dcmom

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

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

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-

Where in NJ are you?

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

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

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 :-)

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?

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.

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.

Rothmans program is 1 hour per day. The would do CBT for anxiety. We have not done DBT.

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.

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

PMd you!

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