Dedee

S&S - Thank you for sharing your story. It is very helpful. Your son sounds so much like mine. I just wish he felt he could relax and miss an assignment or even make a B. Nancy & LLM - We have actually done CBT with my son at Rothman. At the time we mostly were focusing on some food issues he was having. We did talk some about perfectionism but didn't do any interventions. I talked to him last night and told him the only way to get used to not being perfect is to do what they taught us in Florida. I thought he was going to freak! He said "Mom, please don't make me get a B". LOL! I think we should probably do some simulation where he makes bad grades etc.. Not sure if that will do it at this point, but I know that is the sort of thing we have done with my daughter who has the same kind of issues with homework. I will talk with the Psychiatrist and see if he knows of any CBT providers in this area. So far we haven't been successful in finding any that we were happy with. That is why we have been to Rothman with my daughter 3 times now. That 12 hour drive is really getting old, let me tell ya. However, the Florida beaches never get old. :-0 So my son has his first Cross Country run tonight. Maybe that will relax him some and take his mind off some of the stresses of high school. I like what Nancy said about having the school psychiatrist available. Not sure if my son would actually take advantage of that but he really needs to talk with someone who can help keep things in perspective. I would appreciate any prayers for safety for my son. Thanks so much to everyone. You all are my rock. Dedee

Remind me what her age and weight is again? That seems like a low dose of lamictal to me. Lamictal was a life saver for us when my daughter was in the initial stages and we were trying to get the antibiotics started and waiting for them to kick in. My daughter is still taking it but we have decreased the dose from what she was taking two years ago. I would look at increasing the Lamictal if possible. It can easily be decreased later and works very well for anger / rage / mood. Dedee

It depends. One time I made the mistake of starting two antibiotics at the same time and my daughter went nuts. I knew it was die off and thought it would clear but a month later she was still no better. My LLMD had me stop the antibiotics for two weeks then start only one back. We have learned from that mistake. Now if we switch antibiotics we always only start with one and give it one to two weeks before adding in another. This is much easier on everyone. It usually takes a week or two for my daugher to settle down, depending on the antibiotic. Also, if it is one that has to be taken twice a day, I always give it only once a day for the first three days then increase to twice a day. My daughter is very sensitive and herxing can be an ugly time in our house so we go slowly to help keep the peace. This is what we have found that works for us. Dedee

So last night he told me that he felt like some of this was possibly OCD. When I asked why he thought that he said that he was feeling so much pressure to make all A's in school because his mind was telling him he had to do perfect in high school (this is his first year in high school) in order to get into the right college. He said he felt he couldn't get any B's or he wouldn't get in the right college. But at the same time he felt that if all he was ever going to do was study and never have fun then what is the point in living. I told him that his Father and I do not expect A's all the time but he said he had to do it because it was his expectation. We talked about balance in life and so forth. He says he understands that but his mind won't allow it. Sounds OCD to me too. He is very pitiful. Crying when we talk about balancing fun and studies. He wants to play and have fun but part of him can't feel excited and the other part tells him he can't because he must always be on top of his courses or he isn't doing his best work. Please understand, we do not put pressure on our kids to perform at this level. He has been completely independent in his school work since 3rd grade, needing no prompting or assistance with his homework. He has also never made a B on his report cards. Always made A's. I am not bragging here. On the contrary, I wish this child felt he could relax enough to make a B without it being the end of the world. I think it is just now getting to him because now he has hit high school and he feels the pressure that these grades are the most important and will follow him through life(that's what they keep telling them at school). That's fine to tell most kids, but definitely not an OCD kid. He also said he had actually thought about how he might take his life if he were to ever decide to do it (with pills). However, he said he could never actually do it because it was a sin against God and that was something he could not do. This is just killing me! The only good thing is that he is actually talking to me and not holding it all in. I am just scared to death for my poor boy. Our appointment is a week from today. I will try the HTP tonight. I am also going to talk to his LLMD again and see about changing his antibiotics. I wasn't thinking about this being so much related to his PANS until I recognized the OCD in it. I will just talk to her and see what she says. Thanks for everyone's support. Dedee

Did you all get the lyme plus from your doctor or order on line?

My son is MTHFR C677T homozygous among other things. I have been careful with his B vitamins and folate but have wondered lately if he may not be getting enough methyl folate. He gets about 500 mcg per day.

Thank you all for your replies and support. I have wondered if it is possibe since he is healing that he doesn't need the Lexapro anymore. I was also worried that one of the supplements I was giving was causing cyst busting (I stopped that one). There are so many variables at play at this point (antibiotics, genetic SNP's / methylation, SSRI's, supplements, yeast, detox, hormones..) it is very difficult to know where to start tweaking. I am looking closely at the supplements that he is taking for methylation due to his SNP's. That can play a huge role in neurotransmitters. I can just see me trying to explain that one to the Psychiatrist. Oh, goodness...why does this have to be so complicated? Dedee

RowingMom, I know how you feel. I have a nephew in medical school and his wife who has her PhD in Neurological Research. Whenever I say anything about my kids having Lyme, he tells me that it's impossible because we live in the south and the kids have never been in the Northeast. Drives me crazy.... Dedee

My 14 y.o. son has had PANS for about 5 years. Fortunately he has been the mildest of my three kids and the easiest to manage. Initially, we only needed to treat the initial illness and his OCD and anxiety symptoms would resolve. For a few years he only had a mild low level anxiety and OCD that was what we considered "manageable", especially considering what we were dealing with the other 2 children. About 2 1/2 years ago it got a little worse where the anxiety was more consistant. So I took him to our PANDAS specialist and got long term antibiotics and more testing done. The antibiotics didn't seem to help and his Lyme test was highly sugestive. So off we go to the lyme specialist where his sister had already been. At that time he was diagnosed with lyme and most likely bartonella and started treatment which seemed to help him right away. During this time we had also started him on low dose Lexapro while waiting to get into the LLMD because his OCD was so bothersome and we had to wait a while. With all the treatment, things settled down and he had been doing really well since that time. He is wonderfully sweet boy who makes straight A's. He is in the gifted program at school, plays sports, is very social and never ever a problem for me. About 3 weeks ago he told me he felt his anxiety was coming back. I talked to his LLMD and she recommended a herbal supplement for anxiety. This didn't help at all. I tested for strep and it was negative. About a week later he comes and tells me that for the last month he just doesn't have any real feelings....can't feel happy or sad, just feels disconnected from everyone. Said things that used to make him happy, don't make him happy any more and he just can't get excited about doing things with his friends anymore. So I call his doctor and we increase the lexapro. 3 days later he tells me he feels like he has no reason to live. OK...another call to the doctor and she say back off the lexapro and lets call psychiatry. Meantime, I'm still talking to the LLMD who has me asking him questions about physical issues. He denies any physical changes and the LLMD doesn't think it's a Lyme/bartonella/PANDAS flare. I have an appointment with a Psychiatrist on the 27th. I have no idea if he is PANS friendly or not. Frankly I don't need validation at this point, I just need someone to save my son. I won't allow anyone to take him off his antibiotics. I just need help to titrate him off the lexapro and start a different SSRI. I have a good friend who is a physician (my next door neighbor). In talking, we both believe this is most likely a side effect of the lexapro. He says he has seen it in his practice where people complain that the lexapro makes them feel numb, without feelings. However, because of his extreme anxiety and some of the feelings he has expressed to me lately (feeling extremely overwhelemed with moving to the high school, etc), I am very worried about just abruptly stopping it all together. I have decreased the dose but it hasn't seemed to make a difference. I talk to my son every day and he is usually so happy. Last night he cried so hard and it broke my heart. I made him promise he wouldn't hurt himself. He says he isn't thinking about anything like that but how do you know for sure? I don't know what to do to help him. This is so out of character for him. He always worries about doing things right and pleasing people but he is usually the happy one in the family. This is just killing me. Does anyone have any ideas on how to get us through the next week? Dedee

We are all GG here. Irish / German heritage. Dedee

I would stay on the treatment dose until you can get in to see Dr. B. and then see what he says. It is unfortunate that we sometimes have to take things into our own hands. I have had to treat my kids via the back door method until I could get in to see the appropriate physician. I wouldn't have a long term plan without a physician in the mix though. Glad to hear you are feeling better. Dedee

Does't sound like enough to me either. Really, only a treatment dose for 10days? What happened to a good ole shot of Pen anyway? Glad you finally got a diagnosis, but I'm thinking you need a physician who is a little more aggressive with treatment. Dedee

I agree with testing for lyme. But also parasites come to mind. Has anyone tested her for parasites? Dedee

I am also an avid reader of Yasko, but still tend to "do my own thing". I find contradictory advice when it comes to treating the mutations and treating my dd illness. For instance with her CBS mutation we are told to limit animal protien. But when reading the Buhner book on treating Lyme Co Infections I am to understand that animal protien is a very important part of her diet for healing. Also, several supplements that my daughter should avoid due to mutations (according to Yasko), her body really needs to heal bartonella. So I try to strike a balance and use what works, mostly through trial and error. Dedee

Thanks so much for posting. As a parent of 3 PANS children, I often feel like such a failure. I never feel like I am doing enough. I frequently feel I am handeling situations poorly due to stress. I have guilt over working and not staying home. I could go on and on...... So it does help to hear from the perspective of adults who have gone through this as kids. Thanks again. Dedee

Long QT syndrome is a familial disease that is genetic. Many drugs can also legthen the QT interval as well. Do a google search for "drugs that legthen QT interval" and you will find a long list. These include many antibiotics, antihistimines, antihypertensives, even some cardiac drugs and more. So some people that do not have genetic long QT can show up with long QT from being on multible medications which cause lengthening of the QT interval. This usually happens by seeing more than one physician and each different doctor or specialist isn't aware of what the patient is taking from another provider. Many insurance companies won't pay for an EKG unless there is a good reason or pay for a cardiologist unless there is a "valid " reason. So that may be why many don't get the EKG. I have always thought it should be part of sports physicals. That is just the cardiac nurse coming out. I have two kids on antibiotics that can lengthen QT. I personally havent worried about a EKG but that is because we do not have a history of early death in our family. We have a history of coronary artery disease but that is totally different. I do watch other medications the kids take and I would certainly take heed if they complained of palpitations, or dizzines more than usual. I also believe that parents need to be completely comfortable giving there kids meds so if anyone feels they need a simple EKG to feel in a better place, you should ask for it. This is not a unrealistic request and certainly not terribly expensive. After all, we have already shown that we can beat statistics right? Dedee

I am glad to hear that things are better for you. I hope you are enjoying some activities with your family. I am sure this is an exciting yet somewhat scary time for you. Hopefully you can relax and enjoy yourself. Did your insurance pay for the IV antibiotics and picc line? Dedee

Hope things go well for you. I know how it is to get your hopes up. Please let us know how things go. Thinking of you and your family. Dedee

I would think the cortisol issues are a reflection of adrenal dysfunction or adrenal fatigue which often happens in the presence of long term infection or immune dysfunction (or both). If she is having problems sleeping you might ask about something called cortisol manager taken a few hours before bed to help change the curve. My husband loves it. Our LLMD suggested it. Dedee

You have gotten some wonderful advice from some very knowledgable people. As you can tell there are many ways to approach this issue. My advice is to read and learn as much as you can and decide which approach is best for you. Nailing down the infectious trigger is helpful so that you can address that while using what ever approach you decide. Many times (as you have already been told), there is more than one opportunistic infection at play. We have been fighting PANS for 11 years. We have 3 children all at different stages and have used many different methods of treatment. The one thing that all infectious processes have in common is the cytokine cascade. This is one of the things that causes the inflammatory process which results in many of the problems our children have. What has helped my daughter most has been limiting the release of cytokines. Certain cytokines are specific to strep, others to lyme, mycoplasma, bartonella, etc... but many are released in all of these infections. There are several different herbs that can help with cytokines. We also have done the genetic testing and are treating several different genetic issues, methylation etc... My daughter has had 2 IVIG's and she has been on antibiotics for 2 years. I wish I could tell you there was one specific thing that will help you but most likely it will be a combination of medical treatments, antibiotics, herbs, diet, genetics / methylation and behaviour therapy. The good news is you are in the right place to get help for all of that. There are wonderful supportive people here who can help you. Stay in touch and let us know how things are going. Dedee

I have been a cardiac nurse for 23 years and while I am certainly not an expert I do have some knowledge about the subject. If there is a possibility that your child has long QT syndrome or any mutation that could cause issues with the QT interval then you should absolutely and as soon as you can get an appointment with a pediatric cardiologist. No other doctor should be giving you advice on this issue. Kids are different when it comes to the electrical conduction system. Different even than adults. When measuring QT intervals there is something called corrected QT interval (QTc). This is a formula used that takes into account the persons gender, age, and the heart rate at the time the EKG is being taken. The QTc is the only thing that can detect wheter there is a true QT abnormality. A Pediatric Cardiologist has perfected this after looking at thousands of EKG's from kids. A true QT abnormality can be serious and I would be concerned if it were present in my child but I would only trust this information from a specialist in the field. Fortunately, having the knowledge is awesome and you can very well have saved your child some potential life altering issues down the road by treating things ahead of time. Electrical abnormalities such as QT syndrome are not in any way related to other heart problems such as blood flow issues that cause a heart attack or valve issues. You may check into your family history and see if there was anyone who died at a young age without warning or not related to any disease or illness. In the mean time, get an appointment with the ped cardiologist and stay in tunned to dizzy spells, palpitations and such and keep a diary of any such events. Make sure your child is always well hydrated and not electrolyte imbalanced but as always don't go over board either. I hesitate to say (in this group), that these things are quite rare and even when present rarely cause life threatening problems. But, hey we are all on this board right? So get it checked out and please let us know how things turn out. Thinking of you during all this time. Dedee

The first thing that jumps out at me is the low GABA and high Glutamate. This is a big issue for many PANS children and we have seen good results by working on getting this back in balance with our daughter. The following is an explanation on GABA / Glutamate balance and it's importance. Sorry it is so long. I did a cut and paste and didn't want to leave out any helpful parts: "Glutamate is the main excitatory neurotransmitter in the body. It is essential for learning and short and long-term memory. Glutamate is also the precursor to our primary inhibitory or calming neurotransmitter, GABA. GABA damps the propagation of sounds so that a distinction can be made between the onset of sound and a background noise. Many other physiologic processes require a balance between glutamate and GABA, which is usually easy to achieve as glutamate, glutamine, alpha-ketoglutarate, and GABA can be interconverted via the enzymes depicted above. Genomic defects, viral illness, and heavy metals will compromise this balance, leading to excess glutamate, insufficient GABA, excitotoxicity, and eventual neuron loss. Viral infection (individuals with Methyl Cycle defects cannot defend well against viral infection) can lead to antibodies against the vitamin B6 dependent enzyme glutamate decarboxylase (GAD), blocking GABA production (this is felt to occur in the pancreas in kids with juvenile onset diabetes). Aluminum poisons this enzyme as well. Excessive alpha-ketoglutarate generated due to the CBS up regulation can be converted into glutamate, but in the presence of lead and aluminum, the glutamate so created cannot be converted into GABA, glutamine, or back to alpha-ketoglutarate. The result is glutamate-GABA imbalance, agitated behavior, and eventually nerve loss. Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation. Glutamate excess does the same and also wastes glutathione and increases levels of TNF-alpha, an inflammatory mediator that can produce heart cell dysfunction and gut inflammation. You can restore glutamate-GABA balance by: 1. Addressing CBS up regulation/BHMT down regulations to decrease alpha-ketoglutarate production. 2. Decreasing intake of food precursors of glutamate 3. Supplementing with GABA 4. Copper inhibits conversion of glutamate to GABA by glutamate decarboxylase so avoid copper excess, or better stated, an imbalance between copper and zinc. 5. Calcium is involved in glutamate toxicity, so supplement with magnesium to keep calcium in check." Hope this was helpful - Dedee

I am so sorry you are going through such a difficult time right now. I hope you have a good medical team for both your son and your husband. It must be very hard to have to deal with both at the same time. It is good to be ready and willing to fight for your family. Unfortunately, we often have to do that when dealing with PANS. Do you have a PANS specialist? If you need any suggestions or just need to vent, do not hesitate to come here. There are wonderful people here who can help. Best of luck. Dedee

We did not stop antibiotics or supplements. When our daughter had nausea we held off till the nausea had passed and only required the most important supplements. For us the nausea was only for about a day and with some phenergan cream it was manageable. Hope things go well with your IVIG. Best of luck. Dedee

I don't mean to state the obvious, but make sure you swab both sides and get the posterior tonsil. If they don't gag you arent being aggressive enough.