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Wilma Jenks

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Posts posted by Wilma Jenks

  1. Quite the contrary. The honest replies from this group makes me feel more focused and driven. I want your honesty and appreciate it. Thanks. She is still sick sick sick, but her weird psychotic thoughts are better, and she is able to talk to me now without pretending she is an animal or something. Sounds like clostridia can cause lots of pschosis. I have a long road in front of me, but at least there may be some hope now. The psch. meds ALL made her worse. Nothing helped.

  2. I posted a couple of weeks ago, in a panic about my child. She is so sick and her symptoms are super bizarre. After the well intentioned replies I got, I thought I should leave this group, but after reading post from many months back and learning about the symptoms that some of your children have too. I believe that I am not alone. Some of the very odd symptoms that some of these children have are very close to my girls. I have tried a dozen meds, prescribed by the pdoc., and my child is not getting better. Actually worse. Her Cam kinase is 166.... she shows high levels of clostridia and who knows what other infections. I am going to stick with this group, if you don't mind, since I think that it is the only group that may be able to help. Although she is still very sick and her OCD is at its worse, I do see one improvement, thanks to Scott Smith, and that is that she is able to hold a conversation now and tell me what is wrong. Before he treated her for clostridia, she was not able to communitcate. This is the closest that I have come to seeing a real child inside. I am hoping that I can see some more healing. Thanks for being a great group of very concerned parents.

  3. I am researching the IVIG and considering it. I am told by one doctor that it is quite safe and told by another that the plasma exchange is much safer. With the IVIG, they are giving you other peoples blood, but with the plasma exchange, there cleaning your "own" blood. It would seem to me, that using your own blood is safer.

  4. Hi our daughter has had some bad heachaches in the past few days. She has been saying they are right at the front of her forehead. To compound matter, she fell on her face/head at school on Friday. They called and I ( happened to be going there anyway) checked on her and she seemed fine. We have been on Omnicef for over a week for , what we thought was, a sinus infection.

    Do your children complain of headaches at the front of their head?

    She seems , to me , to be heading more for another PANDAS episode more than anything.

  5. Hi Wilma, I share Phasmid's concern that your daughter have a "main" treating doctor who is aware of all the meds she is taking and that daily nutrition is a very critical part of all of this. Have you taken her to see the doctor in the last month? Is he/she aware of the crisis your daughter is in now? This must be so difficult for her as well as for you I am sure--

     

    I know that when in a crisis we are typically seeking the doctor's help weekly--hoping for help in a tangible way.

     

    May I ask what type of doctor are you seeing that prescribed the Vanco and Difulcan at the same time? -- on what basis? bloodwork? intestinal testing?

     

    If this is PANDAS then have you seen a PANDAS knowledgeable doctor?

    Have you seen a decrease in symptoms with antibiotics or a steroid burst?

     

    If I were you I would run (not walk) to a doctor for her -- (which I would think you have already done --)

     

    If you wonder if it could be PANDAS then be sure to see someone that knows PANDAS or that is willing to call a PANDAS knowledgeable doctor and consult.

     

    You can have a phone consult with Dr K (www.webpediatrics.com) but if you are thinking it is PANDAS and trying to treat it as such, then you need to consult with someone that really does know the right antibiotics for PANDAS.

     

    I truly hope you can find some knowledgeable help. The forum is a good site for support, and information, however none of us can prescribe nor advise over the internet like a good doctor may be able to do in person.

     

    Please let us know where you are (perhaps you already have done this) and perhaps someone can suggest a good doctor close enough to drive to--also, at the top of the PANDAS forum is the Helpful Threads and in there is a posting of many doctors that people on the forum have found to be of help.

     

    All the best--hugs are sent your way.

  6. She has been seeing a psychiatrist(the 3rd one) and has been on a dozen meds. that make her worse. The psychiatrist gave her blessing to look into PANDAS, because they are open minded and they are having a hard time getting this child relief! I appreciate you response, thanks. I sound like an idiot on here, I know... but not many people around to vent too. It's just very hard, as you all know!!!

  7. Her OCD seems to be skyrocketing at night. She has been on Vanco. Since Jan 4th. Added Diflucan 3 days ago. During the day she looks less foggy... at night OCD is out the roof. Could it just take time for these to calm down OCD. Do you think the probiotic will help when I add it. And most important. We tried many medictions, and they do not work. The only think that helps a bit is lamictal, but not much. It does help the aggression a bit.

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