JoyBop

I will be there as well! Promise to share earth shattering notes.

Bhenry thank you...VERY helpful

You should be able to mail the kit from your own state, they are just not able to ship the kit to your MD address.

Have many people here gotten IVIG approved for non immune deficient diagnosis?

For what its worth, anyone can have any kind if reaction to any medication wether its listed as a side effect or not. The side effects listed are just thr most common side effects noted under their observation process. I myself have been completely sedated for 24 hours straight on medications that don't list sedation of any kind as a side effect. I have no experience with the particular drug you are mentioning here but did you change up anything else at the same time as stating that med? Its always good to rule out other possible reasons for the symptoms you are experiencing. Other times its a dosing issue. Some people do well starting low and moving up slowly while others need to start out at therapeutic doses to see a difference. Have you spoke neither you doctor a out these side effects? Maybe the dr would be willing to adjust the dosing to address the problem. Maybe you upped it too quickly? Maybe you could tolerate once a day dosing for a while and then try twice a day? Some medications used for OCD can be activating and cause all of the symptoms you mention, but again I didn't look up the class of meds you are referring to. The bottom line is, you have to find what works for you. Sometimes you can tweak things to give the med the greatest advantage to help, but other times you just can't tolerate a particular medication that the rest of the general population does t seem to have a problem with Good luck to you!

Again, I spoke personally with several doctors offices at children's and they do claim an interest in PANDAS and say they have nothing to do with that one isolated case.

I have not walked in your shoes but from an outsider perspective I would say that at this point the benefit of antibiotics outweighs the risk of c-diff. If it were me I would work with my doctors to come up with a plan to very slowly reduce the aug to find that sweet spot and keep him there and let him enjoy the remainder of his high school years pandas free. You should consider contacting Beth Malloney as she has spoken about that very topic as her son Sammy was in the same boat. You can listen to her speak on the first episode of pandas radio if you haven't already. I've heard she responds to people and I think she could give you a great deal of insight on this particular subject.

Mass general has some outstanding pandas docs. I've been blown away by the compassionate and professional care my kids have been receiving from these very busy, highly sought after doctors. There are some good docs at Boston children's that do great PANDAS despite the bad rap they got from them wray case. I spoke with a few of the people from the office and they are starting to treat PANDAS patients and insisted that the situation in the media was an isolated and complicated case. Still, I cancelled my appointment at children's when I got the appointment at mass general. We see psychiatrist, immunologist, infectious disease and ENT there and they all soecialize in PANDAS. The pandas clinic isn't officially open yet but I have a feeling we are already a part of it, or at least the pilot program for it.

Thanks for the info. We definitely plan on keeping her on abx for a long time! Her vocal tics are coming back but everything else is perfection!

That's such great news!!! I hope it continues!!

And congrats that he is doing so well!

Deedee that's awesome!!! So he stayed well after the T and A? Thanks for giving me hope that it sticks!

We are set to go through all of this testing with a pandas immunologist in November. I'm don't mean to hijack this thread, but wonder of those that have primary immune deficiencies, are your kids sick frequently? My kid is hardly ever sick but has had weird auto immune issues all his life.

Well we got our culture results and there were many gram positive anaerobic bacteria found. The dr said it was consistent with strep. We are beyond thrilled that she is 100% cured and are praying that it holds. Just thought you would all be I retested in hearing some hopeful news...

Steroids have many potential risks, especially the longer and more frequently they are used. Here's an article to read http://www.mayoclinic.com/health/steroids/HQ01431 I don't know any ring a out Lyme at all so I can't help your there. I hope you are able to find answers and relief soon!

Just to let you know, there are some really wonderful, compassionate, on the ball PANDAS docs out there. Don't give up! It does sound like this one is t the right office for your needs. I hope you can get in with some one else soon! That's very frustrating!

Is he depressed?

Sounds a little like a normal teenager but perhaps he should have a neurologist check him out to make sure he isn't really having some seizure like activity. My teenager (ninpandas) tends to shut us out sometimes and retreat to his own works as well.

4nikki in that case you should have the school focus on the intermittent OCD and anxiety symptoms of "pandas". They don't have to know about the autoimmune part bc the kids still need to be treated for and accommodated for their symptoms. I have told our school about the pandas but make them outline a plan to help him when OCD. Anxiety. Hyperactivity and impulsivity strike. I let them know at times he will be well and other times he won't, please see our doctors notes that this is dependent upon a medical disorder. That's all they need to know. That, and to inform you of strep outbreaks in school. Sometimes people are hesitant to say my kid has a mental illness bc there is such a stigma attached. It sounds better to say autoimmune disorder, but at the end of the day, it causes much less trouble and is far more direct to name the visable conditions the school has an obligation to teach to.

We have so been there and done that! Believe it or not my 4 year old was the one with the sexual thoughts. She was a chronic masturbator and was obsessed with everyone else's private parts. And she knew even at that you g age that this was not OK but couldn't help herself. My 8 year old had the obsessive "bloody murder" thoughts as he called them where he saw bloody dismembered bodies. Both are a silent but awful form of OCD. My son was on Prozac before we knew about pandas and it made him one hundred times worse and he had the most bizarre and impulsive behavior. He acted like an animal, literally, running on all 4s like a jaguar ready to attack us. He also hit his dad and I at night, unprovoked and with odd grimmacing faces. Antibiotics helped tremendously! He had to go off Prozac ASAP bc it made everything worse and even suicidal. After the abx kicked in we have started him on Zoloft. First at 12.5 and just recently doubled to 25 mg. these mess can be somewhat activating and add agitation to the mix. To answer your question YES this sounds just like our kids PANDAS. There are other causes such as Lyme or mycoplasma. Also you should have the strep nlood titres checked. Abx can help but in our case has not been a 100% cure. DS is also on intunive and Clonadine to help with impulsivity and hyperactivity. Things are probably 70-80% better and we are fighting through the eat with CBT and meds. Dd is currently at 1000% after tonsillectomy I recommend you see a dr who is familiar with pandas and see if you can get at least 6 weeks of abx.

Wow, I had three kids go through a t & a and recovery was quite difficult. Great to hear that some don't suffer! Its not the anesthesia you want to ask about, its the pain meds. They have outlawed many of the tried and true. My daughter had to get lower dose in surgery due to a low muscle tone diagnosis. I'm not sure if that had anything to do with how horrendous her pain was post op. In any case, its best to be prepared for a rough go and it might just be a piece of cake! Thanks everyone for sharing in our joy!

In not from the South so maybe someone will chime in. PANDAS docs are few and far I between so it may be that there are none that are known if in that area. Most if us do hVe I travel to get to a doc who's really experienced. But hopefully someone will chime on? Or she will be able to work with one of their existing docs. Sounds like she's already getting some treatment for him.

Connie, what for you mean about ERP? Are there scenes in that book that would lend itself to a desensitization? Thank you all for the suggestions. I'm going to write them all down. Also I will see how he feels about the kindle. We are always limiting his screen time so the dreaded reading he is for Ed to do search day might just become more exciting.

Gannie you said that far more eloquently than I ever could have. I share in your sentiments exactly!

Bridget it s so worth it! Yes the recovery is awful but even while in terrible pain I saw the twinkle in her eye and knew she was back. The thig you will want to ask is if the dr will culture the tonsils to see what infections may have been hiding. The second is medications. Much has changed recently when it comes to post tonsillectomy pain. They no longer give codeine as several children have died from it. The only med other than Tylenol(which does nothing!!) is oxycodone but it is risky for anyone with central sleep apnea so you will want to discuss the pain plan. They also give pain meds during surgery and you will want to kmow about those as well, even though the child will be itubabated. We participated in a sleep study at mass eye and ear. We were given a mystery medicine post op which was either Motrin or Tylenol. It could only be given every 6 hours and was a study not on pain management but bleeding post to sillectomy. These docs believe Motrin is as safe as Tylenol. I can tell you I think we had the Tylenol because the pain was horrendous. She could have had Tylenol every 4 hours but the study only allowed for every 6. As soon as the 8 th day passed and the study was over I gave her Motrin and she slept through the night for the first time. Thank goodness for the oxycodone which we reserved for the wee hours of the night when she woke thrashing in pain and med time was hours away. I also recommend you stay over night off they will allow. Its a horrendous night and its a godsend to have iv fluids as they can not swallow a thing that first night or so. My DS was a trooper and we are so happy to have her sweet self back. It was worth it even if it doesn't last. at least we know that no matter how bad either of our kids may get, this has proven to us that they are still there and WILL get better. There is always that fear in all of us that we may have seen the last of who we once knew. Now I can put that fear to rest, celebrate the good days and get through the bad.