dcmom

I am considering...

Sent you a pm w/ a question!

Love this!

The antibiotic also has anti inflammatory properties- although I am not sure how a once per week dose will do anything- that is likely not enough in any case.

When my daughter was about 6, she began to stutter, chew her hair, and chew her sleeve. We ignored it all, and it went away within a few months when she healed from pandas flare up. She has had additional flare ups, none of these symptoms returned. We have noticed, in times of pandas flare ups, that gum can be a mood lifter!

Ophelia Is there any way to fight for plasmapheresis? It really is the gold standard treatment- and will help u really see if inflammation is your main cause. Have you tried high dose IV steroids. (Solumedrol). I am not familiar w/ your other health issues- but it helps w/ pandas and other autoimmune. Lastly have you tried SSRI (prozac)? specifically starting with a super low dose 5mg and titrating up extremely slowly. At a very low dose 5-10mg it may at least help w/ mood. I am suggesting these three things because they are what have helped my two pandas kids- Also- if u are near FL- intense ERP at rothman center at usf is only therapy that has made a difference for them.

Beerae- I completely agree w/ you. We have had two types of therapy. 1- we have tried several local therapists over the years. Meet w/ them once a week and talk. Usually somewhat helpful/ supportive- but after a few sessions more anxiety and depression causing than helpful. 2- intense therapy at USF- meet daily for 45 min- for 5 to 15 days. Not as warm as local therapists maybe- but less "talking"- mostly in session exposures- with MAJOR tangible and lasting results!

My sister- non pandas- had them as child . Dry winter weather is not helpful She grew out of it for most part

Our school, like most I think, offers home instruction. Our program was great, and the guidance c tailored it for us. At our school the child is caught up w the class work with weekly sessions, and given work @ home. If u r planning to transition her back 2 school, this works really well! We asked for a very sensitive teacher, and she was willing to work at the speed of dd capability. (Which initially was just reading to her) This is free, but did require documentation from doc.

Steroids have worked amazingly for us- steroids cause side effects of difficulty sleeping, irritability, anxiety and increased appetite. We have had times where these side effects make everything look worse. For us this only has lasted a handful of days

NorCal- Thanks and I'm sorry for your sons suffering:-( I'm not panicking yet! Older pandas dd aquires the need to control w/ pandas flares. For us this all seems ocd- like. My kids have had very few rituals; mostly avoidance, and trying to control, and quick to anger. But are def ocd. So far the misphonia issue is mild- maybe comes up once per day. But I am watching! Younger pandas daughter started to have some pandas issues stick between episodes about 2 yrs ago. We recently started her on prozac which has been a miracle! Was her missing piece! Just throwing it out there as you may consider. We started at, and have stayed at, lowest possible dose.

Momwocdson, doc- Interesting and timely for me! Mr dd w/ long history of episodic pandas has just started becoming irritated if we chew, sniff, etc too much/loud. This issue has appeared (it's very mild) along w/ mild irritibity and fatigue. I can tell you without a shadow of a doubt it is pandas/OCD. I agree w/ OCD mom that there is def a manifestation of these symptoms that is ocd. People w/ OCD are very smart and convincing (I live w/ 2)- I would be very concerned w/ validating an OCD by agreeing that a person cannot do ERP, cannot tolerate these sounds. For my dd, her symptoms (like all other pandas stuff we have dealt with) will probably disappear with time and pandas treatment, if needed. Maybe there are two distinct disorders that look the same?

I would def discuss w/ your pandas doc. My pandas dd has done well w/ episodic courses of OCD. We had started to see the some of the OCD was stuck ( tolerable) even when well. We started her on prozac- very low does- and it has been life changing! She has been 110%. I know she will still have pandas episodes, but prozac was a major missing piece from our treatment protocol. I know it's not the same as ADD- but wanted to share- if it's been an ongoing issue I would consider trying meds

I just emptied my mailbox- it was full!

Smarty- Do you have a good psychologist? I have found the school has no clue how to deal w/ anything- I am on both sides as I work as a special ed para. They like an authority (not the parent) to spell out exactly what to do- they also LOVE paperwork. If you could have a psych brainstorm a list of accommodations, and how/when to implement them- that would probably be a huge help.

We have at time seen smal blips due to illness; maybe 3-4 bad days- then they pop out of it. If it were to go longer than that- I would be concerned. We have found that treating quickly and aggressively is the best bet. We do not (have not had to) chase infection; my kids recover normally from infection, but it does sometimes trigger autoimmunity. For them steroids have been the answer. Have you tried steroids before? Any possibility of getting her on a burst on Monday? Hang in there- the good news is, you recovered her before- you will again- you have learned a lot- you will do it faster!

Woohoo Deedee!!!

Nancy- Brag on! We all revel in his success! Please keep us posted!

We have not been doing prophylaxis for probably 4 years and my kids are better than ever! We still see flares, and treat them with minocyclene and/or steroids (IV). We recently added low dose prozac to my younger pandas dd who just could not get to 100%- now she is 110%! We see a very well regarded NYC neurologist who does NOT believe in prophylaxis!

Beerae- Hang in there! I would say summer is likely to make life with pandas less complicated- but it will not really diminish issues. If your daughter is fully participating in her normal summer life and activities- I think you should feel confident for fall. At the same time- with pandas- it is best to have a few plans for what ifs . Use this quiet time to get you and husband on same page, and have medical/psychological drs lined up. I would speak to them about plans and schedule appts for mid Sept- just in case. Seeing your daughters psych with just you and husband is a good way to make plans together.

Powpow- Agree- this has not been issue for my pandas kids.

Yes! I would say we usually average 3/4 year pandas free. My younger one had about two years of continual low level symptoms, but is 100% now. My older went for 3 yrs with no issues, then had an exacerbation- 100% now. We have found steroids (IV) to be a lifesaver!

We have seen both. Sometimes it stirs things up, sometimes no effect. If we see an issue- it is usually after illness resolves. If you see an increase or return of pandas that lasts longer than 2-3 days- I would consider steroids ASAP. Many times we only see a light return of issues (mostly mood related) for a couple of days post- ill ness. Don't panic!!!

Agree with pow pow- steroids are key for my kids- the sooner, the better. (For us).

Beerae- if the mino worked so quickly, I think that points to pandas IMHO. My daughter has done well with mino and/ or steroids- but for the last 2 yrs she has been stuck at a frustrating. 90-90%. We recently added 5 mg prozac (low dose) and she has been holding at 100-110%. I would give the mino a little longer to do its magic- but if she is not getting to 100%, u might consider. We have found it to stabilize and lift mood- which has made everything else fall into place. Rejoice in the progress you have made!