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Posts posted by kos_mom

  1. Powpow,

    Nothing from Dr. L--long story but she more or less fired DD as patient. Am scrambling to find a new provider as we have no abx and DD's anxiety is mounting. Trying to impress on DD, who has now put Dr. L on her bad list, that one cannot just traipse into a doctor's office and come out with a long term abx prescription. DD finds this beyond belief; she has been on sorts of anti-anxiety meds and never saw a bit of improvement until she got long-term abx this year. It is just so obvious to her she is finding it hard believe what I am telling her. Also have to listen to how Pandas isn't cancer so why do the mothers have to spend time on the internet talking to each other about it; she is sure mothers of kids with asthma don't do this. Sigh.

    Ko's Mom

  2. I've been at this 16 years, albeit without appropriate treatment for most of it. This has been one of the bad weeks. Older kids present different problems and they've come up in spades since last weekend. I have provider problems for my DD; she's without abx with an ASO of 550 and mounting IGG and IGM myco p and growing anxiety. She's finally been able to eat after days of not even being to hold down water. I can't get her to go to the lab to do tests ordered three weeks ago. I had to hire a lawyer for something her ex-boyfriend did. My DS has driven my crazy over the last two weeks because which he's done nothing but try to select classes for his next semester; at this rate I despair he will actually make it back to college.


    So I put up the tree and it's beautiful. Everything will work out, perhaps not in the way we had hoped or expected but they will work out.

  3. Clindamycin is not the best choice for myco p if that is the major concern for you now. Besides azithromycin I have heard minocycline works for myco p and there are no doubt others. Recently, there has been a problem reaching Dr. T. This may have been because he was preparing for his hearing before the NY Department of Health on Thursday. If you get no answer from email, you might try calling the office and saying you are having a flare and think you need a change of abx and see what they advise, perhaps a phone consult. You can certainly go ahead with Dr. L--many people get second and even third opinions and most of the doctors don't seem to mind this.

  4. Surf Mom,


    We have had to go cold turkey off abx since end of November because DD's doctor has more or less fired her as a patient (long story). Her anxiety is returning and she has gotten back the inner restlessness/electric shock feeling back, in addition to insomnia. She is still on the following medications--Allegra, baclofen for spasticity, and zofran for nausea/vomiting. I also give her Benedryl for insomnia and continue to give her probiotics. Am desparately trying to find a replacement provider as her ASO is back up to 550, and her myco P IGG and IGm continue to mount; I am sure she needs to be back on abx.


    Ko's Mom

  5. DD complains of the following. She starts getting a feeling of inner restless and cannot stay in one spot, has to keep moving. Then she begings to feel something that she says is like electric shocks all over her body. She says it is extremely uncomfortable and sometimes looks like convulsions. I have seen this convulsion thing in her legs and arms twice. Quite brief and somewhat seizure like--looks like an electrical charge moving through her limbs. If she takes Haldol when the inner restless starts she says it stops the progression. When she described this to the neurologists when she was hospitalized for another illness, they ok'ed the Haldol and said they thought it was Pandas related.


    This began after a strep infection in summer that went untreated for a number of weeks, along with jerking movements. The abx did not address it or the jerks but went away several weeks after IVIG at end of Ocotber. She's not on abx now and this just came back along with lots of anxiety.

  6. Croatian Mom,

    I do not wish to alarm you, but my DD had candida appear on a throat culture--perhaps from a combination of inhaled steroids for asthma and two plus weeks of steroids for asthma, as well as large and prolonged amounts of broad spectrum abx. It was not treated and disseminated into her bloodstream. A fungal blood infection is life-threatening; DD was hospitalized for nine days. This is a fairly rare occurence--immune system typically is compromised in some way (in DD's case probably from the steroids)--but I would not take a chance on not treating the candida in your DS's throat.

    Ko's Mom

  7. She seems to sleep through the night on benadryl. I cannot fully vouch for the safety of giving benadryl everyday, but I have looked it up briefly on the internet and it seems pretty benign--it's an old antihistamine. I do know parents who give it to their kids every night during allergy season. Sometimes kids just need a kick start on resetting their inner clocks so maybe a week or so on benadryl would do the trick.

  8. Tiredmama,


    We are having chronic nausea and vomiting problems as well. DD was recently hospitalized for blood infection and this became a problem in releasing her because they were afraid she wouldn't be able to continue oral med regimen after release. She pulled herself together enough to get out, but they referred her to a gastroenterologist. They also gave her prescriptions for zofran and phenergan, which help somewhat. Compazine, which her PCP gave her previously, was not helpful for her and Dr. L advised against it because it has psychiatric side effects.


    She had an endoscopy at the hospital which was negative except for tears in her esophagus from vomiting. She is on protonix for this--apparently tears like this can become ulcers and protonix helps prevent that. The gastroenterologist is referring her to an infectious diseases doctor--not 100 percent sure why but we are to see him before going back. DD is motivated to do so as the gastroenterologist is controlling the anti-nausea meds. The ID doctor is proving harder to get into than Harvard--I've been calling the office for three weeks and can't get an answer as to whether he will deign to see her, let alone an appointment. (A digressive vent.)


    The gastroenterologist expressed concern about DD's fluctuating liver function tests (a bit hard to sort out owing to major infections that can affect this test) and in the meantime has ordered blood tests that are clearly aimed at exploring a possible autoimmune problem with gastrointestinal effects. Here are the tests she has ordered:


    Complete blood count

    Complete metabolic panel

    Anti-Smooth Muscle Ab

    Anti Mitochondrial Ab

    Anti-Nuclear Ab

    Iron/TIBC/Iron Saturation percent


    DD has lost 20 pounds since May, but is not yet in dangerous territory. Like your son, she eats whenever she can do so without feeling nauseated and has no body image etc. problems.


    I hope something in this might help.


    Ko's Mom

  9. After one strep infection my DS went completely hyper about a month later (long time ago--he only got usual 10 day amoxicillin). It was completely exhausting, even though I was pretty used to his almost nonstop tics. While I have mentally blocked out most of what happened, I recall desperately trying to get him to do homework while we was jumping on and off his desk, alternating with jumping up and down and on and off on his bed. He also got a huge craving for sugar--previously sweets had never been his thing. One night he raced through the house opening absolutely every cupboard door one after another no matter how high in search of candy. Luckily this lasted only a month. I honestly don't know how parents survive this kind of extreme hyperactivity that goes on for months. Good luck.

  10. Lilly,


    I am confused as to why prozac would help with confusion. Did the doctor have some kind of theory or is he just trying things to see if something sticks?


    I really have no knowledge on this one, but the first thing I would think of would be Namenda, which some people have used with success on their Pandas DC. It is given to Alzheimers patients, who certainly suffer from confusion.


    Just a thought.


    Ko's Mom

  11. I can only comment on meclizine. Earlier this year I was struck suddenly with severe vertigo. It was a Sunday so I had to go to the ER. They concluded it was either a virus or something like little things in the ear canal (something like that) being misaligned. They advised going to an ENT for followup and gave me meclizine. I didn't get to the ENT until Friday and they tested for the little things, which I did not have, and concluded it was a virus. Then I asked the doctor whether I should continue the meclizine. He was shocked I was still on it. Apparently, it is great for quelling the immediate vertigo but the goal should be to stop using it as soon as possible because it interferes with the body's ability to overcome the balance issues on its own.

  12. Dr. L has told us spitting is a big Pandas symptom--not sure why but DD really had it and complained constantly about having excess saliva. DD also had severe knee and leg pain and sometimes could only walk with very cramped pigeon-toed steps. Both seemed to have improved notably since IVIG. She had both strep and mycoplasma, as well as past infections of EBV. Was not positive for lyme or other tick-borne diseases on tests Dr. T ran.

  13. Landamom,

    There are degrees of Christmas tree rash. My DS had PR and when I took him into the doctor he said he was bringing another colleague into consult. This was just a cover for him showing someone else in the practice the most efflorescent perfect Christmas tree ever on someone's back. It was truly spectacular. The PR in DD's back was not even a Charlie Brown Christmas tree--spots here and ther and if you really focused you could just see them possibly connecting up to form the distinctive downward curvilinear lines.

    Ko's Mom

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