Dedee

Thanks LLM. I appreciate your support. I am just so weary. She is back to her old ways of fighting about medicine. Took her an hour last night to get her medicine down. I had a talk with her about how I thought her OCD was trying to boss her around and she agreed but she said it was just too hard right now. She did a little better this morning fighting OCD but still her mood is so irritable and she cries at the drop of a hat. I just know there is more to this whole picture than just the infectious piece. Can't wait to get her 23andme results back. That isn't going to happen anytime soon though so no need holding my breath over that. They just recieved her sample this week. In the mean time, I'm just working on keeping things steady and a progressive detox plan. I ordered some burbur. Think that may be the only thing we haven't tried. Now trying to get it in her without her knowing it is going to be interesting. If she knows there is a liquid anything in her drink, it's over. Hmm, my next challange..... Dedee

Our LLMD had us do some basic labs just to look at liver functions and so forth since my daughter has been on antibiotics for two years now. We also did Myco titers again since she has been IgG and IgM positive for two years. We are also treating lyme. Got her labs back yesterday and everything looked good. For the first time in two years her Myco p IgM titers were negative. Her IgG titers are still pretty elevated but lower than they were last time we checked. So it looks like we are headed in the right direction. Of course we have no idea where we are in terms of lyme. We haven't checked anything since the last time we paid out mega bucks for the Igenex test a year ago. What is discouraging is that we still have so many ups and downs in her moods. She had a virus a couple of weeks ago and we also started a new antibiotic combination a few weeks back. We are having to go super slow on the new antibiotic combination. Starting out on only half the dose prescribed with the first antibiotic for like two weeks then move to adding half of the second antibiotic prescribed. Each time we increase the dose we get a terrible herx reaction and we have to wait at least a week to let things calm down before going up again. When we do increase we only increase the dose once a day and then wait again for things to calm again before increasing it for the second dose of the day. OMG, it takes sooo long to even try to get where she needs to be and she has a terrible herx like every other week. This is killing me. She is constantly complaining that she is tired and doesn't feel good. I try to get her to drink lemon water (or any water for that matter). We work on the epson salt baths most every night. She takes so many supplements that it's a battle just to get everything down her. She is constipated constantly regardless of all the magnesium and vit c that I give her. I try to keep her detoxed with ALA, & milk thistle. I don't know what else I can do. I am so tired of the drama and emotional roller coaster with this child. I need to see some good times again. Help! Dedee

I'm sure you are worried about finances. This is a valid concern. Especially when you are looking at treating lyme. Most LLMD's are not covered by insurance but thankfully, the medications we use have been for us. I will say that the LLMD that we use gives a family discount so if you take in more than one child you get a significant discount on the second, third, etc., family member. I believe most do something similiar. So, that is just something to keep in mind when treating your family. At least you know what you are dealing with now. Once you start getting the lyme treated, the strep will be easier to clear also. Your family can and will get better. Find a good doctor and jump into this treatment knowing your family will be healty and whole soon. You are doing all the right things. Keep up the good work. Dedee

My son's AntiDnase was over 2,000 for more than a year before we had his tonsils and adnoids removed. I know some say this isn't recommended but when you have tonsils that are so infected that they just won't clear, it's the only way. I would just recommend high dose antibiotics before and after surgery. This is what finally cleared the strep for my oldest son. Best of luck. Dedee

I think there is being far to much made about this. I am a cardiac nurse and so we are aware of many drugs with this alert. We have a list in every nurses station. You can google it and you would be suprised how many medications have the same issue. These are medications that (in medical terminology)lengethen the Q-T interval, putting the heart at risk for rhythm problems. There are many other medications that your children may take that do the same things.......Benadryl, Biaxin, Cipro, Diflucan, Celexa, plus many more.....Again, google "drugs that lengthen Q-T interval" and they will list them for you. The problem is usually with people who have pre-existing cardiac issues. Some may or may not know they have these issues. Those people born with some sort of congenitial defect and do not know it, then are placed on several different types of meds that cause the same problem are at risk for life threatening complications. So for instance you have congenitial long Q-T syndrome and then you get a terrible sinus infection. You start taking an antibiotic that causes lengethening Q-T, and a sinus medicine that does the same, then some diflucan for the yeast from the antibiotic, and maybe you are already on a blood pressure medicine that legethens Q-T, and then you get dehydrated on top of it and your electrolytes get out of whack......well then you get the "perfect storm" and it's a set up for life threatening rhythm problems. So you need to look at your family history. Have there been people in your family that have had sudden unexpected death unrealted to a specific illness or disease? Have there been members of the family with sudden cardiac death at a very young age? Do you know of family members with an Internal Cardiac Defibrillator? If you are still unsure, speak to your physician about your risk for sudden cardiac death. Just remember, it's rarely the drug alone. It's a combination of the medication and a genetic and /or physiologic defect. Hope that helps. Dedee

Well it sounds like your first doctor was right on track. Usually the first line treatment is antibiotics. Very few PANDAS cases are going to resolve without them. Thats your least invasive treatment option (in my opinion). I suppose you could try psych meds but you have a good chance of symptoms resolving with the right antibiotics. The potential harm to your childs brain from PANDAS is much greater than any problems from a trial of antibiotics.

My daughter had IVIG twice. Both times she had headache and nausea for a few days after. After her first IVIG, we saw immediate improvement with all her symptoms. This is not a typical response. She did very well for a couple of months and then started to back slide. That was when we did the second IVIG. With this one she regressed immediately and we didn't start to see improvement until about 3 or 4 weeks post infusion. It was a very difficult month. We used Ibuprofen which helped some. Once the improvement started it was slow progress for many months but she made big gains eventually. I think it is different for each child, but most will see an initial set back followed by slow steady progress. Part of the progress (in my opinion), depends on whether or not there is still an existing infection. My daughter still had an underlying Mycoplasma infection and lyme. I believe that is why the first IVIG was not sufficient. She has been on antibiotics since her IVIG's. For my daughter, there is still more progress to be made, but we have come a long way since the initial diagnosis 2 years ago. If we had the money (we had to pay out of pocket), I would do another IVIG this summer, but our insurance won't pay. I think it's great that you got in the study. I hope that you see some improvement soon. Hang in there...this is a tough time either way you look at it. Sounds like you are doing all the right things for your daughter. Please keep us updated on how things are going. Dedee

We also used Biaxin for Myco P and for Strep. Biaxin was one of the first antibiotics to really start helping my daughter. Dedee

The 2013 IOCDF conference is in Atlanta this year which isn't too terribly far from where I live. At least it is driving distance. The brochure shows a PANS / PANDAS track for Saturday which is very exciting! It isn't until July but I have to make plans for these things in advance so that I can find someone to watch the kids etc... I really hope I can talk my husband into doing this with me. Maybe some of you others can make it as well? Lots of the big names in PANDAS / PANS are going to be there speaking. Keeping my fingers crossed I can work this out. Dedee

My daughter was exactly like yours two years ago. I know you are hoping that this will magically and instantly go away with the right treatment. The truth is that this will most likely be a gradual thing. I am not trying to discourage you. I do want to give you something to think about though. Once you get a treatment plan in place, antibiotics etc.. I hope you will seriously think about a CBT / ERP program. This was the only thing that changed our daughters behavior. Yes this is a physiologic response but your daughhter MUST learn the appropriate coping skills and your family must learn the appropriate responses to her reactions. The only place for that is a center that focuses on OCD in kids. We have been to Rothman Center in Florida a few times. It has saved our family. At one point we (like you) were at our breaking point. I was so worried about our other two children and how this was affecting them. My husband and I were constantly fighting about the best way to handle things. USF / Rothman has helped our family more than I can say. You can't put a price on family peace. There is also a program in Rochester Minosota that is similiar to the one at Rothman. One of the therapist that my daughter saw moved there to work at that program. She was an awesome therapist. I know that right now you are thinking of getting her infectious issues under control and that is good. But I would go ahead and start thinking in the direction of a formal program. Anyone who has done it will tell you how life saving it can be. You can always just call and talk with them about the program. Dr. Storch is the head of the program and the best and nicest guy there is. My heart goes out to you. Your daughter sounds so much like mine. My daughter is even now going through a regression as she is sick with some sort of virus that has her in a flare. She had a rage last night but thankfully they don't last very long anymore. I KNOW your daughter can get better. It's goinig to take a combination of medications and therapy. We still struggle with sensitivity issues with her hair and cloths too. I am hoping she will grow out of that or that as the antibiotics continue to heal the lyme, those things will improve. Please stay on this board and ask for help anytime you need it. You need support to get through this difficult time. You are a good Mother and you are doing the right things to get your daughter better. Don't feel bad if you need to use medication temporarily to get her through this crisis time. My suggestion would be lamictal. It works well for rages and has few side effects. Keep us all updated. Best of luck. Dedee

I am so sorry you are feeling this way. It all takes a toll eventually. I have had a really hard winter. Feeling extremely depressed. Finally I have broken down and started myself on Lexapro. I do feel better but not completely back to my old cheerful self. I'm thinking that may come with some warm weather and sunshine. I hope you will be able to find some sort of relief whether it is supplement or medical. It is perfectly normal to wear out after all you have been through. You deserve a break. It would do you a world of good to get away for a few days for a little R&R. Is that possible? Thinking of you and hoping you get some peace. Dedee

For us it was treating the infection and then CBT / ERP was very helpful. Dedee

I am so sorry for what you are going through. That must be so hard. It's great that you are so devoted and have your daughter immediately in the right treatment. You are great parents. My thoughts and prayers are with your family. Keep us updated. Dedee

I could have written your post 2 years ago. My daughter is better now but we still have days every now and then when she regresses to those rages. Relax about school, it is going to have to take a back seat to your daughter's health. I know that goes against everything in your Motherly instinct. If she misses school then she just misses school. Truth is she probably isn't comprehending much right now anyway. Only a PANS parent understands the torment you all are going through right now. This is going to get better, but it may take some time. Sounds like your daughter has had some infectious issues for a while. My daughter was the same way. I struggled so hard with the same issue as you about the medication. It is a very personal decision. Eventually, I gave in a we put my daughter on lamictal which is a mood stabilizer. It has helped with the rages. We still have not used an SSRI although I have not ruled that out for the future. I did not regret the mood stabilizer as it just calmed things down a bit and allowed us some breathing room while we waited on the treatment to start working. There is certainly no shame in making that decision. I understand how you worry about not knowing the difference between medication side effects and the illness. That was why our practitioner chose lamictal. Very low incidence of those kinds of reactions. In the case of your daugher you may ask about something other than an SSRI. Sometimes mood stabilizers work better for kids who tend to rage. My other suggestion is to find a good LLMD. You mentioned before that you had seen one in the past that wasn't very helpful. You need to find another one. A good LLMD will be able to find the right combination of antibiotics for your daughter. It wasn't until we started using combo antibiotics that my daughter really started to improve. We saw mild improvement with biaxin but the real improvement came by combining antibiotics. Hope things get better for your daughter soon. I know how devestating this is to a family. Dedee

I use garlic with my daughter also and I have a daughter who will use any excuse to rage. I did not see any increase in raging with the garlic. I will say however, that when we use diflucan for yeast that she always has a bad day the next day. Quick temper and more tendency for raging. So I do think that yeast die off can cause those type of symptoms but I'm not sure that garlic gives such a bad die off. Some children are more sensitive than others though so I guess you never know but my guess is it's a coincidence. Sure hope things improve for you. Dedee

So glad you had a positive experience. Dr. R is awesome. I wish I could bring him to us once a week. Rothman is an excellent place for CBT / ERP. Hopefully your daughter has found some confidence and tools to use moving forward. Dedee

I am not big on jumping into medication quickly either. However, I would be suprised if the Celexa would cause an extreme response that quickly. Of course with PANS kids anything is possible. I am sure you are extremely worried and don't know what to do next. I have been there with my son many years ago. We ended up staying with a low dose of an SSRI and things smoothed out after a few days. But if you really think it's the medication, you should trust your gut and try something else. You could always stop for a few days and then try again at a lower dose. Just offering up options here. So sorry your daughter is going through such a difficult time. Dedee

Welcome to the forum. I am so sorry for your circumstances. You have gotten very good advice. If your daughter has had Myco P in the past and now having the symptoms you are describing then this is most likely PANS. You should absolutely do as the other posters are suggesting and invest in your daughters future by taking her to someone who specializes in this area. More than one specialist is even better. I know that is very hard to swallow this early in the game, but save yourself the time and heartache early on. We went through "financial denial" for a long time. Talked about how we couldn't afford it, blah, blah, blah. Then we sucked it up, sold some stuff, and did it. I'm not suggesting you are like us. Only telling you that in our experience it was worth the out of pocket we had to spend. This is a horrible disease and it is so draining on the entire family. But it can get better with the right guidance and treatment. You are on the right track by being here. The next step is the right doctor. Keep us all updated. Best of luck. Dedee

Ugg, that statement makes my blood boil, although I must say I'm not suprised. Please find a new pediatrician ASAP. Regardless of the outcome, you don't need that attitude to anything or any idea you bring in the office. It is so unprofessional, closed minded, egotistical....I could go on and on..... Dedee

I can't really tell much difference when she takes NAC. She took it for about four months before my Integrative Practitioner switched her to ALA. She said the NAC had a tendency to increase yeast (I had never heard that before) and we had tons of trouble with yeast in the past. Right now we use both ALA and acetyl glutathione. My daughter is MTHFR positive and also has KPU so she clearly has methylation issues. Dedee

We are using acetyl glutathione now. We have used NAC in the past to indirectly increase glutathione levels. Then I heard about acetyl glutathione which is relatively new (at least to me) and is supposed to be absorbed orally. We have seen good results from it. Unless it was just a coincidence that my daughter improved the same month that we started this supplement (I never discount anything). It seemed to help with her staying stuck on certain ideas and with her tantrums. It isn't cheap but I found a good sale at AllStarHealth on line. We only use it once a day but I have considered going up recently since we are seeing a herx reaction from a change in antibiotics recently. Let me know if you decide to use it and what sort of response you get. Dedee

Congrats, you are in for a great experience. Dr. Rahman is wonderful. Unless you also have an appointment with one of the medical doctors (Dr. Murphy or one of her crew) you will not get a medical work up. The CBT program there is the best around. However, if you are looking for assistance for lyme treatment, you should probably look into finding a good LLMD. USF is not known for it's lyme protocol. Don't get me wrong, we love Dr. Murphy and have been to her several times with our kids. We have also used their CBT program with great success with our kids. But when we started with lyme treatment for our daughter, we found an LLMD. Certain Centers are highly focused and highly successful in specific areas. USF / Rothman is very successful in their CBT / ERP program. Hands down the best there is! Dr. Murphy is also an excellent PANDAS / PANS specialist. However, when you start talking about lyme and co-infections, that's another highly specialized area, so you have to start looking for other places that put their resources only in that field. It's a shame you have to travel around to get the help you need but it is reality. Enjoy your trip south. I'm sure you will find it extremely helpful. Dedee

Its good that you are looking at this. It has really helped my daughter. I would also be looking closely at her antibiotic type amd dose. Make sure you are adequately addressing all possible infections.

It was the best thing we ever did for our oldest son. He is strictly a PANDAS kid. He reacted to strep and did not have the myco that my other two have. We had him on high dose Augmentin before surgery and for several weeks after surgery. It made a huge difference for him. Dedee