JoyBop

I believe there should be a lot of accepted literature on the use if IVIG for Cvid. There is not really any hard data that has been accepted as standard treatment yet for pandas or autoimmune encephalitis. Can you go down the list infectious path? Although many insurance companies are now banning the post infectious diagnosis for coverage of IVIG. M suggestion would be to use Cvid and play down the pandas.

If have to look it up bit I recall it being a combo of two or three abx and an ulcer medication (to stop the bleeding) along with proton pump inhibitors and Zantac. My son was two When he had it and was on 7 meds at the time. You do have to recheck the stool for it after the treatment to make sure it was irradiated.

I was asking about tuition to see if you were still paying while he was out of school. I want implying you should ask for a discount by any means. I think Beth Maloney will give you tremendous support. I am sick to my stomach over this situation and I truly hope that the school does not follow through with their threat. I wouldn't give them any medical information other than a doctors summary and letter that your son is being treated by a doctor and getting the best care possible. Perhaps a letter stating how harmful an institution would be and that the best placement for your child is with his family.

I'm beyond lost here. You have always said how supportive the school is and his the psychologist even comes out to your house to speak with DS. Where are they going with this? I couldn't quite tell from your post. It does sound as though they are trying to do "the right thing" in some way. Who are they to say what that right thing is!? I hope you have a great doctor behind you that is willing to write a strong letter that DS is under professional care and all is being done medically and otherwise to help in every way. I don't think it matters if PANDAs is on the DSM V or not, there are kids in this world who have strange and horrible illnesses that can't be diagnosed for lack of knowledge in the medical world. There are all sorts of cancers and auto immune diseases that have no treatments or cures. No one can deny they are ill. No one can demand that they function perfectly and attend school when they are sick. Your child's is suffering from severe OCD regardless of the cause (which we all know is auto immune mediated) and that is a real diagnosis that is in the dSM V. Given the fact that someone on the team actually had a relative with PANDAS it shocks me all the more that this is happening. You are constantly searching for treatment and leaving no stone unturned to do whatever you can to help your child. This does sound like a case for Beth Maloney. If you email her, I'm sure she would respond. Have you been paying since last Jan for school? Have they been providing home tutors? T. Anna I'm so sorry to hear all of this. Stay strong!!

My thought is possibly, in so e cases yes. If you think about it, in PANDAS the person gets the bacterial infection. The body makes the antibody to fight the but but instead it mistakenly attacks the body instead. That is an auto antibody. An antibody that attacks the self. The ANA as I understand it looks for auto antibodies and can be a sign that there is an autoimmune problem. It can also just be a fluke, or a sign that the person carries the genetic predisposition to an autoimmune disorder, even if they do t have one. If you got tested both times by the same lab with the same reference ranges, my guess is that those auto antibodies have quieted down. I would say there is little chance of simply a false positive test with the ana. If they were able to identify that it was if the speckled variety you know it was actually seen and specified. It sounds line a great sign to me!

I'm not sure I understand all the names and numbers and things you have listed there. But what kinds if thoughts exactly? When they are in an active flare there's nothing in the works that can stop them. Just being close by and comforting them, letting them know they are not alone, not crazy, and he is safe. Different things comfort different children. My kiddo likes light back rubs. Sometimes I can read him books to take his mind off things. Sometimes music with noise canceling headphones with classical or relaxing music. We let our son set up a man cave where he can go when he needs to decompress. Its a fort under a bench at the foot of my bed and there is an mp3 player and crayons and paper under there. Yet other times he needs us to be close. No medications have ever helped. CBT can help when they are well and up for a challenge. As I was writing this I had to stop bc DS had a panic attack over finding a gun wrapper. Nothing I could say or do would stop the intense tears and screams. We don't react with panic, just support and love. If we panic and tet upset the message we send is, wow, there really is something to be afraid off. Don't try to be a fixer, bc the OCD brain will not let you in. Just so what you can to comfort and listen. Change the subject to can. If he falls for it you can give him a job. I just had my son vacuum the good fish crackers he smashed when he was freaking out. That was enough to redirect him. I hope some of that helped or made sense.

Or it resolved due to the fact that the antibodies that were attacking the self were eliminated thanks to abx. Here we have several year ranges. 1:40, 1:80 ect ect.

What ratio was it positive to? The ANA finding is non specific but can give clues. Many healthy people have a low positive and never have an autoimmune problem. It may also be that you took care of the problem that was occurring at that time. You'll never know...but the ANA is not a big deal without a clinical picture of certain diseases such as lupus and the like. My son tested positive to low levels. Speckled as well. No one really bats an eyelash at it, but it is a clue that something is going on. Thank goodness for small clues but sometimes they don't point to answers as is the case with ANA. It's like saying there is inflammation in the system. But where, why? We don't know.

Our DS had a strep infection last Christmas and was treated with a Z-pak. That was when he first PANDAS flare was (SEVERE onset). Unfortunately, now we know that 5 days of Zithromax is not the correct treatment for strep but it does cover other infections in that way. I would definitely ask for either longer course or a different med. KEep in mind that once you are on abx that you can get false negative cultures.

Thanks Jag10, I guess you are right, it was misunderstanding your point. You did get me thinking and researching though. The standard to be placed on an IEP has nothing to do with achieving at "2 grade levels below". I read our government website and it the criteria is for a child that does not make progress, even after accommodations or RTI has been implemented. Im absolutely horrified that any school would use that as a criteria a child would have to exhibit before receiving services. My older child on an IEP tested many grade levels ABOVE average but he still qualified for certain services related to his severe ADHD and sequential order processing disorder. We have been able to prove that he DOES make progress when he has positive feedback and a little additional support. Its my hope that we are able to get him that extra support regardless of what paperwork is required.

Oh, Qannie, Im moving to your neck of the woods!! How amazing! Its too bad more schools arent like that. These things didnt take them any red tape or funds, they simply acted in the best interest of the child. VERY impressive!!! My situation gets stickier all the time. I keep getting the wrong information from our new principal who has no clue what shes doing. I requested that they consider an aide in the classroom. I was told the question was posed to the principal and I will hear back soon. I waited two weeks with no response. When I asked what the response was, I was told there was already an aide in the class at all times. This is so untrue! When I asked again, via email, copying all involved, she simply changed the subject time and time again. When I addressed the fact that my childs therapist had a lengthy convo with the school pych. about making sure feedback on papers in school and especially homework were positive and yet my child is coming home with threatening and negative comments, there was no reply whatsoever. I ended up having to photo copy the paper with the comment (many exclamation points and triple underline in red pen) to the whole team, explaining that this is the kind of feedback we are trying to avoid and that Im hoping this doesnt have to wait until our meeting in Feb to be addressed. Now my psychiatrist has been blown off by the classroom teacher for weeks on end. She fails to make or take phone calls that were pre-arranged via email. Our doctor is now asking directly for information via email conversation, which no one wanted the paper trail in the first place. The principal said she did an "observation" and "was fine" and no additional support is needed. I asked her for a copy of this "observation" since I knew it would not be official. Sure enough, she sat in the classroom for 10 minutes and said he was fine, needed as many reminders as many other children. Then she stated she spoke with MRs. XXX (Not his classroom teacher) and said that she teaches X,Y and Z (when she only teaches my child X...AGain, totally wrong information) that teacher said he needs reminders but is fine. This principal does not understand what she is saying or doing, and all other staff members are no longer responding to emails. We have been shut out! I am leaving it to our Dr. from here on out. IF nothing happens, I will be hiring an advocate as well. I can see that they intend to do nothing for my child, and now that things have gotten heated he will get even less. In the meantime, DS seems to be out of his flare which is fabulous, but timing has not helped our case in point. LEts just keep our fingers crossed that he doesnt flare again and this can all be water under the bridge. Still, it would be nice to know that he was being supported in school.

Insurance will sometimes pay for ld for certain autoimmune disorders. In some states they aren't allowed to balance bill you so you only get coverage at approved dosage.

There are facilities that come to your own home to conduct the study. Its worth looking into. But they do attach a lot of wires up to your child and they would have to be able and willing. My two kids rather enjoyed the whole process and had a great nights sleep at the center. I was shocked when I saw they had hundreds if arousals and significant hypopnea.

3b, great advice. Last time around I was willing to sign and give them a chance because I trusted they for it and would act in his best interest. Not this time around!

T. Anna, Swedos office is very open to responding to people's inquiries. Did you actually ask for guidance or did you just apply to the study? I think its definitely worth a try. We didn't qualify for the IV IG study either bc DS had been on SSRIS. Has changes in meds in the past 5 weeks, and had just started CBT. But we did qualify for her new study which is more diagnostic but you do get lots of testing covered and they will make treatment recommendations at the end. I know they are not accepting kids who have already had an IV IG so it will most likely not be a match for you. But what do you have to loose in asking for help?

Q, very wisely and eloquently said!!! Its true, that that doesn't kill us makes us stronger. I think if the amazing and inspirational people I have met on this journey. I have learned not to take life's little moments for granted, and I have had to relearn the virtue of patience again and again...and again. I think we will be a much stronger and closer family for all that we are going through. Would I have ever asked for PANDAS? No way! we don't get to choose what happens in life, but we do get to choose how we handle it. If our children see us wallowing in misery asking why us? Hiw do we expect them to learn perseverance, faith and strength? There are plenty times I get depressed and frustrated and angry. But eventually I realize that I love my children for who they are and know that this disorder does not define them. And then I think to myself of all the children who have in curable cancers and diseases that will take their lives. We Re actually very lucky!!

I don't know that I have a story that will inspire you but I wanted to let you know how much you and your son inspire me. Through all of this you have exemplifies such grace to all of us. You have always been able to see the bright and beautiful side of your son and I have always admired the qualities that shine through in both of you. While it seems hopeless at the moment, I have faith that it will get better and your son will have the life he deserves. I know that you will stop at nothing to get the treatments he needs, and I do believe that it will happen sooner than either of you think. The fact that your son is still so loving, compassionate, and sweet and has maintained his friendships despite his tragic symptoms is absolutely amazing to me. It shows that he is still there, still strong, and just "stuck". He won't stay this way forever. You have seen him make progress and he will again. Keep the faith! You are doing an amazing job. I also have faith that Dr. T will guide you in the right direction or to the right people. Have you ever considered calling Swedos office? They are very responsive and often offer guidance.

My first thought is that perhaps she isn't getting a good quality of sleep. How is her sleep? swedo is currently making the connection between pandas patients and poor quality REM which is why she is conducting sleep studies and intensive EEGs in her current study. We are participating next month at the NIH. Both my kids had sleep studies and I was shocked to find they both had obstructive sleep apnea. Neither were snorers or terribly restless. Can you go get a sleep study done? Just a thought based on my own experience I don't have any experience with the supplements tour child is on. Perhaps someone else here may come up with a connection.

That's sounds so uncomfortable. Has anyone ever ordered a cystoscope? That's a scope that can look inside for inflammation, ect. My mom just had one done for what she thought was recurrent bladder infections only nothing ever grew out on cultures. It turns out her diet was the cause. Look up foods that can irritate the balder and see if that helps. Of course my first thought was...isn't that a classic PANDAS symptom?

I have two kids with pandas and highly suspect my nephew does as well. I can remember watching him and thinking what odd movements he made to do everything. I now realize he has choriform movements. He has rages and tantrums and has had strep many times brhe parents think he's the most perfect child on the earth so you can imagine how the suggestion of pandas went over.

That is so helpful. I hadn't heard if any of those things yet. My first job was to send them all a copy of his most recent work that came back with some very negative messages on them. The principal called me and apologized and admitted that they were inappropriate. One if our 504 accommodations is that all support staff caring for him, even at recess are to be aware of his plan. The Ed assistant in ELA was obviously unaware and picks on him constantly. I think I finally have their attention. Hopefully he will qualify for services. If not, they will have to amend his 504 to include extensive accommodations and I will be all over them.

Thanks jfaringa. That makes total sence. We have the pandas diagnosis tagged at the end, but all if his other diagnosis are listed first as those are the conditions that we need to cater to. Thanks for the explanation. The psychiatrist will be at our meetings and she completely understands our son. I honestly feel this could be done with a 504 if they would get the right accommodations listed. Many great accommodations were mentioned at our last meeting but they never made the cut. I didn't complain bc I trusted that what was discussed would be implemented. It wasn't. So now we are hoping to get a better plan. Thanks for the explanation Re FBA. Our psych suggested one. Well see how that goes.

Hahahaha. Thanks Q, I totally needed that!!!

Oh come now Jag! Regardless of the cause of child's symptoms, they still must be dealt with in the same manner as a child who has your average onset of these symptoms. It's not my pediatricians fault, or the medical community at larges fault, or the school systems fault. The doctors are taking care if the medical side, and the school has their responsibilities in the classroom. Let's not take things out of context now. I am not blaming the school for any of our troubles and I am not asking for anything unreasonable. I really don't understand why you are attacking me in this way.

You are hitting the nail on the head ! Our school "could" if they chose to have taken care of our situation already. Since they didn't now we have to open a while messy and expensive process that will cost not only money but lots of time from many people. If they had just taken the information they had to do what was right (and what our son was entitled to by law) we wouldnt be where we are now. True, we did ask for a band aide in the meantime, and I would have accepted a reasonable answer as to why that either wasn't possible or what they proposed to do otherwise. Instead I waited over 3 weeks to find out the principal was not even aware of the classroom situation or taking care of her end of business. Now it gets kicked up to a whole new level. Also, just to clarify, an outcome is the direct result of action that was taken. I am a long way away from an outcome, but I am doing my best to avoid the possibility of a bad one. As far as process goes, my child is being tested. It will be interesting to see if he is even able to get through the testing at all. My guess is he will do much better in one on one as he does very little by himself or in a big group. I have no doubt that they will accommodate him in their testing as much as possible to paint him in the most capable light. That is why I need the functional behavioral assessment as our issues aren't just "educational" but they are sure to become that if we allow him to accomplish nothing but disruption for an ongoing period of time.