's recommendation from his broadcast). I'm not sure whether you are dealing with lyme or not. But for certain, you weren't making huge headway with the previous treatment. I like the idea of an LLMD, but that is easy to say when it's not me paying for it. I would love to hear (see) the results of the test for myself too. Maybe you could make an appointment and see how things go up until then. I imagine you would be waiting a while to get in with someone. Do your detoxing as much as you can and don't underestimate the benefit of ibuprofen. We actually started camels milk yesterday based on the post from this board. Desperate times call for desperate measures. I'll let you know how it goes. Hang in there. You are an awesome Mother! Dedee

That is really great news to hear! Thank you for sharing. Gives me hope. I look forward to the day when I don't have to coax my daughter out of her locked room to get her in the car to go to the doctor! Dedee

We had that experience with our oldest son several years ago. That was when not much was known about PANDAS. They gave antibiotics for the initial infection then Zoloft for the anxiety and OCD symptoms. We were lucky that it was helpful for him for several years until he had a series of infections that triggered things again. I say if it is working for you, don't rock the boat. Best of luck. Dedee

I am so sorry for what you are going through. My lowest point was when we were fighting insurance, trying to get them to pay for IVIG for my daughter. For us, it never happened and we ended up paying out of pocket, but many do end up winning the fight. It's a terrible feeling to think your childs fate lies in the hands of someone on the other end of the phone who is only looking at financials. I can't help but have a deep resentment for all insurance companies. They have denied so much for my kids. It's very unfair, what you are going through. Everything all at once too. I remember last year there were many days when it took both my husband and myself to get my daughter to school. One of us would drive and the other had to hold her down in the back to keep her from attacking the person driving or to keep her from jumping out. Once at school, the principal would come outside (we called her first to warn her), and she took her kicking and screaming into school while we drove away. It was so terrible. The principal would always call us after she got calmed down. They would take her into the nurses station and keep her there until she was calmed down then take her to her class room. We were very fortunate to have a very understanding principal who was also very strong and could hold her during her fits. We found it was very important not to give in to her school refusal, no matter what. She would go through these episodes off and on through the school year. Usually it only took about twice of us dragging her (literally)into school before she would start going by herself again. All that to say I know where you are and how painful this time is. I wish there was something magical I could say or advice I could give to help your through. It is very much one day to the next and I promise it will get better. Please take care of yourself as much as you can. All my best... Dedee

Welcome, and glad you decided to come out of lurker mode. Thanks for the heads up on camels milk. What is it about the camels milk that is supposed to be responsible for the improvement? Dedee

Actually, we already are using Enhansa. Have been using it for about 4 months. We aren't up to the full dose yet. They want her to take 5 per day eventually. She is currently up to 3 per day. We are lucky that our Integrative Medicine practitioner called in a prescription and our insurance is paying for it. Only costs us a $10 copay. She has tested positive for KPU and is under treatment but I am only treating conservatevly right now because of her symptoms. She had gotten much better at the beginning of treatment but then started to regress so I have backed off on the treatment some. Hard to tell what is causing the regression sometimes. I tend to think it's the lyme treatment though. I'm really considering just starting back the minocycline at a low dose this week-end. Don't really know what difference it makes to stop it if it hasn't made any difference in this flair. What do you think? Dedee

Thanks so much for the site. I do believe she needs more anti-inflammatory. I did increase her ibuprofen last night after listening to Dr. T's interview and realizing that I wasn't giving her enough. I will go with the natural's next. Thanks again. Dedee

I just want to add that when it comes to the complexity of methylation and how that affects detoxification and especially as it relates to MTHFR mutation, I have heard from few (including doctors) who understand it better than LLM. Several of us share in the difficulty of dealing with children who have MTHFR mutation and also KPU. For those who may not know, that causes huge issues with methylation. As a parent to those children, you have no other choice but to become a chemist. I have been a nurse for 26 years, but have learned more about the human body since my children have been diagnosed with MTHFR & KPU than I learned in Nursing school. Thank you LLM for all your help with that issue. Dedee

Well, this is a tricky one. In my experience, herxing has very closly mimicked a flare. In fact, I would go as far as to say I can't really tell a difference. The only thing I have seen differenly with my daughter's herxing since starting lyme treatment is the complaints of physical symptoms. She began the complaints of leg aches, foot and ankle pain, and headaches before the behavior symptoms began. For you, things are complicated by the fact that you have strep in the house. Under normal conditions you would think your son couldn't possibly have gotten it since he is on so many antibiotics but then again, he has gotten strep before on antibiotics. I would probably test him just to rule it out. The other question to ask is are you giving anything to help with the herx reaction? I know how hard that is when he is having a hard time taking medicine. BTW, my daughter does the same thing with racing me while taking her medicine. Now it has become a problem because she has drawn me into this ritual thing with what we have to say and do to start the race......SO, that has back fired on me. Now we have to work on breaking that ritual....ugg, can't wait. I would work really hard at increasing his fluids, giving epsom salt baths, and some other herx treatment to see if that helps. One other thing is to make sure he is pooping daily. Not sure if he has issues in that area or not (my daughter does). Our LLMD says they can't get rid of the toxins if things aren't moving through freely. We have to use Miralax daily (Sorry if TMI). I feel your pain.....we cut back on the lyme antibiotics to try to decrease the herx reaction two weeks ago but so far she is still going full force. I'm at the point now where I figure, if she's going to be a terror I might as well be giving her the full dose and just push through it. I'm not sure I have helped any but I wanted you to know you aren't alone in this struggle. It's got to be really hard with him being so young. Please keep in touch and let me know how he is doing. Dedee

It's a shame that you don't have more access to IVIG. Can you explain why you think you couldn't "cope" with IVIG? I assume you are coping with quite a bit right now. The process of IVIG itself is very simple. There may be a few side effects but they are usually temporary and if you prepare they are easily managed. The most difficult part of IVIG is getting insurance approval and just getting the whole thing set up. For us, once we decided on giving up on the insurance piece and go with out of pocket, it wasn't difficult at all. I understand that it may involve quite a bit of travel on your part so that has potential to be stressful. It would be great if you were able to find someone in your area to help you out. Dedee

Hmm, me too. When ever I hear about tics, and ADHD together I think of PANDAS / PANS. Then throw in a strep component and a big red flag goes up. OCD is a very tricky thing in kids and often goes misdiagnosed. I'm not so sure you actually have to have that piece anyway if you have the others. I'm sorry, I think I would insist on a lab work up. Did you get any relief from antibiotics? What kind did you use? Dedee

I am so glad to hear that your son is doing better. That's awesome. Just want encourage you to really stay on top of the myco p. It rarely goes away with a standard round of antibiotics, even though that is all that most physicians want to prescribe. Keep following your titers and make sure that they go back to normal. I would encourage you to do some research on myco p. as most physicians aren't up on appropriate treatment. If you are seeing a PANDAS specialist or an LLMD your probably in good hands. Make sure you insist on follow up titers. Best of luck. Dedee

Thank you all for your suggestions and your support. I am quite weary. Last night was difficult. My daughter has friends who live next door and they are sick. She spent the entire evening worrying about whether she might get sick. She kept taking her temperature and asking me over and over if I thought she would get sick. Then she started pounding on the couch and crying saying how she was so angry and she didn't understand what she was angry about. Finally, I got her to take a warm bath (with epsom salt)and it helped to calm her down. I was barely able to get her night time medicine in at all. She only took two out of her six needed pills and fell to sleep in the middle of taking them. I decided to forgo the rest and let her stay asleep. Had another hard morning getting her to school. Lots of OCD with taking her medicine and rituals with getting dressed. I am trying to put our ERP training into place but it is so hard on a deadline of getting everyone ready and out the door. Uggg..... I suppose this could all be because of the illness that she has been exposed to (and will probably eventually get), or still the effects of the herxing from the extra antibiotics. She is still on the biaxin which she has been on for a long time, but we stopped the Minocycline. I'm not sure when I should start it back. LLMD said to give her time to level out then start it back slowly. That was over two weeks ago though. Not sure when the "leveling out" is supposed to occur. The good news is that our company is supposed to be changing insurance plans at the end of this year. Rumor has it we are getting a much better plan. I can only pray that is true. If I can get IVIG paid for we would be headed in that direction again in a minute. Keeping my fingers crossed. Dedee

Many of you may remember that my daughter (who just turned 9), just recently started treatment for lyme. She has been under treatment for positive myco p titers for 18 months and has had 2 IVIG's. Her lyme treatment started August 1st. She started having a bad herx reaction about a week to 10 days into the treatment. I started doing all the usual detox therapy. She practically lived in an epsom salt bath. Lots of lemon water. I was able to get milk thistle in sometimes. Unfortunately, when she flares, one of her issues is refusal to take medications so it was very difficult to get in many meds but very consistant with Ibuprofen, milk thistle, and lots of fluids. So after two weeks of horrible herxing with terrible rages, ocd and mood swings, I finally called the LLMD. She told me to stop the antibiotic that we had added until things calmed down and then start it back very slowly beginnig with one a day and working up to two. Problem is, she has been off of this antibiotic for about two and a half weeks now and the behavior is only mildly better. The physical symptoms seem to be better but the rages, ODD, OCD and so forth are still through the roof. I have started to consider putting her on an SSRI. She already takes lamictal but it doesn't help any with her OCD. I know this may only be a temporary thing but over the last two years it's been a constant state of better then worse. I just think that the SSRI might help bring a little calm to the ever brewing storm. My oldest son took an SSRI when he was going through the worst part of his PANDAS symptoms and we were able to wean him off after a few years. It really seemed to help him. My husband isn't very keen on the idea, but he isn't the one who has to deal with most of the rages. Please tell me if you think I am jumping the gun......I am soooo tired of fighting this thing. It's exhausting! I always feel like I'm trying to justify things to my husband too. Why they need to go to this doctor, why they should take that supplement.....Why can't he just trust my judgement if he isn't going to get involved himself? I'm sorry to vent all over the place here. We had a hard morning trying to get to school and I'm starting to get really discouraged. I guess I just need to pull myself up and stop with the pity party.....Thanks for listening.... Dedee

Don't feel bad about resorting to an SSRI. It's not a admission of defeat. I am actually considering starting my daughter on an SSRI as well. My oldest son took it for many years before things started to smooth out for him and we very very slowly weaned him off. He has been off for about four years I think and is doing well. Still a few bumps here and there but over all pretty good. When my youngest was diagnosed with PANS, I was determined I would jump on the treatment path quick and aggressive and avoid the psych meds all together. Well, that was nearly two years ago and things haven't gone exactly as I had planned. I gave in and started Lamictal last winter which has helped some but she still has some issues with OCD and anxiety and at times things can be really bad. The last few weeks, I have really started to think along the lines of an SSRI. She is still getting treatment for ongoing myco p infection and recently started treatment for lyme. Anyway, my point is that you shouldn't be hard on yourself. The SSRI is only a temporary thing until you can get the root cause addressed. If it brings peace to your daughter and your home, I say bring it on...... Dedee

My oldest son took zoloft many years ago and did fine. We started at a very low dose. After a while though he had another strep infection and flared again and they tried to switch him to Luvox and he got much worse so we switched to celexa which worked well. He is now off all SSRI's. I know some kids can't tolerate them but for my oldest it was very helpful to get us through some very tough times. Dedee

So were the myco p titers normal then and only the strep titers elevated? I am so glad this visit went well. It's a great place. Hoping for a great outcome for your daughter! Dedee

You just need to have Mycoplasma IgG and IgM titers ran. I have not heard one way or another if one lab is preferred over another. My daughter and son are both positive for myco p and have been tested several times through different labs. Someone else may have a different experience but our experiences have been the same with both labs.....positive both times. Dedee

I agree with LLM and DCMom. One of the best things a PANDAS parent can do for their family is to invest in CBT / ERP. No matter how impossible it may seem, it will be one of the most helpful things to get your family through this. I would recommend one of the intensive programs to start with. Either the USF program or the program at mayo clinic. If this is absolutely impossible, you should see if there is something local you can do. This will be an investment in sanity for your marriage and your family. It's a hard concept to try to accomplish without professional assistance. We have all been where you are and I can certainly relate to your frustration. We have been through CBT / ERP with two of my kids and we still struggle on occasion with the same issues. However, I can't imagine where my marriage would be if we hadn't gone this route. It also gives the child a sense of empowerment. They learn the skills to deal with their OCD and it gives them feeling of control. My only other suggestion is that I really had to learn to let go of worrying about what others thought. Even my family. It is very painful, I know. But I found I was wasting to much energy trying to convince them of certain things. I actually just quit talking to them about the situation. I have one sister who is very supportive, the others not so much. So I only speak to the one sister about it, no one else. I guess the others only believe my daughter is what they see when they are around her. That's fine. I don't talk to them about her treatments or anything else. They see a normal (but shy) little girl and I don't mention the rages, depression, & OCD that goes on at home. I'm not trying to hide anything. It's just that when we did speak of it before, it wasn't productive so I stopped. They have seen the articles, they have the information. I can't do anything more. This is a very painful time for you. I am so sorry for what you are going through. It will get better. Make sure you are getting your child treated by a PANDAS specialist and get into CBT and you will be on your way to a more peaceful existence. Continue visiting this board and you will get valuable information and support. Best of luck. Dedee

Yep, (take it from a nurse) a trauma center is much more DRAMA than trauma. Crazy isn't it????

So happy to hear you are going. You will love the group at USF. CBT / ERP will be so helpful to the family. As the others have stated, all of the physician's are top of the line. We have had great experiences there. We stayed in a Condo when we were there. There are many good ones to choose from varying in price range. I did a google search and picked ours that way. Maybe we were lucky, but we have gotten nice ones each time. Best of luck. Dedee

My oldest son seems to react only to strep. Several years ago when we could not keep him clear we did T&A while on high dose Augmentin. Best thing we ever did. I think the key is to do high dose antibiotics before and after the surgery. This was the only thing that started to bring his titers down and give relief of symptoms. He has remained on antibiotics but at a low dose since that time. Dedee