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SurfMom

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  1. Like
    SurfMom got a reaction from ABdualPT in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: 

    With one of the most profound and difficult to treat cases to  ever treat - my daughter is staring community college in the spring!
    You name the symptom and she has exhibited it - to name a few... complex tics,  anorexia, bed wetting, mutism, depression, OCD, sleep disorders,  a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia.
    She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab.
    We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her.
    It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT.
    I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services)  in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back.
    Hang in there....it will get better... Here is the 2015 post. 
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 
      5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 
     
  2. Like
    SurfMom got a reaction from lovemylittleguy in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: 

    With one of the most profound and difficult to treat cases to  ever treat - my daughter is staring community college in the spring!
    You name the symptom and she has exhibited it - to name a few... complex tics,  anorexia, bed wetting, mutism, depression, OCD, sleep disorders,  a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia.
    She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab.
    We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her.
    It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT.
    I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services)  in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back.
    Hang in there....it will get better... Here is the 2015 post. 
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 
      5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 
     
  3. Like
    SurfMom got a reaction from aba in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: 

    With one of the most profound and difficult to treat cases to  ever treat - my daughter is staring community college in the spring!
    You name the symptom and she has exhibited it - to name a few... complex tics,  anorexia, bed wetting, mutism, depression, OCD, sleep disorders,  a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia.
    She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab.
    We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her.
    It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT.
    I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services)  in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back.
    Hang in there....it will get better... Here is the 2015 post. 
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 
      5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 
     
  4. Like
    SurfMom got a reaction from bobh in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented.
    Then see what tests he suggests and allow him to make the diagnosis.
    Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance.
    I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-). 
  5. Like
    SurfMom got a reaction from MomWithOCDSon in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented.
    Then see what tests he suggests and allow him to make the diagnosis.
    Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance.
    I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-). 
  6. Like
    SurfMom got a reaction from bobh in Has anyone dealt with Catatonia?   
    Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help:
    Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed),  9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. 
    Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. 
    Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including  high DNase titers, etc. 
    If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery.
    You are more than welcome to PM me.
  7. Like
    SurfMom got a reaction from lovemylittleguy in Hang on to Your Hat...We Have Already Done IVIG   
    As some of you know, DD15 had a her first exacerbation that started around Halloween, bounced back beautifully with a high dose amoxicillin course, and then started an exacerbation at the end of November that as of two weeks ago still had not broken. Took her to Rothman to see a non-plussed ped psych who put us on yet another antibiotic and sent us home. We called again as she deteriorated and we tried another (call us back in two weeks, blah, blah, blah...). A call to the nurse told us that no only is Remfer leaving (no great loss) but Dr. M is not seeing new patients.
     
    With a gut instinct that this was more than PANDAS and worried about her still deteriorating state, we pressed and got DD15 into her ped, neuro on the 23rd. Very concerned about her increasing catatonia, flat effect and chorea (for the first time) with tics, she made calls to Duke where she did her residency and we were seen there last Monday. This recommendation came with the understanding that no nearby hospitals are autoimmune centers with the ability to do IVIG if necessary.
     
    A quick exam and the ped. neuro and ped, rheumatologist had her admitted and DD had a grueling three days of tests including PET scan, echocardiogram, a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. In the thoroughness of her diagnosis we have seen neurology, psychiatry, rheumatology, a dietician, speech therapy, physical therapy and immunology.
     
    By Thursday all the major concerns had been eliminated and we were looking at a diagnosis of autoimmune encephalitis (a broad category that would include PANDAS) with a recommendation for steroids and IVIG last Thurs the 31st with a second round of pred yesterday. The prep for the IVIG left her with no side effects and we already have a date for her second IVIG in late Feb.
     
    We are now in a hotel near the hospital waiting for her to have some neuropsych testing before we leave town on Monday and we already have a date for her next IVIG at the end of February.
     
    I realize that we had the good fortune of having a neurologist who had an excellent reputation as a resident at Duke where they have recently started an autoimmune center but we are stunned at how fast the diagnostic and treatment phases have taken place.
     
    What we wish we had done and what we learned:
     
    1. Don't hesitate to move beyond a pediatrician and get seen by a pediatric neurologist early on.
    2. If your child does not improve with antibiotics soon like ours did, do not waste months moving from one desperate course of antibiotics to another for months and get on with step one. This is, after all...her BRAIN, joints and possibly heart. Unfortunately, for us and others, the symptoms could also be degenerative conditions, cancer or other causes in which time means everything.
    3. Do not rest with a diagnosis with PANDAS. Step back and consider ruling out every other possible condition
    4. Get your child to an autoimmune center like Mayo or Duke. There are several others around the country.
    5. In marriage with four above, do NOT just seek out a ped neuropsychiatry program like USF and Rothman without a complete physiological workup. Deal with the psychiatry AND the physiology of what is going on. These two are tied together but they do not stand alone.
    6. Be educated when you go in but do not be married to any name of the diagnosis. The reality is that every single autoimmune presentation and cause can be unique there are hundred and hundreds of antibodies and there are more being discovered every day. Treatments like IVIG cover a broad spectrum of diseases. Again, there could also be co-morbidity.
    7. Be educated on your insurance and if your child is as sick as mine was/is you may want to push for admission to speed diagnosis and treatment if your coverage will allow it.
     
    DD15 is already showing some signs of improvement and now after a grueling week she is sleeping off the effects of the diagnostics and treatment in one WEEK. We are not going to be Pollyanna-ish about her recovery and how long the pred and IVIG will hold, but we feel like we have a direction, some home and an gratitude for the speed in which she was diagnosed and treated. For the first time in almost three months yesterday, I saw my daughter SMILE with nary a tic in sight.
     
    If you have questions, fire them off or PM. I am still out of town as we have neurpsych testing and travel home, but I will get to all of them.
  8. Like
    SurfMom got a reaction from Kathy4Him in Cellcept - Working!   
    After eight months of what most would call a constant exacerbation, debilitation to the point of needing a feeding tube due to OCD swallowing refusal and help with all functions including toiling, complete shutdown of speech, climbing antibody titers and negative affect, we FINALLY have some improvement in DD15's condition.
     
    Here is the combination that appears to be reducing her antibody production or cross-reacting antibodies:
     
    IVIG monthly at a 1g/kg dosage
    Prednisone daily at 30 mg.
    Cellcept 1750 mg. daily <---This may be the key
     
    Also in her case:
    Ativan for catatonia (no speech, shut down, wanting to sleep all day)
    Zoloft for moods
     
    We have a very long way to go but crossing her fingers that we have turned a solid corner.
     
    Will keep you posted.
  9. Like
    SurfMom got a reaction from Hayley in Guilt about child missing school   
    My daughter just missed her freshman year in high school after being a student athlete and a 4.0 honors student. She missed football games, dances, getting her driver's permit, texting her friends, shopping outings, vacations and now the reality of not graduating with her peers or...even worse...her twin. As a teacher and knowing her vast abilities it was not a decision I took lightly or easily. She went from honors classes, to homebound coursework to nothing at all in a three month period.
     
    What I know:
     
    It is going to be devastating when she comes out of this.
     
    What else I know:
     
    After the tears, hurt, anger, jealousy and a range of expected emotions and roller coaster rides, she is going to be admired the rest of her life for persevering through this and encircled by people who are going to lift her up through every tough moment. In the end she will be an adult like everyone else, she will be in college classes in which the age range of students will be 17-70, and she will be healthy with the power of knowing there isn't one thing on this planet that she cannot get through.
     
    I do not feel guilty, I feel empowered knowing I made the right decision in letting her get well at her own pace, putting her health above everything else, and being prepared to take the blame if she, or anyone else, points a finger at me over this decision.
     
    A year, two years...in the end, it will be offset with the riches she will carry with her in the love, power, experience, wisdom, strength and confidence that will come with this journey.
     
    I don't feel guilty; I feel like a fierce mama tiger.
  10. Like
    SurfMom got a reaction from BamaMom in Guilt about child missing school   
    4 Nikki.....
     
    Thank you for the music link.
     
    Her is one in appreciation. I sing it to DD 15 (to the top of my lungs) and it seems to fit well with this thread:
     

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