Dedee

You just rub it on once daily on the inside area of the wrist and arms. So far it is working well. We are seeing a difference. The rages and defiance has decreased. She still has huge seperation anxiety though.

It is so true that God will provide our every need. As you all know I have been struggling with my daughter for so long because she absolutely will not take any medication by mouth (it's an OCD thing). We had gotten her Mycoplasma p results back showing she was positive IgG and IgM but still unable to find a way to get any antibiotics in. We had started considering putting in an IV (PICC) line & do antibiotics that way (extrememe but necessary). Then out of the blue our neurologist called and said he found a pharmacy that specializes in just this sort of issues and he was working with them to find a solution. They do strictly compounding and work with a lot of Autism and that sort of thing. So, they got me set up with Azith cream!! Can you believe that? An absolute answer to our prayers. One of the pharmacist has a son with Autism and she has been wonderful. She didn't treat me like I was crazy when I had to call back and ask questions about putting it in different places becauses my daughter was so sensitive to the smell(It smells a bit like dirty socks). We have used it five days now and can tell a difference in my daughters behavior already. She hasn't had any rages in three days. She still has all the physical symptoms and major separation anxiety but the defiance and rages are decreasing daily. We are holding our breath every day praying this might be our answer. We go back to see Dr. Murphy in two weeks for follow up. We hope to get more direction at that time. In the mean time, we had the rest of the family tested for myco p. Of course, my oldest son has had PANDAS for nine years. He is doing well now but still has some residual issues. My middle son has some issues with anxiety, and OCD but hasn't been treated because he has never been severe. He is in a flare now, but still functional. Mostly has issues at night. Anyway, we found out yesterday that he is also positive IgG & IgM Myco p. His pediatrician would only give us Zith for one week. He doesn't have a PANDAS doctor. I guess I will wait to see who else in the family comes up positive and talk with Dr. Murphy when we go down in two weeks. I'm not sure what they do when multible people in the family are positive. We have all been tested but waiting on the rest of the tests to come in. Anyone else have this sort of experience?

My daughter has just started with the staring spells. She asked me if I ever look at something and then my eyes won't let me look away? She says she can hear what is going on around her but her eyes won't let her look away. Also, she says during these times she has like nightmare sorts of dreams. My ped thinks it is more of an OCD thing than seizures. She said she wouldn't remember it if it were a siezure. She still wants to get an EEG anyway. I doubt my daughter will cooperate. Her fear of any sort of medical procedure has escalated to the point that she has to be sedated if we are doing anything more that blood pressure & they can't be sedated for EEG. Are these the same kind of symptoms you kids experience with there staring episodes? I swear, it's something different everyday.... Dedee

We live in the Nashville area and my pediatrician finally found a Pediatric Neurologist who is willing to treat my daughter. We got her labs back and her myco p was positive on both IgG and IgM. My pediatrician had consulted with him and they agreed she needed IV antibiotics (She won't take meds by mouth), and IVIG. Her symptoms have gotten extremely bad lately and she is barely able to attend school. He was willing to admit her to the hospital without seeing her and start treatment immediately. They called me and told me to meet them at Vanderbilt Childrens. Then 30 mins later called me back and said to stop because Vanderbilt won't accept her case. They really don't know much about PANDAS and no one wants to take the responsibility of IVIG if the standards of care aren't clearly defined. You have got to be kidding me!!! So the Ped. Neurologist talked to several administrative people but was never able to get her in. Can you believe it? The big "Research Hopital" won't take something that isn't defined???? I am just speechless. So we ended up meeting at his office and he is going to try to get her into another smaller hospital next week as an outpatient and do a sedated MRI and at the same time put in a PICC line so we can do home IV antibiotics. Said we would see how the antibiotics do and then talk about IVIG. He wants to do the first IVIG in a hospital setting, just don't know where yet. I have said it before, but isn't it enough to have to deal with my daughters rages, OCD, and constant physical complaints? But PANDAS parents have to throw in Health Care Providers acting like a bunch of idiots too. Why does everything feel like a fight these days? I am worn out. Some days I feel like I don't have any fight left....... Dedee

Yes, you are right on target regarding the ERP / CBT. Dr. Murphy strongly recommended that for my daughter to work specifically on helping her with that issue. We are currently in the process of making arrangements to get in the intensive program at All Children's at USF this summer. It will most likely be July before we start because of school and when they had an opening and so forth. I started working with my daughter last week with just taking one drop in her mouth (she could even spit it out if needed)but instead she threw up each time. So clearly I need to back up and take smaller steps like you describe. You always have wonderful suggestions. Monday I am calling my pediatrician and Dr. Murphy's office to see if anyone can understand the urgency of our situation. My daughter seems to get worse daily and we are just living from one rage to the next. If it means we have to do something drastic and start IV antibiotics then I am ready. Our quality of life decreases daily. I feel like I am loosing my daughter and fear I may not get her back. The labs were faxed on Friday to Dr. Murphy. I just pray she responds Monday. I hate being pushy to someone who has been so kind, but I am so desperate. Thanks for your help. Dedee

My daughter has severe OCD when it comes to taking medication and absolutely refuses to take any by mouth. That's why we have been giving the bicillin injections. They aren't helping any by the way. We did re-check the lab because the first numbers that came in were preliminary and so we called and they said they would check and send the final report. It was the same. My daughter has numerous physical complaints and her behavior is unrelenting. We need some resolution soon. Dedee

We got lab work back on my daughter and her Mycoplasma Pneumoniae antibodies were high. But her IGG number doesn't sound like the numbers others are reporting on this board. The report says that the IGG reference range normal is <0.90 and her IGG level is high at >5.00. Others here are reporting IGG levels in the hundreds. Is this just a difference in the lab running the test? Anyway, Her IGM reference range normal is <770 and her level was high at 1,177. The only other thing abnormal was a high C3D at 18 (normal 0-8). Also, got her CamKinase back last week and it was 158. The rest of it wasn't ready yet. So I am completely clueless as to the treatment for Myco P. I have done a little research but I'm not sure which direction we will be heading. I faxed the results to Dr. Murphy's office and to our ped but I haven't heard anything yet. For those of you who have dealt with Myco P. what has been your experience? Also, is this something I should be testing the rest of my family for? Both of my boys also have PANDAS but not nearly to the degree that my daughter does. I have so many questions. I feel like I am starting all over again. So confused....... Dedee

I emptied my box. Appreciate any help.

Dr. Murphy orderd pages and pages of lab work for my dd. Results came back today. Her Mycoplasma Pneumoniae IGG was high at >5.0 (normal <0.9). Her mycoplasma Pneumoniae IGM was 1177 (normal <770). Then her C3D was high at 18 (normal 0-8). I'm not even sure what a C3D is. A couple of days ago I got her CamKinase back and it was 158 but the rest wasn't ready yet. So what do you guys think? She wont take antibiotics by mouth. I am pushing for IVIG but I know we have to clear up infection. Do you think insurance would approve IVIG? Who else is dealing with the positive mycoplasma? I need to hear thoughts and opinions. I am clueless ...... Dedee

God Bless Good Teachers!! We have a good one this year too. Pray for another one next year. Makes all the difference....

My son took low dose Abilify briefly when his tics first started. His tics were very violent and were making his neck very sore. It did significantly reduce his tics but made him extremely sleepy to the point that he would fall asleep at school. After his tonsilectomy and starting his antibiotics we stopped it and his tics remained improved (I believe because of the antibiotics). I didn't notice a change in mood but his dose was 0.5mg which is pretty low. Dedee

I tried to answer one of your PM's and couldn't get through also. Dedee

First let me say how sorry I am to welcome you to this "club". However, it is wonderful that you caught it early and have started treatment right away. When my son would have flare ups, he was very expressive and would tell me that he had thoughts that went over and over in his head and he couldn't get them to go away. That's a dead give away right. On the other hand, my daughter has no idea why she does or acts the way she does. She just cries and says she hates the way that she acts sometimes and asks me if she is stupid for acting like that. She has horrible rages and then cries for long periods after because she "hates being a mean person". She is 7 and my son was 6 when he had his first episode of PANDAS. I think all the children are different in their presentation and their awareness. The only thing consistant is the ###### that all the families experience. I hope you have a good visit with your specialist. Dedee

Hi Amy, My dd has choreiform movements in her hands pretty much as you described. She does the piano playing movements almost constantly unless she is very relaxed. She does both hands though and seems to be oblivious to it. When my son was at his worst several years back, he would hold his hands together and complain that they wouldn't be still. I think his were both as well. I'm sure it's different for all kids, just like they all have different types of tics at different times. Good luck with your visit with Dr. B. Dedee

We use them only because my dd refuses to take any sort of medicine by mouth. The medicine is very thick and so the injection is very painful. I can't remember the dose we use but it is supposed to last a month but we only see improvement for about a week. When we saw Dr. Murphy a couple weeks ago she said she didn't prefer injectables because the levels didn't stay as constant as when they take it by mouth. That would be consistant with the results we see. Our dd seems to get results about 24-48 hrs after the shot and we have about 5 good days and then a gradual regression. We are working daily on trying to get her comfortable with medicine. Last night I tried to get her to take two drops in her mouth, but she threw up as soon as the first one went in. If I had a choice, I would definitely use something other than bicillin. JMHO. Dedee

On this same subject; has anyone had problems with adverse reactions from melatonin? We use melatonin for both of my sons with they have problems sleeping. Until recently we haven't been able to use it for my daughter because she wouldn't take the medicine. Then I found melatonin drops that I can mix in her drink or food and she can't taste it. We have used it three times during the last two or three weeks and each time she has had a horrible rage that lasted nearly an hour after taking it. I only gave around 1mg which is less than I give my sons. The first couple of times I thought it may have been a coincidence but after last night I felt sure there was a connection. I'm pretty sure I won't try it again although I was so excited because it was so easy to disguise in her drink or food. It works really well for my sons. I wondered if anyone else had similiar experience? Dedee

I was thinking that a while back I read an article that gave a list of suggested lab work as a "beginning" for suspected PANDAS kids? I can't seem to find it in my notebook of articles and I have a friend who suspects her son has PANDAS. I will keep looking but if anyone knows what I'm talking about, I would really appreciate a link. Thanks so much. Dedee

Oh I am so sorry you are going through this. It must be tearing you apart. My 15 y.o son was sooo resistant to outpatient counseling about his eating issues also. We started about 2 years ago. He has some residual PANDAS stuff about not eating a big variety of foods and it has started to bother him as he becomes a teen and is more social. He has tried to work on it his on way but I find him crying or upset about upcoming events that he knows will involve food. So I took things into my own hands and made him go to counseling. He wasn't quiet as resistant as your daughter but he was very angry. Wouldn't talk to me. Very abrupt and rude to the counselor. At first I was hurt. Then I got over that.:-) So I had to tell him he could be mad or hate me or whatever, but it is my job as a parent to make sure you are healthy, emotionally, physically, and spiritually and that is what I will do. I was very firm and told him that I loved him and that is why I take my job as his parent so seriously. He stayed mad for a couple of weeks and I would say the first few sessions with the counselor were a bust but then he lightened up and things have gone well since. He has been going off and on for a couple of years now and never complains anymore. I realize you are dealing with a much larger issue here. But the fact remains that she is not able to understand at this moment why she needs this treatment, but that doesn't mean it isn't vital to her progress. The professionals who deal with teens have seen their share of reluctant participants. Very few teens go into these things willingly. If you trust where you are sending her and you know this is in her best interest, then you need to stay strong in your decision. Don't let anyone (including her) make you doubt your motherly instinct. I know this is hard. I am so sorry for what your family is going through. I truly hope things work out for your daughter. Please let us know how things go. Blessings - Dedee

Yep, I have tried all the tricks on medicine as has my husband. It isn't a taste thing or a control thing. It's an OCD thing. She believes it harms her in some way and throws it up. Somehow we have to improve her thought process and clear the OCD so we can reason with that concept. There is no way to force it or to be gentle. Either way if it goes down, she throws it up. That has been the hardest thing to deal with because the first thing you want to do is start giving medicine. So, I don't know if the CBT would be any true help with this or not. Dr. M. would love to have her on daily antibiotics but she also said that depending on the lab results, IVIG may be indicated. One of those two (or in combination) we hope will be the answer. As you all know, you just try and pray for the best outcome possible. Still trying to decide on the CBT. I'm just not sure if it will be worth the expense in the long run. Thoughts? T.Mom, I got your PM, but couldn't respond. I think your box is full.

We finally made it back from our long trip to Florida to see Dr. Murphy. Things went pretty well overall. My daughter would not cooperate for any of the assessment. In fact , I think the ones who did her OT and PT evaluation think she was learning disabled because she wouldn’t give a verbal response to any of their questions. She only sat on my lap with her head in my shoulder. Of course, that is typical behavior for her, but doesn’t mean she can’t communicate only that she is afraid of strangers (putting it mildy). The exam that Dr. Murphy did was only a little better. She wouldn’t get off my lap, so she could only do what could be done there. She said she got plenty of information though. I thought it was a worthwhile visit. Dr. M. reviewed all the labs we currently had and wanted to order more. She talked about whether or not IVIG or attempting antibiotics would be better for her. She recognized the problem we have with my daughter refusing to take any medications by mouth. Dr. M. isn’t big on injectable antibiotics because it doesn’t keep the levels as steady as daily dosing. She ordered a list of other labs to be done and said when we get the results of those we may be able to make the case for IVIG. Of course she is still concerned with my dd’s refusal to take medication. Said with her issues she will have to take medications at times. She recommended intense CBT therapy. They have a good program there that she thought she could get us in this summer. It is supposed to be an intense few weeks instead of spreading it out over months. Supposedly this program has good results. Problem is we would have to be away from work and home for nearly a month. Not that a month at the beach in the summer wouldn’t be great, but we just don’t have money available to rent someplace. I think my husband and I may be able to split the time away from work, but just financing it seems out of reach. Do any of you do CBT through local providers? Has it been helpful? So we came home with her recommendation letter and went straight to the doctor’s office the next day and had labs drawn. While we were there we had another IV steroid infusion. It had been three weeks since the last one and we stopped seeing improvement when she got sick shortly after the first infusion. I am just looking for some sort of relief right now. Things are just horrible, as all of you know all too well. When I mentioned the steroid treatments to Dr. M. she just said that it was fine short term but only a band-aid till you get the real fix. And of course you can’t do it too many times. So I guess I am in wait and see mode as we wait for the lab results. They are considering an MRI and are supposed to call this week if they get that set up. Waiting is the worst………… Dedee

I was just wondering if you knew how long it takes to get the Cunningham test back now. I know they were running behind for a while, because of the tests coming in. I heard she was getting another assistant and that should help catch up but I hadn't heard if that happened. She is and awesome person. She works her tail off trying to help these kids and families, and trying to figure out this horrible disease.

When we got my dd results back this week one of the things that was brought up was that she had 4+ Gamma Haemolytic Stretococcus in her gut. The NP that went over the results said "obviously we would prefer that be zero." Then she kept going. She didn't linger or discuss its significance and it didn't sink in because we started talking about other things. So my question to you all is how many have had experience with this? Is it significant since it is Gamma Haemolytic Strep and not Beta Hemolytic Strep? Do you treat it different in the gut? My daughter doesn't take oral meds so her antibiotics have been Bicillin injection. Although the rest of her stool studies didn't look too bad. She did show some yeast, but her absorption & distribution was good. So the strep was the biggest thing GI speaking. I'm wondering if that and the yeast could be the cause for all of her stomach complaints? Any thoughts or suggestions?????

She had a upper respiratory infection in November / Dec. I think these labs were drawn in Feb. She had a cold recently, but that was after the draw.

We see the Nurse Practioner in an Integrative Medicine practice. She is very compassionate and knows more about PANDAS than the average doctor. She treats Autism and has treated some PANDAS. I wouldn't say she is an "expert" but there aren't very many of those around. She is more than willing to work with any of the "big guys" as a resource, so I think she will be a big help for us. I have sent her several research articles and she has been very appreciative. Still, as I have said before, it's great to go to a doctor who teaches ME something instead of the other way around. Anyway, I guess we will get that next week. But this NP says not to worry, we will find the right person to lead this journey and we will get where we need to be. That's helpful. I just need to be more patient I guess. So the inflammatory markers ar a high Quinolinic Acid and 5-HIAA Ratio in Urine, and then blood sample was a high Sed rate, and she said the continued high neutrophils show the immune system trying to fight off chronic illness. So what were your Cunningham results? And who is the PANDAS doctor who says your daughter is "debilitated" enough? Can you find another doctor? I mean who is he to say she isn't debilitated? You are her Mother. You know her best. If your perception and your daughters perception is that she is debilitated, then she is. It isn't his world you are living in. He doesn't live with you and experience what you do. I say throw HIM out with the dish water. I'm on a little bit of a soap box today. I just hate for someone to try to tell you what you are experiencing. Huh?? I'm in a crisis but I'm not crazy. Ok, I'm going to stop now. Dedee

So we finally got the complete report on all the lab results yesterday. We had gotten partial results a few weeks ago when the office called to say her strep titers were elevated and that was when we gave the Bicillin injection. I wasn't really even sure what all she had drawn. So long story shorter, her immune pannel was normal with IgG and IgA both within normal limits. Biggest things that stood out of everything was that her inflammatory pannel was elevated indicating a long term inflammatory process. Very low Vitamin C & D levels. She has yeast in her gut. Also has 4+ Strep in her gut. The differential on her white count shows neutrophils very high and lymps low. She also had that when they did pre surgery lab work in December for her hernia surgery. Her albumin level was slightly elevated, and her Serine levels were low. Other things she tested for were CMV, Epstein Barr, Methylmalonic Acid, Fecal parasites, Digestion and absorption levels all were normal. I was disappointed that she didn't test for Mycoplasma P. or Lyme. I will have her test for those with the next draw. Her interpretation was that she most likely has chronic encephalopathy (elevated inflammatory pannel). This is also supported by the fact that she had improvement with her steriod infusion. We discussed the immune system and she believes it is very likely she has what they call chronic variable immune deficiency disorder (?). Although her IgG and IgA levels are normal now, if you follow levels consistently over a period of time what you see is that there are times when they remain normal then they drop for several months then back to normal. She said we have to follow and start building a case for IVIG. She wants to do several steriod infusions about every two weeks apart. We would draw blood before each infusion (she would be stuck anyway). Then document her response to the steriods and watch immune markers, inflammatory markers and a few other things. If response is positive then hopefully insurance will cover. This is when I started to cry. I told her I didn't know how long my family could make it while we "built our case". She said maybe by us going to see Dr. Murphy next week we could get extra support from her and if not we could try some phone consults or something. I guess I was just hoping for that big neon sign that says this is it and here is what you do. You would think I would know better than that by now. This isn't my first time around the PANDAS block, but I have higher expectations now because I think since there is more research now we should be able to kick this quicker. Ok, So I have my reality hat back on. I think my biggest fear now is that the Cunningham test that we sent off will come back normal. OMG, I would die. I almost wish I hadn't done it. Of course it's not that I WANT my child to have PANDAS but I just can't take anymore ambiguity right now. Gosh, I know I am rambling. I am so confused. I know we need to do more follow up lab. What do you guys think? And how in the ###### am I supposed to get my family and my precious dd through this wait? Dedee