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Dedee

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  1. Like
    Dedee got a reaction from Mimi4 in Handling Raging Behavior   
    My daughter was exactly like yours two years ago. I know you are hoping that this will magically and instantly go away with the right treatment. The truth is that this will most likely be a gradual thing. I am not trying to discourage you. I do want to give you something to think about though. Once you get a treatment plan in place, antibiotics etc.. I hope you will seriously think about a CBT / ERP program. This was the only thing that changed our daughters behavior. Yes this is a physiologic response but your daughhter MUST learn the appropriate coping skills and your family must learn the appropriate responses to her reactions. The only place for that is a center that focuses on OCD in kids. We have been to Rothman Center in Florida a few times. It has saved our family. At one point we (like you) were at our breaking point. I was so worried about our other two children and how this was affecting them. My husband and I were constantly fighting about the best way to handle things. USF / Rothman has helped our family more than I can say. You can't put a price on family peace. There is also a program in Rochester Minosota that is similiar to the one at Rothman. One of the therapist that my daughter saw moved there to work at that program. She was an awesome therapist.
     
    I know that right now you are thinking of getting her infectious issues under control and that is good. But I would go ahead and start thinking in the direction of a formal program. Anyone who has done it will tell you how life saving it can be. You can always just call and talk with them about the program. Dr. Storch is the head of the program and the best and nicest guy there is. My heart goes out to you. Your daughter sounds so much like mine. My daughter is even now going through a regression as she is sick with some sort of virus that has her in a flare. She had a rage last night but thankfully they don't last very long anymore. I KNOW your daughter can get better. It's goinig to take a combination of medications and therapy. We still struggle with sensitivity issues with her hair and cloths too. I am hoping she will grow out of that or that as the antibiotics continue to heal the lyme, those things will improve. Please stay on this board and ask for help anytime you need it. You need support to get through this difficult time. You are a good Mother and you are doing the right things to get your daughter better. Don't feel bad if you need to use medication temporarily to get her through this crisis time. My suggestion would be lamictal. It works well for rages and has few side effects. Keep us all updated. Best of luck.
     
    Dedee
  2. Like
    Dedee got a reaction from SSS in Update: I Need to Brag   
    Nancy,
     
    I can not say how happy I am for you. This is so awesome! I have no doubt that he is going to do wonderful in college next year. I can tell you that you will cry like a baby when he goes and your heart will burst with joy and pride and worry all at the same time. You have done a fabulous job with him. I know it has not been an easy road but you have worked hard and now you are seeing the fruits of your labor. This is the pay off for all the tears and frustration. Enjoy your accomplishment. You deserve it.
     
    My oldest son went off to college this year. It was the hardest thing to leave him on those dorm steps and drive away. I cried the entire 3 hour drive home. This was my first PANDAS child back when no one even knew what PANDAS was. What a struggle that was. Now he is in the honors program and living on campus doing all the things that normal 18 year old boys do (thats a scary thing). I am so proud of him and all of his accomplishments. It gives me hope that some day my 11 year old will do the same.
     
    So enjoy your son's last year of high school. It's a special time and you are a special Mom. Keep us updated on his future plans. So happy for you all.
     
    Dedee
  3. Like
    Dedee got a reaction from MomWithOCDSon in Update: I Need to Brag   
    Nancy,
     
    I can not say how happy I am for you. This is so awesome! I have no doubt that he is going to do wonderful in college next year. I can tell you that you will cry like a baby when he goes and your heart will burst with joy and pride and worry all at the same time. You have done a fabulous job with him. I know it has not been an easy road but you have worked hard and now you are seeing the fruits of your labor. This is the pay off for all the tears and frustration. Enjoy your accomplishment. You deserve it.
     
    My oldest son went off to college this year. It was the hardest thing to leave him on those dorm steps and drive away. I cried the entire 3 hour drive home. This was my first PANDAS child back when no one even knew what PANDAS was. What a struggle that was. Now he is in the honors program and living on campus doing all the things that normal 18 year old boys do (thats a scary thing). I am so proud of him and all of his accomplishments. It gives me hope that some day my 11 year old will do the same.
     
    So enjoy your son's last year of high school. It's a special time and you are a special Mom. Keep us updated on his future plans. So happy for you all.
     
    Dedee
  4. Like
    Dedee got a reaction from MomWithOCDSon in scary extract from Web Pediatrics re. antibiotics   
    From personal experience, my son was on antibiotics for six years and did not become a "non-responder". He stayed on the same dose that worked for him and kept his symptoms under control. When he was 17 we weaned him off and he stayed symptom free.
     
    All these children respond differently. It is very hard to make generalized statements. I have 3 PANS kids and they are all different in their presentation, and in how they have responded to treatment.
     
    Dedee
  5. Like
    Dedee got a reaction from SSS in scary extract from Web Pediatrics re. antibiotics   
    From personal experience, my son was on antibiotics for six years and did not become a "non-responder". He stayed on the same dose that worked for him and kept his symptoms under control. When he was 17 we weaned him off and he stayed symptom free.
     
    All these children respond differently. It is very hard to make generalized statements. I have 3 PANS kids and they are all different in their presentation, and in how they have responded to treatment.
     
    Dedee
  6. Like
    Dedee reacted to MomWithOCDSon in scary extract from Web Pediatrics re. antibiotics   
    And Dr. K. is a very big proponent of IVIG as THE appropriate response to PANDAS/PANS. He is speaking from his experience, which undoubtedly has depth; however, this is not reporting on the results of a clinical trial or anything beyond "professional anecdotal" information.
     
    Anyone know when the NIMH's abx trial will be concluded and reported upon? I admit I haven't been keeping up; have they closed that trial, or are they still accepting participants?
  7. Like
    Dedee got a reaction from nicklemama in New to this - bloodwork back for son - please help if you can   
    A psychiatrist should not be allowed to read labs of a child with infection and immune issues unless they have been trained by another specialist. You should immediately switch Doctors and find a LLMD or a PANS specialist. Do not waste your time with anyone else.
     
    Dedee
  8. Like
    Dedee reacted to ShaesMom in IVIG and Lyme   
    I had a very similar conversation with our Immunologist today although not necessarily in regards directly to Lyme but more so to the PANDAS side of things. He really emphasized that there isn't any perfect model out there for PANDAS, PIDDs, or any other illnesses because everyone truly is an individual and you have to take into consideration genetics and environmental factors among other things. What works for one person is not necessarily going to work for the next and there may be no real explanation as to why.
     
    It is my understanding that IVig is not a preferred nor recommended treatment for those who are only IgA deficient.
     
    I think my Immunologist would have a rather heated discussion with the LLMD who feels that IVig is "immune suppressing". I would like to be a fly on that wall! My dd had seven years to train her body to fight the LD on it's own and the LD has obviously been winning the war.
     
    I realize that our positive experience with IVig is not necessarily the norm for everyone but it has been our experience.
  9. Like
    Dedee got a reaction from Rachel in Pros and cons of steroids?   
    My daughter has several reasons why we shouldn't use steriods. However, desperate times call for desperate measures right? She has Lyme and she also has tics. In the past she has gotten so bad I would have tried anything. We have used steriods on several occasions. Different lengths of time, different doses, etc..until we have found her sweet spot so to speak. When we go too high on the dose her tics get crazy. The longer we go the worse the tics get. So we keep the dose as high as we can without making her miserable with tics and go as long as we can before they explode (if that makes sense). I admit, it has been purely trial and error on my part and she has been a bit of a guiney pig. But I'm a nurse and I guess I'm more comfortable with that sort of thing than some may be.
     
    She is 10 years old (almost 11), and weighs almost 90 lbs. I can give her 10-12mg per day divided into 2 doses and she can go about 10 days. On day 7 or 8 I start weaning, depending on how the tics are and how much prednisone I have on hand. If she starts ticcing badly before then I will immediately start weaning her off. This is really a low dose considering what she could get by guidelines, but it's all she can handle before the tics kick in. It will increase them slightly but not to the point that it bothers her.
     
    Another thing is that while she is on the steriods she will increase her irritablilty. Some people think this means that it is making them worse and stop them. Reality is that steriods make the general population irritable. So it's not unusual to see a PANS kid get more moody and even have a few more rages and irritability. This is the nature of steriods. It also makes them hungry and have a hard time sleeping. Again, a natural side effect of steriods. If you tough it out, you will see some nice results at the end.
     
    So, JMHO, I think what many people think is a "bad reaction" to steriods in their kids is really just normal side effects that are amplified because our kids already start out with some of these issues in place. It's all about what you can handle and what your child can deal with in order to get the desired effect. Again, this is just my opinion based on my experience. A lot of kids react differently based on their immune system, current infectious processes, etc. You have to make the best decision based on your experience with your child. Best of luck.
     
    Dedee
  10. Like
    Dedee got a reaction from Hrosenkrantz in Autoimmune Encephalities   
    When we did the IVIG's we got good results. It was only after more illness that she regressed. Also, at the time of IVIG, we had not treated Lyme. She has been on lyme treatment for 3 years now. She also does very well with steriod treatment but I generally have a hard time getting someone to give it to us. I usually have to use the prednisone that I have for my gout. I have to keep the dose lower than most would use so as to not increase her tics, but it does help her behaviors.
     
    Also, I spoke to a few of the physicians at the conference in California. We discussed how quickly she regresses with illness. Two of them told me that they thought she would be a good candidate for some of the more powerful drugs out there. I feel we need to be seen by some of the more "serious" physicians. If we are told after this that all she still needs is antibiotics and supplements then at least I know I have done all I can.
     
    Dedee
  11. Like
    Dedee reacted to airial95 in PANDAS and ODD   
    My son was very young at onset, only 19 months old, so differentiating between ODD/OCD and typical "terrible 2's" behavior was always a challenge.
     
    But one of the things we noticed particularly about the ODD was almost a compulsion to disagree or do the opposite of what he was asked. A good example of this would be simply choosing what cup he wanted to use with for his drink - if you would ask him if he wanted the red or blue cup, he simply couldn't make a choice, not because the choice was difficult, because we were asking him to make a choice. If you asked him directly if he wanted the red - no, okay then the blue - no. The over-riding answer was always no.
     
    My son is 6 now, and has a better understanding of how his PANDAS affects him than I could imagine for his age, he has since described to me how hard it is to do things he's asked to do, even when it's something he WANTS to do. To go back to my cup example, he would tell me that he would really want the red cup all along, but because I was asking him if he wanted it - he "had to" answer "no."
     
    Not sure if that helps, but it helped us to understand it better.
  12. Like
    Dedee got a reaction from rowingmom in Neurologist says today: it's PANDAS   
    Well there you go. Don't you just love main stream medicine? Has never helped us not one little bit. I applaud your out look. Stay in the moment and be glad you have been blessed with good common sense which is more than most physicians have.
     
    Dedee
  13. Like
    Dedee got a reaction from kimballot in Hang in there! We are doing well   
    I am so happy to hear this news from you. You deserve it after all the years of struggle. Happy Day!
     
    Dedee
  14. Like
    Dedee got a reaction from nicklemama in Tell me I'm wrong...   
    I'm missing the part where this doesn't fit the PANS criteria. ODD, rage, high sensitivity, frequent urination, anxiety......Seriously, this fits my daughter to a T. Also, going to admit that as my third PANS child I had some denial going on as well with dd. You need to start trying to find an infectious source. I would bet something is hiding in there somewhere.
     
    Dedee
  15. Like
    Dedee got a reaction from qannie47 in Discipline and OCD   
    I know it's different with teens and every situation is different. I have done things I thought i would never do with my raging daughter. However, I do believe I would draw the line with him taking your things. I would tell him that once he returns what is yours then you can talk about him getting his things back. There can be no discussion about anything untill your things are back in your possession. My daughter has some really big rages also. We have been to USF 3 times to work on her rages. I used to think she couldn't control her violence, but I have since learned that she is able to stop the violence with incentive. I would not allow him to manipulate you. JMHO. I understand this is a hard situation. Best of luck.
     
    Dedee
  16. Like
    Dedee got a reaction from amyjoy in West Coast PANDAS/PANS Symposium April 26 by SFO   
    I'm coming.....Can't wait!
     
    Dedee
  17. Like
    Dedee got a reaction from nicklemama in Trying not to be disheartened..   
    I have been through this crap with these kinds of Physicians for over 12 years. Hold your head up and hold on to your resolve. Your are the Mother and you know your child best. Dust off your pants Sister and move on! You are a good Mother and you will find the right Doctor for your child. You may very well have to travel. My first child manifested 12 years ago and we ended up traveling 12 hours to find a Doctor. It is very validating when you finally find a specialist who understands your child and understands the issue. It's worth the effort. Get an appointment with a PANS specialist. Don't mess around with main stream medicine anymore. Hang in there. You are doing the right thing.
     
    Dedee
  18. Like
    Dedee got a reaction from SSS in Trying not to be disheartened..   
    I have been through this crap with these kinds of Physicians for over 12 years. Hold your head up and hold on to your resolve. Your are the Mother and you know your child best. Dust off your pants Sister and move on! You are a good Mother and you will find the right Doctor for your child. You may very well have to travel. My first child manifested 12 years ago and we ended up traveling 12 hours to find a Doctor. It is very validating when you finally find a specialist who understands your child and understands the issue. It's worth the effort. Get an appointment with a PANS specialist. Don't mess around with main stream medicine anymore. Hang in there. You are doing the right thing.
     
    Dedee
  19. Like
    Dedee got a reaction from fapsuppomyday in Anyone have research linking vaccines to ASD?   
    I have a family member who is asking if I have any medical proof to show she shouldn't vaccinate her baby. Does anyone have any articles that show the link?
  20. Like
    Dedee reacted to Hopeny in Pans Docs Consensus Regarding Lyme?   
    Richard Horowitz talks about multiple infections in his new "Lyme" book Why Can't I get Better? It's worth a read. My DD never had a + strep swab before she got Lyme and now we can't seem to get rid of strep. Lyme has wrecked her immune system and seems to have caused a chronic state of inflammation. Our LLMD's have all discussed IVIG at different points. In my opinion the important reason to have a real Lyme assessment is 1) the treatment course would likely be different than just strep and 2) where there is Lyme there are co infections which require different approaches. I'm definitely one who is always ringing the Lyme bell as it's concerning to me to hear people whose kids have fairly obvious Lyme symptoms along with Lyme specific WB bands but are told their kids don't have Lyme and to move on. I'm constantly exploring everything and I would encourage others to do the same. The trouble with Lyme and steroids as I understand is if they are used early on before treatment there is a risk of worsening the case. If its a new case of PANS, with no prior treatment, and there are Lyme symptoms, then it seems reasonable to get a thorough evaluation before trying steroids. If it's someone who has been on abx treatment, then it could be thought about differently. It's the same with IVIG, I'm not a doctor but from reading people's stories it seems that early IVIG treatment without addressing Lyme seems less effective that Lyme treatment followed by IVIG.
    My DD's former ped prescribed what I learned was an extremely dangerous and ineffective treatment for her mild asthma.(pre pandas) I was eventually forced to consult a pulmonologist and wow what an eye opener, I decided after that experience to only use a specialist to evaluate each specific problem. So it's the same as I recommend for Lyme, get an expert evaluation by someone who has seen/treated thousands of cases. Eventually as the PANS model evolves, I think treating doctors will need to gain more expertise around all of the typical infection triggers, just as LLMD's now are starting to better understand PANS. IMO, the treatments can easily converge...
  21. Like
    Dedee got a reaction from SSS in Need Help...Still Struggling   
    I'm going to give you my honest opinion (for what it's worth). If you are treating Mycoplasma (and those are some high numbers) with only 250mg of Zithromax you are in for a long hard fight. Your aren't dong much more than just fighting a forrest fire with a water gun. Mycoplasma is a stealth pathogen that invades multible body systems. See if you can google some of Dr. Garth Nicholsons work on Mycoplasma. It can take months to years to clear Mycoplasma and even then you may see relapse.
     
    Also, Myco can be a co-infection of lyme. You may want to consider Lyme testing. Either way, LLMDs are the best at treating Myco P because they are so familiar with it. If you are only treating with one antibiotic it will be a very long recovery (again JMHO).
     
    I have two children who have been treated for Mycoplasma. My daughter had Myco, Lyme, bartonella, and anaplasma. Her Mycoplasma titers are now in normal range. My son had Mycoplasma and Lyme. His Mycoplasma titers went into normal range after one year of combo antibiotics and I was so thrilled. However, about a year later he started to regress and was having depression and anxiety. We retested him and his Mycoplasma had re-activated.
     
    You should see if you can find someone to give you a combination of antibiotics. At the very least you need a stronger antibiotic. Biaxin works well but you must be aggressive with dosing. I would find an LLMD. They know how to treat this beast.
     
    Best of luck - Dedee
  22. Like
    Dedee got a reaction from Mommy2MCL in Need Help...Still Struggling   
    I'm going to give you my honest opinion (for what it's worth). If you are treating Mycoplasma (and those are some high numbers) with only 250mg of Zithromax you are in for a long hard fight. Your aren't dong much more than just fighting a forrest fire with a water gun. Mycoplasma is a stealth pathogen that invades multible body systems. See if you can google some of Dr. Garth Nicholsons work on Mycoplasma. It can take months to years to clear Mycoplasma and even then you may see relapse.
     
    Also, Myco can be a co-infection of lyme. You may want to consider Lyme testing. Either way, LLMDs are the best at treating Myco P because they are so familiar with it. If you are only treating with one antibiotic it will be a very long recovery (again JMHO).
     
    I have two children who have been treated for Mycoplasma. My daughter had Myco, Lyme, bartonella, and anaplasma. Her Mycoplasma titers are now in normal range. My son had Mycoplasma and Lyme. His Mycoplasma titers went into normal range after one year of combo antibiotics and I was so thrilled. However, about a year later he started to regress and was having depression and anxiety. We retested him and his Mycoplasma had re-activated.
     
    You should see if you can find someone to give you a combination of antibiotics. At the very least you need a stronger antibiotic. Biaxin works well but you must be aggressive with dosing. I would find an LLMD. They know how to treat this beast.
     
    Best of luck - Dedee
  23. Like
    Dedee got a reaction from pr40 in Advice Needed   
    Here is my suggestion.....You have a ped that is at least opent to the idea. You have a child that you know exactly when this started. The NIMH says these are the critera. Dr. Sue Swedo and her team at the NIMH are more than happy to discuss these criteria and treatment with physicians. All you have to do is e-mail her and give the information. Include physicians name and phone number, and the background on your daughter. If Dr. Swedo can't contact your ped personally then one of her team members will.
     
    I know a couple of people who have done this and it really works out well. Just goe to the NIMH website and the information is there. They highly encourage this exchange in order to educate physicians and help kids.
     
    Other wise you need to immediately find a PANDAS / PANS specialist and make an appointment. You need a full lab work up and appropriate antibiotics. You need someone who is experienced and knows how to deal with this type of situation.
     
    Dedee
  24. Like
    Dedee got a reaction from Janny in Help to understand sons blood work   
    Try to put this hiddious experience behind you and do not let it slow you down on your quest to get your child the care he deserves. Just makes me so mad that we still go through this. I expected it 11 years ago when I first started this with my son because the diagnosis was so new in the Medical Community, but really things have come so far you would expect these educated jerks to get with the plan by now. Uggg......Keep up the good fight....
     
    Dedee
  25. Like
    Dedee got a reaction from philamom in New to forum- DS 9 has Lyme, severe OCD question   
    There is no rhyme or reason as to what intrusive thoughts get stuck in the heads of these children. I will tell you that it is not unusual for children to have intrusive sexual thoughts. There isn't a lot of discussion about it because many people are embarressed about it. When we have had our kids in therapy or in CBT they always ask about this and tell us it is very common. I don't think I have any advice for you except to seek professional help from someone who is experienced in this type of thing with kids. I would continue Lyme treatment as I am sure this is the root cause and make sure to use detox. I'm so sorry you are experiencing this. It seems it's always the ones that are shy about those things that end up with this type of issue. Sort of like their worst nightmare playing over and over in their head. OCD is like that. Ugg......what a terrible thing for a child to have to live with. Very unfair.
     
    Dedee
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