anonymous0121
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Posts posted by anonymous0121
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I live in northern california but i think I have exhausted all the california doctors, my son is 16 and severe off the cliff decline for past 3 years, he is catatonic, psychotic, ocd, ticd, anxiety, fears, on and on, and the rages dangerous. Everyone has given up on him and I am desperate for help... pm me please any recommendations.
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Hi, your child sounds exactly like my 16 year old son, I dont know how to PM you, could you PM me if you know how, would love to hear more about your experience with stanford and if you mind sharing what you have tried so far... my son is in very severe condition and we cant find any help for him
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help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?
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Hi rowing mom, I sent you a private reply...hope you can respond. Have been doingmtonmof detox, I put DE with bentonite clay one night, then zeolite another, then charcoal another etc. wish I could do more than once a day but so hard with all the other stuff. Jap knotweed low dose has def calmed down the violence and psychosis some, just at a big drop three times a day in pomogranite. Julie wants to keep titrating up in it, so anxious to get rid of the myco and Bart but she wants to get brain and CNS inflammation down, I agree. Has given me a half dozen herbs to calm nervous system or seizures and resultant rages, Catonia, but nothing for the god aweful muscle movements, complex tics, severe jerking all over just had husband bring home another virus and he is a wreck again all symptoms really bad, she told me to start hyttonnia for virul, but slow. .
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My son has had nonstop painful debilitating muscle contractions in limbs head etc since husband brought home illness 11 weeks ago, he gets bad nervous system side effects from antivirusl. He is screaming in pain and has violent contortions of head, neck limbs. Can't sleep either is awake until like 3am. He is begging to be taken out of his body. Doctors have been no help. Any ideas?
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My son is 15, 2 year flair and nothing working. He has bartonella, Lyme and high IgG to almost everything ESP viruses. The psychiatric symptoms and rage and OCD and violence and ESP autonomic crisis episodes have been unbearable. Llmd keeps not wanting to treat Lyme, and another only does antibiotics which make him homocidal violent and we can't live through it. His muscles are contracting violently non stop, screaming in pain and can't find anyone that seems to want to spend more than 5 min figuring it out. Has anyone treated Bart and Lyme and myco etc with Buhner protocol, please let me know what helped...
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She wouldn't treat my son..
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What dosages of steroids and what kind have you found helpful. Seems like a good dose to bring down inflammation well and chill the immune response but not suppress too much would help. Two year scary violent, OCD, tics, fears flair not responding to anything, then I recently tried 800 mg ibuprophan and violence gone within 10 hours, amazing. But feathering on edge, every time we have tried to kill any pathogens he would just get more scary violent. Then my husband brought home cold virus and my son went homacidal, biting himself and us, self abuse bad etc. can't tolerate phenol herbs last few years, so thinking time to try steroids but last time we did 21 day taper starting at 20 mg he was so shaking and jittery feeling from that high dose then he caught a bad cold for six weeks, but that was first time he got cold symptoms in years, 2007 had a virus of some sort, got meningitis and hasn't had fever or cold symptoms since. It might have been myco in 2007 said Stanford immun, his igg is still very high.
So what dosage and type of steroid and for how long has worked well.
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Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.
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Dr klinghart s has written a paper on how it helps Lyme, there is a clinic that uses it for Lyme patients in Germany and a small clinic here in northern Cali that just started treating adults with Lyme, yes it is actually approved for babesia treatment. Where are you getting it and who ordered it, we have been trying to find it for my son who is suffering badly...
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Has anyone found a doctor to order plasmapheresis Nd location to provide it in California or west coast, my neurologist thinks it might be next step but hasn't worked very hard to find a doc to order and facility to do it
Deborah
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I would love a copy of the article too, my son continues to deteriorate, pans clinic did autoimmune testing, all came back normal, but he has all symptoms and been diag for years, but no treatments are helping...could you share what treatments are helping your daughter?
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Thanks that was a great video to watch
That is the doc we are seeing Friday... We have treated on and off Lyme and coinfections since 2005... Same with parasites, not getting anywhere but worse. Since 2007 we both had a bad virus and since it has been downhill and no fevers or regular responses to virus, flu, cold. I want to rule out autoimmune so hoping Stanford will help, none of the Lyme or integrative docs or pandas pans docs I have consulted with have done this. The fact that the two times we did steroid burst we got sick with real cold symptoms but haven't any other time. Makes me wonder about autoimmune and why we can't kick the parasites, yeast, Lyme etc....
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maryyaw, antibiotics make his rages worse, mess up his gut and neurotransmitters more and fungal overgrowth and hard on adrenals/liver, make matters worse for him. we have done pred taper two times and both times he got so sick with a virus it lasted 6 weeks, he has common variable immune disorder and I really think autoimmune something, hoping Stanford will test for all autoimmune whatever...
omega 3, vit D, a etc make him or agitated, I did a lot of research and I think they raise dopamine, he has high dopamine sensitivity and docs say high crazy catecholamine surges.
ibuprophen and benedryl for so many years where our go to for flairs but do not help anymore, benedryl actually makes the rages more violent too. it is just so scarry. we need a miracle.
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hi all seasoned parents, we finally have an apt with Stanford PANS clinic after 8 month wait next week. Wondering if anyone that has gone there can share good or bad stories with me. My son has been in severe flair for almost two years now. The violent episodes happen almost hourly on the dot, tics severe, OCD, anxiety, panic attacks etc.... I have been to almost every westcoast and eastcoast doc out there in the last 10 years. some treatments help short tem but always falls back. we have lyme too and he has been through multitudes of lyme and coinfection treatments too. Nothing is helping, he continues to spiral downhill and we just cant live like this another day.
wondering how long the apt is at Stanford, what to expect, trying to not get my hopes up but praying they will atleast investigate autoimmune piece since no docs have done much in that area. he did IVIG last nov, did one LD, 2 HD and each time he got more psychotic and tics insane, was horrible. no one can tell me why it made him so much worse..
antifungal treatments use to help but nothing is helping now, he has white tongue and roof of mouth and seems to be resistant to everything, anyone have any big antifungal treatments that have helped?
so have tried to call Stanford for weeks to get them the huge amnt of paperwork they wanted us to fill out, and also find out how long the apt is etc, but not getting a return call. if anyone wants to share their experience with me I would so much appreciate it...
deborah
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hi all, my son just got his 3rd HD IVIG and he has gotten worse and worse over the past three months, it is just unbearable, tics have become so severe and non stop, rages more violent and OCD/fears worse.... was hoping the IVIG was going to turn around the PANS and get his immune system working right, he has CVID and low igM. He has chronic lyme and bart and just found out roundworm, blastocycstis (protozoa) and major yeast going on and chronic chlostridia and reoccurring other infections in the gut along with I think major yeast overgrowth and virus's.... been treating all these for so many years I have lost track
..... any recommendations, I cant stop crying I am so heartbroken for him. psych meds have just made things worse too. I don't know whether to continue with the IVIG or not.deborah
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On 1/30/2014 at 7:34 AM, powpow said:
Does/has your child take(n) CellCept? YES
If Yes, dose: currently up to (max dose for her) 1500mg twice a day
Current Age of Child: 15
Guesstimate of how long they've suffered: August 2008
Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative
Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms
Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies)
Has the CellCept made a difference? Yes. Yes. Yes.
If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms.
Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved.
Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework!
Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.
hi, I was reading your post about cellcept, does your child just have strep or other chronic infections? my son has done 3 HD IVIG's and is getting much worse, severe tics/muscle spasms/jerking/barking noises, rages non stop and severe hyperkinetic activity and is miserable. steroids made him worse too, but I know he has autoimmune issues along with immune disorder low IGG/IgA/IgM etc... where did you get the PEX? we live in California and I cant find anyone that seems to help
would love to hear more on your experiences, my son has been homebound and miserable bad for last year, but also last three years the worst, he is 13.
thank you
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my 13 year old son with ASD/lyme/PANS/tourettes/tics/severe severe rages is getting worse with IVIG also. we just finished third HD IVIG and I have to say the last three months have been the worst for him, it is heartbreaking and we don't know what to do either. He is absolutely miserable in pain, wondering if it is causing a immune suppression and making the chronic infections make his dysautonomia worse , was hoping it would turn around the autoimmune issue (may have cause he actually got cold symptoms a few weeks ago when my husband brought home a cold virus, he hasn't had fever or cold symptoms since 2007)...
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I know we are talking about treating the infections on this thread, but what led me to
pay cash for 2 high dose IVIG's, administered 6 weeks apart,
was the very real component of 'PANS'
that was the
'Exorcist Rage Episodes'
Before our IVIG's,
it was this issue that scared me senseless.
If I was home alone when these rage episodes occurred, my dd was out of her body and mind,
and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP.
At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic.
I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called.
After this happened twice, I refused to leave the house with her without another adult.
Shortly after, we did HD-IVIG.
I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results)
I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed'
wore off when the IVIG wore off (6 weeks later)
BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.
wow, your describing my 13 year old son. these last three years have been some dark years, with the last 10 months so scarry I am afraid to be alone with my son. the rages happen every three hours now, sometimes they are so long they just run into each other with continuous exhorcist rages attacking me with kill in his eyes, so out of control it scares him to death also. he has punched me in the head, kicked me in the chest beat me so hard I am covered in bruises, not to mention the beating himself so bad it is scarry. the episodes come on with him going OCD too, then he has a huge panic and tells me a rage is coming, he says his legs hurt, stomach nauseous and he turns beet red all over with overheating and freezing cold hands and feet, this is also described in a book I got called help for the violently aggressive child, where the author calls it beta and alpha rage, adrenergic crisis, adrenaline overreactivity. we are about to try some alpha blockers while we are waiting for our HD IVIG, would love to hear more about your experience with the IVIG and the rages and other symptoms and what dose you used.... I am scared to death this isn't going to help and then what... we have driven to emergency room so many times I lost count but I chickened out and drove home.
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Yes, she has tried steroids. I didn't see her responding any better to those than to her abx (Augmentin). Abx is the only thing that keeps the severe depression and extreme OCD away. (She had an exacerbation the summer of 2012 - kept testing positive for strep but her symptoms were more like mono...) She always has intrusive thoughts, but without the abx she would sometimes fall to the floor and scream and beg me to make the "thoughts" go away. On abx she is able to read and enjoy life somewhat - but she says the OCD thoughts are always there. She still isn't able to function normally - but much better with the abx. Her gut is in bad shape with no good gut bacteria - so a few weeks ago I tried to wean her off the abx - but within a few days she started talking about wanting to die again. So she's back on abx - and of course we do probiotics, inulin fiber, and FOS, and treat the "bad bugs" (2 citrobacter varieties) in the gut with Candacid Forte, Uva Ursi and Tanalbit. We'll retest the gut again in a few weeks to see what is going on there. Can't help wonder if the gut is what started this whole mess. She had terrible colic as an infant, and tummy troubles thoughout preschool.
my son has citrobacter 4+ on great plains and nothing is getting rid of it and I am wondering if it is responsible for this 10 month flair that has us in the darkest days ever, the tics, ocd and severe violent rages non stop are unbearable and I don't know what to do else, what have you found to help, we did colloidal silver and it seemed to get rid of the strep, staph and some others but not the citro...
deborah
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anyone know of any research on IVIG dosages for PANS/autoimmune?
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Has anyones child experienced severe adrenaline overload/surges. My son is jacked on adrenaline 24x7 with severe surges about every three hours, he turns beet red, heart goes crazy/pulse super fast, blood pressure up, headache, sweating hands/feet and it can spike into panic attack and rage and he just cries miserably. Trying to find a doctor to rule out pheocromacytoma/adrenal tumor or I read this can happen with infections and also he is on prednisolone for adrenal insuff and it can turn off the adrenals and cause constant adrenaline surges, anyone know of a good endo or alt doctor in California... it is so severe that he literally cant stop moving and runs like a lunatic from one end of the house to the other day and night. cant sleep/function at all.
deborah
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Hi all, my son finally got IVIG (40 G so just over 800 mg/kg) a few weeks ago and his tics are way worse. I know it has been a rough full moon too so that might be it but it is so aweful for him, he has had explosive barking/girgling noises for 10 months now and they get worse with the moon but now it is pretty much non stop... immunologist approve to go up to 45 G but he doesn't have knowledge of the HD or PANS. Anyone know where I can find the presentation materials from the last conference and some research. The tics are stressing him so bad his rages are worse too, he is miserable.
anyone have suggestions on what infections to test and treat for for these tics?
deborah
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Hi,
I just happened to look up Nystatin becasue we are supposed to start this after the diflucan and it says DERIVED from streptomyces?
SHould I be concerned that this will cause PANDAS flare as I found the streptococcus thermophilus did in the VSL3?
Thanks.
did you ever find out if this would happen or did? I was warned about the same thing from our PANDAS doc...
..... any recommendations, I cant stop crying I am so heartbroken for him. psych meds have just made things worse too. I don't know whether to continue with the IVIG or not.
ECT for AE/PANS/catatonia/ocd/violence
in PANS / PANDAS (Lyme included)
Posted
has anyone done ECT?