dabel

I asked Dr.K this same question. He told me not to do it. He said that the risk was too high and it could cause a problem for my son. I do not know if he feels this way in general but he did for my child. As it turns out we all got it about a week and a half ago. Yuck!! DeAnn

Bronxmom, Just to clarfy. My son does know that these thoughts and acts are indeed a problem. What he is concerned about is losing himself. He fears that his core personality etc will be changed. I feel for you. I used to look at my son in the past and wonder where this would lead him or us also. I still wonder this. I pray that this IVIG works - if not (not to be negative) my son will likely end up dead (by his own hand) or in prison. The mere thought makes me sick but sometimes I have to face this so I know why I am continuing to fight the fight with all I've got! As far as myself having OCD I have never experienced it. I am sorry that you had such a tough time for years but I guess one good thing is you can relate to your child. I am compassionate etc but I can not imagine having this problem. I wonder if this is why he writes? I hope not. That is very interesting that after pregnancy you no longer had this issue. I guess that treatment is out of the question for my son. ha ha DeAnn

I am new and this may make me look stupid. I am the mother of the boy not wanting IVIG. Our family got the flu and I sent my son to my mother's immediately so he would not get it. Well , he did get it - 104 fever,headache, etc. I thought since it was a virus there was nothing I could do. He had just started 875 Augmentin twice a day from Dr.K (we are lucky to get him to take it once a day). Now I am just waiting for the you know what to hit the fan. It usually hits after not during illness. I am hoping we can dodge this because he was recently on steroids. Should he increase his abx when he gets a virus? Sorry I am new to this way of thinking.

That is so sweet! I want to thank everyone for your input and suggestions. It really helps to know that you are all out there! Being a parent to one of these children can be very lonely in that no one can really relate to you. I know that most of you can! Buster, I wanted to let you know that we have had a psychiatrist for our son. I am not real popular with him right now because he bucked at this diagnosis even though he was the one that brought it up (and missed it) a year ago. He just wanted to raise this drug and add that one etc and I wanted to get at the root of the problem. We have also had a few pschologists involved and none of them knew what to do with this kid. It has been very frustrating! I am so glad that your daughter is doing well! This gives me hope! Peglem, Do you have a link to the sites that you would recommend or should I just google it? I suspect that my younger son had a brush with PANDAS as well. He lost his speech like your daughter and has bilateral brain damage. The neurologist thought he must have had encephalitis that went undiagnosed. Most likely viral since he was given abx. We are lucky because it did not have a big affect on his cognitive abilities. As a matter of fact he has just been identified as a gifted and talented student. It did however affect his motor skills. He has been left with ADD and since he is not mean like his brother I did not suspect anything was wrong on these lines. After hearing all of the stories here I am sending a blood sample to Dr. Cunningham on both of the boys. Did your daughter regain her speech etc. My son has been in speech therapy ever since (7 yrs) and is doing well. I guess I did not realize that PANDAS could cause this but now I wonder if that is not what happened to this other child. He changed over night! The immediate symptoms are very similar but the long term residual is quite different. I hope your daughter continues to improve and that you get the treatment she needs soon!!! Manda, Your daughter is a peanut!! That was very touching and you tell her that I will tell my son what she said. I am sooo glad that she is doing better. Did she get worse after IVIG? I know it is part of the journey but quite frankly it scares me. Things can get very bad here at times and to think they could be worse is not a fun thought! I know there is hope which is more than I have had for years. I pray that each day will bring more healing for both your daughter and your family! Melanie, Thank you so much for the offer of your son talking to mine. I will keep this is mind. How is your son doing now? Ellen, Your story scares me. I was told that my child needs two vaccinations recently. My gut told me not to mess with his system until I had things figured out. This was right before he was diagnosed with PANDAS. Thank God I listened to my internal voice screaming at me - DON'T DO IT!! I think he would have crashed like your son. Has your son regained his skills, interests, etc? My son loved to read - not now. He loved chilling with his friends - not now. I could go on but I know you know what I am talking about. Can I ask why he has such a hard time with homework? My son had an insatiable thirst for knowledge before and now he has such anxiety associated with learning it is crazy! Getting him to do homework is painful - you can feel the anxiety radiating out of him. I don't get it but it is real. His aversion to school is unbelievable and has no good basis. I hope that your son makes a FULL recovery!!! Again, thank you all for your kind words and help. If anyone else has any ideas I will take all I can get. I have to get him on board here. I don't know how I could drag a 130 pound kid that is taller than me into the surgery center to have this done. For those of you whose children have rages you know what I am talking about. I can't wait for us to all plan a - Oh My God They Are All Cured Party!!!

Hey Judy!! I am so sorry to hear that you had a rough day. I think about you daily! Hopefully you and Diana can put something together for this guy and you will swing him your way and get the treatment your little guy needs. I am always here to chat if you need me. Hang in there - I know it's rough! DeAnn

I am pretty new to this forum. My son was diagnosed with PANDAS a couple of weeks ago by Dr.K. Just a little background on my child. He became aggressive, banged his head, poor moods, crying etc at age 2. We had issues on and off but nothing that we could not justify - oh, it's the terrible twos etc. At age five he had a strep infection in his rectum. He was put on abx for a week and it cleared up. After one week it was back so another round of abx. When we went for his recheck they suggested he get his 5 yr vaccinations. Shortly after this he crashed! Extreme aggression, depression, paranoia, bed wetting, sleep problems, sore legs,horrible headaches, pale, dark circles, etc. He never developed tics. At this point we started to hit every kind of doc we could think of to help our child. He had CT's,MRI's, EEG's you name it. None of the doctors could tell us what was wrong. Finally one said all he could do was to offer us antipsychotic meds which I declined. This episode lasted for a little over a year. We thought we had nailed it - we had started him on an intensive nutrient therapy, found out he had some food allergies, pyroluria, yeast, etc. Things went okay for awhile. He started school at 6 because he was too sick at 5. The first couple of years of school went okay. We had issues here and there but nothing like we had before (we would have to restrain him for hours daily - some times several times a day etc). He missed a fair amount of school but for the most part was functioning. In second grade, age 8, he got sick. Shortly after he started slipping again. He ended up inpatient due to being suicidal. He missed from October to April of second grade. We ended up putting him on Prozac which did seem to help for awhile. The next couple of school years went okay. We had bumps here and there but again nothing like we have had. Other parents might have thought it was an issue but for us it was nothing compared to the behavior in the past. The summer before fifth grade (2008) he got a staph infection. The infection got pretty bad because my mother had him and thought it was just poison ivy. He was put on abx. By this time I had figured out that every time he got sick - especially if he was to the point of needing abx - we would develop a problem. Sure enough a short time after this infection it hit. He ended up hospitalized because he was homicidal at eleven years old. The psychiatrist had never seen a child like mine. Thought it might be the Prozac so he took him off it and put him on Abilify (which did nothing). One of the psychologists mention PANDAS to the doc. He checked the ASO which was 400. I was told that it was elevated but not that high. He felt it warranted a recheck if these problems would arise again. This is the first I had heard of PANDAS. I read about it and thought my kid didn't have it because he didn't wash his hands 100 x's a day or have tics. How wrong I was! He was medically released from 5th grade and we have not been okay since. Sixth grade started and I hoped that he would be able to function but I was wrong. More homicidal stuff came out and I took him in to have his titers checked. They were both high (ASO - 400, Dnase 1590) and we ended up down at Dr.K's office. Since he is so old (12 yrs), has had this a long time, and hit puberty early (a couple of years ago) Dr.K suggested we do IVIG ASAP. We are scheduled for December 3rd and 4th. We did a steroid burst and had good results. The affects of that are now gone and his bad thoughts are back. Sorry for the big long story but I wanted you to have the background here. My son is a very bright child. He has ceilinged out on most of the tests that he has been given so we don't really even have a true IQ on him (not that I care), he is a gifted writter and artist, and generally excels in all areas of school etc. I tell you this not to brag but to tell you what type of kid I'm dealing with. He is truly like an 80 year old man in a 12 year old body - WAY beyond his years. So, given this intelligence etc wouldn't you think that he would want to get treated and get better? I wrote all this to get to this one point. The kid does not want to cooperate and take the abx and he does not want to get the IVIG treatment! He is afraid that it will change who he is. This is something that I had never even thought of!! I assumed he would be all excited! When his "bad" thoughts were gone due to the steroids he said "Mom, the problem is now I just feel nothing." He has lived with these intrusive thoughts for so long that he does not know what to think when they are not there! How sad. He did feel happier and bouncier and I am trying to convince him that this will not change him but it will allow him to be who he is supposed to be. He thinks if we put "other" peoples blood products in him he will change and will lose the things that make him unique. He thinks he will no longer be able to write the way he does etc. Have any of you with older children who understand the process had this problem? If so do you have any suggestions on how to convince this kid that he will not lose the gifts that God gave him - he will just be able to fully enjoy them. Thanks for your input! DeAnn

It's from this website http://onibasu.com/archives/am/236560.html, a 2008 post. I just wonder if this kid has PANDAS?? It's pretty typical of PANDAS kids to improve on advil (motrin/ibuprofen). And another: Hmmm...great on antibiotics? And the response was weird too... And why do they keep calling strep a virus? Strep is a bacteria...and what are they even talking about??? I just wonder how many "autistic" (and "bipolar") kids are out there that happen to get better while on antibiotics and motrin. Ughhh. This is interesting. My best friends child is autistic. Just the other day she mentioned how when her son has a fever his mind is clear as a bell. Like a normal boy. Once the fever goes he slowly slips back into the fog. She says if a child can be normal at any point then there is a normal child in there. She just has to figure out how to get him out for good! DeAnn

I agree with the others here. My child has gone 10 years with this. I wish I would have caught it earlier! I just received my test kit today. After reading these posts i think I am going to have one of my other chilren tested also. Do a lot of parents go ahead and test other siblings? DeAnn

Faith, We saw Dr.K a couple of weeks ago. For him an outline was sufficient. Although, he did say my son's case was so classic it was almost boring! Funny - no doctor in the past found him boring! As a matter of fact none of them could figure him out when I did spell everything out. Classic case missed for so long! Sad! We have to get the word out about this so other children and their families can get the answers and treatments they need in a timely fashion. DeAnn

My child's symptoms increase every time he gets sick! It does not matter if it is a cold or a raging staff infection. I do have to say that the intensity does vary though. His last big set back came after a pretty bad staph infection. This occured August 2008 and we are just recovering now!

i definitely believe it's related. this year, he was up for a 2nd chicken pox vacc which i refused . smartyjones, what age is your child when they were do for the second chicken pox vaccine? and how did you go about refusing. I think my son will be up for that next year, can I just say no? thanks Faith Hi Faith, I was just in with my son a couple of weeks ago. The dr said he needed a chiken pox booster and I refused. This was just before he was diagnosed with PANDAS but my gut told me not to mess with his system. Boy have I learned that my mom was always right about listening to your gut! I can sign a waiver for school as the other mother mentioned. I am in WI and all states are different. I have been told that there are not many states that you can refuse but I would look into it. DeAnn

Hey Judy - this is DeAnn. I totally understand and share your feelings! As you know we went through every type of doctor we could think of to find help for my son. Our story is a little different in that the doctors basiclly said that my child was an enigma. We had some different diagnosis (food allergies,pyroluria,zinc deficiency,copper/zinc imbalance,some heavy metals, etc.) but even with those issues being addressed we continued to have problems on and off to varying degrees. Even the clinic that treated him for those problems said he was their most difficult case and there was only so much they could do. After he was inpatient last year the psychiatrist kept giving me these canned responses to his problems. I told him about the horrible nightmares and he would say that it was a sign of being in a manic phase. I would ask why my son would be fine for awhile and then crash - he would say that bipolar kids cycle but yet my son didn't fit the bipolar profile. When I was just in to see him after we were diagnosed with PANDAS he said well he doesn't have any facial tics so.... This is also the guy that wanted to put my 11 year old child on Lithium!!! He reserves that for those with severe mood disorders. This is also the guy that looked at my sons ASO levels a year ago and said that they were not that high.....when we bring him the results now he says it's not PANDAS! He suspected it a year ago but now it's not! Now he says that this may all be the beginning of schizophrenia! Oh my God!!! I am sooooo glad that I refused to put him on Lithium (it fries your liver and brain) and kept on searching! I am sad about all the things that my son has missed too. He has been living with this for about 10 years! PANDAS affects the whole family! My other children have thought that he is just bad etc. To be totally honest there were times that I wondered too - although I knew that something was wrong! It is also sad that these kids know they are not "normal" and want to be so badly!!! How horrible it must be to think about killing your friends and family, ruining everything that has ever been special to you, etc. I guess those of us with the older children have every reason to be mad, sad, and frightened! I now have a 12 1/2 year old child whose brain has been attacked for the last 10 years and now we have to move ASAP because it might be too late! Judy I guess we need to be thankful that we now know what has been causing all of this and that there is hope! I am also thankful that I found you and the others here so that I no longer feel alone in the world and that there are many out there that can relate to our situation. I am rambling and did not plan on it but I am mad too!!! I think of you daily and hope that your upcoming appointments will move you closer to a cure for your little guy!! We have to focus on the future as we can not change the past. Our kids now atleast have hope of having a somewhat "normal" life. My son has his IVIG treatment scheduled for December 3rd and 4th. I pray it works! It will be the best Christmas gift ever!!!!! DeAnn P.S. I just received my test kit today. I have to wait a little bit though because we just finished the steroid burst and that will lower the numbers.

My son finished his 5 day steroid burst yesterday. I was not expecting to see huge changes as he (THANK GOD) is not in a real bad phase right now. Here is a summary....Day One: He felt mellower both mentally and phsically. He felt bouncier and happier. Still had some "baby" talk type stuff and moving of his legs. Day Two: Kind of hyper but not too bad. Still had the talk and busy legs. Had a lot of anxiety when we did some school work. Got a bit edgy in the evening. Didn't want to go to bed - you see that inner frustration. Had a hard time falling asleep and woke up quite a bit. Day Three: His leg movements were more. Tired and not as hyper. His mood would flip like a switch all day. When he went to bed he cried a A LOT! He was just an emotional wreck! Later he said he had a headache and was hot. Maybe a little over tired from not sleeping well the night before. I got worried at this point because I thought he was supposed to get better on the steroids! Day Four: He felt good! He said his bad thoughts were 65-70 % gone! Went to a birthday party at a bar with a band ( grandmas 65th) and he held up well! He usually can't handle the chaos. All in all a very good day! Day Five: Fantastic day!!!! Says thoughts are 90-95% gone!!! First day off the steroids is today. Things are not so good. Had extreme anxiety when trying to do some school work. You can see and feel the inner errr! He says that the thoughts are not back but that he just feels nothing. Should I expect a big ole crash here or what have you guys experienced with this? Oh, my son is 12 and very recently diagnosed after having this for a LONG time! Has horrible rage issues and terrible intrusive thoughts. Not to mention the fact that flattly refuses to go to school! We are planning on doing the IVIG ASAP. I can't wait! Thank you in advance for your input on this. Just wondering if this is normal and if I should brace myself!!!

Thank you for the info. Unfortunately I have no doubt in my mind that my son would do these things! It is only a matter of time. He had a psychological profile done when he was inpatient and they came to that conclusion also. We almost had to get a CHPS order! That is were the court gets involved because there is such a danger. As it turned out he came home and did not do well here. The psychiatrist felt it was too dangerous for him to be in our home and he spent almost the last year at my mothers. He has been home now for about two months. Things have been bumpy but he is on an uphill swing. I know this is temporary but I am going to enjoy it while I can. I just want the IVIG soon and pray that it will work!! Dr.K did not mention putting him on antibiotics before or after the treatment yet. DeAnn

I hope things continue to improve for your daughter! One thing that perplexes me is that the only strep infection that I am aware of for my son was when he was five. I have since figured out that when he gets sick he slips backwards. This could be from a virus or bacteria. The episode his still recovering from that occured over a year ago started with a bad staph infection on his feet. It is my understanding that the immune system just gets messed up and many things can trigger the problem. Your story gives me hope! DeAnn

Good question. I was wondering the same thing. I just started a steroid burst today for my son. The swine flu is going around and I wonder if this will leave him more suseptible to this or any other "bugs". My child slides back with any illness - not just strep.

Faith, My son was just diagnosed last week. We went to see Dr.K in Chicago. My son has had this for a long time. He is twelve years old and crashed at 5 but doctors kept missing it. I believe he has had this condition since he was 2. He does not have TICS but has the OCD. When he was 5 he became like a rabid animal virtually overnight after a rectal strep infection and 5 year vaccinations. He has been inpatient twice. Once at 8 for being suicidal and once at 11 for being homicidal. When he was in a year ago they missed this. The doctor had never seen a child like mine before and the psychologist suggested it minght be PANDAS. They checked his ASO and it was 400. The doc thought it was elevated but not extreme so it warranted checking again if we ran in to another problem. He was medically excused for the entire school year last year and is still recovering from this bout. He made some homicidal comments again and I thought what the heck I'll have the strep levels checked. His ASO is 400 and his Dnase B is 1590. This prompted me to take him to Dr.K. Dr.K feels we are up against the clock because of my sons age, the fact that he has had this so long without treatment, and that he hit puberty a couple of years ago. The doc doesn't want to spend the time trying long term antibiotics as he feels it won't work and wants to head straight to IVIG. I feel bad because I kind of looked into PANDAS last year and dropped the ball. I didn't fully understand what OCD was - I thought it was people who wash their hands 100 times a day etc. which is not the case with my child. He has the intrusive thoughts etc. There have been times that things have been relatively normal around here and we have thought that we had it licked and then BAM it's back! Now I understand why. I'm really concerned that he is too old but I'm praying for the best. DeAnn

I have a quick question. My son's dr wants him to do a steroid burst before we do IVIG. We started it today but his symptoms are not that bad right now so what information will this really give us.