qannie47

Oh dear....I hope you have wine in the house. I am fortunate that my child does not have food issues...what do your resources recommend? Is there anything that he will eat religiously besides chips?

Crush it up and make him a fruit smoothy with lots of honey. I get what you mean about the way he is treating you. It is the dopamine receptors...I am convinced of it. Anger, unreasonable thoughts, rage.....dopamine...not your kid...I think this is the hardest part for us parents who's children express their symptoms in this way. Pretty hard to show compassion to them when it is rejected, coupled with bratty, fresh mouth behavior that makes you want to throw them thru the window. I also get the doubting. I think that is normal too when traditional parenting suggests consequences. Just remember that if traditional parenting worked for your child that you would be doing that and he/she would be fine. But they are not fine are they? Remember that. I, when things get really tough, actually look at my child and deal with him as if he were not my own...it removes the "taking it personally" part of it out of the equation. It helps. It helps for me to see them as a child who is sick, instead of a child who is abusing their parent, which is what is looks/feels like. Then I don't throw him through the window.

Thanks for the smile Dedee!!! I don't know him but even I'm proud!

I am sorry Joybop....what you have experienced is just so wrong.

My personal experience leads me to ask the hard question of schools though....When my ds had his Sept. flare, it was a bad one. The phone calls started. Here was the result: His teacher, the school psychologist, and the principal put vast amounts of energy into figuring out how best to get my ds thru his day. This included concrete game plan with them bouncing off their ideas off of me and asking my input. Everybody asked questions about Pandas and researched it. This led to the principal offering an "open door" policy to my ds in the sense that "anytime he needed a break he could come to his office". If he was unavailable, there were 3 names on a list available to him at all times. If he could stay in the classroom, the school psychologist herself would again stay with him in support, and if she was unavailable, the school made sure that somebody was. The principal himself took my ds outside many times to the playground to give him a much needed stress outlet, or just walked around the school with him. The psychologist went out and personally bought wax candy bottles for him to chew on in class to help him with his vocal tics and shouting out, he was allowed to ask for them anytime he needed them. When my ds had his worst days...and my ds was screaming at all of them that he hated them and that he did not have to listen to anything they said, I personally witnessed both the teacher calmly, and lovingly explain to my ds "not to worry about how today went, tomorrow is a new day". When I voiced concern about how my ds's angry sometimes violent comments were going to affect other parents concerns to the principa, his reply to me was, "don't worry about how the other parents are going to react, I will handle it". My point is this. My childs school did not ask or require a 504 an iep or whatever, they essentially just stepped up all on their own. There immediate response served my ds well, and I believe that if we waited for the paperwork to be done before anything was done, it would have made things worse. This school did not seem to need all this red tape, so I have to question if these other schools truly need this. I do don't mean to undermine 504's, ieps, I am just saying.....

pm rowingmom...she knows a lot about lyme

Kimflow, see LLM's reply in thread "Niastatin for yeast....

T.Anna.....we do aim to please......Ha

IEP's, 504's, FBA's, my head is spinning. What I find truly sad about the elephant in the room is how much bureaucratic red tape and hoops that parents have to go through in order to have their child's needs met. Our institutions have all become so buried in the need to create paperwork before anything meaningful can be done to help a child that It appears that the child, whom is the POINT, is getting lost and neglected in the process.....

Yes. Just yesterday I took my 8 year old twins sledding. For their b'day I bought them 2 new sleds that took the form of snowmobiles. (awesome). They are quite sturdy and probable weigh 8 lbs. Watching them I was reminded again of their greatness...and how much they had emotionally grown. My B (non-pandas), suffered years of internal anguish at the thought of putting a shirt on his hyper-sensitive body. Taking a shower and having to let water run down his face and body was almost too much to bear. His fingernails drove him crazy because he could feel the whites make contact with everything so he often ripped them off down to the quick, which inevitably caused him more pain. Loud sounds, learning to read in a very busy classroom? UGH. My B has conquered and is well past most of his sensory issues. Yesterday I saw how those troubled days have served him so well. While other kids were crying and moaning about the difficulty of dragging a sled up the hill or a wipe out. B was not crying or moaning. He was thriving. I watched him drag a sled that was probably to heavy for him up the hill over and over again. I saw him fall, get up, and fall again without missing a beat. He was exhibiting emotional regulation, perseverance, and embracing the moment with such joy! I truly feel that B already has begun to have a working understanding of prioritizing life's challenges, and delegating what kind of emotional energy he is willing to invest. When one has had to deal with the fact that the appearance of a shirt can cripple one's self....what's the big deal about a little uphill grunt work and a couple of bumps on a cold snowy hill.... Both my kids are "can do" kids. They are tough as nails and have the ability to shine in ways that their peers their own age have not yet experienced. I see these traits emerging more and more in small, but big ways. While they both still have bumps in their days/roads, it has been said to me more then once by teachers, adults, etc....."Your children are going to make wonderful adults, you are not going to have to worry about them". I personally feel it is there early life struggle's that they will have that to thank for.

Did not experience that. It makes sense though that the stress of the IVIG could have brought it on. What did doc say about this?

My husbands sister, age 60, at age 18 went schizophrenic. My mother in-law tells stories about how mean her brother was to her when she was growing up and then there are the other family members that she refers to as "porch dwellers". More schizophrenia??? My mother in law is 87 and does not make connections to anything. However, I cant help but wonder about my husbands sister. When I prompt her about her daughters childhood, I get random stories about how Linda "used to be so fearful!!! She used to run under her bed and hide for hours for no reason at all!!" That reference along with others has me convinced that Linda had Pandas, but never treated....I mean for even common childhood diseases....This is a family that prides themselves on never going to the doctor....of course, they all think I am over the top and a hyper-chondriac with my kids...

Someone Pm'd me today regarding my reply to t.anna's post. I was asked how why I think something good could possible come from our struggles. Because I feel so strongly about these feelings, I wanted to share a bit of my personal story with all of you. Here was my pm reply. Well, first, just today, when I was sitting in my car waiting for my kids to get out of school, I watched some younger kids frolicking in the snow with carefree smiles....acting just like the 5 year olds that they were. Yes, I always become contemplative and a bit envious when I look at their parents and I think, "you have no idea how lucky you have it...". I think that is natural to feel that way. However, staying in that moment offers nothing to me. It just breeds resentment, so I try to move past it. Second. I truly do believe that something great can become of this. I remember when I was 20 yrs. old and I was overcome by a paralyzing depression that lasted for 10 years. I don't remember one day of relief in those 10 years. I used to pray for God to just take me. I also remember watching my parents have to watch their daughter suffer, and I remember that this caused a level of suffering for them that I now know only a parent can feel. After 10 years, I found a way out of my depression. It stole 10 years of my life. I could have been bitter, I could have chosen to morn what I had lost. Friends, laughter, spontaneity, etc.... But as I healed, I realized that my depression had served me quite well. In losing, I learned to truly appreciate what had been taken from me. That was 20,years ago. Till this day, there is not a day that I don't wake up and I am thrilled that I can feel joy. Depression gave me a perspective on life that I truly feel that I would not otherwise have. It takes ALOT to get me truly down, and very little to make me happy. It in fact taught me what is most important in life, and I feel that I am a happier, more grounded person because of it. Beating depression has left me with an inner strength that nothing can take from me. Had I not suffered so much, and grown from it, I am not sure if I would be the person I am today who can wake up every morning and have faith that everything is going to be okay. So what on earth could Pandas have to offer me and my children that could be good is what you ask? For one, it will leave you and your child very well equipped to deal with every day life struggles that to them and yourself...will feel like a cakewalk. Just think, when all of you are finally past this, everyday, when you can wake up without worrying about Pandas...a simple thing like a quiet house will put a smile on your face and warm your heart. In the future, when all is well, and sit back and listen to your child laugh on the phone, make plans with friends, graduate from college....these things, that so many parents can just expect to happen, will feel miraculous to you. These people, who appear to be so lucky right now, will they ever feel the joy that one day you will feel? Will they ever appreciate life and the simple things it has to offer the way the parents in this forum will one day appreciate and hold so sacred? Yes, I do believe much positive can come from negative. I see my ds having struggled so much.. He has been hurt in so many ways by this. I have to believe that while so many days/moments have been so difficult for him that what we don't see that for every day the battle is fought, an inner strength is building, resilliance is forming. I see so many entitled adult/kids who are week because life was so easy. Imagine your child, and what he will take with him into the rest of his life when he/she has conquered this. Empathy, compassion, inner strength, fortitude, self confidence. Many children/adults lack these qualities. Our greatest leaders and Teachers most often come from difficult circumstances. So yes, in a backward's way, I do feel that Panda's, Pans, etc...is a gift. Maybe it does not feel like one right now, but perhaps we will one day be able to contemplate and be thankful for what it did teach us.

t.anna, I am so sorry that you and your ds are in the place where you are right now. Have you ever thought about dr. Najjar? He seems to have been very helpful to Ophelia. I know that you are a strong person and so is your son. You both will get thru all of this eventually. I have found that from my worst experiences in life...have come my best. I truly believe that. You may not have any idea what the "best" is yet, but when you get there, you will know. One remarkable trait that embodies everyone in this forum is their strength, fortitude, and intelligence. Nobody in this forum accepts defeat. It has always struck me that while we all are unique in our own way, we all seem to share these traits. I have to believe that something bigger then what we can see in the moment is at work. I believe that circumstances choose us sometimes, and it is these circumstances that pave the way for a higher purpose. Whether one believes in a higher power or not, if you look at some of the greatest contributions from mankind, they come from circumstances just like all of ours..... Okay....I really am stone sober when I wrote this...

They check neurotransmitter levels in LP? I must re check my results paper work.

Does this mean your dumping the $450 an hour guy? Not wanting to start a negative thread, but I hope so. I really like mdmom's advice..especially the insurance tip...been there, done that....wound up paying. Luckily, we have coverage now because of the O bands...but that is a double edges sword.... Good Luck! You sound like you are really doing your homework and have caught this early....so now I have to say, I just have too, we all have our own individual mantras....please think about IVIG.....the research really does support it.

Sorry to hear that flamom. If there is one thing that we all seem to agree on, it is that for whatever reason, the Pandas symptoms subside during flu-like viruses. The calm before the storm....and then wham. I would definitely start adding the motrin 3x a day. For the the longest time, I rejected this because I just did not want to add one more thing to his day. My counter looks like there is a geriatric patient living here, with supplements and all. However, just the past 2 days, my ds started showing some moderate symptoms, from exposure I think, and so I started the motrin. IT HAS WORKED, AND QUITE WELL!!! So while I don't have any great advice, because unless he has an infection that is treated with higher abx, I would suggest that. I also started implement deep back massages along with some sensory therapy that can calm my ds. I go below each joint, knee/elbow and do a very slow push pull, about 10 times on each joint. I also pull firmly on each finger, about 10 seconds long and hold it. This is very very soothing to my ds. He just loves it. I think it helps with the creepy crawly sensation that these kids feel from the anxiety or who know what.... Hope this helps.

There must be a full moon.....I am ready to slap a 504 on my extended family....and if they don't want to follow it, they can go eat their Christmas dinner elsewhere...

Interesting the the ENT's are getting on board....makes sense. I am inspired by all your posts!!!

Boy, sounds like a very very rough time....Have you tried melatonin? Sigh....so sorry things are so rough right now...

Today, my ds and I saw an ENT doc to schedule a tonsillectomy. I was dreading it a bit, because of course, I was going to have to bring up Pandas, and I did not relish the whole "deer in the headlight", glazed eyeball stare... Guess what? I did not experience that at all! While this doc expressed that she had not yet had a patient with this diagnosis, she was clearly open minded, on board, and willing to help. She said that she was going to talk to Dr. K, our Peds doc and collaborate to make sure that my ds had the best outcome possible with minimal complications... I think that this speaks to the fact that doctors are finally looking/thinking outside of the box and embracing new science...

when did they do the LP? it takes 3-4 weeks for those results to come back...they give you a preliminary opinion, but those tests take weeks to come back...my sons fluid looked great as well at first glance....then they found the o bands.

HUH???? My son did not have high protein levels and they found the O bands....I am confused....I thought this was a routine part of testing of the spinal fluid??? My ds's protein levels were fine....yet they found the O bands....they do a blood serum at the same time looking for O bands...but why not test for them...they already have the fluid? Something is off..

My 8 year old makes similar sounds in a Pandas episode. I do consider them vocal tics...maybe I am wrong. He is also aware on some level that these, and also some of his other symptoms that he brought to school with him has alienated friends.....this saddens my heart, because these are all such great kids....the sounds are classic to my ds...