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Wilma Jenks

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Posts posted by Wilma Jenks

  1. What can I expect to see with this burst? Is there die off. Will she look really bad b4 she starts to look good? She goes wild and crazy with most meds. so I want to b prepared. He prescribed 40mg. for 6 days. At first I thought he said she would do something that would taper off each day. what is the usual dose?

  2. I tried my girl on Azith & Nystatin, and then Vanco. and Diflucan, and then Rifamkin (spelling??) All of these made her OCD worse at night, and super agitated. I kept her on them for a good amount of time and then I was told to stop them. But what is interesting is she looks a bit less psycotic these days. Could these have done some good even though while on them, she was way out of control and her symptoms were really bad?? It's either that they helped a bit or the teeny teeny bit of seroquel( 6mg) at night is the one helping. Not sure.

  3. She does not do well with Abx. Seem to make her worse.

    Charcoal does not help

    Motrin does not help.

    Psych. drugs don't help.

    Her handwritting did not decline suddenly.

    Her suymptoms were not sudden. She was sick at birth.

    She has 166 on Cam Kinase.

    Her symptoms sound PANDAish.

    High levels of Clostridia.

     

    Doesn't sound like most PANDAS kids. Would you still try IVIG? Since she is non-functioning and something has to be tried. I know I sound wishy washy, but to me it's a BIG desicsion. I do not want to make this child suffer anymore, or make her worse, ya know? Thanks for understanding.

  4. The Lyme specialist said that even if they test for co-infections...that it is not accurate. My gut instinct tells me this in NOT Lymes. Her Igenix test came back with possitive band 41. Then the next test they did "31" test, was negative. I would rather not stick her again for this co-infection thing, but I don't think Dr. B. will do IVIG if we don't have it done.

  5. Dr. B. wants us to check for co-infections before IVIG. We did Lyme test and the additional "31" test, but we never tested for co-infections. Doctor Beal in Maryland said even though you do this additional test, it's not definitive. Has anyone done IVIG without testing for co-infections? Also, what other blood work is done b4 you do the IVIG. She is not going to be happy with more blood work. Man, I wish all this was tested when the Igenix test was done!!! I don't think Dr. B. will do the IVIG without this additional test 4 co-infections.

  6. Thansk so much. I am so nervous that this won't work either. Since NOTHING has ever helped. I am usually very optimistic, but I am having a hard time, because if the IVIG does not help, I am left with a very very sick non-functioning child and there is no help left, as far as I know.

  7. Thansk so much. I am so nervous that this won't work either. Since NOTHING has ever helped. I am usually very optimistic, but I am having a hard time, because if the IVIG does not help, I am left with a very very sick non-functioning child and there is no help left, as far as I know.

  8. How can I explain this procedure to my child. I don't need to give her details, but a little info.

    It there a pic line, like in the PEX? Is there blood work done b4 hand? Do they fast. I guess Dr. B will explain this, but any info. from you would be appreciatied. Also if you have any tricks to getting insurance to pay, would be great. All her tests come back looking pretty good, accept the Cam Kinase and One Test for Clostridia.

  9. I really like the current psychiatrist we are seeing. She is pretty open minded to things, but I think my child is such a bizarre case, that most people are just very perplexed by it. For some reason, the smallest amount of meds. seem to make her more violent. Sometimes when I give 2mg. of melatonin too close to something else, for example... it's like their is an explosion in her brain and she goes violent. This has consistenly been the case since a very young child. When ever I go up over 12.5mg. of lamictal, the violence starts. I tried going up higher on depakote at one point, and she ripped the furniture apart. Serveral psychiatrist told me that these drugs are not designed to make this happen. I told them, I really don't know exactly what these drugs are designed to do, but I can tell you what they do to my child. I want these drugs to work more than them, but I constantly feel like I am pleading with them to bleive me when I tell them what is happening. I don't want to waste time and evergy on trying to convince anyone anymore. Anyway...I was wondering if there are any psychiatrist that no about PANDAS, and if anyone knows of any in the Northern NJ area? I am still going to try to work things out with current pdoc., because I REALLY don't want to leave her,but I want one lined up, just in case.

  10. He confirms what Scott Smith told us. He said a severe case of PANDAS. He is going to try another abx. called ramiflex or somehting like that. Don't have the name in front of me. He gave us a Rx for the steroid burst, but we are hesitant becuase she gets so wild with so much. He is getting us ready for IVIG. Checking on insurance. He was kind and informative. He wants us to check for co-infections on the Ingenix test. I wonder why Dr. Beals did not have us do this. He is the Lyme expert. Just wondering...My gut tells me the IVIG is the way to go. This poor child has been so sick for soooo long.

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