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Posts posted by kos_mom

  1. Dear Croatian Mum,


    Perhaps you could clarify a couple of things. On what basis did the doctor decide your son have PANDAS? Did he have a history of tic/OCD exacerbation following strep or some other infection like myco plasma pneumonia? Was he tested for tick borne diseases like lyme, babesia, or bartonella? Some kids are not successful in IVIG because they had tick borne diseases that were not previously identified.


    It is not entirely clear to me from your email whether your son is still taking antibiotics. If he isn't, it is entirely possible he has acquired another infection--strep, mycoplasma pneumonia, Ebstein Barr or cock sackie to name a few--and is reacting to that. In that case, you need to get him tested for possible sources of infection and get him treated as soon as possible. Using ibuprofen in the meantime is a good suggestion or, if Croatia is a country where you can get antibiotics from the pharmacy without a prescription, put him back on the Augmentin until you can get to the doctor and get the test results back. If he is still on the Augmentin, he may need a higher dose or a different antibiotic like azithromycin.


    You say the doctor was visiting Croatia from Chicago. There is a well known PANDAS expert from there, Dr. K. You can find his full name under abbreviations in the sticky thread at the top of the forum or look him up on his website mentioned by Cobbiemommy. If it is that doctor, or a doctor working with Dr. K, you could try to email him with your problem and see what he would suggest. Dr. K in any case will take emails from parents, so you could email him about your son. Be concise in the email, but be as specific as you can about previous infections and previous antibiotics taken to address the tics/OCD (the psychiatric drugs history is not so important), as well as the date of the IVIG and what antibiotics (including how many mgs a day) he has taken since then and the date he stopped, if he has. Dr. K is very responsive to emails and you should get a response in the next day or two.


    Finally, since you have been willing to go to Italy in the past, you might try contacting this doctor for advice or a possible in-person consultation:


    Dr. Carmela Caputo

    S. Giuseppe Hospital, Department of Pediatrics

    via Boccaccio

    50053 Empoli (FI)

    phone: +39 347/6966569

    or: +39 571/706452 or +39 571/706455


    PANDAS Italia Associazione di volontariato



    Empoli is outside of Florence. I know nothing about this doctor, but she is listed as a PANDAS provider on this site:




    I hope this helps--good luck,


    Ko's Mom

  2. Dr. K does answer initial inquiring emails very promptly but he is clear on his site he only communicates with parents. Try sending him an email tonight listing tests you've done, medication you've taken and results and asking for recommendations for further testing and/or change in abx. If his email back is very responsive--great. Work that with your pediatrician. I am betting that even if he gives abx rcommendation, he will still say only IVIG will really solve your problem. In any case, if you write tonight, you will likely get a response one way or another by tomorrow or the next day. If the Dr. K route doesn't work, have your pediatrician contact Dr. T. If I went that route, in your place I might try drafting the email for the pediatrician--she may not use it but at least she'd have down in writing the main things to be addressed from your point of view.

  3. Just my two cents. I'd try to get the abx extended--my DD has never had a sinus infection that cleared up within a month, let alone 10 days. This would tide you over for the other step I'd take, consultation. I'd call today to get a phone consult with either Dr. T or Dr. K; I don't know about Dr. K, but it's fairly easy to get a timely consult with Dr. T, and he is very open to patients working with other doctors. (Not sure about D. K--I emailed him once saying DD had far off appt with Dr. L but I wanted some information in the meantime, and he wrote back saying he wouldn't offer opinions on someone who had another doctor.) One of these doctos could make some transition recommendation for medication while you'd await results of tests he'd recommend.


    Onset of tourettes at 15 I think is pushing the Tourette's boundaries a bit. Tics plus very significant anxiety at that age would make me suspicious of PANDAS/PANS. Not sure what tests your doctor ordered--were they just limited to strep or did they look at other things like myco p and lymes? Sinus infections would be another marker for possible PANDAS/PANS. The dysautonomia is interesting--as you point out this can come from a virus. Some of those viruses like EBV and cox sackie are known triggers for PANDAS/PANS--I am sure both Dr. K and Dr. T would suggest testing for these.


    I absolutely do not think it is off base to investigate the possibility that a virus triggred both dysautonomia and PANS. As a side note, my DD, 19, recently dx'ed PANDAS/PANS but with symptoms going back at least three years if not seven or so, has been told by her cardiologist that she has neurogenic orthostatic hypotension--she has fainting episodes and is incredibly heat intolerant. I can find very little on this but it looks like a form of dysautonomia that may be related to her PANDAS/PANS.

  4. DD, 19, was recently dx'ed as Pandas by both Dr. T and Dr. L. Mid-July she had ASO titers of 660, but I wasn't able to get her on abx until August 8 (dx didn't come until September). Sx include mild OCD and phobias, but major anxiety and panic attacks. A week after starting abx, I think we had huge herx, which caused complete meltdown ending in having to call ambulance and hospitalization in psych unit. She has now gone well over two weeks with no anxiety or panic and her worrisome agoraphobia that had been steadily growing over the past year is now gone. She is being scheduled for IVIG.


    My concern is with her boyfriend, who seems omnipresent. He has admitted to me a pattern of OCD as a child, as well as transient tics. The OCD never completely went away, and he started having anxiety a couple of years ago, which persists. He has also told me his OCD and anxiety got noticeably much worse in mid-August and he has lost a fair amount of weight since then. He sees a psychiatrist for the anxiety and has a prescription from him for lab work for Pandas, as well as thyroid (his mother has Graves). But he will not do a blood draw--has huge phobia against this.


    He has access to abx and could take same thing as DD--clindamycin 300 mg and see if it works to address the OCD. He has offered to do this and actually seems quite interested in conducting the experiment. He would probabaly report to his psychiatrist after the fact. How bad is this? DD and BF are together constantly, and I don't much care for him being around her with potential untreated strep if she is getting IVIG. His medical hx, including mother with Graves, looks very suspicious to me for Pandas. Also, I will note DD's psyhiatrist offered to put her on abx a couple of months ago even without the blood draw. DD thinks I have pandasmania.

  5. Since your pediatrician is open to trying things, you might consider a phone consult with Dr. K or Dr. T. You can usually get that fairly quickly, at least with Dr. T. They could put togther a protocol for your pediatrician to use. Also think very good idea to try NIMH--all treatment and travel would be covered by them.

  6. A hypochondriac is one who thinks minor aches and pains may be symptoms of a more serious medical illness. Someone who has a somataform disorder has physical symptoms that interfere with their daily functioning which have no discernible medical cause and which are not attributable to another psychiatric disorder. Thus, anorexia nervosa is not a somataform disrder because is already a psychiatric condition.


    The symptoms are real and often what is called "pseudoneurologic"--the person is not making them up or malingering, but they are said to orginate from the mind, not an organic cause. For example, it can be demonstrated through long term EEGs that some seizures are not epileptic or occuring from a glitch in brain electric circuitry; they are deemed to be psychogenic instead. (Interestingly, perhaps the largest group susceptible to psychogenic seizures are those who actually also have epilepsy.)


    Psychogenic or psychomatic disorders are terms often used along with somataform disorder or conversion disorder. We all know about these and sometimes experience them--a stress headache or heart burn, for example. Somataform disorders, however, require the symptoms to have been present for some time. A number of doctors thought the girls in LeRoy had a conversion disorder--in that case a mass conversion disorder where the psychogenic symtoms supposedly spread among the group of girls. (Dr. T said combination of Pandas and Lyme.) Ulcers were long thought to be psychogenic--that is, brought on by stress--until it was discovered most were actually caused by a bacteria. MS was long called "the faker's disease" until MRIs came along and showed demylineated sheathes in sufferers' brains.


    The somataform dx in Philamom's DD's file could be damaging because 1) most people will think it means her DD is making it up (even though somatization by definition means she is not faking), 2) even if people understand she is not faking, it is a psychiatric dx that will lead school officials to believe it needs to be treated through whatever their view of dealing with psych problems requires--counselling, tough love (ugh! but isn't what they seem to be doing now) and NOT medical care, and 3) if there is any leakage to her medical record it could set her DD up for years of having doctors dismiss any symptom she has as psychogenic and not pursue proper medical evaluation.

  7. Philamom.


    Not much new advice to offer here, but I am a bit outraged that a school psychologist dx'ed somatization disorder. A psychologist is not qualified to do this--read the medical literature. It is a disorder of exclusion and all medical options need to be excluded before it can be given. Further, somatimization disorder is pretty much an adult dx and mostly is made after someone is 30 or so. In children, they usually speak of conversion disorder--and your DD's symptoms are not at all typical of that disorder. The prognosis for somatization disorder is rather bleak--probably because most of the patients who get it actually have a medical disorder that has not been properly dx'ed.


    I would try to get this dx out of her records if it is in there--it could haunt her later. You have lots of medical backup that what is ailing your DD is indeed something else. Many school districts have a parent ombudsperson that you can complain to--getting the faulty dx out of her records would not be a big ask, even if you are facing lots of resistance on the homebound program. I used my District's ombudsperson when the school implacably would not let my DD switch a class that was giving her great anxiety to another class. Once I got this person involved, I could not believe how quickly the administrators moved--it was a much bigger gun than I would have thought.


    If you can possibly swing it, taking your DD out of school and taking her to USF looks like a great option. Even better, you seem to have a competent therapist already in place at home to continue treatment. Beyond that, I agree with Tpotter's suggestion of mediation.


    Ko's Mom

  8. Think it's blood--possible she has small gastric tear owing to vomiting. It just happened the once a week ago so hope it's ok to have let it slide. Honestly, she has so many things going on all the time we'd be at doctors 24/7 if I paid full attention to all of it. Maybe should see if I can get her into GI next week--she already has a blood draw (for hereditary and mitochondrial disease check) and another doctor's appt scheduled next week (to check on out of whack hormones--yet another issue!), plus a visit to psychiatrist.

  9. I understand the best way to test excess copper is through a 24 hour urine test. Definitely not convenient! Excesss copper can be a sign of Wilson's disease, which can have neurological and neuropsychiatric symptoms. Dr. L just had my DD, 19, do this test as part of a very wide net casting to determine what's going on with her. There are specific drugs used for chelation (which can be a difficult process) and zinc is used for maintenance. You can read about them by looking up Wilson's.

  10. Peglem,


    Thanks--I managed to piece specific antibody deficiency as possible dx when the board was offline. Sounds like the conventional response is to try a pneumonvax challenge, which can be problematic for PANDAS kids. Another hornet's nest!


    DD, 19, has barely left the house for a year and has managed to come down with strep (probably twice), a sinus infection, pneumonia that required six days in hospital, a 103 fever (possibly related to strep but doctor in ER refused to culture), and last week a fever of 100.5 with black vomit. Had no idea what to do with the latter so I let it slide.


    Am becoming concerned with all the recurrent vomiting but am hesitant to go to gastrointerologist (yet another doctor!) until I get better clarity from Dr. L on latest round of tests. Nothing to do but wait I guess.


    Ko's Mom

  11. Dr. T had DD, 19, do strep pneumonia IgG antibody panel (14 serotypes). Does anyone have any idea of what insights one can gather from the results? DD is very low on all 14--she's had pneumonia twice, but unclear if they were strep pneumonia. She's never received a pneumonia vaccine that I know of. I found a table on the Mayo clinic website that published levels for healthy, nonimmunized adults in Rochester--these are sky high compared to DD's results. (http://www.mayomedicallaboratories.com/test-catalog/print/83640)


    Now I am wondering if DD's low results here (and also cox sackie--no antibody detected and she's definitely had that)are partly behind Dr. L's decision to rerun her immunoglobulin panel and IgG subclasses again. Everything on these was within normal range except IgE; IgG subclass 3 was at the bottom of normal range.


    Thanks for any assitance!

  12. 1TiredMama.

    Sometimes I think it was easier way back when when my DS had very bad exacerbatiions and no one could explain it and so there was nothing to do about it. Now we know what is wrong and know how to treat it but we can't get the treatment. We were supposed to have IVIG the first week of September and are still waiting on the insurancd company...

    Ko's Mom

  13. Re: Dr. L and immunodeficiency labs--not our experience. I had PCP run these through their lab. Dr. L founds it amazing that DD's labs came back normal on everything though lowish in one IgG subclass given DD's continuing cycle of sinus, strep, and myco p with a six day hospital stay for necortizing pneumonia thrown into the mix. (DD was also quite out of range high on IgE.) In any case, Dr. L is having them all re-run through Quest.

  14. I guess I would be skeptical that Vitamin D could have that effect so fast. What I have noticed with my DD, 19, is that when she has had complete meltdowns she retires to her room and usually comes down a couple of hours later acting as though nothing had happened. I think she actually doesn't remember much if anything of the episodes. DD also has epilepsy and I liken this "forgettery" to what happens with seizures. It is very commone in epileptics that they do not remember 15 to 30 minutes before the seizure to a half hour or so after.

  15. Lauren,


    Long term residential places are typically for kids with psychiatric and/or behavioral problems that need intensive treatment that is difficult to achieve on an outpatient basis. I was definitely urged by DD's psychiatrist and therapist to go this route. Though her brother had PANDAS it did not occur to me until this year she might have it too--he had a very classic child presentation, while hers was a more atypical adolescent presentation. A big reason I looked into this route but didn't take is that DD didn't want to go. Under that circumstance, the only way to get them there is to hire people to take them away in the middle of the night, and I refused to put DD through something so traumatic. That is in addition to medical issues that I did not think any of the residential places I looked at could even begin to address. In most of these places, you are lucky if a doctor comes by once a week.


    Iowadawn has found a place that deals with neuropsychiatric illnesses, which of course PANDAS is. While PANDAS is treatable, if it goes undx'ed and untreated for a long time and becomes chronic, many issues can arise that when mixed in with adolscents can become quite explosive.


    Ko's Mom

  16. Honestly! Two new cases months after the first outbreak constitute a mass conversion disorder? When we saw Dr. T at end of August and I explained to him we kept getting somataform disorder (aka conversion disorder) for DD's symptoms, he said the longer he practiced the less he believed in the somataform dx. Somataform and conversion disorders are supposed to be dxes of exclusion--these means all other possibilities must be investigated and excluded before making this psychiatric dx. Real life is they do one test, it comes in negative, and so the symptoms must be psychological. This really shows a lack of medical intellectual curiousity and integrity.


    Dr. T also said DD reminded him of the girls in Le Roy...

  17. Having one autoimmune condition sets you up for another. So with the autoimmune neutropenia you need to be on the alert in any case--if it is not PANDAS today it could be something else down the road. But the regression off abx does sound suspicious for PANDAS. My DS had language processing problems--I though perhaps too many ear infections but I wouldn't be surprised if PANDAS played a role. All too long ago to really say.


    You said your DD is on Tenex. Everyone reacts differently to meds, but this was not a good one for DS. He was on Prozac and had a lot of side effects (all of which the psychiatrist said was part of his "syndrome" never identified as PANDAS.) I wanted him off it so we weaned him down and put him on Tenex--he was 11 and had major problems with language when he took--it was like everything slowed down so much for him it was hard to express himself. So I'd take a look at that. I'd also give the infectious diseases guy a shot--but if he really doesn't know PANDAS as well as people on this board or if he is unwilling to experiment with longer term abx, you should feel free to disagree and see if there is another doctor that is more open. The sinus problems give you an in to an ENT, a number of them are quite familiar with PANDAS.

  18. Dr. L also thinks some immune deficiency must be going on--but on DD's tests she was lowish (but not out of range) on only one IGG subclass. Her IgE was well out of bounds, but not sure what that counts for. In any case, Dr. L is convinced enough she is re-running all the tests. I almost laughed at keeping track of missed school or work. DD's been home for over a year, mostly in her room and more specifically her bed. She's being tested for many things including hereditary and mitochondrial disease--brain scan apparently indicative of possible metabolic disorder. If we come up empty on this round of tests, we will definitely go full bore into investigating lyme and co-infections. As for mold is it relevant is very allergic to two types--alternaria and aspergillus. I think the latter will be tested for on her spinal tap.


    As for United, this week it knocked Kraft Foods off the Dow Jones Index, an indication of its weight in the economy. It is the only health care company on the index. Somehow this seems related to the thought that it should be covering IVIG for kids who need it. I really like 1tiredmama's letter. Do we have anyone whose kid could be the poster child for recovery owing to IVIG paid for by United? I really don't understand how they go from proven to unproven with no tests or studies having been released.

  19. Amy's probably right. But I have read elsewhere on these boards of kids getting strep even while on abx. It's easy enough to run down to an urgent care place and have a swab taken. I did that recently when my DD complained of a sore throat and the culture grew yeast! I have been religious with probiotics while she's been on anti-strep abx, but wasn't told to do that with abx she took earlier for pneumonia--perhaps the yeast was from that. Have probably been undertreating with garlic tablets.

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