Wilma Jenks
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Posts posted by Wilma Jenks
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I had two good days on the higher dose steroid. Dr. B . put her on 50mg for 3 days. Things looked pretty good. She took a shower...changed her clothes and said "mom, it's the calmest I have ever felt"... she even started reading (which she can't do usually) but now... I can't get her to stop reading. Ohmygosh, this is weird. She is on day 11 of steroids.
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Do you think I should look 4 a Psychologist that knows about PANDAS, that will work with my pscychiatrist (that's knows little about pandas).... or should it be a psychiatrist that that I should get??? i thought if it were a psychologist, she could try ERP with my girl. I pay out of pocket, which I will do no matter what, but is sure would be nice 2 not go into further debt.
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Does anyone know of a psychologist in Northern NJ who understands PANDAS?
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If my girl keeps looking good on the steroids, I was wondering if I should be looking 4 a psychologist instead of a psychiatrist, since Dr. T. said she doesn't really need psych. drugs with PANDAS. It appears he is right, since we are finally starting 2 c improvement 4 the first time on these steroids. Are there many psychologists in NJ that "get" PANDAS, or are they hard to find too? My girl IS on lamictal too for the abnomrmal EEG. Just 12mg. The psych. doctor was prescribing them. Nuerologist didn't think any of her sypmtpoms were related 2 the EEG. I see they were right. It is PANDAS. Ugh. I just have 2 figure out what doctors I need to prescribe what. Dr. B. does not prescribe lamictal. I was thinking I need:
Psycologist that understands PANDAS and to help with the school piece.
Nuerologist that can prescribe the lamictal
Immunoligist for the PANDAS part.
Is it worth staying with our psychiatrist in hopes that she finally believes what I am telling her, or should I move on? It has been a year? I think I know the answer, but I am so tired to start over....
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Kimballot...I get what your saying. When my child has little windows of normalcy, she does such a great job of applying herself. She works so hard to do the right thing. It's just then she is sick, which has been most of her life...she is id another world and you just can't penetrate the agatiation and talk to her. She is stuck talking to imaginary friends and gets so mad if you interupt. One day I was being rushed to the hospital 4 something and she stood there watching me being put on the stretcher and screaming that she wanted 2 go to block busters. This is the way she has always been. One big ball of confusion and I can't seem to explain it to anyone or get anyone 2 belieive it. My husband and sister finally see what I mean since we have been living in close quarters 2gether lately. I am so tired of trying 2 explain. She has been sick since birth. Panda docs say its a severe case. IDK.
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My brother has OCD. My mom, I believe had un-diagnosed Torettes. My nephew had tics. Alcholism on both sides, and I had a racing brain and OCDish symptoms.
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Man, it's a tough one. Thanks so much 4 being there.
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You guys are fabulous. I tried to show the psych. doctor videos, and she said she doesn't need 2 c them to understand what is going on. SHE SURE DOES, because she keeps telling me that the medication we try are not suppose to make children violent!!! She keeps telling me that they are tested on kids and they don't do this. Well...they were NOT tested on my child, I told her. Time for another doctor I think. I'm paying a lot of money (out of pocket) for someone that does not believe me, and it is not only on this subject...
My girl tries so hard to read and learn. When the tutor comes, she gives it a try and you can see her pupils dialate and become very agitated. I know then, it's time to give her a break. The pdoc. emails me and says I need to back the teachers and give my girl lots of encouragement to learn. Ugh!!! She should have been in my shoes for the last 12 years. Anyway...I told her that sounds like information from the book called "Parenting for Dummies 101"
I told her that I didn't even need to read THAT book to know that is the way it USUALLY works for kids. BUT NOT MINE!!!
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It is day two of the higher dose steroid burst (50mg) that we were instructed to do. Yesterday, I saw the OCD subside considerably. She was able to dress herself for bed last night and and was not afraid to let me hug her good night, in fear of contamination. Psychotic thoughts were greatly diminished She showered two days in a row. She sat with the tutor, with some noticeable OCD and agitation, but got through almost 2 hours of learning. She woke this morning with a bit of agitation and OCD, but was able to dress herself and get out the door by 9am, with her therapist. For the first time ever...her pupils did not look dialated and she did not have that pale sick look that she always has.The most interesting part was that giving tylenol for her achey ankles did not make her violent, which consistently happens to her with medications and we don't know why.... (Could it be that the steroids are bringing down brain inflammation, and now her brain is able to not be so assaulted?)
Needless to say...we are cautiously optimistic, since things in the past have looked like they were starting to help, only to see her regress. I am simply reporting what I am seeing. Good news for a change :0)
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Does anyone have a psychiatrist that knows about PANDAS and believes you when you tell them of your child'r very strange behavoir?
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Fish oil has always made my child rage more...
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Good luck trying to explain. I have tried for 12 years, and it still has not worked. Thinking of you....
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laure...how are things?
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I am totally fine keeping her home. The psychiatrist keeps pushing it, because she gets these violent outbursts. The only time she gets physical with me is when they try psch. drugs on her, but the psychiatrist doesn't believe me. She said her severe OCD is what makes her violent. Not true. Her OCD gets her super agitated and impulsive, but not violent. She can be calmed with her OCD, but with the psych. drugs I lose her. I need a pdoc. that believes me.
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I am totally fine keeping her home. The psychiatrist keeps pushing it, because she gets these violent outbursts. The only time she gets physical with me is when they try psch. drugs on her, but the psychiatrist doesn't believe me. She said her severe OCD is what makes her violent. Not true. Her OCD gets her super agitated and impulsive, but not violent. She can be calmed with her OCD, but with the psych. drugs I lose her. I need a pdoc. that believes me.
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I hear the hospital is up on PANDAS. And a good place 2 go in an emergency.
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Has anyone had any experience with Dr. Eliza at CHOP hospital in Phily? Any comments?
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If your PANDAS child had to be hospiatlizes, what hospital would you pick? Also...are there any psychiatrists that deal with PANDAS in Northern NJ?
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The doctor is taking her off of the Bactrim, since I think it is the one keeping her up til 6am, but I am not possitive. Could be the steroids building in her system too. We have to try somehting though. He is also raising steroid dose. It is so hard to figure out what was making her already severe insomnia worse. It's really tricky isn't it? Dr. B. has been pretty helpful. THANK GOD!!!
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So they can do that, right? They can come in here and just take her and commit her? I emailed Dr. B. and the pdoc. Told them to talk. My fear is that Columbia hospital will not beleive in PANDAS.
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The psychiatrist called me and wants to put my child in the hospital. I don't think it's a bad idea, but I fear they will screw her up even more, since nobody believes me that medications make her crazy and more pscho.
The psychiatrist keeps telling me that the severe reaction is her OCD waxing and waning. I told her.."then how do you explain, that when I stop the medication that I suspect makes her nuts, that the aggression goes away???"
Another doctor said, I don't think it's the meds making her nuts...I think it is the "act" of taking the meds. I told him that most times she does not know she is getting medication, since I hide it in Jello. MEDICATIONS MAKER HER RAGE AND GET VIOLENT FOR 12 YEARS. I AM REALLY VERY WELL QUALIFIED TO REPORT THIS, SINCE I AM HER MOM AND I HAVE KEPT COPIOUS NOTES FOR 12 YEARS, AND HAVE WITNESSES GALORE. UGH..... Give me advice!!!! They are looking at Columbia hosptiat in New York.
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I am really going to stick this out. It is not just the steroids that keep my girl. She has not slept since a baby. It has always been really scary looking. Steroids just make it sooo much worse. The good thing is that during the day, she is not bouncing off the walls like she usually does. Man, I hope something good comes from this.
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What do they do to eradicate sinus infection? You would never know she has one, other than the MRI. She has never had a cold or even sniffled. Would you do anything just cause it shows a sinus infection on the MRI?
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my girl is on lamictal for seizures, but a super low dose. can't get high ones into her. the nuero. said her behavouirs are NOT linked to seizures.
Not good again/Steroid Burst
in PANS / PANDAS (Lyme included)
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She is just on steroid. Doctor took her off of Bactrim cause it kept her up til around 5am for many nights. Then he upped steroid from 30mg. to 50mg. I saw started seeing A TEENY bit of improvement, tonight is horrible with OCD again. She had been on the steroid for 12 days. It should not start to look bad after it started to look a tiny bit good, should it? It seems like the steroid may be making her a bit agressive now. This is such a horrible emotional roller coaster. It is cruel. Any possitive comments would be helpful.