qannie47

I am smiling for you! We all know how good it can feel to see positive changes! You will find as you navigate Pans/Pandas that each episode can be unique onto itself. Eventually, you should start to connect the dots and find some form of pattern....that takes some time, but it will bring some sense of control to the situation. I am glad that your child seems to have responded so quickly!

This crossed my radar yesterday:
 
In a study published Wednesday in the journal Neuron, the researchers say a genetic mutation that blocks histamine also leads to Tourette syndrome http://www.ctnow.com/health/connecticut/hc-tourette-0109-20140108,0,6843310.story
 
A second study, published last summer, follows the same family identified in the above article
Journal of Medical Genetics Support of the Histaminergic Hypothesis in Tourette Syndrome - Association of the Histamine Decarboxylase Gene in a Large Sample of Families http://www.medscape.com/viewarticle/813254_4 The theory is that people who suffer from tics may have histamine levels that are too low. You need proper levels of histamine to support the methylation cycle. Pfeiffer and co., in their limited knowledge of the 70s, say the same thing - overmethylators tend to have histamine levels that are too low. For reasons I cannot yet wrap my head around, increased folinic acid - and possibly niacin - seem to be involved in the solution. Any geek parents with ticcers with 23andMe results care to delve into this with me? I could use a sounding board. An eye tic is DS's only remaining issue - and it ironically appeared last summer when I adjusted his supplements based on 23andMe results. Prior to that, he'd been tic-free for almost 2 yrs. Yet, the change in supps brought all around goodness in most every other way. So I think I'm just missing a small puzzle piece and a geek pal or two to help me out. (DS has normal MTHFR).

I think that all psyche issues come from something/a physiological cause. I think Pandas has finally caused the medical community to ask just that question. I think that you are on the right track, asking all the right questions.

I know what you mean about the Pandas anxiety. Maybe they will come up with a new "Stress anxiety disorders for adults....induced by Pandas children" Ha...On a serious note, what has helped me a lot after my ds has recovered from a flare and doing well is accepting the reality that he will have another flare. I have no control, or not a lot over that...It helps me to enjoy one day at a time and reduces the pins and needles feeling of "oh oh..is it staring again?" Living like that is horrible. I tell myself, yes, he is going to have another flare someday, and we got through the last one, we will get through another one.....It's all I have to hang my hat on at this point....

I guess there are the trail makers and the ones that just follow them. Thank goodness for our brave doctors who have dared unchartered territory. Truly, they will be on the short list with all those before them, whom have contributed our greatest breakthroughs in medicine.

I guess there are the trail makers and the ones that just follow them. Thank goodness for our brave doctors who have dared unchartered territory. Truly, they will be on the short list with all those before them, whom have contributed our greatest breakthroughs in medicine.

my ds was asymptomatic for strep twice. (actually each time, but we accidently caught previous streps cause my doc always runs a rapid strep if issue could at all be connected to strep. this was prior pandas and is protocol for all kids in office it seems). Anyway, the first time strep was asymptomatic(and not caught because he had no other issues so I never brought him in), he ended up with scarlet fever. Second time, he ended up with Pandas age 6.

what's really frustrating is that this dr does not ask himself what mental illness is. are there many kinds? how is it connected to immune system and how to digestive system? how can it be managed given the complex relation with immune system and stomach? etc.
in my mind, most "specialists" are just that "specialists" and we, Pandas parents, need to educate ourselves to be able to manage our children's care since, obvisously, "specialists" are not going to do it for us.
this is then not to say that my children don't have "mental illness" but that what they have is wastly different than what this dr assume under that term.

Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight.

was a rapid strep done? If negative, these definitely indicate that there was an infection in the recent past...what's up with the doc? You need a new one.

IVIG: Both. Can bring a child out of an exacerbation and in the long term help to mature the immune system in the big picture/long run....They say that with IVIG, a child will still have flares, but as the immune system matures/heals, flares will/should be less intense and shorter induration. Truly, I don't think anybody has all the answers, but this is the best they got.

I'm in definitely. Prayer never really used to factor in my life until PANDAS hit our family. I used to always wish to win the lottery.....not any more. I often visit my local cathedral and light a candle for my daughter and all the other children and families having to struggle to cope every day. We must remember something good will always come from something bad - we now appreciate the good times so much more these days and never take them for granted. Sending you all lots of healing good wishes. x

My ds is having his Tonsils out Dec. 30th. When meeting the surgeon, I was pleasantly surprised at her openness to Pandas. She stated that she was going to research this more so that my ds has the best outcome, (minimize exacerbation), from surgery. She got it right away!
 
Anyway, I walked away pleased, but not sure if it was just lip service.
 
Then today, I received phone calls from surgeons office AND hospital surgical scheduling nurse, both were mainly focusing on his PANDAS! They both asked some great questions, and it was clear that everybody was on board and taking Pandas seriously....!
 
This is what they came up with.
 
IV Steroid post or during surgery (cant remember which)
 
IV Ampicillin before or after surgery (again cant remember) I am tired.
 
ABX 14 days post surgery
 
One night stay after surgery to make sure he is okay....
 
Aside from being thrilled about hospital not rolling their eyes....How does this approach sound to all of you?

Yes, there have been instances of regressive behaviors, including linguistically. Even cases of select mutism.
 
Several children here on the forum, including my son, had behaviors that looked very much like ASD and have even been diagnosed as being "on the spectrum" during PANDAS exacerbation. As he has healed medically and psychologically, however, that behavior set has faded as well, and no one applies that diagnosis any more.
 
As for PANDAS/PANS and "permanent" brain damage, you can run a search here on the forum and you'll find past discussions along those lines. Bottom line is, nobody knows for sure, but there's lots of anecdotal evidence to suggest that it doesn't. That being said, some behaviors that our kids develop for dealing with the higher level of anxiety frequently inspired by PANDAS episodes (OCD, tics, mutisim, etc.) can become "habitual" over time if the exacerbation(s) drag on and therapies aren't employed for helping them find other ways to cope as they heal. Rather than "brain damage," I think of that as those brain pathways being developed, just as they would with any kid, but some of the pathways our kids build during exacerbation are atypical. So as they heal, you have to encourage them and give them tools to build new pathways that are more "typical," rather than relying upon and reverting back to those paths. Does that make sense?
 
You didn't mention how old your DD is, any other health history or what other ASD-type behaviors (besides the regressed language) you're seeing. Perhaps you'll get some more feedback from others here with similar issues or ideas.

as most here will testify, healing is a process not an event. we hope for a better quality of life despite life-long issues. not sure if the issues are going to be ocd or auto-immune or both, but getting our children where the THING does not define them, where they know how to cope, where they can have friends, partners, carreers, etc.
I don't think, however, that they will ever want to have children and perpetuate this to the next generation.
so, yes, healing is the extension of what you define in your post --- you can also call it not getting worse.

I believe in prayer, and I believe in numbers...even if you don't ascribe to a higher being, I believe that thoughts have energy. What you send out comes back. For the negative and the positive. I essentially believe that is how prayer was designed to work.
 
So my thought is that we could create a list of names. Every night we could all commit to saying a quick prayer for each of our children every night. I know anonymity is important here, so we could use our names that we use here in the forum.
 
I will start by adding my name to the list.
 
qannie and ds

Great! I suggest we write these names down on a piece of paper and keep them handy by your bedside or where ever you would most likely have a moment of silence.
 
I am going to nightly ask for a protective energy to surround all of us to provide restoration, strength, discernment, patience, faith, and continued good heath for those who have started the healing process.

I believe in prayer, and I believe in numbers...even if you don't ascribe to a higher being, I believe that thoughts have energy. What you send out comes back. For the negative and the positive. I essentially believe that is how prayer was designed to work.
 
So my thought is that we could create a list of names. Every night we could all commit to saying a quick prayer for each of our children every night. I know anonymity is important here, so we could use our names that we use here in the forum.
 
I will start by adding my name to the list.
 
qannie and ds

My dd7 always gives us a hard time taking meds when she is feeling bad & needs it most! Currently she takes 8-10 pills a day plus probiotics, Motrin, & vitamins when she is feeling pretty good. She would become convinced that she "can't swallow them ... They will get stuck." When she was on liquid it was that it taste bad and I can't do it.
 
When it's bad .... We have to set a timer for a certain amount of time or no media (tv, computer, iPad or electronics).
 
My advice is to get Motrin into him ahead of the abx. Don't reward him for taking meds ... Require him to take meds to access whatever his currency is .... Which sounds like video games. It's critical to his healing that he takes his meds.! We tell our daughter that she needs to talk back to her PANDAS. Its playing a brain trick on her by telling her she can't do it.
 
I know it's easier said then done. Hang in there and good luck!

Here's my tough love answer...not that I don't sympathize with the battles you have on your hands. I do. But look at it this way: Contamination OCD has kidnapped your son and is holding him ransom. It sends you a ransom note and says "pay me with a violent video game that goes against your principals, reward me for making your son say vile things to you, and I'll let him take a pill that's a threat to me, but I'm not too worried, because I'll just send you this ransom note again in 12 hrs and if I can get your son to skip enough doses, I'll be safe and even more in control than I am now" - would you pay a ransom like that?
 
You need to help your son see the contamination OCD for what it is - a mind-controlling kidnapper who will distort reality in order to grow stronger every single time you accommodate it. it is the OCD that's the danger to your son, not the medications that will kill the OCD. I get that the fear is strong. That the OCD is telling him the meds are evil and are contaminated and may kill him. I get that your son isn't rational about it and as a teen, his brain wiring is already not as rational as it once was. But instead of being on opposing teams, you both need to align yourself and be on the same team. Bribery doesn't put you on the same team. it makes you seem like the enemy.
 
I think you'd get a lot out of reading John March's "Talking Back to OCD". It will help you re-frame the problem and help you understand both your role and your son's responsibilities in this battle. Stop begging and bribing him for compliance. Insist on it, not with threats of punishments that mean nothing to him but with natural consequences. "You don't want to take meds that will kill OCD? Fine. If you want to forfeit the rest of your life, if you want to live under the tyrant of OCD, if you want to give up your dreams, your friends, your happiness and you don't think you're worth fighting for, then don't take that pill. But guess what, as soon as you let OCD win, you know what it will say to you? It will tell you you can't play video games any longer. It will be so strong that it will tell you the controller is contaminated. It will tell you that the images on the screen are real and when you close your eyes at night, OCD will tell you the scenes are real. OCD will hold you prisoner. I can't force you to be well. I can't force you to fight for your freedom, for your dreams, for your life. You have to do that. But if you want to try fighting it, I will help you. I will be your coach. But I'm done fighting this alone. Get on the team or don't. Chose which life you want."
 
The book does a much better and kinder job of framing things, but the jist is that you as a parent can't control or fight the OCD thoughts and your efforts are better spent on trying to get your son to see the problem as something he owns and something you will help him solve.
 
I don't want to imply this is easy. It's incredibly hard. But accommodating OCD, paying ransoms, will only make it stronger and more entrenched. I would not rely on motrin to solve this for you. If you can only get one med into him, make it the augmentin. Murphy is right IMO- he needs at least a month if not longer. But I think using the ideas in the book can help you a lot.

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.

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

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.

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.
 
 

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.