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 here don't like the ssri's - but I wish that I didnt wait so long to give them a try. Life changing for us, and at very low dose so I feel really good about it.

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 are with you and your girl.

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 time for two weeks. Our school just would not try to grasp the issues. If our daughter needed homebound, getting it started took WEEKS. Then, if she was ready to go back to school, they wouldn't allow it until she got a doctors note. And then, if she was back for a few half days, they would start pressuring her about when they could cut off homebound. This is high school- Both of my kids were able to attend fully in elementary school even during flare ups. Middle school was harder, but the school was sensitive and supportive. The hit the fan in high school- which is why I encourage every pandas parent to get their IEPs as beefed up as possible before that, even if your child is doing great (mine had been asymptomatic for almost two years) and the middle school is handling it beautifully (ours did- yet HS same district- a disaster).

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 ocd surrounding things involving school is really the only symptom they suffer from now. It is unpredictable. I started working, a few years ago and had to quit mid year. I started working the next year, and had to quit again. I also was accepted to grad school to do a career change, but have put that on the back burner. I could go to grad school with the help of family- but I am doubting it is worth the $$ if I am never able to work. My kids are older, high school and 7th grade, and TBH they still need me at home in a flare. In fact when a flare comes now, they sometimes get really depressed (my older had suicidal ideation last year) so we now have a policy of not leaving them home alone at all in a flare. This is not good news. I don't know what to tell you. Some parents can work, and some pandas kids can attend school even while flaring. Mine cannot. It is early on for you to make decisions- you need to see the pattern of his illness. But- you need support. It will be very hard to impossible to do it alone. Can you move with your mom? Will she be a willing partner in caring for your son? I think you need (if possible) to sit her and your ex down and all have a frank discussion about the future. Do you get alimony or child support? Is there the option for more? I think you need to plan for a worst case scenario that your son will need a caregiver (and not a teenager) at home until he is 18. It will not be constant- and this is worst case- but if you can plan for that, and things are better great! In the best world it would look like this- you, the Dad, and your mom all agree that there may be times your son will be homebound and someone needs to be there. Either you alternate who takes a leave from work, and you do grad school (at night?) and pursue a career, or depending on finances you decide one of you stays home, maybe works from home or a smaller part time job. It sucks- there are no easy answers.

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 bathroom, wiping excessively, and on and on.) The fact that this fear is causing her to not want to go to school would be a huge red flag for ocd in my house. In my opinion, your daughter needs treatment for pandas (antibiotics to start, maybe steroids) and she also needs CBT/ERP therapy to help her with the ocd/sensory involvement. All of my daughter's urinary issues resolve when pandas episode resolves thanks to treatment. Good luck- I know how frustrating/disruptive this is to all!

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 with 5-7 days of round the clock (as if she had a fever) advil.