Dedee

Dr. Murphy and her team are awesome. Thank goodness for her and all the other courageous physicians that are mentioned and used by many on this forum. Without them (no matter how far we travel), where would we be? I can only imagine the dispair that parents must have experienced before PANDAS was acknowledged & still, when it goes undiagnosed. Dedee

We do the fish oil and Vit D also. Just this week we have added Rifampin to the Biaxin. This was suggested by a doctor we see locally who is seeing her for the myco p. I think I am seeing some improvement the last day or two. It is hard to get her to take very much medication so I am limited to what I can get in her. I am hoping this improvement I am seeing is an indicator that the IVIG is starting to work. Of course one or two good days doesn't always last but I am trying to be optimistic. I am so sorry your daughter is suffering so. That sounds terrible about her compulsions. You should think about another IVIG after you get her lab issues figured out. I am interested to see what you find out about that. Please keep me updated. Best of luck with your daughter. Dedee

My daughter had her first IVIG the end of June and we saw immediate improvement. After about a month we started to see gradual regression but didn't worry because she was scheduled to have another in August. Her second IVIG was second week of August and she got immediately worse. After two weeks she started to improve some, but I would say only about 50%. That is pretty much where she is stuck at now. We are a little past the three week mark and I am starting to get worried. She has some days that are good and others that still put me in tears. She is still on biaxin for her mycoplasma and they said leave her on that for at least three months after the IVIG. I keep questioning if I should be doing something else for her. Maybe seeking another opinion? We have seen Dr. M in Florida who recommended the IVIG and antibiotics. We also have seen a physician here who treats PANDAS and Lyme patients (although not one of "THE" PANDAS doctors). She has a pediatric neurologist who is good and believes in PANDAS but hasn't been much help. We did the CBT program during her "good" time after the first IVIG, which was helpful, but since the regression she can't seem to put it into practice. Her LLMD did not think it was necessary to test her for Lyme prior to the IVIGs because she was showing some improvement on the biaxin. Am I being to impatient and not giving the IVIG enough time to work? Should I consider starting Lamictal? One of the doctor's suggested that prior to the IVIG but I wanted to hold off to see what the IVIG would do. I am starting to feel that desperate feeling again. You know, when things start falling apart with your child and you don't know what to do........Ugggg....... Thoughts....ideas.......suggestions??????? Dedee

I really wish I had suggestions for you. School struggles seems to be a common theme, especially recently as we all are sharing the horrible reality of heading back. I just want to say how sorry I am to hear your pain as describe your son. It is so hard to watch our children suffer. It would be so much easier if we could take it on ourselves. I am sure there are others here with wonderful ideas. So many have been through similiar situations. Best of luck this school year..... Dedee

I have appealed three times and even went to the National Appeals Committe with over 70 pages of "Peer Review Articles". What they mean by that is something that is published by another physician or researcher in a medical journal. I sent every article that supported our diagnosis and mentioned IVIG as a treatment. They simply sent me back a letter that said there was no evidence that there was anything physically wrong with my child. Have I mentioned that I hate insurance?

I am so sorry you are going through all this at the same time. I always wonder why there are times when things all happen at once. Hard enough dealing with a child who is struggling and I am sure your heart breaks everyday for him. After everything that has happened, I think it is awesome that he is still going back to school. Hang in there....you are doing a great job with your son. School is so hard on these kids..... Dedee

Wow that really stinks. I just want to throw in my opinion here because your son is so young to be getting strep so much. My oldest son was the same and I wish I had taken his out years before I did. I realize that some doctor's say you shouldn't blah, blah, blah.... But my son was getting strep over and over and each time his PANDAS would flare to a new level. So I figured nothing to loose.....he was getting worse anyway. The ENT put him on a high dose of Augmentin a week prior to surgery and then he was on Augmentin for two weeks after. He started getting better immediately and hasn't had positive strep since. That was four years ago. Now understand that he isn't healed of his PANDAS. He still has residual PANDAS issues, but I don't have to worry every time strep goes through school that he is going to catch it. When they took out his tonsils the ENT said they had huge pits that were full of infection and he didn't think we would have ever gotten all the infection cleared out. Some children do go through a period where they are worse after the tonsils are removed because the infection is released in the system. I think that is why the antibiotics before and after are so important. Also, keep in mind, he is already getting worse everytime he gets strep and he will continue to do so over and over. My vote is pull them and do it now.....he is a young PANDAS child who does not need that strep hanging out wrecking havoc on his little system. JMHO...... Dedee

We just finished our second IVIG for my seven year old daughter. I am all for IVIG and believe that the risk of not treating PANDAS is worse than any risk of IVIG. However, I also believe that it is vital to aggresively address the infection componet before anything else. Just from what I read it doesn't seem like that has been done. It is not uncommon to do three months of antibiotics before moving on to anything else. I applaud your neurologist for wanting to be aggressive but in order for IVIG to work, the infection needs to be under control. My suggestion is to go to one of the PANDAS specialists, but in the mean time I would get him back on some antibiotics and see how he responds. Best of luck. Dedee

My advice is short & sweeet: 1. Quickly make an appointment with a PANDAS specialist 2. Stop the antibiotic you are using and insist on another one. Listen to these folks here. They are awesome......

I understand your issues with Insurance. We fought hard for pre-approval and appealed three times before we had to throw in the towel and move forward on our own. Our daughter was so sick we couldn't wait any longer. Our Doctor worked with us on the cash price as did the pharmacy so it wasn't as bad as we thought although still a big hit. I have a good friend who worked for Insurance for several years. She told me from the beginning they would never pay if I tried to get it paid after the fact. If you are one of the lucky ones to have a really good and cooperative insurance company maybe, but pretty much retro payments are only in the case of emergencies. Your best bet is going to be to try to get three letters of neccessity from three different physicians saying this was a necessary treatment. They are supposed to re-evaluate if three doctors agree on the same treatment. It can be your pediatrician, neurologist, and who ever was doing the treatment. Something like that. The more sepcialized the better. They should all say pretty much the same thing in their letters on the reason IVIG is recommended in your sons case. The collaborative opinions of three doctors may get you what you need. Or so I'm told......Best of luck.... Dedee

I am so glad to hear some positive news from you. PANDAS parents approach the school year with as much anxiety as the children. I am praying that things continue to go well for him at school. Good luck with your next IVIG. I think of you often and keep your family in my prayers. Dedee

Just to throw in that my daughter had horrible fatigue before we started the antibiotics. She constantly complained of physical things. She always said she was tired. Afternoon and evenings she had headaches. Blurred and double vision several times a week. She was pale. People who knew us realized there was something physically wrong. The biggest thing was how she stopped playing so much because she didn't have the energy. Since the antibiotics we have seen most of that gradually improve. We got some regression in fatigue with the IVIG but I think that is to be expected. Important to rember that PANDAS is not just neurologic, there is a physiologic component that started this whole ball rolling and that is the real source. I realize you all know that, just have to remind myself of that every so often to put my daughter's behavior into perspective. Dedee

Well my daughter is 7 and just finished her second IVIG which we had to pay out of pocket because she didn't show immune dificiency. She is big time OCD with anxiety and rages. My oldest son is 15 and is better now but was diagnosed when he was 6, had a rough few years and then stabilized around 11. Still has some issues though. My middle son is 12, and as I said is sort of coasts along. Most certainly has PITANDS with immune deficiency but neurologically not nearly as bad as my daughter who seems to take up all of our time right now. He has always been our easiest child. Even his body makes it easy enough to diagnose by providing the appropriate labs so insurance won't argue and deny like they did with my daughter. :-) I'm not sure how much of IVIG insurance would pay based on the immune deficiency diagnosis and we are certainly wiped out after paying out for two IVIG's for dd. But I would hate to make any medical decisions based on lack of finances. So, I am still torn. He goes back to the doctor in November. Think I will talk to him more about it then. Thanks. Dedee

Thank you all so much for your encouragement and advice. You all have such good ideas. Sometimes it is so hard to think in the midst of chaos and confusion. My husband has been no help. He gets frustrated so easy and I think expected to see results sooner. The regression is hard to handle, even when you know in your mind to expect it and that it is temporary. Plus with school starting, I keep thinking of last year and how this all started in November and how our lives have completely changed. School was an absolute nightmare for us after that. I'm just not sure I can do that again. I'm just looking for a light at the end of all this. Thanks for all your support. Dedee

Well.....the doctor who read the lyme test is a LLMD. But the more I read the more I suspect there is a possibility that there could be something to this. His CD57 (think that is right) was low. I didn't know at the time that was an indicator or I would have said something. I know that the bands that read Ind could be positives because he is very immuno depressed presently. That bothers me. I don't know of any other LLMD's in this area. When I did the search, he was the only one that came up for our state. Guess I will wait till November when we go back and discuss it with him more. My son is still on Zith for one more month, then supposed to be off for a month before we go back to see how he does. That might give some answers in itself. Any ideas? Dedee

So my middle son has had PANDAS / PITAND symptoms for several years. The symptoms have never been really bad or seemed to alter his life in a major way. But we have always known what it was and that it was there. With the older son being so bad in his younger years and then the younger one coming in with it just as bad or worse, we have really sort of had a "wait and see" attitude with the middle one. In fact, since he is my least symptomatic, he tends to get ignored sometimes. However, when we tested the entire family for Myco P after my daughter came up positive, he came back very positive also. So we took him to a doctor that we have recently found who is knowledgable in PANDAS /PITANDS / Lyme. He has started treating the Myco P. and also did some testing. When they ran the immune pannel it came back immune dificient. He had low IgG and low subclass three levels. He has always been a sickly child. Has asthma and allergies. Usually gets the flu every year even if he gets the flu shot. The doctor says that made sense because his immune system probably cant mount an immune response to the vaccine. He also did a Igenex Lyme test and the results were as follows: IgG: 30 + 39 Ind 41 +++ IgM: 31 Ind 41 Ind He has been on Zith for the Myco P. for about 6 weeks and he says he feels better and doesn't have as many scary thoughts. Although he still sleeps on the floor next to my bed and seems a bit irritable to me. His asthma and allergies are horrible. He is very small for his age, about a head shorter than most of his friends and very skinny. However, he is a very sweet boy who seems happy most of the time, but just catches most any illness that comes around. So I am trying to decide how aggressive I should be with this child? Don't want to ignore him because he is the quiet one, but I don't want to over react either. It has gone on for a while, with some lingering issues, although not devestating. He has some OCD rituals, mostly at night. Night time anxiety. Absolute over achiever in school.....has never made anything but A's on his report cards. Carries it too far though..expects only perfection. Anything scary will make him have OCD thoughts about it for weeks. He recognizes it, and deals with it well, but still, it's there. Uggg.....Sometimes I feel like I am a paranoid mother and I know my friends probably think I am too. The Doctor said he didn't think it was Lyme and mentioned IVIG for the PITANDS, but in the end we we decided on supplements with continuing antibiotics for another month. So, for any of you that have been down the Lyme road, can you look at the above results and tell me your thoughts please. I really don't want to make this Lyme if it isn't, but I don't want to ignore it either. Should I be considering IVIG for him? Help! Don't know if I can deal with this and dd both. Dedee

You are right, he isn't my worst child. Great memory! In fact he is my least symptomatic so he tends to be ignored. It is just that it has gone on for a while and he has just lingering issues although, as you say, not devestating. He has some OCD rituals, mostly at night. Night time anxiety. Absolutely over achiever in school.....has never made anything but A's on his report cards. Carries it too far though..expects only perfection. Anything scary will make him have OCD thoughts about it for weeks. He recognizes it, and deals with it well, but still, it's there. The other thing which brought the whole thing up is that when they ran the immune pannel he is also immune dificient. He had low IgG and low subclass three levels. He has always been a sickly child. Has asthma and allergies. Usually gets the flu every year even if he gets the flu shot. The doctor says that made sense because his immune system probably cant mount an immune response to the vaccine. He is very small for his age, about a head shorter than most of his friends and very skinny. However, he is a very sweet boy who seems happy most of the time, but just catches most any illness that comes around. He has been on Zith for the Myco P. for about 6 weeks and he says he feels better and doesn't have as many scary thoughts. Although he still sleeps on the floor next to my bed and seems very irritable to me. His asthma and allergies are horrible. So all that being said, any additional thoughts from anyone? We are seeing a regular physician who is known to be very knowledgable with PANDAS / PITANDS and Lyme. He sees several PANDAS kids in this area. He mentioned IVIG, but we we decided on supplements with continuing antibiotics for another month. So I am trying to decide how aggressive I should be with this child? Don't want to ignore him because he is the quiet one, but I don't want to over react either....Uggg.....Sometimes I feel like I am a paranoid mother and I know my friends probably think I make it up. I mean who has three kids that are that sick right? I really don't want to make this Lyme if it isn't, but I don't want to ignore it either. Help! Dedee

My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth. So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas??? Dedee

We did the Igenex Lyme test on my middle son who has some residual PANDAS / PITAND symptoms after I found out he was IgG & IgM positive for myco p. I thought it might be possible that there was something else hiding as well. We got the results last week and the Dr. said he didn't think so. Said he thought it was just myco p. So I wanted to ask you guys since you really are the experts. Here are the results: IgG: 30 + 39 Ind 41 +++ IgM: 31 Ind 41 Ind So is it ok to cross that off my list? I really appreciate any and all opinions. Dedee

Can you call your local provider and ask? We used Gamunex also based on Dr. Murphy's recommendation, but there may be a reason for the Flebogamma. Could it be similiar to Gamunex but produced by a different company? I completely understand your concern though. I would be asking the same questions if I were you. Good luck on your search. Dedee

I will PM you.....

Dr. Murphy is speaking there also. She is my daughter's physician. The diagnosis she gave my daughter was Pediatric Autoimmune Neuropsychiatric Syndrome (PANS). My daughter didn't have high strep titers but she did have very high myco p titers. I think maybe they are trying to gradually drop the strep component to open the thinking more to other infectious agents also. JMHO. Dedee

We just finished the program. Those are great questions. I will PM you. Dedee

Airial95, I thought about you the day we had our appointment with Dr. Murphy. We first interviewed with the Doctor that you had told me was so good that your son sometimes visits. It was just a fluke thing and when she said her name I recognized it from one of the messages you had sent me. She was wonderful with my daughter and as good as you said she would be. You are lucky to live so close to such a great treatment center. Dedee

Just got back on Sunday. My daughter and I both cried when we left our last appointment Friday. She told me she wished she could come back every day. You are going to love it there. Today is my first day back at work in over 3 weeks. I am miserable. Please PM me and let me know how things are going. I wonder if you have the same therapist we had. She was wonderful. Have you already started? Where are you staying? I hope you have a great experience. Dedee