blakes_mom

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.
 
 

Day 9 on abx and my son's tics are almost completely gone. No OCD or ADHD behaviors either. We haven't had him this good since before he was diagnosed. I don't think I can be more convinced that he has PANDAS.

My 12 y/o daughter who has PANDAS (or PANS - since we found out she is dealing with other infections besides strep) did this during her first major flair of symptoms. She was 5 at the time. She was licking everything. She was licking the bottom of her shoes, tables, under the chairs, doorknobs, etc. I took her to one of our pediatricians at the time, and he got down to her eye level and had a long talk with her about the importance of not licking objects and how her mommy was worried that she would get sick. He then asked her if she would stop licking things, which she responded yes. As he was leaving the examining room, she walked him to the door and licked the doorknob after he closed it. oh boy - I'll never forget that moment.
 
At the time we thought it was tourettes, since she was also doing constant knee bends (sort of like lunges). When people asked her why she was doing them, she would answer "doing what". She also had some continuous hand movements, throat grunting, and eye blinking. This flair eventually led us to a dx of PANDAS and treatment. I think the licking may have been more ocd related. The behaviors mentioned resolved with antibiotics, except occasional eye blinking.
 
Has there been any infections that you recall in the last few years?
 
Just wanted to share. hang in there!

I can only answer the first part of your question. I would not rule out pandas just because of a negative throat culture. I would have them repeat the blood tests that would show she had a recent infection. Ask for ASO and anti dnase B. And yes there are many other infections that can cause tics. Pandasnetwork.org has some good information and lists of doctors that can treat PANDAS. My son had this eye rolling tic and several more. He is doing great now after long term antibiotics and a T & A. Let me know if I can help in any way.

my kids have pandas and I tend to see most tics through that optic. did you make sure that the tics your son has are not related to infections like lyme, strep, or mycoplasma? normally, you would do a bloodtest for these, IGENX for lyme, regular lab for the others, as well as immune markers.
Symptoms you describe, especially their going and coming back, their change mimicking autism, remind me of PANDAS.
Best of luck

Even with the genetic testing available today, doctors don't know enough about how different alleles impact the metabolism of these drugs, and waiting until they do was not an option for us. And then there is the stability of the gut/BBB which can be effected by diet or by the cytokine cascades produced by different infections.
 
When starting different drug protocols (abx or psych), be aware of the possibility of these negative reactions and change your protocol if necessary. "Start low, go slow".
 
A herx reaction is produced by gram negative bacterial endotoxin release and the results of it's inflammation on the body and brain. It is not produced by gram positive bacteria. If methylation/detox pathways are functional the reaction should resolve over time (the amount of time depending on the capabilities of the pathway).
 
I agree that a large herx reaction may cause a great deal of inflammation and perhaps become even more dangerous than the infection itself.
 
In our case, each change in abx protocol produced an initial herx reaction which gradually resolved while remaining on the protocols. I think we would not have seen the same type of resolution if DD had been dealing with a drug reaction. She did have an allergic reaction to bactrim, which started out as what I thought to be a herx, but which escalated over the course of a couple of weeks to hives and facial swelling. We discontinued that one.
 
PANS reactions are caused by inflammation. In our case the inflammation was caused by endotoxin release and not so much by the production of antibodies. DD's PANS reactions which flared with protocol changes/herx's, resolved with detoxing and the use of anti-inflammatories. She still has positive bartonella igg antibodies but in no way is she a candidate for IVIG/PEX.

Hi Aimee, The only thing I would add is that not many pediatricians are familiar with Pandas. You may have to find a physician that actually knows how to treat Pandas. Let me know if I can help. PS. My son was diagnosed with Pandas and has been tic free for for a year.

Tinytreasures provided this information. Call you insurance company and ask them how much they cover for each of these cpt codes, whatever they do not reimburse, you are responsible for. That way you are not guessing.
 
 
83520 - 4 times
88230 - 1 time
86352 - 1 time

You may want to consider the possibility of tics being a symptom of an active neurological infection or an effect of an autoimmune process:
http://www.ncbi.nlm.nih.gov/pubmed/23230453
 
Many diseases could either infect your nervous tissue directly, like Lyme disease, or cause autoimmune reactions to nervous tissue due to cross-reactivity of the antigen, like M. Pneumoniae / PANDAS / PANS.
 
I would stay away from CBT and neuroleptic drugs, and instead use the tics as a diagnostic measure of your health. Seek out the counsel of a good doctor who:
- has a background in infectious disease and immunology.
- is willing to provide you a full clinical assessment, discussing all health symptoms you had since age four.
- is willing to order blood tests to assess current state of your immune system, current state of common autoimmune antibodies.
- is willing to challenge the immunity hypothesis with a "steroid burst" for 21-30 days and see if your tics subside. If your tics go away when on steroids, then it is reasonable to believe that the tics are caused directly by an immune process, or indirectly by inflammation caused by an immune process. If your tics are caused by immune process, you will need to find and work with doctors who can help you explore the possibility of current infections versus past infections. Immerse yourself in resources devoted to PANDAS / PANS and Lyme disease, and recognize that many doctors may be uninformed and not well aligned with current research.
 
Change in diet has not been helpful in our situation, however you can become familiar with the idea that chronic inflammation could lead to "leaky gut" or intestinal permeability which could lead to a variety of neuro-psychiatric symptoms. In other words, if you have dietary sensitivity you should manage it but also consider to role of inflammation as a cause to that sensitivity. http://www.ncbi.nlm.nih.gov/pubmed/22906518
 
Hope this helps. You have a wide variety of options to consider, but you are on the hunt for the cause which is great. Stay on the hunt until you find it!

I am also a Minnesota Mom. I sent you a pm.

Thought I would chime in........While I agree somewhat in part what you guys are saying about Beth not really knowing about violence associated with pandas and not being a medical doctor, I must disagree on other points quite firmly and make the main point I think needs to be made. We need to keep up the pressure on the medical community to start telling the truth and doing their "due diligence" with us on a case by case basis.
 
1) My kiddos all had different reactions to their milk allergy as kids. They are all same blood related----same two parents. 2) Despite this fact-- Their pandas onsets were all very dis-similar in initial onset. 3) In my kids' school(after learning about others kids and teachers issues) and people close our "CIRCLE" of friends and acquaintances., We have multiple people with different diagnoses. Tourettes, Pandas, Immune dysfunction, generalized anxiety disorder, tics, RA in their teacher------all this within the same 12-24 month time frame.
 
While every kids journey with infections, Pandas,PANS,ASD,Tourettes,ADHD, Bi-Polar------you name it, are very dis-similar, as we are as people, very dis-similar yet very similar. We all have an immune system that will respond (or not), be overwhelmed and fail to respond and allow bacterial or viral infections to take root and reek havoc on our body and mind. Having these multiple assaults on the immune system at the same time are not good. In addition to being vaccinated. In addition to worsening diet and the list goes on.........and on.
 
So the point is this-----I think it is as simple as-------Everyone's genetics imply how our immune systems will react to every bacterial and viral infection, everyone's bodies are different. We are, as a culture eating more and more crap. And we are vaccinating a ton more than when I was a kid.
 
That being said........ Look at the Child Mind Institute and read all the causes of any of the disorders. They all say genetic and sometimes environmental. Yes, everything is genetic and we all live in the environment, but using the excuse that only genetics and "environment" cause LITERALLY EVERYTHING is disingenuous at the very least.......There are specific things to look for with the onset of any symptom. Until the medical community "grows a pair" and starts treating people like adults and starts saying what the truth is, we will be stuck and quite frankly sick......both physically and mentally until this change happens. Until people can be educated and understand what their family history is and how and why they have gotten sick, one can then take pro-active approaches. I am not a doctor, nor am I really that smart, but I know the truth when I see it and it is not being told to us by main stream physicians.
 
I have leaned heavily on our DAN Integrative Ped. I like his thorough and practical approach.
1) Look for and debulk infections
2) Eliminate triggers to the immune system
3) Supplement vitamins and minerals lacking in body to promote optimum bodily/immune performance.
4 Implement sick protocol on how to deal with future infections.
 
With three kiddos with Pandas or Pans or Tics emotional lability or bi-polar or whatever you might want to call it, I refuse to stay stupid and not try to intervene. I know what our genetics might be as it regards to mental or auto-immune issues and If I can do something, I am gonna try.
 
Sorry for the rant, but I think Beth is more where I am at......... Keeping up the pressure on the medical community to address biological reasons why mental illness might exist and educate and provide options.

Ds 11 had T & A 1 year ago. We saw immediate resolution of tics 2 days after surgery. We did antibiotics before during and after surgery. He is still on antibiotics for strep prevention and doing incredibly well. He has had a few episodes of tics with ear infections but this was definately a huge help for us.