Wilma Jenks
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Posts posted by Wilma Jenks
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It's just that I see her OCD getting worse and sleep getting worse. I have seen this over and over with meds., I usually keep giving them and it never gets better. I guess I will still keep going...You would still keep going even if she is pulling all nighters every night?
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Rockytop...is your child really this sick. I hate to hear it but at least you can relate. My child NEVER sleeps. We try everything.
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thanks. i will.
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Still doing the steroid burst and Abx.
She is still severe OCD and now stays up even later. Sticking with it though.
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my child has always had so much agitation over someone telling her she is getting big. she asks over and over and over "mom, i am still a baby, right." kills her that she is not a baby. she thinks no body will take care of her if she grows up. I will be posting a lot today. Things are crazy bad over here!
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The family is thinking about hospitalization for our girl to be observed. We are a bit nervous because most doctors don't believe the PANDAS things. What hospital would be the best, and also...do you think there is any benefit to do a CAT SCAN...PET???? She has had the EEG, and it showed abnormal. She had the MRI, and it showed sinus infection. I pray they find something. I am wondering if I am trying to hard to fit her into the PANDAS category. She does have the CAM KINASE saying...166 and she shows high clostridia. Some of the OCD drugs may have helped a bit, but the side effects where worse than the OCD with her. She got uninhibited and wanted to run naked in the street. She is usually really shy. Has anyone gone the hospital route???? Also, I would love to reach out to doctors that deal with really though cases. Do you know of any???
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i just never see any indication that her gut is bad.
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cant wait to stop this burst. ocd still bad
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I am on day 6 of steroid burst. She is up til 4am every nigh with severe OCD. I added the Bactrim in 2 days ago. still not helping. Would u still hang in there. She is getting quite aggressive too. Would you still finish the burst? What if this does not work? ...and IVIG does not work? Man, is this scary. She has been gargling in the bathrooom for and hour. It seems the Bactrim is activationg for her too. Comment and help PLEASE. I am so tired.
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Have your kids ever kicked you or gotten physical from die-off from Abx.?
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I just want to thank everyone that endlessly sticks by me through this ######!!!! This was the WORST week of the last 12 years. I had school threatening to call the state on me, I had my girl that was at her worst EVER. Doctors whom I thought "got" what was going on....started to question my reporting on my girls symptoms. It goes on... and on....
I really thought I was going to crash. Fighting for my child and then fighting the rest of the world also, gets to be a lot at times. The only time I get relief is when I can vent and say whatever is on my mind on this board. I totally sound like a lunatic at times, but for some reason I don't care at this point in my life. Anyway.....today is a pretty ok day. I am kind of excited. I feel like there is hope.
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mkur...sorry you guys have 2 go through this.
i really feel for you. how is he doing lately?
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she has no appetite on the steroids. i told that to the doctor and he said she has to be eating more....i told him, really she is not eating. i swear. she would go all day without food if i let her. she keeps telling her therapist that her mother is a pain for pushing food on her all the time.
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She is on day 5 of the steroid taper. I just talked to the doctor and said I thought I saw her get a bit better for a couple of hours but the next day she was super bad again. He said that he does not understand why. He asked if she was on an antibiotic and I said no. He said why and I said because "you never told me that she needed to be on one with this taper" Man, why do some of these doctors assume that you know all of this!!! He wants her on this same dose of steroids for a few more days while starting bactrim. Please give my any feed back that you have. It just helps to talk to you.
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Thank you. I am for sure sticking with it. I have no other choice. One good thing is she kissed me on my head for 20 minutes straight last night. I have never really had any affection from her since birth. I always craved to hold her and kiss her. Well, last night I got my fix. LOL
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Yes, pharmacist said one dose with meal in the morning,
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Do you guys think that this steroid burst could still start to work. It is day 4, and her OCD is still severe. She can't get unstuck. Do you know what I mean? First she is stuck washing her hands, then she is stuck getting all of her urine out of her. She can't move and get out of the bathroom. She looks like a wild animal. She doesn't even care if anyone knows she is doing these rituals. Please tell me what you would do? Would you see this steroid thing through? She has 2 more days on full dose (3 pills a day) and then we go down to 2 pills a day. What do you think???? I am so sad for this girl. I am having such a hard time watching her suffer.
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I was giving the 3 pills in the morning. Duh!!! I figured the word "burst" meant give all at once. No wonder she looks awful.
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On day 3 of steroid burst she raged and then got calmer at night and had less OCD. I though things were looking up, but 2day, which is day 4, her bad thoughts and worries are high and she is aggressive. Is it possible that things wax and wane. My sister said it does not make sense that things don't get progressively better. Can I have ur thoughts?
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Tutor comes in yesterday after hours of my child raging and asks "do you think your child is just trying to pull the wool over your eyes?"
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I did testing for mold, viruses, allergies, parasited, vitamin deficiencies and heavy metals. I have been around the country to non traditional doctors, western doctors etc... My next step is to get on the nightly news to yell my story out to the world 2 see if anyone can help. You just watch me. I don't embarrass easily, so I will do something really bizzarr to get everyones attention. There has to be an answer out there!!!!
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I'm so sorry you are going through this! When we first tried a 5-day steroid burst with our ds9, he got worse and by day 3 was starting to "hear things." We stopped at that point and a couple of days later started to see significant improvement. We think the steroids did their job, but while he was taking them he was having side-effects. The improvement did not last however - 1 1/2 weeks later he caught a virus and we were back to square one.
Have you resolved your questions about Lyme yet? It may make sense to see a different Lyme doc, if the one you saw will only diagnose based on testing. A good LLMD will look at everything that could be affecting her - Lyme, coinfections, mold, viruses, strep, allergies, parasites, vitamin deficiencies, heavy metals, etc. They will be able to diagnose her pretty well based on both symptoms and testing. Then they can treat her with medications/herbals/supplements based on their assesment. At the point, her response to treatment will give the doctor a better idea of what's going on as well. This seems like a safer route to me than steroids and IVIG without really knowing what infections/issues she's dealing with - especially since she is SO sensitive.
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We are headed for IVIG. We are waiting on blood tests. Dr. B. said do steroids in the meantime since the OCD was around the clock and severe. Dr. B. said bring her to the E.R. room, but she is starting to calm down.
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Ok...day three on steroid burst. Already she has broken 2 pairs of my glasses. She is screaming that she does not want to get old. This is something that she has complained about since she could talk, but it is coming back big time since starting the burst. I emailed the doctor, but I like 2 bounce it off of you guys too. I really don't want to stop this burst. I feel like I don't have many more things to try. She is really agressive with me. She is trying to stick my finger up the dogs rectum. Sorry, but I need to be completely honest. She get super odd symptoms.
we are in psychiatric hospital bc of pandas
in PANS / PANDAS (Lyme included)
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I am not much help Mia, but I am so sad for what you are dealing with. I know how unbearable it is for you!!!! I am there 4 you.