Dedee

We live in Tennessee but travel 13 hours to Florida to see Dr. Murphy who is located in St. Petersburg at All Children's Hospital. She is very good. Also, if that isn't the part of Florida you are looking for there is a group in Melbourne Florida who treat PANDAS patients also. I think it is Dr. Rossignol and Bradstreet. Check out the thread at the top of the page and it has a list of doctor's who treat and what state they are located. We use the term PANS because it is a broader term that doesn't specify the specific bacteria or virus that the child may be reacting to. The term PANDAS refers to a child reacting to only the strep bacteria. It's the same concept, but PANS is just broader. Dedee

Have you seen a PANDAS specialist? It sounds like PANS to me. I hear you say that Amoxicillin helps but perhaps another antibiotic would give you even more resolution. I would get an appointment with a PANS specialist as quickly as possible. Do not mess around with those who "think" they can help you. It's not worth it. All of these symptoms could possibly be resolved with the appropriate treatment. You need someone who knows what they are doing. Do not delay. Call someone right away for an appointment as you will most likely have to wait a few months to get in. Best of luck. Dedee

My daughter constantly complains that she feels like she is going to throw up. She also sometimes complains that she has a "tummy ache" too but not necessarily at the same time. It is so frustrating, because she will say she is hungry but can't eat because she feels like she is going to throw up. Maybe this is what she is trying to describe? Dedee

When my daughter was at her worst she was terribly aggressive, and had awful rages. I put off giving her any sort of prescription medication as long as we could. But after a year, I finally gave in to my Doctor's suggestion and we started Lamictal and it helped a great deal. You start slowly and work up on the dose, but we saw results within a few days. Now I wonder why I worried so much. Life is so much less dramatic for everyone. Her doctor says as we get the infection cleared we will wean her off. Dedee

We just celebrated our one year post IVIG with our daughter. She was 7 when she received her IVIG and we then followed it with CBT / ERP. I can tell you that the CBT / ERP was equally as helpful as the IVIG. One year later, she is doing so much better. I do believe in the "tincture of time" theory, although it is so very hard to actually live it. But again (and not trying to sound like a CBT therapist), the CBT/ERP will help you get through that time. I have 3 PANS kids and we have done CBT with all three at different ages and my youngest did the best. She seemed to be more open to the concepts. My biggest regret is that I didn't do this with my teenager when he was younger. At his age now, he is so very "stuck" in his ideas and resistant to the therapy. Over the past year, we have found a MTHFR mutation, KPU, and only a week ago started antibiotics for possible lyme disease. So I am also a believer that the right vitamins can be a huge help. So my recommendation is not to stop with just IVIG. I think (JMHO), that IVIG is always helpful but not always the complete answer. Hang in there. Things will get better. You are on the right road. Dedee

1tiredmama, I'm not sure I can answer that question with certainty. My understanding is that both Myco p and Lyme are stealth pathogens and can evade antibiotics for long periods of time. They are able to move about in the body so if you are giving an antibiotic with good coverage for say upper respiratory then it will simply move to an area of the body that the current antibiotic will not cover. Thus the importance of more than one antibiotic. So far my kids have only been on one antibiotic at a time. Although we have tried more than one type of antibiotic, we have never tried a combo of antibiotics at the same time. Evidently this can be key to getting rid of Lyme and other tic borne illnesses. In addition, Lyme (in a self preservation effort) will form cysts in order to "hide" or protect itself from the antibiotic, so additional "cyst busting agents" may be necessary at some point to push through this stage. My daughter has continued to be positive for Myco p for over 18 months despite antibiotic treatment so there was some suspicion that there may be another infection going on that was preventing her from clearing. This is all new to me and I admit that I am a bit skeptical, but in a weird way it makes sense and I am willing to try the combo treatment in hopes of at least clearing the myco p (which I am sure about). I am praying for a good result.....Thanks for everyone's well wishes. You guys are my rock! Dedee

We just got something called Kavinace by Neuroscience. It is supposed to help promote sleep and decrease anxiety. It was recommended by our LLMD. Haven't tried it yet. Melatonin just doesn't work for us and it makes my daughter crazy. I have heard of this extreme type of insomnia in the acute phases before. It's very hard to deal with. I am so sorry. I have heard good things about Dr. Chunagi. Keep us updated. Praying for your family. Dedee

We use LDA Multivitamin made by Klaire. All of our children have MTHFR mutation and KPU so we have to have specific types of B vitamins plus L-5-methyltetrahydrafolate. Also I add some additional Zinc piclonate and P-5-P (B-6)for the KPU. My son has a double MTHFR mutation so I give him additional methyl folate made by "seeking health". I have seen great improvement in the kids with the addition of the B vitamins especially. Dedee

We made the long awaited trip to the LLMD yesterday. It was a 5 hour trip, saw the doctor for about 3 hours and then 5 hours home.....exhausting! We had appointments for two of the children but we ended up "working in" the third one while we were there. Our history is that we have 3 children with PANS. All 3 in different stages. The oldest is the most stable, he has had it for 10 years and does pretty well but still a few residual eating issues and some mood swings. My 13 & 8 yr old kids are still in recovery mode with the youngest being the most challenging. Both of the younger ones have had Myco p and my daughter (8)can't seem to get rid of it. I had tested the younger ones for Lyme and both came back border line with a few lyme specific bands showing Ind. My daughter's test being more suspecious than my son's but both concerning. So since we really weren't getting complete resolution of symptoms after over a year of treatment, I made an appointment several months ago for the LLMD. Long story a little shorter, the LLMD said she believed, considering the history, and the test results, that we are most likely dealing with Lyme. She was more sure in my daughter's case but highly suspicious for both boys as well. We will be starting combination antibiotic treatment and hoping to see some results. My oldest son who is 16 didn't have an appointment and did not have any labs done at all. I just asked her to look at his "stretch marks" to get an opinion as to whether they were true "stretch marks" or possibly bartonella markings. Without him even being a patient, she took his shirt off and did a thorough exam and said we should make an appointment for him also. When she had finished with the other two, I asked if she could go ahead and see my older one the same day since we had traveled 5 hours and we had finished a little early with the others and she agreed. So now we will be treating all three and hoping for some final resolution of these PANS symptoms. She talked quite a bit about a link between PANS children and Lyme. Said they really aren't sure what the link is yet but it's becoming more and more clear that there is a link. She said she thinks that either the PANDAS makes them more prone to contracting tick borne illness or that having a chronic tick borne illness may increase the likely hood of a neurologic reaction to strep.....not sure, just something that some doctor's are speculating. Anyway, not sure how I feel about it all. I am hopeful we can get to the bottom of things. We talked some about the MTHFR mutation that all my kids have and the KPU but honestly she knew just about as much about it as I already did. She thought she had a KPU protocol somewhere from a conference she had attended and promised to look it up. I was a little disappointed that I didn't get a little more guidance in that direction. Seems there are so few doctor's who really know what to tell you about all that. But overall I really liked her and thought it was worth the trip. It was definately worth taking my husband so he could hear it all from an expert. We have a follow up phone consult in November. Will keep you all posted. Keeping my fingers crossed....... Dedee

We made the long awaited trip to the LLMD yesterday. It was a 5 hour trip one way. We had appointments for two of the children but we ended up "working in" the third one while we were there. Our history is that we have 3 children with PANS. All 3 in different stages. The oldest is the most stable, he has had it for 10 years and does pretty well but still a few residual eating issues and some mood swings. My 13 & 8 yr old kids are still in recovery mode with the youngest being the most challenging. Both of the younger ones have had Myco p and my daughter (8)can't seem to get rid of it. I had tested the younger ones for Lyme and both came back border line with a few lyme specific bands showing Ind. My daughter's test being more indicative than my son's but both suspecious. So since we really weren't getting complete resolution of symptoms after over a year of treatment, I made an appointment several months ago for the LLMD. Long story a little shorter, the LLMD said she believed, considering the history, and the test results that we are most likely dealing with Lyme. She was more sure in my daughter's case but highly suspicious for both boys as well. We will be starting combination antibiotic treatment and hoping to see some results. My oldest son who is 16 didn't have an appointment and did not have any labs done at all. I just asked her to look at his "stretch marks" to get an opinion as to whether they were true "stretch marks" or possibly bartonella markings. Without him even being a patient, she took his shirt off and did a thorough exam and said we should make an appointment for him also. When she had finished with the other two, I asked if she could go ahead and see my older one the same day since we had traveled 5 hours and we had finished a little early with the others and she agreed. So now we will be treating all three and hoping for some final resolution of these PANS symptoms. She talked quite a bit about a link between PANS children and Lyme. Said they really aren't sure what the link is yet but it's becoming more and more clear that there is a link. She said she thinks that either the PANDAS makes them more prone to contracting tick borne illness or that having a chronic tick borne illness may increase the likely hood of a neurologic reaction to strep.....not sure, just something that some doctor's are speculating. Anyway, not sure how I feel about it all. I am hopeful we can get to the bottom of things. We talked some about the MTHFR mutation that all my kids have and the KPU but honestly she knew just about as much about it as I already did. She thought she had a KPU protocol somewhere from a conference she had attended and promised to look it up. I was a little disappointed that I didn't get a little more guidance in that direction. Seems there are so few doctor's who really know what to tell you about all that. But overall I really liked her and thought it was worth the trip. It was definately worth taking my husband so he could hear it all from an expert. We have a follow up phone consult in November. Keeping my fingers crossed....... Dedee

My daughter weighed 60 lbs and we paid 8K for 2g/kg over 2 days. We were able to purchase the medication from our local pharmacist at cost and then just paid for them to do the infusion. This was done through our local Integrative Medicine Practitioner. We had to pay out of pocket as we were denied through Cigna. Dedee

I understand how hard it is to deal with finding out that yet another child has PANS. I too was in denial about my daughter until I was hit full force with her symptoms right after she had the flu mist. I thought I couldn't deal with a third PANS child. But you pull yourself up and do what you know you have to do. The thing that makes it easier is your previous experience. You aren't starting at square one and it sounds like you already have a plan in place. As you know, that is the hardest part. You are a very strong person and a wonderful Mother. Your kids are so lucky to have you fighting for them. Where will your daughter be having her PEX? What was the lab work that finally gave you the final diagnosis? It's good that you will be going straingt to PEX. I think she will get better much quicker that way. Stay strong and keep up the great work! Dedee

I want to just give you a big hug for taking such a huge step for your grandson. This poor child has had more than his share of issues. Clearly his history of multible infections has caused issues with his behavior. I am glad you are able to find some help for him. I am sure Dr. T will be invaluable. My advice is to never be satisfied if you don't feel something is working. These kids all react differently to different medications, antibiotics, etc. If one isn't working, contact the doctor and talk to them about switching to another. When ever we start something new, I always ask when should we expect to see change and when should I notify you If I see nothing. If you don't get what you need from one doctor, don't hesitate to find another. Many on this board have seen several of the "specialist". Sometimes each different doctor is able to bring a little bit more in focus. Keep reading on this forum and you will learn lots of valuable information. Keep up the good work and bless you for your dedication and love for your grandchild. Dedee

I am so sorry for what you are going through. I know your family is suffering right now and it is difficult to know where to turn. You have gotten some good advice here. In my opinion the most immmediate need is antibiotics and an appointment with a specialist. Your daughter absolutely needs long term antibiotics (minimum of 3 months). You may be able to get a script from a phone consult before you could get in for an actual visit. Perhaps Dr. T? But whatever you have to do, you must get her on antibiotics. I think the suggestion for the study in Florida is a wonderful idea. Since this is a new event and you saw an initial response to antibiotics, she should be a great candidate. If you need the phone number for the Rothman Center just send me a PM. They do a great job with PANDAS kids. Just keep reading and educating yourself with all the studies out there. This is a tough road but you are up for it. It will get easier.....be kind to yourself and don't expect too much. It's ok to let some things go for a while till you get through this difficult time. You are on the right track and you are taking the important first steps.....Keep up the good work..... Dedee

JMHO, if you are dealing with lyme, I would put my time, money, & energy toward a good LLMD. If u think you are only dealing with strep / myco, then I think Florida is a great place to be. Im not sure its your answer for lyme though. Again, this is just my opinion based on our experience there. They are great people. They are wonderful with PANDAS but for lyme, you need an experienced LLMD? Good luck! Dedee

I agree with the suggestion of lot of fluids and ibuprofen for a few days prior. Also, I would give benadryl the night before. They will give him some prior to the infusion, but I gave it at night for several nights before the infusions. Be patient, it is possible to see results right away, but it may take a couple of months also, so don't panic if you don't see immediate changes. We are one year post IVIG and my daughter is doing so much better. We have done a few other things also but the cumulative effect has been amazing. This time last year, I never would have believed it. Best of luck! Dedee

I am using it with my daughter and recently started to use it for the rest of the family also. Our Integrative Medicine Practitioner recommended it. I think it did help my dd, but I don't have her to the amount yet that was recommended. They recommend you go very slowly because it also works to detox, and you know how that is when you go too fast. When I first started my dd on it daily she started to get worse (also had diarrhea) so I backed down to every other day for one week and then went to daily. Only this week have I started to add in the second daily dose and I'm not doing it every day. Our practitioner wants her to eventually be on it 3 times a day, but said to go slow. It is supposed to work wonders for autism and I do think I have seen positive changes. I paid out of pocket for the first bottle but then got the office to call in a script and now it only cost me $10 per month. I think it is definately worth a try. Let me know how it goes. Dedee

We did 2g/kg over a two day period. Then repeated again in 2 months.

Don't feel alone....we have been dealing with 3 PANS kids for about 10 years. Our oldest clearly has issues with food and social eating. So about 2 years ago my husband just casually mentions in passing that when he was a teenager he was bulemic. What????? You would have thought that would have come up in the previous 20 years of marriage wouldn't you? Go figure..... Hang in there! Dedee

I think that it would help but only if she is willing to participate. I took my 16 y.o. son but he refused to participate in the program and we had to stop. As far as insurance, we paid out of pocket, but because it is a teaching institution and the therapist is still doing her post doctoral fellowship the rates were very reasonable. It was much cheaper than doing a weekly visit with a regular practicing therapist for several months. Some of the best money we have spent. You should at least talk to your daughter and look into it. Hopefully, she will be on board. Dedee

Ok, I kept meaning to respond to this thread but my Mother had to have emergency bypass surgery and things got a little crazy for a while (still are really). Anyway, we usually use the CBT / ERP program in Florida that is headed up by Dr. Storch. It's a great program. We did the 3 weeks last summer then a follow up week over spring break in March and another follow up week in June. Each time we went my daughter made more and more progress. One of the reasons we decided to go back in June is because the therapist that she was seeing there is leaving in August and my daughter made a great connection with her. We wanted to go one more time before she left. I'll try to shorten the story some......Turns out this therapist that we love so much is moving to be closer to her fiance who lives in Minnesota. She is going to a program that is ran by a physician who has worked closely with Dr. Storch. They also have an intensive program but it is a one week program (realizing that most people can't be gone for 3 weeks). The concepts and therapies are the same as used in Florida but formated into a one week program. The kids will go twice daily for one week and they have a huge focus on sending the family home with tools for success at home. I can not endorse the program as we have not experienced it ourselves. I can only say that I know of one therapist who will be there in August who worked wonders for our daughter. The program is at the Mayo Clinic in Rochester Minnosota. For us, it isn't any further than the trip we were doing going south. So, most likely if we need more help in the future, we may try a change of scenery. Although you can't beat St. Pete for a few days off, and without a doubt Dr. Storch and his team are the best! I just wanted you to know what your options are. Best of luck! Dedee PS - Tried to send you a PM but it wouldn't go through.

I get mine from Klaire and they routinely ship with an ice pack. There is an additional $10 fee to ship probiotics so I usually stock up when I order. I ordered some just a few weeks ago and they came with the ice pack which was completely melted and only slightly cold but the bottles weren't warm either so I don't believe they had been melted long. Just wanted to add for information purposes. Thanks. dedee

Just wanted to jump in on this topic because we also just found out that all three of our PANS children are MTHFR positive. My daughter and myself are Heterozygous C677t, my son is homozygous C677t, and my husband and my oldest son are compound heterozygous C677t / A1298. In addition ( and just on a hunch) I also tested them for pyrlouria and to my suprise, all three kids also tested positive for this. So between treating the C677t and the prylouria, my daughter has made huge progress with just the methyl folate, B-6, B-12, and zinc. The boys have been a little slower to come around but they were not as sick as she was to start with. One suggestion was that I wasn't giving them high enough doses because my daughter only has the single mutation and the boys both have double mutations. Possibly, but I haven't had much help from physicians yet so I am waiting till we go to the LLMD the end of this month and hopefully I can get more guidance then. This is a very complex issue to comprehend and I am reading and learning every day. I am just so excited that I have found something that is showing some promise. I encourage everyone to read up on the prylouria also and if it sounds like it could be a possibility, do the very simple urine test. You can order it online and you don't need a physicians order. It has made a huge difference for my daughter. Thanks LLM! Good luck to all of us "mutated" parents! Dedee

I agree 100% on the CBT / ERP. The OCD that you are describing will be best dealt with in that enviornment. My suggestion is to start with an intensive program somewhere, then follow up with something local, unless you have an intensive program local, in which case you are very fortunate. There is a 3 week intensive program in Florida and I have recently heard of the one week intensive program in Minnesota (which I heard was good also). My personal opinion is that your son will only be able to move past this type of issue with a good program. Even though it begins with an infectious trigger, it becomes very engrained in their thinking. The good news is that ERP will work wonders if you get a good therapist. It will turn your life around. Best of luck to your family. Dedee

Sent you a PM Dedee