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Everything posted by ibcdbwc

  1. Very helpful! Thank you very much for putting into words my exact thoughts. I was not able to articulate the issues at hand and you were! Appreciate your time and all you do to support parents on this board! I think ACT is a very important concept and I will talk to our psych soon about these issues.
  2. Hi All, I have a 16 year old who had done very well for over a year until October of this year. He had a major flare (despite prophylaxis). Came out after 2 weeks and after 1 week re -entered another flare. That lasted 2 more long weeks. He has again been out a week and we look to be headed back in soon. He's getting more and more nervous as he fears the flare. I should add the flare is awful. The weeks where he is "out of the flare" were still full of more mild anxiety - but he could function and he could think. Helooks sick physically and mentally. I need help with ERP suggestions because his primary OCD right now is scanning his body to "check" for a myriad of symptoms. He's so tuned in to how he feels before a flare that he's constantly checking and seeking reassurance. I think he might actually throw himself into these flares for lack of a better term,. He has enough physical symptoms (bloating, constipation, flushing, ear popping, joint popping, neck pain, fatigue, hair thinning...) and it all reminds him of the flare and boom - anxiety up-- which then equals another flare. He has a psych who has been doing some CBT. We have a functional medicine doctor looking into all his gut issues. We have a PANDAS specialist who is recommending IVIG. We will address this later this month. I just feel like we are in a loop and I don't know how to get out!
  3. Okay. I am also hooked. What happens next? Of course we are all hoping for some grand, magical happy ending.
  4. FWIW my DS15 does get headaches with flares. But he also gets sinus infections each time as well. Hard to tell what is sinus related, what is migraine and what is pure inflammation. We have thought migraine because he has sort of an aura prior to the onset of a flare - he also gets more light sensitive such that sunlight hurts and "screens" cause discomfort (and of course he normally he loves his screens). Back in our early days, he did not complain of headache but he has always been sensitive to things like rides at a fair or a trampoline. Flare or no flare, these things make his head hurt. The headaches with flares started after puberty.
  5. There is a test called Gene sight that you might look into. I honestly don't know much about it as I haven't done the research. But i was willing to buy into the idea to eliminate some of the trial and error mess. We were prescribed zoloft at age 8. It was horrible. Sent him into a frenzy and we took him off after a week. This was pre-pandas diagnosis of course and we didn't start the dose "obscenely low." The pill also has dye - which we later found out causes hyperactivity in my son. So it could have been other things that caused his negative reaction. Fast forward to age 12 when we tried Prozac. It had almost an immediate calming effect which was wonderful. However, he became oppositional and somewhat suicidal within a few weeks. We were at very low doses -- but he also had just had a fever and some terrible stomach virus at the same time. Again - may have been other things that caused the negative reaction. But... We recently did GeneSight which confirmed that we should stay away from several of the SSRI meds due to a gene that has trouble with serotonin transport. However a few of the newer SSRIs and some of the SRNI's should be okay for him. We have not tried that class again yet, but we are on low dose lamictal. I am not sure it is helping but it is also not hurting. The Gene Sight test can at least help you narrow down the choices. I am not against psych meds at all IF you can find the right one to offer relief. I think they've helped a great number of people.
  6. Thank you for all of your helpful comments! I appreciate your advice. Sirens - what do you mean by full set? His test did include coin factions.
  7. Thanks so much! I agree. It's probably best to wait for the Igenex. Yes he's been gluten free for several years (though I'm betting he gets a lot of cross contamination at school).
  8. We were doing well for a long stretch but have started to get monthly sinus infections and flares again. IgE is 600 now. Subclass IgG3 is 8 (quite low). Igenex pending. Currently on Ceftin and responsive for now but I fear a breakthrough flare. Flares are classic PANS flares (OCD through the roof) with severe slowing of cognitive processing skills. Gut health also an issue with positive celiac antibodies and major histamine issues, constipation at cetera. MTHFR 1298 homozygous.... (we are also in therapy) We see Dr. L who wants to do tonsillectomy (despite negative strep titers/tests - they were positive in younger years) followed by HD-IVIG. Looking for a great functional and/or second opinion doc first? Who do you recommend? Dr. O- hara? We will travel anywhere.
  9. Thanks for your replies. The memory issue persists despite decreasing more mild levels anxiety - however he's certainly still anxious and filled with extraneous thoughts during this time. So it could very well still be that the anxiety is taking the place of a working brain. But its more long standing. It does seem like a two week seizure with a aura - event - post ictal type pattern. I do recall in 7th grade when he was in a particularly bad place that i asked him to draw a clock like the Brain of Fire woman. My son could draw a clock but he drew bicycle spokes all over the face and did not draw any hands. I later learned that this is seen in dementia. So yes, there is definitely an inflammatory process at play. At this point its hard to tweeze apart what comes first. His anxiety is largely due to feeling like he's indeed losing his mind (again). Which brings on panic. His compulsions spiral out of control. His view is opened up and he has floods of memories of past flares. His perception is both MORE finely tuned to the world around him yet at the same time negative ("I cant make eye contact. I don't have social skills...") Typically he doesn't really care. I have yet to find a therapist that can assist us in dealing with such a tangled mess. I am uncertain about which route to take next. I am not certain that IVIG will do much more than make this traumatic experience worse. If we do this, we will likely need to drop out of school which we will probably have to do anyway given the increasing severity. Thanks for your ears!
  10. We've been doing okay for a while now such that DS15 getting good grades in his classes. Did well spring of freshman year. Unfortunately we entered a huge flare this past weekend. Panic, anxiety, OCD - alot of which stems now from not wanting to enter into another flare (PTSD). It's scary and he freaks out when he knows he's going into one. Starts with "thoughts are back." Progresses to 3-4 days of insomnia issues which then progress to days of better sleep but continued more mild OCD with steep cognitive decline. Our biggest problem is and has always been his memory deficit after the initial insult. It lasts a good solid 7 days. We are now on lamictal low dose but that has not helped this issue. We do zinc and anti-inflammatories - doesn't help too much. I tried taurine as suggested by Nancy on this board but that didn't seem to agree. Last week he got perfect scores on honors chem and pre-cal tests and wrote the best essay in english class as stated by his teacher. This week - he can't do double digit multiplication. I've spent the last several hours going over chemistry - simple concepts - atomic number - protons and neutrons--. He cannot hold on to any information for more than 5 minutes. I know he will "get his brain back," but I do not understand how he is supposed to go to high school when he misses his brain for two weeks at a time. I can't coach him through. It's a deficit. Dr. L is recommending a month of antibiotics and then IVIG despite no positive strep. This child has never had an MRI an EEG or any other work up. It's all psych and PANDAS specialist driven. I guess I just need some words of encouragement AGAIN. To be honest - it seems like a two week seizure every time. Is that what everyone else sees?
  11. I don't know how to help you or your son. But wanted to say my thoughts are with you as you navigate this horrendous journey. Surely there is a lesson for us all somewhere on this path. I'm still looking and learning after all these years. I just cant imagine how difficult it must be for a teenager (my son is 15) to face these misunderstood debilitating symptoms. As if being a teenager were not difficult enough. Good luck to your son tomorrow. That first step is indeed a giant leap!
  12. Hi Everyone, Just a random thought today. Has anyone tested NEGATIVE for Lyme through Igenex? That's my skepticism re: big money tests. BUT I am definitely a Lyme believer and realize that testing is just one part of the puzzle. Many cases must be diagnosed clinically as well. Just curious regarding reliability of Igenex.
  13. Thats such fantastic news! Are your sons on any other supportive supplements? antibiotics or probiotics? still using digestive enzymes?
  14. It occurred to me that you may also want to connect with practitioners in Chapel Hill as I'm thinking of one team - a wife psychologist and husband functional medicine doctor who specializes in finding root causes of chronic illness. Again, I have not seem them personally but have heard a few folks have found help looking beyond surface level PANDAS and into more root causes - methylation, gut health, micronutrient... I can only make the referral based on the reference given to me my one other person. But their website did look promising. PM me if you'd like that information as well.
  15. Congratulations for attending Duke! That is an amazing accomplishment! Duke has an established Autoimmune Brain Disease clinic headed by Dr. Gallentine! http://www.dukechildrens.org/services/autoimmune_brain_disease We have not seen them personally but there are folks in the area that have benefited greatly. As I understand it, they don't call it "PANS" nor do they treat lyme but they are most definitely friendly with the underlying theory that autoimmune reactions cause mental dysfunction. There is also a Durham foundation set up by AE families that seeks to educate and support. I would contact them. One such family, very involved, has a pediatric psychiatrist mom, researcher dad and an affected 20 year old son (battling this for years). https://aealliance.org/living-with-ae/ There is a facebook group called "Carolina PANDAS Parents Support Group," that might be helpful. Some of whom have been treated at Duke. And now welcome to the East Coast as well! You will be not far from Georgetown where they seem to be doing great research. There is a conference coming up in October that will be full of practitioners from NIMH as well as parents and families. This could be a great networking opportunity. http://www.medstarhealth.org/education/continuing-medical-education/medstar-washington-hospital-center/upcoming-cme-meetings/pandaspans-2016-an-update-on-current-management-and-new-treatment-strategies/#q={} PM if you need more information!
  16. This topic is highly encouraging but also baffling in a way to me personally. My son has done years of CBT and ERP and while the strategies work very, very well for little blips during our flare free times -- a big flare still sends him spinning out of control for at least an initial two weeks. Then we have the PTSD aftermath. He will begin to recognize patterns or symptoms that preceded a big flare -- and then obsess over whether or not a flare will happen again which opens up an entirely new set of problems. Granted my son is older - 15. But what is it about the Rogers program that allows it to be head and shoulders about all the rest? Do they ever consult with more local practitioners to fill in the gaps of treatment? Is it the inpatient/intensive piece that makes it much more effective?
  17. Thank you Nancy. How long has your son been on lamictal and does he take it continuously?
  18. I'll spare our long history except that DS15 had what we thought was classic PANDAS morphing to PANS. Have had some good stretches of "normal," responses to antibiotics, responses to diet changes (a probable celiac diagnosis), responses to some Methylation... But all in all we still flare. As a teenager he seems to flare sometimes with infection but more now with disruption to rhythm - i.e. camp, exciting weeks, vacation -- where sleep and diet is altered. Pretty much no matter what testing we do or what intervention we add - he still flares. There is a pattern. It's mood shifting. He has hyper moments and depressed ones - interspersed with anxiety OCD and insomnia. I dont want to sentence him to a lifelong diagnosis of bipolar or lifelong medications - but hes suffering. I think we are going to take the plunge.
  19. My son dropped off his growth curve around age 10. It wasnt dramatic. His weight curve dropped from 75th to 25th and his height dropped from 80th to 45th. The doctors told me it was not that unusual around the time of puberty and to not be concerned. At age 12 he continued to stay in the lower percentiles and he had delayed tooth eruption. Prior to this he was one of the early ones to get teeth -- yet now he was late to lose them. Age 12 was also one of the worst years for his PANDAS - it was manageable with antibiotics prior to this. Age 12 was awful. Eventually, he was screened for celiac and his tissue transglutaminase was very elevated. This is a marker specific to celiac in about 95 percent of cases. It could have been a false positive or a problem with another autoimmune condition -- but it was enough to go gluten (and dairy) free. Within 6 months, he lost all the teeth he was supposed to lose and launched into his major growth spurt - grew 5 inches that year and is still growing. His PANDAS issues resolved but sadly returned a year later. He still suffers as a result of gluten/dairy/soy contamination/infection (strep) and he's allergic to a host of other things now. We continue to work on gut issues and methylation (some of his supplements we discovered were doing more harm than good). We are in a better place as we get older -- but not healed by any means.
  20. I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  21. Would be interested to hear more. Keep us posted. I am 100 percent sure that my sons gut issues are a primary player. And we are both rather sick of having to avoid pretty much everything these days. Gluten, Dairy, Soy, Food Dye (not to mention keeping phenols, salicylates, oxalates, and sulpha balanced and in moderation - haha!)...
  22. Am sorry for all your struggles and for your family's struggles too. And yes this process can get very expensive and frustrating. Most of the time, people start the PANDAS/PANS journey believing and hoping that antibiotics are the quick answer to all the troubles. And indeed they can be lifesaving for so many people. The problem of course is that while antibiotics treat the infection, it doesnt treat the immune system long term. One must keep digging to find out why the immune system is so stressed. I do think if you can come up with the funds, then testing for lyme, bartonella, babsia et cetera would be worthwhile. So many people on this forum have been treating strep for years-- then they finally find out that lyme was the initial trigger. If lyme is negative, I think you have another possibility worth looking into and that is the mold issue. Certain people are genetically more susceptible to mold than others. And it can wreak havoc on the immune system. You might find Dr. Shoemakers book very helpful in this regard. He has tests to look for mold and treatments to follow. This genetic susceptibility - interestingly can be linked with Celiac as well. Diet can affect your gut which is the holy grail for the immune system. So that is your third level to look at. Gluten free is wildly popular right now-- simply because it has been shown to cause inflammation in the gut. And if your gut is a mess, than so is your immune system... leading to a cascade of PANS. Am sure your practitioner can help you look into these areas as well. Please do keep us posted. In the meantime, am so glad that you may have found some relief in the CBD oil. Take care!
  23. I'm sorry you didnt get any responses. This board is not as active as it once was. And many on here are looking for answers as we are still on the journey. Perhaps no answer is the answer? There is no right answer. Every situation is unique. I can say for me, my son was home bound for a while and I was "forced" to stay home with him. We had no other option. No other parent, and no grandparent. Slowly but surely we got him back into school. But I remain on call because you just never know. I do hope you are able to attend grad school. But as for how? I have no idea. There is no way I could have done this during my sons worst time. Even today I have trouble focusing on anything other than making sure he is recovering. I suffer from a sort of PTSD in this regard. So if you can find a way-- I do hope you will succeed because ultimately taking care of yourself is indeed the best way to help your son. How old is your son? With treatment for PANS, he should be able to attend school again (if school age)?
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