dcmom

Mino has worked well for us. Mine do not stay on long term, use as needed. My younger is also on 5mg prozac- which has cleared up all lingering mood issues.

Beerae- Totally agree- any eating now is of great value- forget about worrying about getting healthy foods in, until her eating has stabilized. Our doctor uses mino as the only abx for pandas- it is used for brain inflammation as it crosses the BBB.

Omg- enjoy! let the healing begin!!!

Do they do exposures?

I agree about medical treatment that works prior to therapy really being effective. Rothman uses ERP, lots of during appt exposures, along with homework to practice. Not a lot of "talking". Is this what ur therapist is doing? I will send u a pm later with a doc suggestion.

I think your doc is not being nearly aggressive enough (sorry). In my opinion, 8 months is WAY too long not to see progress. Minocyclene and steroids should have been started way back. I urge you to consider finding a pandas doc that will treat aggressively and help you with insurance. Rothman is the best for Peds OCD treatment. It is daily treatment- plus they are tough , they push the kids. I don't have experience with where you are for therapy- so it might be fine- With any treatment I would expect results- if not- I would look elsewhere. I don't mean to sound harsh- but I know how hard this is- I also know it can get better

It took us about 2 weeks to see concrete results... Hang in there. Bad news is at age 8 she can't stay on long term- for us it worked while on it, but did not maintain when off. At that point we did steroids, which helped longer term. Just an FYI for something to think about. Also- our doc recommended calcium supps AWAY from mino dosing-

I have been against hiding meds in foods ( doctors have suggested). We have had eating issues- so couldn't go down that road. My kids learned to swallow young w/ probiotic pearls. If fear of choking- may not work. I guess I would do the medicine dropper route. Meds, IMHO have to be where you hold the line. Good luck- it's not easy!

Yay! Mino is the best antibiotic for brain inflammation. We have seen it make a difference! Couple that w/ steroids ... A good plan for pandas- Fingers crossed!!

Beerae22- I have seen your posts, and I think maybe we spoke a while back. I have two daughters with pandas- I can't help commenting that if your daughter has PANDAS, IMHO you really need to seek immune dampening treatment (steroids, IVIG or PEX), if antibiotics haven't worked...

I saw this one, and the previous. While there is no pandas mention, I liked the in depth depiction of CBT. And, it is always nice to see you are not alone. I was happy to see the kids are doing well, anything to take the stigma away from OCD is good in my book.

There is a high incidence of pandas in siblings ( including mine). I think it would be more unusual to see both non pandas ocd and pandas in a family. It took us a while to admit/ come to terms with pandas in our second daughter ( our oldest actually)- but eventually things worsened. A lot of suffering can be spared with fast and aggressive treatment- so I wouldn't waste time in consulting a pandas doc.

Ellen- my thoughts are always with you and your son. Sending you a PM.

Sorry your daughter is still suffering. For my girls, pandas is clearly an autoimmune disorder. We typically do not see a resolution without immune modulating treatment (ie steroids, plasma pheresis). The sooner we treat, the less symptoms to recover from, the less learned behaviors. I would strongly suggest an aggressive pandas doc, who is willing to treat with these methods. OCD is greedy, what happens if your daughter refuses boost? You need a doc that could immediately hospitalize her- but who also understands pandas. I will PM you a suggestion.

Has she been tested for lupus?

Get them in touch with Dr T- I think he speaks Italian, he may even have a contact in Italy, I am not sure. Also, have they seen the Turkish (I think) study of four adult men with a pandas like illness treated with PEX? Someone on here must have a link. Did I hear at some point that Dr K has connections to Croatia?

We use source naturals sublingual drops from Amazon. Works wonders for sleep. All our docs approve. Start w/ lowest dose (.5mg) so you can use lowest effective dose.

Apparently, from a doc, the interior control of holding/ signaling urination is in the basal ganglia, which is the portion of the brain affected by pandas.

mpatti- Both of my girls have pandas- so I can really relate to what you are saying. All I can say is that it gets better. First of all, there is a grieving process- there is no way around it. But you will be sad, and angry, and then you will accept ( not accept pandas, but accept that you have to deal with this). It will not be easy, will not be linear- but you will be in amuch better place. You will also learn that you, and your child are not helpless. You will treat this medically, and you will also hopefully learn psych tools. You will see your child beat this, maybe more tha once. You will find courage in their and your strength.

Oh my gosh- didn't know you had an IEP- this is a no brainer! I have heard of 2 types of reduced work: - the teacher lessons the amount and/or the difficulty of in class and out of class assignments. Or -if the child is keeping up w/ the difficult okay, the child works on HW for a specified period of time, and leaves the rest undone ( depending on the child- leaving work u done could also be a stressor).

Philamom- I think reduced workload would be a cry typical accommodation. I agree that you need a 504. I would go to the school armed with a letter that states diagnosis and requests 504. If you have a psych you could also include a list of suggested accommodations.

What are the issues? OCD? Or more?

Hope you have gotten help! I did look at USF's site, and it appears they have extensive experience with food refusal

Has she looked into anti nmdar encephalitis?

So sorry you are in this situation. I recommended Rothman- they are the best at what they do. However, I do not know if they can deal with the "medical" portion, the nutrition tube, etc. I would email Dr Storch there and tell him what is going on. He may have a recommendation. Rothmans program is three weeks, it does take that long to deal with the OCD- she won't be eating overnight. To me, esp with the return of rages, etc it seems she needs pandas treatment (steroids, IVIG, pex)- and I think most have found therapy works MUCH better post pandas treatment. Although I wonder if a doc will do one of those treatments if her health is threatened by the not eating piece. Do you have a doc you are working with? Maybe the doc could contact either: dr Beth Latimer in MD, and Dr Souhel Najjar in NY. They are closely connected to their hospitals and do PEX. They might work with a doc to admit her for a nutrition tube if needed, and then once stable do PEX. Then you could follow with therapy at Rothman.