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Everything posted by dcmom

  1. beerae- I will throw this out there also- I can't remember how old your daughter is... My two girls are now on prozac. I do credit the prozac for keeping mood issues in check. My younger needs it as she does have baseline anxiety, but my oldest has no baseline issues. I have found at a low dose, It lifts and stabilizes mood for my daughter(s) in and out of pandas flares. We no longer get aggression, hitting, yelling, temper, anger. We only get ocd. While ocd is horrific in itself, it is much easier on everyone when there is not that horrible mood stuff along with it. I know many on
  2. I am so sorry. I remember your daughter's story. I can share Nancy's sentiment. Although we are not there yet with my daughters, things are a lot better. Both girls still flare with pandas, but the episodes are limited to ocd only. While this is still extremely disruptive and sometimes debilitating- both girls no longer have food restriction or mood issues (tantrums, etc) with a flare. It makes life at home happy again, even if ocd is making life outside the home difficult for them. My hope is that episodes continue to get milder and milder, until they are just a bump. My thoughts
  3. I second Mama2alex's recommendation of the Rothman Center. We have been with both daughters and are big fans. It does not replace medical treatment, but it really helps, and gives the whole family coping tools. That being said, it has not prevented us from subsequent flare ups with school refusal-
  4. Hi again. I am in NJ too. I will private message you my email if you would like to chat online for support or whatever. We ended up getting an attorney to do IEPs last year. The biggest thing we put in was that- 1. Homebound instruction should begin after 5 consecutive absences without further documentation. 2. While on homebound instruction, student shall still be allowed and encouraged to attend school for any time period during the day possible. 3. When returning to school after being on homebound instruction, homebound instruction shall not be removed until student attends school full t
  5. Again, I am sorry, as I looked but did not respond. I don't have a response that you will want to hear, so I was hoping others would chime in with more positive thoughts. I have two daughters diagnosed with pandas seven years ago. It has been up and down. Sometimes a few years of remission, other times, year after year of flare ups. For me, with two, it has been really hard to work. I was and currently am a SAHM, but we did plan for me to go back to work- and we really need it financially. Initially when they were diagnosed, we put that on the back burner. For my kids, school refusal due to oc
  6. Yes. My daughters both had the flu mist for the first time about 2 mos before pandas onset. They both had strep with NO SYMPTOMS other than pandas symptoms at time of first episode. It was luck that we found out about pandas immediately and cultured them. They had NO TITERS after that documented case of strep. In the years previous to pandas, each had strep once or twice with symptoms and no pandas issues. I definitely wonder if the flu mist contributed! I also personally think they had a mutated strain of strep. But tha is me :-)
  7. I would be cautious in getting your tonsils out. Not that I am against it- but first, healing is longer in adults, and secondly, many pandas patients flare up after tonsil removal. If you were to do the surgery, be sure to have antibiotics before, during and after- and possibly steroids for after. I would say the description of your symptoms sound a little more like lyme than pandas- to me. Have you tested for lyme?
  8. ladymavs- It didn't help us- but helps some. A beta blocker propanolol is used off label to help with anxiety. Fast acting. Little to no side effects. You could try it- My daughters are both on Prozac (SSRI). It hasn't helped with the ocd or anxiety, but was a game changer as far as mood and emotional lability. If you have any of that along with the ocd I would urge you to try at a low dose. Prozac start at 5mg, increase to 10mg after a couple of weeks. I resisted for a long time, and am so sorry I did.
  9. I agree- if you cannot get into Rothman until July- try to get into Rogers ASAP. It would be a shame for him to suffer until July.
  10. Rothmans program is 1 hour per day. The would do CBT for anxiety. We have not done DBT.
  11. We have used mino for pandas. One time it worked extremely well. Another time it had no effect. We are trying it for a month now to see if it helps current ocd issue. While I have at times has thoughts of buying meds online somehow- I would not. Most importantly of course is safety, but beyond that the practical reason that you really have to work in partnership with your doc.
  12. Annieo- What you are describing has been one of my daughter's biggest pandas issues over the years. I personally think urinary frequency comes from a physical/biological issue caused by pandas (this is discussed in the literature)- but then for some kids ocd/ sensory issues get involved with the toiling issue and it all goes overboard. I have two pandas daughters- both have had urinary frequency when in a flare up. One does not even notice. The other, it takes over her world with an ocd reaction to it. (always feeling she has to go, feeling she is always wet down there, avoiding using the
  13. annieo- I am so sorry you and your family have suffered so much. Your daughter's symptoms sound exactly like my daughters first onset of pandas. My best advice to you would be to find a practitioner that treats PANDAS, hopefully recommended by someone on this board, or pandas network.org. In our experience, they are the only ones who can effectively treat this disorder. Don't waste time, as many have waiting lists. In the meantime, try to keep things as calm as possible. See if your doctor will keep your daughter on antibiotics until you can see pandas doc, and consider treating your daughter
  14. Here is the book I am talking about. I have not seen it, but we have several copies of the OCD version of this- and it is the best book I have seen for kids with ocd, so I would be hopeful on the one regarding anger. It is a workbook, and it will probably be simple enough to do with your child. http://www.amazon.com/What-When-Your-Temper-Flares/dp/1433801345/ref=sr_1_1?ie=UTF8&qid=1458140689&sr=8-1&keywords=what+to+do+when+your+temper+flares It is "What to do when your temper flares"
  15. Hi. The great news is that she is almost back to baseline. It may take longer to see a final resolution of symptoms, even another month. During this time I would slowly start reigning in behavior with appropriate parental response. We have found, that during a pandas episode, lots of rules go out the window just for the family to get through the day. Once the bulk of the most debilitating symptoms go, its time to actively work on the remaining. As a parent, you definitely need to stay calm, and model calm, because of course scolding someone in a temper tantrum is not productive. I would consid
  16. I would say, sadly, that if a child is symptomatic then they already have the disorder. The only advice I would give, on this journey for 7 years with 2 kids, is to treat each flare up as quickly and aggressively as possible. When we have been able to do that, they have done great. We find that we need to treat with several components; immune treatment (steroids, plasma pheresis, etc), psychological treatment (CBT and ERP therapy), and yes psychiatry (we have seen great success with prozac- waited too long due to fear to try) and of course the unavoidable time and patience. Get yourself the be
  17. When my kids flare, they will watch excessive TV (they watch very little when well). For them, it is an escape from reality. The minute they are doing better, TV watching subsides. If they were boys- I assume this would be video games.
  18. Wombat- So much still to learn. I agree with pow pow, my kids ocd does not go away until treated, typically with immune mediating treatment- not antibiotics. The question is whether your ocd would respond? IMHO the risk is low, vs the possible benefit. OCD is very painful to treat via therapy, so much nicer to treat if it responds to medication. I am thinking you are not in the US? Any chance of getting the Cunningham test? While that may not necessarily rule immune involvement out, it would be a great clue if your numbers were elevated. You may be able to take that to your doc and
  19. Uh- isn't IVIG covered for Sydenham's chorea? I would consider switching docs- but maybe don't be so fast to ditch the SC diagnosis. If you are diagnosed as pandas you likely will pay your own way for IVIG.
  20. Is it possible it is OCD and not ADD? Just wondering because I have two girls that when they flare HW is impossible (honor students also)- but it is mostly OCD causing issues. We just started propanolol which is a beta blocker, and seems to help the general anxiety enough to calm things down. We are in a similar spot where kids are only doing 1/2 hr- not good- but it is OCD/ anxiety shutting them down. What is school doing about time he missed? Holding him back or letting him go forward?
  21. I am so sorry for what you are going through. I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disord
  22. My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well. How long has your child been experiencing pandas symptoms? I think homebound is a good option, because I wouldn't want to make any decisions until he is treated. Good luck!
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