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Posts posted by kos_mom

  1. DD got PR rash three and a half weeks after IVIG. I am wondering if it could have come from the IVIG as I am sure they don't screen for that. Luckily, PR is usually pretty harmless though DD had low grade fever befoe the rash and it hit 101.5 the day after it appeared. DS had IVIG at same time and am starting to see improvements. DD, although better in some ways--the jerks that were annoying her so much are gone, but she continues to have assorted problems--fatigue, nausea etc. Thanks for asking.

  2. Nicklemama,


    Have had that too. Got a followup to Myco P IGG and IGm and they failed to do the IGG that was ordered. The IGm was up (but not over 700, the cutoff for normal) but without knowing whether the IGG was up hard to tell whether the infection was on the upswing or the downswing. I am not having another lab done without checking what they write down against the prescription. I will unapologetically call every doctor's office afterwards to have them fax me the lab results. And I will call the doctor up to question every abnormal result--we've had ESRs of 85 and CRPs of 22 ignored. Have also had an ER fail to report to the doctor or me a positive 48 hour strep culture.


    Why bother with the labs if they don't send them to the doctors and the doctors don't look at them?


    Ko's Mom

  3. So the very nice lady at the hospital got back to me and said tests were cancelled because there wasn't sufficient fluid. But they didn't refer to anyone to prioritize which tests were most critical. And they didn't inform anyone some of the tests were cancelled, not to mention they didn't send the results. The lady was very apologetic and even called up some of the specialty labs where the fluid had been sent to to see if they had some fluid still stored to run the most critical test. (Since it was so long after the fact, all the vials had been thrown out.)


    The main reason for the LP was to rule out MS, which requires a test for ollicogonal bands, because DD has spasticity in her legs for which she is taking baclofen, a drug mostly prescribed to MS patients with exactly this issue. That test got cancelled--but they did run an HIV test (apparently pretty standard everytime they run an LP), which was completely beside the point.


    Can't imagine getting another LP at this point--DD got aseptic meningitis in November and had to have an LP in the ER for that. Had I known they failed to run the crucial MS test earlier, I could have asked for it to be tacked on.

  4. Dr. L ordered LP for DD in Septemeber. She had it September 18. First visit after (first week of October or so) she said it showed nothing. I asked a couple of weeks ago for the results to be faxed because we were going to another doctor. I received only the first page of the report from the hospital that did the LP saying, essentially, the LP was done. Last Friday when I was at Dr. L's office, I asked for the complete report and it turns out they had no lab results. Apparently they were never sent. Today I went in person to the hospital to get the results and found results from more than half of the tests are missing, and they include the most critical ones. Finally I got someone by phone at the hospital who acknowledged that the "system" appeared to have cancelled out the tests. She is investigating further.


    Again, do we have to do EVERYTHING? Apparently so.

  5. SurfMon,


    I'd try to get a 30 day prescription for either augmentin or azithromycin. I wouldn't worry about the high B12 as long as the rest of the CBC is fine--can occasionally be elevated in liver disease or leukemia, either of which would resulted in other abnormal CBC value, but generally high levels are fine. B12 that the body does not use is excreted through the urine so there are no ill effects owing to build up in the body.


    Would agree with skipping TB test or just doing chest Xray if there is concern. It is funny how people react to drugs--I was found to have inactive TB at age 18 and took Isoniazid for a year and, unlike Hopeny's DH, noticed no adverse effects. Of course unlike him I actually had inactive TB--as seen in chest Xray that followed the TB test.


    Ko's Mom

  6. SurfMom,

    I would push for augmentin with your pediatrician. Is he open to prescribing for more than the usual ten days? I wouldn't bother with local neurologist unless you can verify he or she has treated Pandas patients before (the front office should be able to tell you). In my area another reason for not bothering with a neurologist in the situation you are in--where you want immediate treatment--is that it can take weeks/months for a new patient appointment. I know you are in the process of intake with Dr M, but if it will be some time before you can get in and you can't get abx from your pediatrician, I would consider a phone consult with Dr. T.

    Ko's Mom

  7. So, I hadn't heard of either of these people before but I looked at the clip. Jennifer is (was?) an actress on a show called Blue Bloods. She had been advised by her doctor to cut back on her 80- 90 hour a week schedule the week before she collapsed on the set. It looked like she's since been asked to leave the show, but that was not clear--there was some intimation she'd return.


    She says she's been suffering from celiac many years undx'ed and that has caused all kinds of food allergies. Also said she'd had period of extreme anxiety and hair falling out. I felt sorry for her. Dr. Drew (whom I've never heard of before) bore right into her when she said she'd been diagnosed after running a lot of blood tests. He leaned in on her and said "What tests?" She hesitated and he said, "You can tell me. I am a doctor after all." (Quotes may not be exact.) She could only come up with IGG. Clearly he thought she had been to a suspect doctor who was giving her a wacky dx. He asked what kind of specialist she'd gone to and she said just an ordinary doctor.


    After he had established to his satisfaction that the whole thing was suspect, he loosened up on the inquisatorial tone and drew the lesson that one's health suffers when one gets rundown. So he ended up a little more sympathetically. If you google you can see tweets from Jennifer indicating she was very unhappy about the show. Given the business she is in, however, she should have had a publicist who better prepared her for this interview. She did not come off as a knowledgeable spokesperson for celiac and must have been very naive to walk onto Dr. Drew's set expecting some kind of warm and fuzzy reception.

  8. Here are my DD 19's Myco P and Strep numbers for this year. Myco P is rising steadily, but very slowly. Don't know if this is indicative of current active or chronic infection or whether the numbers are not high enough to be concerned. DD has had ongoing nausea and vomiting since June. Also, she was dx'ed with asthma when she was 14, but it was always a footnote to other things. Since July she's had to be nebulized five times in the hospital. Am wondering if Myco P could be implicated--have read it plays a role in asthma exacerbations.


    Do not have any idea what to make of the recent rise in ASO (DS has had rise as well, but not as much), especially given clindamycin and recent IVIG. Both kids had flares starting on the same day last week.



    7/18 ASO 656 Anti DNaseB 147

    8/8 Begin clindamycin 300 mg 3 x day, ongoing

    8/27 ASO 400 AntiDNaseB 173

    Myco IGM 339 IGG 3.88

    9/14 Myco IGM 372 IGG (NA)

    10/22 IVIG

    11/23 ASO 551 AntiDNaseB 198

    Myco IGM 547 IGG 4.34


    Here is DS22 info; he had IVIG same week and has been on same clindamycin regime since June:


    7/5 ASO 245

    7/9 T and A

    7/23 ASO 215 AntiDNaseB 340

    11/23 ASO 295 AntiDNaseB 548

    Myco IGM 206 IGG 3.60


    We'll be seeing Dr. L on Thursday. Am wondering if clinda still working for strep (or was there an intervening re-infection in the two of them) and if we need something additional to work on Myco P.


    This is a cross-post.

  9. Bearing in mind my DS was essentially untreated, his first two exacerbations lasted about three months. His third went on nearly a year. His fourth lasted lasted around three and a half years. The third and fourth were bad initially for a month or two, then they settled down but not to a level that came anywhere near a definition of normal.

  10. Nicklemama,

    Everything is so much easier when you have a pediatrician in your corner. All I can suggest is calling up every pediatric practice within a reasonable distance to see if you can find anyone willing to work with you. We are fortunate to have a pediatrician who, while not knowlegeable, is willing to work with us. Both my kids had a flare starting the same day post IVIG and he tested both for ASO, antiDnase B, and myco IGG and IGM. He also gave my DS a zpack. My DD got tested but was unwilling to wait to see the doctor to get the Zpack. She no longer wants to see the pediatrician because she is 19--finding an adult doctor who will cooperate is even harder! So frustrating when this pediatrician is so willing, so close, and has an in-office lab.

    Ko's Mom

  11. Sosudden,


    Thanks for all the great information. I did a lot of ERP with DS, who also went to therapist twice a week, for two long years. He had tics that were triggered by very specific thing. The treatment was to expose him to the trigger, and rewarding him for not engaging in his response, the tic. So, interms of what you have outlined, we went from event straight to behavior. There was no stopping at thought or feeling, and trying to engage him in either of these probably would have been futile since the behavior had become so automatic.


    ERP was a lot of hard work, but the approach you outline for anxiety requires much more in the way of inner resources from the child. It can't be easy to express thoughts and feelings about the event. These definitely cannot be addressed while the event is happening--in DD's case these tend to occur when she is already running late.


    DD went through almost every day of high school having makeup induced anxiety attacks. By 8 in the morning we had already had our fill of stress for the day. I am hoping this latest manifestation is just transitory as discussing it is so hard--she has logical reasons for why the makeup isn't any good, previously her acne, now it's dry skin. If the thought is people will laugh at her, she'll argue that they will and everyone knows only looks matter and people who say that's not so are lying etc. In other words all her anxiety is completely justified and is rooted in rationality. Arghh--so frustrating especially since we''ve gone through a period where she'd go out without any makeup and not really care if her hair was properly brushed or not.


    Am monitoring this closely and will seriously consider setting her up with CBT if this continues. Am hoping it is just flare.

  12. Sosudden,


    I am very familiar with ERP for clear obsessions followed by clear compulsions (had to do this for two years with DS), but I am a little fuzzier on how this works for anxiety because sometimes the triggers are so much more diffuse.


    Two examples from DD who recently backslid. We were late getting to Thanksgiving dinner because her skin was dry and she thought her makeup wasn't perfect. She had to redo three times, all the while breaking out in a sweat--which made the makeup more problematic--and so having to use the blow dryer on cool on her face to counter the sweat. (Needless to saw makeup imperfections were noticeable only by her.) Where to start on ERP for something like that? Her other anxiety attack came in the car on the way to a party. Her plan was to use public transportation to get home but she had left without her Ipod and had a huge anxiety attack in the car over the thought of being on the subway without her Ipod. I offered to pick her up so she wouldn't need to take public transportation but that wouldn't do because the subway was already planned for in her mind. So of course I had to drop her and drive home and back again to bring her the Ipod. Again, how does one do ERP for this?


    Ko's Mom

  13. Thenmama,


    I have the same questions--both DD and DS finished IVIG four weeks and some days ago. DD got aseptic meningitis and fungal blood infection three days after IVIG. In her fourth week she got a virus, pityriasis rosea (big rash on back). I did see some progress (not as impressive as yours), but have seen some back sliding in last two days. DD showed mild separation anxiety on Wednesday and had two anxiety attacks on Thanksgiving and DS reported definite uptick in OCD starting Wednesday. I took both in today for blood tests for strep and myco p. Have no idea if the IVIG will have done anything, especially for DD.


    Perhaps we moved too quickly in getting IVIG, but we were facing the United insurance deadline.


    Ko's Mom

  14. Then mama,

    So great your pediatrician checks up on specialists before sending your child there! We"ve had so many pointless appointments, and the more we have the less DD wants to bother with doctors. Can't say that I blame her. I have thought about Mayo for several years and will have to seriously pursue this route if I can't make headway by the end of the year. I like the suggestion of looking at CFS or immune deficient groups to see if I can find someone that way. I did ask Dr. L about an intern for DS who at 22 is definitely outgrowing pediatrician and she said she had absolutely no one in the area to recommend; she suggested sticking with his pediatrician. I might consider moving DD back to pediatric practice (she wanted to leave); downside is that all their referrals tend to be to pediatric specialists who won't see anyone over 18. Yet another conundrum to square....

    Ko's Mom

  15. Both my DS 22 and DD 19 had IVIG four weeks ago and both had exacerbations starting yesterday--DD anxiety and DS handwashing OCd. Is this normal or should I be looking for infections?


    DD has ongoing nausea and vomiting. Got worse on Saturday when she had 101 fever--the day before she broke into a rash since identified as caused by pityriasis rosea, a virus. Tuesday night more vomiting and Wednesday a lot more. Coincidentally she had a gastro appt--she threw up twice in the office and had chills but no fever. Gastro had emergency so saw the physicians assistant instead. Her endoscopy results were fine except for damage to the esophagus because of the vomiting. They suggested she see an infectious diseases doctor in light of her significant history of two unusual life threatening infections in past six months that required extensie hospitalization: necrotizing pneumonia and a fungal blood infection four days after her IVIG. In addition, she's had strep, mycoplasma pneumonia (which I am convinced hasn't resolved but can't get doctors to retest), and two high idiosyncratic fevers in addition to what she had with the pityriasis, as well as five hospital nebulizations for asthma, which was not a problem before the pneumonia. Not to mention leg spasticity that requires her to take an MS med so she can walk and ongoing leg, knee, and back pain.


    At the hospital, the team, including the ID doctors) agreed the gastro should be the one to look into the nausea and vomiting. I told the PA that and she said they were referring us to another ID outside the hospital. So I called that ID for an appointment, explaining we had a referral. The office said he couldn't see her because she had ID doctors at the hospital. I said they already had outsourced this problem to the gastro and she was referring it on. Finally the appointment person said just maybe if they got the referral letter and if the gastro personally called, the doctor might see DD. He is not back until Tuesday, so I'll call then.


    I know it is useless to go back to the hospital--they'll just have her see a resident--the one she went to for followup on the fungal infection refused to deal with the myco p. The hospital nicely set us up with a new primary care doctor, but again a resident. My DD went on her own (was on business trip but prepared all the history, lab reports, list of questions) and that doctor said ID doctors should test for myco and she apparently blew off the low iron and ferritin levels, as well as low TSH Dr. T said should be investigated.


    Honestly, why would the hospital think a resident was sufficient as a PCP for a 19 year old with all these problems? Last PCP didn't seem thrilled to have a patient with so much stuff going on and thought avelox given for pneumonia was perfectly fine to treat strep titers of 660. I got around her by managing to get an appointment with a Pandas friendly ENT to get her proper abx while we were waiting for Dr. L appt.


    I have no idea if the ID doctor will do any good or not, particularly as one hears they are not particularly Pandas friendly. On the other hand, one feels one has to explore all avenues, but does one really need to beg? I feel I have to engage in guerilla warfare to get proper treatment. Dr. L is good--we see her next week--but she certainly can't manage all this stuff. Getting a decent PCP is a real problem.


    I seem to have a DD whom no doctor wants to treat--this constant fobbing off is so frustrating. In six months she's logged 23 days in hospital and had nearly 15 ER visits. And scores of doctors appointments--can't remember how many exactly. I just really feel we are at a place that is far beyond my ability to manage. Is it so unreasonable to want to have medical help that could get my DD to a point where she could go to school or work, neither of which she' been able to do for a year and a half?


    Thanks for letting me vent!

  16. Some find near immediate improvement on abx, particulary if it's caught early. I'd encourage you to look into the IVIG study at NIMH. If you look at the sticky threads at the top of the forum, you'll find a thread on doctors who have helped. Here is one I found from Colorado:


    Dr. Issac Melamed, Immunologist with IVIG infusion center – very proactive and thorough

    Centennial, Colorado



    There are also doctors listed by state on one of the pages of the thread--you'll find some for Arizona. Many new onset parents do a telephone consult with Dr. T in NJ--he'll order a list of labs and you'll get good feedback from him.


    Ko's Mom

  17. Cobbie,

    Don't know about mitochondrial but testing for thyroid antibodies is done to see if there is Hashimoto's or Graves, both autoimmune diseases. I think they typically test for two antibodies--my DS's endocrinoligist said there are more so negative result does not mean its not Hashimoto's. He treated my DS as Hashimotos based on pattern of lab results. Treated is a generous word--he dx'ed him with it then said there was nothing to do until the thyroid died off. (If you read internet on thyroid, you will see how angry many people are about this approach.) Later testing seemed to indicate perhaps not Hashimotos after all. All very confusing. I think weird thyroid things happen with Pandas--Dr. T told us that as well. DD tested below normal on TSH and Dr. T advised further follow up, as he did on low ferritin and iron, but trying to get anyone else interested enough to test seems quite futile...

    Ko's Mom

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