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Everything posted by wornoutmom

  1. My ds17 has a story similar to those posted above. Diagnosed at age 6 after several chronic strep infections - complex vocal tics, separation anxiety, enuresis, sensory problems, food restriction and confession ocd to name just a few restrictions. T&A at 7 along with SSRIs and ERP therapy provided some significant recovery for several years, albeit definite flares with illness (usually bacterial). 2nd exacerbation at age 12 brought on panic attacks, rages, severe school phobia. Despite having a diagnosis, there was no evidence of strep and therefor no medical treatment. Instead, psychiatric hospitalization, lots of psych meds, lots of therapy and the start of special education at school. Age 14 brought 3rd exacerbation with sinus infections and the lovely H1N1. At that point I had high speed internet, and this awesome forum, and the support to reach out of the box on my own and seek serious PANDAS knowledge and help. Testing found mycoP, raised CamKinase and PETscan showed brain inflammation. High dose antibotics for 2 years and 1 ivig (had to pay OOP so more than one was not an option). Our story was one of a long path to healing. 3 months after the IVIG he started highschool, and only made it 1 1/2 weeks before his anxiety shut him completely down. We had to pull him to half days and added xanax to the mix of risperdal and luvox and biaxin and supplements and bi-weekly therapy sessions. But inch by inch and day by day he healed. At it's worst as a teen, he was regressed, had urinary incontinence, was overweight and lethargic, had 3-4 terror attacks a day, could not sleep, had separation anxiety and school phobia, could not form a complete sentence, couldn't read, feared he'd end up homeless on the street or institutionalized and had severe depression. Today, he is in school full time with As and Bs, and where he once couldn't get out the door. He drives, has made a few friends, and holds a part time job at McDonalds. He is off all meds except Luvox and supplements. He laughs, he is calm when facing adversity, advocates for himself, looks forward to attending college, and is a strong kid with a good head on his shoulders. He can see where he was and how hard it was to get where he is, and he is really proud of himself. He acknowledges that PANDAS may always be a part of him, but deals with small flares in stride, knowing they are temporary (usually last less than a week and are brought on by stress or a cold). He understands himself more than the average teen (or even adult), and says things like "I'm magnifying this problem, aren't I?". In short - his childhood and teen years may not be what they would/could have been and sometimes that's still hard. But he focuses now on the lessons he has learned from the journey and moves on with hope. So none of it was easy, and none of it was quick, but don't give up. If your child has been sick for a long time, it may take a long time for them to heal - but they WILL heal!!!
  2. Tomorrow is my son's 17th birthday and I'm feeling emotional, and more than anything, a profound sense of gratitude. He'll be celebrating tomorrow a very different person than when I first posted to this group 3 years ago. Though I rarely post anymore, and I'm not sure how many reading now remember me, I often think back to that lonely night in a Maryland hotel room 3 years ago when yet a second PANDAS expert told me "this doesn't look like classic PANDAS". I turned my computer on completely devastated and defeated, to say goodbye to this group, and was met with warriors, urging me not to give up, trust my gut, keep seeking help. Pretty soon I had strangers on the phone offerring their support, and a hugely compassionate doctor who offerred to look at my son's case free of charge. The people here redefined compassion for me. You are what kept me moving, what kept me sane. Without you, we would not have had a PANS diagnosis. We would not have followed through with a PETscan that eventually showed inflammation in the brain. We would not have found MycoP,had appropriate antibiotic treatment, or gotten IVIG. We would not have gotten through the relapse that came after the IVIG. He would likely be homebound, or lingering in a residential treatment center, if your voices had not pushed me forward. Instead, at age 17, he is a junior in high school who went from thinking he'd end up homeless on the street. to actually believing he will graduate and go to college. He read a novel and understood it. He's actually getting all A's and B's right now. He's driving, bought his own car, and has a part time job. He's hardworking and sincere. He has a good head on his shoulders for a teenager. He's made a few friends. He went to his first highschool dance. He asked a girl out (she said no - but still...) He's off all but one psych med ( he was on 3), he's off antibiotics, he's out of therapy. He hasn't had a terror/rage attack in over 2 years. There are no more holes in the wall and no more broken glass. He no longer suffers the embarrassment of enuresis. He's not paralyzed because he doesn't know "what's happening?" with the day. His physical tics are gone and his verbal ones are few and far between - more like the occassional funny nonsense blurt out that everyone just laughs at. His little brother is writing an essay this week in school on how his brother is his hero. It's not perfect by any means. This is not a "oh - he's 100% completely symptom free" story. He still takes an SSRI, and loads of supplements.He gets headaches, and he naps after school. He still has an IEP with accomodations. He still struggles with some ocd rituals, anxiety, depression, low self esteem and on rare occassions a panic attack. These symtpoms still get worse when he is sick (though his illnesses seem much less severe these days)and I still catch myself (as does he) panicking when it happens. And on top of that he can just be a pissy teenager at times. But after years of being "gone", he is starting to find himself and think about who he is beyond PANDAS. It's an amazing thing to witness and reflect on. So I offer my immense gratitude to all of you that were there for us, and all of you who are still here for each other. You will be in my mind as we are celebrating tomorrow because without you we wouldn't be celebrating the same things. Keep fighting for your kids. No matter what it costs, no matter who tells you you should stop, or how long it takes, or where it leads you. You may feel alone, or like you don't know what you are doing, but you do. You know your kiddo is sick, and you know you will get them well. It will happen.
  3. Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!
  4. I rarely post here anymore, but still read the forum faithfully. I just wanted to say that you guys are my heroes for being so proactive in contacting Dr T, contacting these parents, contacting the media etc. If these kids are PANS, are treated and improve, it may be the tipping point that this disorder needs to finally finally gain mainstream acceptance. Think of all the future kids who might be properly diagnosed and TREATED. My ds16 has been diagnosed since 2002, when there was barely any knowledge, treatment or support. We spent many years alone with this... It is amazing to me to see this network of parents and all that they have done in the past few years and now to see widespread national media coverage. It is amazing to be able to say my son has PANS and people know what I am talking about. It is SO empowering for my ds to be able to see all this, and know he is not alone. You guys are MY heroes!!
  5. melanie: I can't imagine the stress you and Danny have been under this past week. You both need some time to recover just from the experience of teh hospital alone. This was major treatment and it would be normal for both of you to be anxious, depressed, and a bit traumatized. I would encourage you to give it some time and a return to "normalcy" and then try to evaluate if you see any of his PANDAS symtpoms improved. Meanwhile, try to take care of yourself and recover. I have to say that I disagree with PANDAS16 in that learned behaviors, no matter how long they have been around, can be unlearned/replaced and developmental growth can occur, just may be delayed with our kids that have been sick so long. They may never get back experiences they missed because of the illness, but they will get there in time. The brain is an amazing organ - look at stroke victims who learn to swallow and talk all over again. New connections can be made to override the old ones. It has been 4 long years and my son still struggles somedays with what I call "auto messages" that have been so ingrained in his mind his brain just thinks them before he can get out a thought of his own. Therapy has helped a lot with this, in that he is getting better and better at recognizing these repetitive anxiety thoughts are just default brain wiring from all his years of being sick, and once he recognizes this he can not react emotionally to them, and replae them with his OWN thoughts. None of this work could have occurred before treatment, and it has been lot of work to get as far as he has, but he is getting there one day at a time. Danny will get there too. It may not be overnight, but I truly believe all you have done for him in getting him treatment will set the stage for him to recover and live a good life. you are a wonderful mom and he is amazingly blessed to have you.
  6. My 15 yr old PANDAS son has been sufferring from chronic headache and vertigo. His pediatrician suspects rebound headaches from Ibuprofen use, and wants to try him on a low dose of Topomax to see if we can stop the Ibuprofen and get him headache free. In my research about this drug, i find that it is a glutamate inhibitor, and has been found useful in some OCD clinical trials. Hmmm...has anyone tried this on their PANDA or used it themselves?
  7. I am SO sorry I havent replied to your post!!!!! I just now signed in and realized it was on here! Dr Harry Chugani at Detroit Children's Medical Center is a world renowned neurologist who is treating PANDAS, and also specializes in Autism. He will see you!! Also, email me at rhelinski@aol.com if you would like to join our Michigan support group online...

  8. Yes and yes... But u already knew that. Call dr c again if u can. He has been good about getting pandas kids in asap if they are in distress. Or contact Cathy at the above email and she will likely get your appointment moved up
  9. Joan. I am so so so happy for you and your son I am grinning from ear to ear. I hope your son understands and appreciates what an amazing mom he has in you. You have never given up on him and worked your tail off doing everything under the sun to help him. I hope you see lasting relief and both of you can enjoy your summer
  10. my PANDAS kid passed out in the office after receiving these vaccines. A week later, massive stomach cramps, fever, diarreha, and the beginning of a downward mental spiral that has not returned to previous baseline 3 years later. I believe it was the overload on the system. If i could take it back, I would have never done it. I have felt guilty, angry etc.. My Youngest, nonPANDAS, was due for these vaccines this year. We discussed each indivdually, and found no reason to administer them. The risks of the vaccine seemed to outweigh the chances of him actually contracting these diseases at this time. We will revisit meningitis when he goes to college, as that seems to be the highest risk environment for this disease.
  11. Wow Kim. Reading that update was like reading my own story from a year ago with my 14 year old son. Like - down to almost every last detail except we hadn't gotten IVIG yet. It's eerily similar. Almost creepy. Can I ask if you have tried Biaxin as an antibiotic yet? The start of that drug began the tapering off of the rage and defiance for my son.
  12. Mia: I am so sorry you are having to fight so hard. I've been there, and it is an awful, helpless, powerless feeling. Our children shouldn't have to suffer because of doctor's arrogance and ignorance.
  13. Wilma: We went the hospital route 3 years ago when my son pulled a knife on himself, at the urging of his therapist. We had to call the police to get him there. It was so incredibly traumatic for all of us. The docs at the hospital knew about PANDAS, but had no idea about treating it and did not. My son cried for 7 days straight from separation anxiety, and came home like a zombie from the ramped up dose of Risperdal. Two good things came out of that week, the first being that I got a few days of respite after months and months of exacerbation. The other was that from there on out, no situation was a scary as the hospital for my son, and he was willing to work hard on his ERP/CBT just to avoid the hospital. It got him back into school after 3 months of refusal. Whenever anything seemed hard or scary, we'd say - "It's not as hard and scary as the hospital. You did that, you can definitely do THIS". That being said, when we were faced with a similar severe exacerbation last year, we opted NOT to hospitalize him. I realized that he was medically sick, and no amount of therapy or psych meds were going to change that at that point. What he needed was medical treatment and understanding that this was something happening to him - not somehting he was doing. THe medical treatment was finally what got him out of the crisis. So, I guess what I'm saying is I've been in your position and made both choices. Neither is easy. I agree with brown eyes - what would be the goal? To keep her safe? To give you respite? To stabilize her with psych meds while they can observe her? To treat her PANDAS? Arre they willing to consult with your PANDAS doc? Find out, and see if this matches with your goals.
  14. Angela and Cathy: So So sorry I didn't catch this post earlier!! I had been on vacation that first week in April with no wifi, so lost a week of posts and this got buried until I was looking farther back somemore tonightand came across the thread. I have PMd you some more info!! -Rachel
  15. Emerson: I just read this and am so glad today things are brighter. I wanted you to know that your post was a truly amazing gift to me. Like noone else has ever done, you allowed me to see inside the mind of my son, when all I could see on the outside during his darkest times was the screaming, the terror, the rage, the violence, the withdrawl. I just can't tell you how powerful that is to me. I can tell you that one thing PANDAS hasn't stolen from you is your truly amazing ability to express yourself. Don't ever feel you need to not share the darkest thoughts or feelings - this is how they transfer from inside your mind to the outside so that you can move forward. This is how you unstick what is stuck. But echoing the concern of your other cyber moms, please also make sure you have a phone number to call or a person nearby to be with you when you are in crisis and the PANDAS brain is in control. Please make sure you communicate this despair to your family, so you can come up with a plan for your ultimate safety when the worst moments do hit you.
  16. when did you find out you had mycop? It can be a B**CH to eradicate. did you do followup testing to make sure it is really gone? It took my son 9 months on treatment dose Biaxin plus IVIG before we finally got a negative result. You got better before, you will get better again!!!!!!!!! It's ok to feel sorry for yourself for a while -, but NOT to lose hope. Treat yourself like you are your own child (with compassion and care)- and fight for yourself. You know you would be telling us moms not to give up! Line up your support system - tell everyone what is going on - its not your fault! Do one thing each day, no matter how small, towards getting yourself answers and getting better. Please tell yourself this is a temporary reaction to an infection and you can and will achieve remission again. And then get on the phone to your PANDAS doc, and if you don't have one - get one - and get this figured out! I look forward to seeing you postyour progress.!!!
  17. Telya: Did Dr C indicate what the abnormal volume asymetry in his thalumus may mean?
  18. Telya: Did Dr C indicate what the abnormal volume asymetry in his thalumus may mean?
  19. My son had a CamK of 168, and the PETscan with Dr Chugani last March that showed inflammation in the basil ganglia and thalumus. We became his patients, he recommended IVIG, and wrote the script for us. We have had 2 follow up visits. His research was initially based on the use of PET technology, and he has 2 current PETstudies running at this time to my knowledge. The research study we participated in was based on looking for brain inflammation from auto immune disorders. At the time we saw Dr C, he had treated less than a dozen PANDAS patients with IVIG. He freely admitted this was not his area of expertise (he is an neurosurgeon and world renowned epilepsy guru), but he was kind and compassionate, and took my input and questions from everything I had learned here. Since that time, he has been doing repeat PETscans after IVIG to measure the changes, and treated several more children. These results, I believe, are going to be the breakthrough for this disorder. He has talked with both Dr T and Dr K, and Swedo is aware of his work. He is learning more and more about the disorder and putting himself out there for the PANDAS kids here in Michigan.
  20. peg: it's my understanding that antibiotics do not kill the bacteria. They hamper it in some way (different types of ways for different types of abx) to allow your immune system to effectively fight the infection away. Perhaps this is a new strain of strep, that zith was unable to hamper enough or in the right way, and/or the donor antibodies did not recognize. My son had reccurent strep infections years ago that several doses of zith was only a small bandaid for. It took the Clyndamycin to knock it out. This is strong stuff that goes into the smooth muscle tissue looking for bacteria. I believe this will work, and that your daughter will get back to healing.
  21. Still here reading periodically, occasionally posting. Been busy providing support to our state group. I think we all post more when we feel lost and are needing answers, or just going through the emotionally horrid times of raising a kid in exacerbation. I will post that we "may" have finally hit remission. I thank the universe every day for progress and the parents here who held a huge part in that. What we have done: March 2010: Petscan reading positive for inflammation in the basil ganglia and thalamus Positive Myco P IgG found - 2 shorter courses of Biaxin April 2010: 5 day steroid burst, another round of Biaxin for sinus infection May 2010: Biaxin started daily (1000 mg) and we continue on it to this day. June 2010: IVIG 1.5 gm/kg Last rage/terror attack this month. Aug 2010: Last facial tic goes away after braces removed. Has not had a physical tic since. Very periodic vocal tics remain, but they are negligible. Sept 2010: Added xanax .25 mg 3X day to other psych meds of Luvox CR 100 mg and .25mg Risperdal after horrible start to highschool resulting in panic attacks. Remain on this psych med cocktail since. January 2011: 3-5 day flare up of symptoms with viral sickness. Came out of it rather abruptly. Feb 2011: another 3-5 day flare up with viral illness. Do 5 day steroid burst. March 2011: viral illness including fever. 2 MILD occassions of anxiety lasting 15-20 minutes or so. No further PANDAS symptom increase as result of illness We continue to see upward progress as he heals. He is now attending highschool full time. He is no longer napping 3 hours a day. He is socializing at school comfortably now. He is able to verbalize and problem solve anxiety most of the time. He read a novel for the first time in 3 years and understood it. He continues in CBT therapy, and is engaging in it. He is learning to ride horses once a week. He is getting good grades, and becoming more independent. He puts himself to bed and sometimes does his own laundry. He is learning to drive. He does not really remember how bad things were last year. He is healing. I allow myself every now and then to feel hopeful for his future, while trying to remain realistic that this is a remission, and more hurdles could be ahead. I am overwhelmed with thanks at each day he has where he can live his life like anyone else, not hostage to the misfire in his brain. He has some more growing to do, but don't we all....
  22. ERP can most definitely help with the medicine fear, and you can start doing it at home if you have the time and energy. I would think the first step would be to find out what she is most afraid of regarding the medicine. Is she afraid of vomitting? Is she afraid it's going to poison her/hurt her? Say it's the poisoning thing. One idea might be to start with her just sitting next to the medicine for a bit. Or if that's not hard, holding it in her hand. You would start with the least invasive thing and work on that repeatedly until it no longer brings on anxiety (gee mom - this is stupid, I'm not scared of sitting next to the box - this is boring). Then move to the next step. I'm imagining a liquid medicine. Can she put a drop on her hand? next step, can she lick one drop? These steps go on over days/weeks depending on level of the anxiety. You don't move on to the next step until the one you are working on seems boring - no longer causes anxiety. Another thing would be for her to witness you and other family members taking this medicine to challenge the OCD thought of poisoning - what is so special about her that this medicine would only poison her, not the rest of your family? ERP worked magic for my son when he was 7. For the big fears, it was a very slow process, but it DID have results . My son was deathly afraid of the refrigerator. We spent days just working on being in the kitchen, and taking one step closer to the fridge. It took weeks to get to the point of being able to touch the outside of it consistently, but eventually after doing this daily, he was able to move on to opening it up and eating things from inside it again. Perhaps it is something you can consider while she is awaiting other treatments.
  23. School - homework - uggh! We too have this struggle, though greatly improved this year since receiving some treatment. My son is typically EXHAUSTED when he gets home from school, like his brain has run a marathon. Sometimes he sleeps for several hours. Even when he doesn't, he needs serious veg time. Usually that's in front of the TV, sometimes playing outside. In general this first year of highschool, we have settled into homework being done after dinner, and agreed that it's a reasonable expectation that he have 1 hour of homework a night. He does have an IEP that gives him an "Academic Lab" class each day. Basically a study hall with a special ed teacher. This allows him to do 1.5 hours of "homework" while at school, while getting a credit for the class. His schedule basically only has 2 core classes at a time. We also have reduced homework accomodation. His Algebra teacher set it up so that if he assigns more than 20 problems on any given day, he only then has to do "evens". In World History when they pass out homework, he gets a special edition with only the truly necessary questions highlighted, and those are the ones he's responsible for. We also have a time extension accommodation, so he can take his time on longer assignments like essays,etc. Basically we're trying to take as much pressure off as possible while he grows into feeling more confident and less overwhelmed. He's starting to email his teachers for clarification on things when he's confused and they have been very responsive. For him, he is overwhelmed by workload. Though he only missed 3 months of school in 6th grade, I think he "missed" alot over the last few years when the PANDAS was at the forefront, even though he was physically present in school. It takes a lot of cognitive restructuring for him to look at an assignment and not feel overwhelmed. If it is smaller, he is able to be successful and reinforce over and over that he CAN do it - it isn't impossible and WONT take forever. Not that the OCD won't tell him otherwise - but he has lots of evidence to the contrary now to help him boss it back. He has chosen to eliminate all extracurricular activities except once a week on Fridays. Though sometimes bored and socially withdrawn, he needs this time to unwind, do nothing, sleep, etc and it helps him to realize he has seven free hours once he gets home from school, and only one of these is for homework. We still usually need to sit with him side by side to help with the homework unless he is feeling particularly confident. But he's growing in the right direction (and so am I)to try and find balance between his health and his desire to do well. This plan isn't going to get him into Harvard, but it might just allow him to graduate from highschool with his sanity in tact...
  24. We are patients of Dr T's and had IVIG through Coram in MI. THough he was not the Dr. who wrote the script, he was consulted and supported the IVIG. Coram was great to us here. A few things I learned along the way - make sure the doc orders IV hydration to go along with teh IVIG. Also, what Coram thought was slow drip (3 hours each day) was not slow enough. THe slower you go the more you minimize the side effects. The nurse was awesome, but we were her first PANDAS patient. She had taken the time to read up on it before working with us and had lots of questions and compassion. But she was not used to giving the high dose, and was very uncomfortable in proceeding the next day when the headache,vomitting and fever showed up. Luckily our doctor was available to override her supervisor who was telling her not to continue the second day. So my last tip would to be to make sure Dr T is accessible by phone if there are concerns/questions. All in all, Coram was a wonderful organization to work with (I even felt like I was friends with their billing department!) and I would use them again in a heart beat.
  25. We also have low IgE - 6. Can't remember the IgG4 number, but it is also low. I too could only find info on elevated IGE leading to allergies. Not much inforamtion seems to be out there in the way of low IgE.
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