Wilma Jenks
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Posts posted by Wilma Jenks
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The only thing that confuses me is that my child is always mentally ill. She is never normal looking.
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is he still on the tenex or risperdral? thanks.
she is on 25mg. seroquel. we thought that would help.
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thanks. no she is not playing with privates. she just races around the house and into the streets. They have tried dapakote,seroquel, gabapentin, trileptal, lamictal, luvox, celexa, and they can not stop the racing brain and racing thoughts..now azith. and it seems to help a little. i believe the thoughts get too much and make her crazy and she etihg wants to run in the street or she ransacks the cabinets or she begs for the neck vibratrator that we have lying around so she can use it on her privates. whatever happens to her or makes her brain race aggitates her to no end. i am thinkging it may be yeast. we start the probiotic and nystatin soon. man, i hope that helps.
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thanks. no she is not playing with privates. she just races around the house and into the streets. They have tried dapakote,seroquel, gabapentin, trileptal, lamictal, luvox, celexa, and they can not stop the racing brain and racing thoughts..now azith. and it seems to help a little. i believe the thoughts get too much and make her crazy and she etihg wants to run in the street or she ransacks the cabinets or she begs for the neck vibratrator that we have lying around so she can use it on her privates. whatever happens to her or makes her brain race aggitates her to no end. i am thinkging it may be yeast. we start the probiotic and nystatin soon. man, i hope that helps.
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does anyone know if yeast could cause racing thoughts? and sever agitation, like making the kid want to run outside at all hours of the night. so many drugs were tried on this girl and nothing helped. it just occurred to me that perhaps yeast was causing this??? the doctor has her on azith. and wants us to start, nystatin, and probiotic. do either of these help with yeast?
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I started the azith. on Dec 4th. At that time she was taking 2.5mg. Celexa, and 25mg. seroquel. I saw the azith. help right away with sleep, and I thought with the agitation and wanting to run into the street at midnight. Then the pdoc. stopeed the Celexa, because it was too activation. While coming off of the Celexa, she looked quite good, and I thought azith. was the magic bullet. Now I see the agitation building again, and wanting to run out of the house and not being able to take no for an answer. She gets like a wild animal and can't even understand logic at the time. I am a bit dissapointed at the moment. Any tips. This is a roller coaster.
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OLE = Olive Leaf Extract
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My child has been in and out of school. I could not even home-school her since she was so sick. She is finally coming out of her violent crazy helllish world and there may be a chance that she can attend school some day. Has anyone ever home schooled and then re-enrolled their child in school? Can you explain how it was?
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It is just a miracle with what I am seeing with my child. The azith. is really helping my VERY VERY sick girl. Daytime is looking good, but the agitation at night is still tough. She is on 250mg. of azith.... 25mg. of seroques... and 3mg. melatonin. The pdoc is going to add in lamictal for the spikes on her EEG, but in the past this has not helped much with the agitation. Do you think something like OLE would be helpful to add in? Or should I just keep up the azith. and wait awhle? She has been on it for about 14 days. Need advice.
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are there actual ribbons to buy and wear? thanks for designing this.
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No. I would not add the lamictal at the same time, but she needs it at some point for some spikes on EEG. I was asking- if you would change the abx. if you thought it made her seem impulsive? or would you think that the lamictal would help with the impulsivity, therefore we could keep the azith. on board. Sorry if I am confusing you.
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I see the Azith. help with sleep, severe agitation (where she runs in the street) and her OCD at night, but....I see it making her a bit uninhibited. Is this commom with this medication? She has been on it about 12 days. Doctor wants to add in lamictal because of the spikes on her EEG, and perhaps that may help. Would you change the abx. at this point. Need your suggestions. Thnx.
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LOL. I can't see that ever happening right now.
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Thanks God!!! I really needed to hear that. I do believe that we are on the right path now. Man, it has been a long ten years. The pdoc. was really pushing for psych. ward, but I do see some improvement with the azith. I don't know how to thank all of you. I was so exhausted and out of juice, but I think I just got a burst of energy. :0)
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I was wondering how many of these children can go on to life a normal-ish life. I am almost afraid to ask this questions. My child was/is a very severe case and I was wondering if there is a chance she may be able to take care of herself. Guess I am just looking for some reassurance.
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Thanks so much. I needed some response for family members that questioned me. I kept telling them... that the Romans never beleived that the lead in there drinking jugs was poisoning them either!!! It is so hard dealing with a sick child and then trying to explain the PANDAS thing ontop of it. Thanks for the responses and I am sorry if I stirred up some tough emotions in anyone. Not intended!
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why don't all doctors believe that PANDAS exists? Isn't there scientific proof that backs the validity of PANDAS? Why such controvery? Thanks
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Man, you guys are great. I am so glad I found you. This is such a roller coaster, but I think aftr ten long years, that I am on the right path. I feel hopeful now that I may be able to get this poor girl some help. Thanks everyone!!!
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She has been on them for a couple of months.
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Thanks for all of your help. I just think there is not going to be help for this girl. All the doctors I take her too, seem to give up on us. My next appointment is with Scott Smith in Edison NJ. I hear he will stick with us and figure things out. My girl is so nice, smart and talented, but so so psychotic looking. She has been spinning in circles since birth. So sad. The walnut sized lump under her ear at 1o days old, keeps popping into my head, along with the sinus troubles they said she has on her MRI. I feel like it could be an infection, but she goes ballistic with all the meds/supplements we try. The only thing I can do right now is keep her stable so she does not hurt herself or me. If you met her, you woudld love her.
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I had all the testing done. Dr. Trfilettie said is was normal, but has her on Azith. just to see what happens. She is getting nore violent. I had her on depakote, lamictal, luvox, celexa, trileptal, gabapentin. nothing stops her agitation and wanting to run in the street, masturbating, craving food and ransacking the house for sweets. i think this agitation is all the same in away. if its not the sweets... its the vibrator... if not the vibrator it is wanting to run in the street. it is this severe agitation. she is only able to sit in front of a tv. she is non functioning.
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I have only seend her look normal a handful of times for very short periods (hours.) Then goes right back into her aggitated world, with lots of imaginary friends and obsessions. She tells me that the thoughs won't stop bombarding her brain. She can't read, because her brain is on fire. It does not seem like just OCD. Sometimes she sees me as a monster (very distorted thinking) and she wants me out of the house. We had an Mri, that showed sinus trouble. We had EEG's that showed some sparks but no seiures. I was wondering if a CAT or Spect Scan may show something. We went to Dr. Trifiletti in Ramsey NJ. He has her on Azith. and she is sleeping through the night soundly for the first time in her life, but the azith. seems to be making her more aggresiive (kicked me toinginght in the ribs) Ugh!
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i can't believe you just posted that. my girl kicked my in the ribs tonight, cut her hair off, and cut up lots of my clothing. Ugh! i thought this would help. she had an allergic reaction to augmenten years ago, so i am hesitant to try it again.
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I will make this short. I have yet to find anyone that had the same situation as ours. I need to put it out there once again.
My girl gets really agitated and I can't stop her from running into the streets. Or she gets really aggitated and ransacks the fridge for anything sweet. There is no stopping her becasue she gets violent. Then after eating anything, she seems to crash and attack me. Kicks, screams, bites. If it isn't food, then she will scream for a neck vibrator that we use in our home. She discovered that it feels good on her genitals (sorry to be so graphic) We have to say we lost it, or she will stay in the house all day and use it. We can't control this behavour. We have tried many drugs, which helps a just a little. Can ANYONE relate to this. It just seems like her brain is on fire all of the time and all foods make it worse. It even happens when she doesn't eat anything. She is very unstabel. She is really sick.
Things are going bad
in PANS / PANDAS (Lyme included)
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yes, the mri showed a sinus infection. no sniffles etc. though. she is pretty wild and aggressive right now. she is on 250mg. of azith. and 25mg. seroguel. i am not sure what is making her so wild. i guess i will post and see if any kids get wild and aggressive with the azith.