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Posts posted by kos_mom

  1. My DS is ADD inattentive type. But in one exacerbation he became extremely hyperactive for one or two particularly hellish months. He was already on adderall for the inattention, which didn't help the hyperactivity, and a switch to Ritalin extended release was disastrous. He wouldn't eat all day and became absolutely ravenous around ten at night, following extreme evening hyperactivity. Thank goodness that went away--its was quite enough dealing with all the OCD and tics. He still takes adderall with no apparent ill effects.

  2. We use Florastor for practical reasons--it can be given with abx, which is convenient when the abx have to be given three times a day and you have to chase after them to take that mid-day dose. Can't imagine getting in medication five times a day.


    DD has persistent nausea and vomiting--sorry to say Florastor hasn't helped a bit with that.

  3. Nancy,

    Daughter was in the hospital with aspetic meningitis among other things and I asked about motrin instead of tylenol for pain. They said motrin tends to lower blood pressure and that is contraindicated for meningitis. Had never heard that before. When we did IVIG at Georgetown they said do only tylenol. Am wondering if the blood pressure effect is a reason for not relying on motrin.

    Lo's Mom

  4. Definitely get on Dr. M's cancellation list. You can call weekly to check on whether there have been any cancellations to remind them you are there. I'd still recommend at least a phone consult with Dr. T because he'll order tests. If you are lucky enough to get into Dr. M sooner rather than later, going with test results already in hand will put you ahead of the game.


    Most of us know how terrible this can be if it goes undx'ed and untreated (or undertreated) for months and years. Getting on this early is our fervent wish for everyone.


    Good job on firing the pediatrician. To find a new one, you might try calling every pediatric practice within a reasonable distance and ask them if they have a doctor familiar with treating Pandas.

  5. Surf Mom,


    Most fortunate the ER doctor was listening and knowledgeable. You might see if you can get the Amoxicillin changed to Augmentin--people seem to have better success on that. Susan Swedo was recently quoted as recommending three to six weeks of abx, so see if you can get more than the usual ten day dose, although your pediatrician doesn't sound too promising (most are not).


    Many parents find ibuprophen helpful for exacerbations--you might switch to that from Tylenol and dose even without fever.


    Here is dosing advice from Dr. T:


    "There seems to have been some confusion regarding dosing of Ibuprofen (aka Motrin, or Advil). The correct dose is 10mg/kg (or approx 5mg/pound) every 6-12 hrs (i.e. 2-4 times a day) NOT every 3-4 hrs


    So, for example, for a 50lb child, the correct dose would be 250mg and you could give that as often as every 6 hrs, but at least once every twelve hours.


    Never give it for more than a week without consulting your doctor .... it can be given longer, but let your doc know."



    Dr. M may be close to you, but there may be a several months long wait list. Dr. T tends to have a schedule that lets him take on new onset and crisis cases. You could always continue with Dr. M once you get in. I think Dr. K may also be easier to get a near appointment. Both of these doctors also do phone consultations. I don't know about Dr. K, but Dr. T will provide a list of tests to run following a phone consultation and you can schedule another phone or in person consult to discuss the results. If you could at all swing it, I'd go in person after a phone consult--he has a chance to see the child and be more custom in his treatment recommendations and you can get prescriptions that way (not sure if you can get them if he doesn't see the child in person--perhaps someone else knows this).


    With my best hopes this will be blitzkrieg and not a protracted battle for you and your daughter.


    Ko's Mom

  6. PowPow,

    Thanks--good to know that PEX doesn't necessarily need to be followed by IVIG. I have been thinking of an OCD program for my DS--Mclean, USF, or Rogers. For DD OCD is there, but anxiety/panic attacks have always been much worse. Not sure whether these programs address that so well... Also wondering if Dr. L might want to do something more for DD given all the hits her immune systm has had in the past six months including hospitalizations for two life-threatening infections. We'll see Dr. L at end of month for follow up.

    Ko's Mom

  7. Sinusitis from environmental allergies clearly has played a role for my DD. It took two surgeries to clear it up. The first consisted of adenoicetomy, nasal turbination, and sinus drainage. Three months later the sinuses again were all blocked and long term abx and steroids didn't help so balloon sinuplasty was performed. This helped but it hasn't eliminated susceptibility to sinus infections--she's had several since then, but they have cleared up much more quickly.

  8. Much thanks to all--DD released yeterday after nine days in hospital. Her blood infection appears unrelated to the IVIG. In a way I think we were lucky that she got aseptic meningitis from the IVIG because that got us to the ER, which led to discovery of the blood infection earlier than what might have been the case. Dr. L tells me that IVIG actually is a treatment for those with sepsis, so the IVIG in fact may have helped her to fight it. On a positive note, all the many treating physicians were very accepting of the Pandas dx, especially the neurologists--this was particulary notable as they were adult not pediatric neurologists. Dr. L has done a lot of educating of the latter at Georgetown, but not specifically with the former.

  9. The first page of this Swedo paper talks about Pandas in relation to SC:




    Perhaps over time we'll talk about post strep syndrome more generally and then discuss the various subclasses: Pandas/Pans, SC, RF, and possibly mixed presentation. I have read up a bit about MS, for example, and there four different subtypes are distinguished.


    My DD, 19, has been in Georgetown for a week following aseptic meningitis from IVIG and subsequent discovery of a blood infection. We have had a parade of specialists in from different areas and they have all been accepting of the Pandas dx, especially the neurologists. Notably, they have been from adult neurology and they ordered her back on clindamycin (without any prompting from us), which the attending doctor had not ordered for her. Dr. L has done a lot of work with pediatric neurology here but not with adult neurology, so their acceptance has come as a pleasant surprise.

  10. Fixit,


    DD is still in hospital. She did have aseptic meningitis. This happens I understand in 1 percent or so of those who get IVIG. But it resolves itself and though uncomfortable, particularly for head and back pain, it is not a big deal.


    The big deal is that they found she has a fungal blood infection. It is unclear how she got this and whether it had anything to do with the IVIG. Blood infections are definitely not a known risk for IVIG. On the other hand, such infections almost never happen in people who are not otherwise severely immunocompromised (advanced HIV or cancer patients under treatment, or premature babies). The mortality rate is around 75% because the population getting it is generally quite sick already.


    They narrowed the fungus down to candida yesterday. She had two rounds of IV amphotericin--a doctor friend told me they call this ampho-terrible because it rips up your insides--which was the only option before they knew what they were dealing with. But despite all the throwing up--she hasn't held down food for a week--it did get her to turn a corner yesteray. She is now on IV Flucanazole. She is begging to leave the hospital but that looks unlikely before Saturday.


    This is her second life-threatening illness in six months--she was in the hospital for a week in May with necrotizing pneumonia. Since then she has had constant nausea, thrown up at least three times a week, had five asthma attacks that required nebulization in the ER, strep, possible myco p, and at least three fevers of unknown origin. I keep asking the doctors for an explanation as to how this can happen. I am getting answers like just bad luck or maybe her immune system is different (?). The normal immune panel she had was fine--she was slightly low in one of the IGG subclasses. Dr. L when she first saw her thought maybe lab error and had them run again, but still fine. I keep wondering if there is some more exotic immune test that should be run.


    Jtsmom--I just saw your post. We got the zofran (which she has been receiving a lot IV during her hospital stay as well) and benadryl, but no vicodin or steroids. After this experience i amnot sure she'll agree to another of IVIG should it be needed. But if we do it, I am going to demand absolutely every protective measure available.


    Ko's Mom

  11. This must be highly individual. DD was put on steroid burst for asthma--60 mg a day for six days with no taper. Nothing adverse happened, but in retropect what was the ER doctor thinking when he did this? On the other hand, DD's pediatrician told us the one time she was put on prensone--not a burst--she cried uncontrollably for two days.

  12. jph,


    Thanks for the explanation. I would not call this Tourette's. It's a tic all right, but it is triggered by OCD, in this case a strong aversion to all things girls. You could call it tic-related OCD or tourettic ocd, a term coined by the ERP therapist my son had. My DS sound so very similar to yours. While he had all kinds of behaviors--touching thresholds, circling chairs before sitting, shoulder shrugging and eye blinking, the one with the real staying power was ticcing when he heard certain words, or even more specifically, phoenemes. In some cases, they were clearly contamination related--shampoo for example. Others were what I called the God words--God, Lord, Jesus. (This shed a whole new light on the saying cleanliness is next to godliness.) If he knew we knew the words bothered him and we said them anyway he would rage at us. I can't comment on video games as we did not have those, but I can say sleep gave him no respite--if the words popped up in his dreams he would tic.


    This was a very long time ago and it took six years to resolve. It started after a strep when he was 7, waned a great deal and was pretty much gone jusst as he got hit with another strep at age 9 adn a half. (Two prior illnesses resulted in a single OCD behavior that lasted a month.) It then became chronic and didn't end fully until he was 13. He was dx'ed with Pandas by myself when he was 9, by a pediatrician when he was ten, and by the NIMH when he was 11. He was too chronic by then for their studies and at the time they were not making any recommendations with regard to abx or IVIG. We had tried the SSRI route but I am pretty sure that in retropect they only worsened things, and I took him off shortly before he went to the NIMH. A sympathetic pediatrician gave him amoxicillin--unfortunately at prophylactic does, not treatment dose, but at least he did not strep again for a very long time.


    We ended up doing ERP twice a week for two years. This was a major hassle and the "homework" is not really designed to enhance parent child relations--you have to expose your child to the thing that causes major aversion and reward them for not engaging in the compulsion (the tic in this case). But we had no choice. The list of words was enormous--perhaps 100 including impossibly common words like "to" and "do" and all of their homonyms. The whole family developed a parallel language. We did not have parties, we had celebrations. We did not say tissue, we said Kleenex. We did not go to the pool, we went to the swimming place. We did not say pardon, we said sorry. We did not say two, we said double. His tic was to wipe his forehead. He did this so hard he split his skin and bled. Socially, all of this was very hard. He went to summer camp when he was ten and all went fine until the last day when he was in a group of boys waiting for parents to come pick them up. One of them from his school knew words could trigger his tics and showed the other boys and they all joined in sayng the trigger words and watching him tic. One of the junior counsellors was there and participated per the report of another boy in his class who reported it to his mother.


    I respect your decision to treat this naturally and that choice may be easier for you and your child because he is homeschooled. But if someone had told me there was a fair chance long term abx could make all this go away and relatively quickly, I would have jumped at it, particularly in retrospect and the remembrance of the darkness of the long years dealing with this. Pandas robbed him of all the childhood he remembers. I am on these boards now because he got strep again in college and once again got OCD--but much more classic handwashing etc. He has had to leave college. Just this year he got his tonsils and adenoids out, was put on long-term abx, and had IVIG (last week). He just turned 22, and I am hopeful he'll be able to return to college for spring semester.


    My two cents: take him to Dr. K, do the antibiotics--give at least a month trial to see if it work, and save up for IVIG in case that is needed. I am linking to two stories.


    This is from 2002--my son is the second boy.




    This is from 2007 and was written by his ERP therapist. My son is the second boy. (My quibble: we had to do this for two years, not six months and the role of tenex is greatly overplayed. It slowed him down so much we gave it up in two months or so,)





    Ko's Mom

  13. Dut,

    Brought back memories. My DS's ERP therpiast wrote an article in 2005 in which he coined the phrase toutrettic OCD. Am providing the link below. My DS is case number 2. Some inaccuracies. We had to do the ERP for nearly two years (article says six months.) He started shorly before a dx from NIMH--he was rejected for the study because he was too chronic and we were given no advice on how to treat, so all we had was ERP. Also, thee article plays up the benficial effects of Tenex--it slowed him down so much we had to drop it quite quickly.

    KO's Mom



  14. Strictly speaking pediatric encompasses both children and adolescents. I think including adolescents was part of the CANS vs PANS (childhood vs. pediatric) dispute. Dr. K notes that adolescent onset may look different; it is more insidious than the childhood version. At the same time he states that onset after age 8, and particularly after age 10, is likely not really the case--the individual likely had an earlier episode that was unrecognized. (My DS had at least two episodes with just one symptom prior to a third exacerbation that was in the classic mode of him coming home one day from school a totally different person. Dr. K also includes adults in this category as well--here is his description:


    "We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer.

    Symptoms usually start in high school (freshman or sophomore year).


    Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged.


    Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound.


    Intrusive thoughts are present in most patients.


    Severe and persistent sleep disturbances.


    Behavioral regression(s).


    Insecurity and separation anxiety (adolescent type).


    Chronic fatigue commonly present.


    Following several years of symptoms, presence of clinical depression is common!"

  15. This was her first IVIG--lyme at this point has pretty much been ruled out. The doctors' big concern is aseptic meningitis. Spinal tap was clear for that but apparently big signs of infection. They didn't specify but pretty sure high CRP. They are doing echo and brain scan per Dr. L's recommendation.

  16. No question really, just a why does this keep happening?


    DD 19 had IVIG Monday and Tuesday. Had headache and nausea second day. On Wednesday she fainted, had trouble walking and had headache and nausea. Her boyfriend took her to the ER. She was having an asthma attack so they nebulized her, gave her IV liquids and Zofram and something for pain.


    This morning I was on way to work when she called. Went back home. Fever of 104.5, horrible headache, vomiting, leg pain. Took her to the ER--more Zofram, IV fluid, dilaudid. Did spinal tap and have admitted her to hospital pending blood culture and tap results. They consulted on treatment with Dr. L, who had ordered the IVIG.


    This is her third hospitalization since May and she's already logged 15 days inpatient. Also something like her 12th or 13th trip to the ER since May--I've lost count and they all have become a blur. I'll remember this one for the med student who called me Mom twice. Also for the other med student who asked if I was the mother--so hard to tell she said as I looked so young. Hah! Defintely qualified for what is delicately called a woman of a certain age.


    Not to discourage those with younger kids, but when does this all just end?

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