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Everything posted by tenyearswithpans

  1. Thanks for sharing I am 20 years old now but it started when I was 11. The Advil I have been taking also has been working pretty well.
  2. I have that problem to with the add part of me my bain is wondering from one thing to another and sometimes we All have weird day dreams or thoughts then the ocd immediately wants to stick to it. The only approach that works good for me. If you look it up we have no control over all of our thoughts nobody does. We can concentrate our minds to think about different things but not one person has full control so with this I like to take the mindfulness approach. You can't control everything that goes on especially when we have a problem so with that. Go into situations that cause these thoughts let them go crazy and just keep telling yourself it's not me it's no big deal because they don't change me and if I could I would think about something else. As you start gradually and the more you accept them (because they are not yours ) the less they will keep bothering you eventually but it does take time.
  3. Yes thanks for your concerns my mom is an RN and makes sure I don't overdo things because of my history
  4. Anyone from their pandas just have no appatite I weighed 190 and dropped to 145. I want to eat and its so frustrating. I've had to do a lot of working out to get to 190 I'm not depressed anxious just no appatite that's lasted for 7 months now. I am getting a bacteria/fungi breath test so hopefully they can figure something out.
  5. Thank you!! Its so nice to are other people will help and care!! Right now I'm acting well to paxil and adderall the stimulant made the big change psych wise. The ibeprofin I have been using for 3 days made a huge difference I'm happier and way less brain fog
  6. I'm not sure about lyme as seeing more things that play along with this disorder. I just have so many thing ls that could be directly related the 2 eosinophel disorders not producing antiboties to pneumonia but my psych symptoms started right after I got better from throwing up from hypereosinopelia and the pneumonia went away
  7. Verry curious also if you don't mind sharring some of your daughters auttoimmune troubles she went through
  8. Thank you so much I will try advil!! What type of doctor perscribed steroids for your case. It is driving me insane that nobody around my area accepts pandas. I'm thinking of calling dr. Torletti prob spelled that wrong just to are if her could be able to help me. Very frustrationg. The last 3 days though I have been using ibeprofen and it is making a big difference with brain fog and worrying and I hope it keep dose
  9. Thank you . I have tried strattera any had no reaction to it. If you could please send me a link to the other one I would greatly apprechiate it. I am now recently having memory issues like forgetting how to spell simple words and meanings of some elementary middle school words even. Of course keys, dates, and what I was about to do for left something. Do you know when the inflamation goes down if it helps in anyway? Still trying to find a doctor in buffalo area that accepts pans disorder
  10. Just wondering if anyone had succes with different therapys to help tic?!?! As i got older mine mostly went away on their own I have a little flare up resonly were I keep bitting my back teeth together and grinding them like kids do when they sleep. Also doing hand gestures fingers when I walk with my arms at my sides. I know that's not anything major at all but I don't want others coming back from when I was younger.
  11. Yess agree completly I learned my lesson from withdrawl from stoping adderall. NEVER change change dose for stop without notifying a dr. I am not one. I just wanted to say from own experiance with ssris I didn't have problems coming off. It is completly different for everyone. Some react fine others don't. One weird experiance I had with zoloft was I was on it for 2. Years and it was great 8 monthes ago tried starting it again and on 5!! Mgs which is very small compared to my 200 I was on b4 it made my have panic attacks and throw up repetativley. Yes 100% never do a thing until the doctor knows how you were b4 you started it and you have to give it time some can take a full month to properly work but "personally" I've done pretty good with a gradual wean
  12. I can't stand ignorant doctors that don't accept this illness!!!!!! They have no clue about mental health and body I cannot wait until psychiatry goes extinc. Their therorys for mental ilness is based on unproven ideas for crying out loud!!! I take pschology and want to scream at her that she's wrong. Other parts of the world have linked every sickness to affect the brain with every single "mental illness" their is. Its like our country likes calling people mentaly insane. They fricking wonder why people with mentall ilness commit homicides? The dang meds they give me and others for it help you with usually 1 thing and cause 5 reverse reactions. I want to extinct the medications the use and their tarted theories that they say themeselves doesn't make sense lmao. *edit*
  13. My story from childhood is very long if you read my post about my journey it helps explain what I went through in a nice narration I wrote for a class. When I was in second grade I started throwing up 12 times a day lost weight and had testing done by doctors all over my to get a diagnosis. In 5th grade they diagnosed me with hypereosiophelia and eosiphelia gastoentitus. Not long later in 6th grade I had pneumonia 5 times during the school year. They found out I didn't produce antibioties to it so I had to get an antibotty shot. My eosiophels were over 5600 for years I had bronchitis problems and some strep problems. I jsut want imput from these thing what anyone might think would be my try cause for pans?
  14. That if terrible I'm sorry to hear this. Have you heard of Strattera? Its is a adhd add medication that's its own class not a stimulant for ssri. I've use it but it didn't work. Unfortunitly it will have no effect a lot it all depends how you react. The only readon I mention this one is because their are minimal to any side effects with it. Good luck!
  15. I am not being treated for my pans right now and used adderall. It helped me so much more than any other medication. Though I've built a high tollerance extremly fast. I stopped it for 4 days to try to reduse tollerence and immdediatly the next day had terrible paranoia, vivid disturbing dreams and loss of reality. My doctor said it was withdrawl psyhcosis affect from the stop so her is trying vyvanse as I requested. I'm starting it the 17th. Did anyone have good effects with other stimulants besides adderall? Please share your of your kids experiance.
  16. High school was very hard for me my anxiety was terrible and I was affraid my friends wouldn't accept me. Just remind him you haven't changed you don't have a mental illness so if someone makes fun of you of trys they are incorrect is with pans where given this disorder to bring knowledge to this world and make new theories know to help others. If kids aren't good to him I went to an alternative school for mental health kids that my home school paid for it was just a berter environment swers and nurses to pass meds. I got my regents and am now going to college. Keep encouraging and telling him life is so different once you get out as I'm sure you know
  17. I've been on all ssris except 2 on paxil now the wean prosses is very not to difficult with all ssris I would do half of that dose for a week then stop. They should not make you aggresive at all I'm sorry she's having that side affect. You might notice she will get a little more anxious than normal but its from the weaning process and once off it for a few days anxiety will subside. Good luck!!!
  18. Thank you so much I've had doctors diagnose me with so many different things including paranoid schizofrenia. It was a long road but they now no my paranoia was from my intusive thoughts and thinking I was a terrible person because of them. My favorite approach is mindfullness. Just because I know now I have no control when they get wakey and doesn't change the person I am at all. I am having still a very hard time to find a doctor that believs my case (for accepts its real) I've talked to pans proffecionals like dr. Janice Tona who has a son with it and she did most research papers to prove, yes it is real. How did you son respond after therapy treatment? I am on bactrium for acne and its helping my simptoms of pans alot then if I have no antibiotic. Smh at doctors that don't believe it when other countrys have been treating it for years.
  19. Has anyone had a difficult time of their child with intrusive thoughts about religous figures of family members. How did treatment with pans help this?
  20. Adderall has helped my thoughts slow down, focus, motivation, anxiety, and more. I was also diagnosed with bipolar because I would get sudden rage and flip out for no reason. Which now I know is my pans. Anyone ever have luck with vyvanse
  21. Thank you!! and the girls were dignosed by dr. T for pandas. Dent is now seeing them and said its a convultion disorder which I completly disagree with.
  22. I still have yet to get medications for my true pans disorder antibiotics/steroids etc. Psychiatrists have tried every med on me because they didn't know about pans and some just don't accept it. I can say from my own history of trial and error the only things that help for me are stimulants and stimulant acting antidepressants. It took a lot of asking because I had anxiety but my anxiety is so much better and ocd tics sudden rage. I feel like my Adderall which I am soon getting vyvanse is the only thing that makes any difference I'm in college now and I was on every antipsychotic but 2, all antidepressants, maois, and benzos. None of them turned my life around at all except when they tried stimulants. The reason I think this is is because as far as I heard from know about pans pandas it effects dopamine so that's probably why.
  23. Alot of hope looking forward for my disorder but so much disapointment with drs. from the buffalo area!!!

  24. I feel the same way at 20 I support myself but my medical expensives are thousands a month. Every time my mom pays bills I feel terrible because they would have so much more if I didn't need testings done all the time. Hospializations to scrips. I feel like they would be able to have their cottage they want. They make great money but idk
  25. Thank you! I also agree that pediatrtions, nurses, health teachers should get this. I sufferd 6 years with psychiatrists telling me I had so many mental illnesses with meds that did more harm than good. I was a kid!! If they can do this with all kids that have trouble we could save a lot of suffering
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