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#170839 Four Years - A Reflection

Posted by airial95 on 28 January 2014 - 10:48 PM

Year 4 – a look back  

 

Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles.  I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.

 

I have found it helpful to even look back at each year's post to see just how far we've come  -  Our First year:   http://latitudes.org...topic=12108&hl= 

Second:  http://latitudes.org...wtopic=16245=

Third:  http://latitudes.org...wtopic=19517=

 

And here are my reflections for the 4th year of our journey:

 

  • I have often dreamed of “life after PANDAS”, I learned that there is no such thing.  While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips.
  • While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us.  Hopefully, they will not take 4 years to find the healing we have this year.
  • I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. 
  • I’ve also learned that the unwavering support and advice of those friends can only carry me so far.  I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions.  Our instincts as parents – no mater how scary -  are still the best weapon we have to help our children. 
  • I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. 
  • I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you.  Again.
  • I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the ###### through which we had previously passed. 
  • I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. 
  • I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. 
  • I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand. 

 


  • t_mom, philamom, mama2alex and 11 others like this


#177005 Update: I Need to Brag

Posted by MomWithOCDSon on 11 September 2014 - 12:33 PM

I need to brag, and so few people in the "real," non-PANDAS/PANs world will understand . . . so I come to you guys! :P

 

DS has had quite a road, and he keeps coming into his own, little by little, every year.  He's now in his senior year of high school and our big accomplishment this past summer was the three weeks he spent on a college campus, living in a dorm with a roommate, eating at the cafeteria and attending an engineering "camp" designed for rising seniors, with college instructors presiding.  That experience wasn't without challenges, but we threw him in the deep end, and he swam!  Actually came away from it convinced that, in another year, he will indeed be ready to leave home for the "full-bore" college experience.

 

Still, he started his senior year with some anxiety and return of his nemesis of all OCD behaviors:  contamination.  No dramatic "flares," really, but just the creep and crawl of that insidious beast.

 

So when his AP Calc teacher called us last night, merely for the purpose of telling us what a joy DS is as a student, how bright he is, how he asks deep, thoughtful, creative questions rare of a math student of his age, how respectful and polite he is in class, how grateful this teacher is to have him to teach . . . I almost cried.  DS has enjoyed academic success, yes, particularly once we got him effective PANDAS treatment.  But as a 2E kid to begin with, who also has a tendency toward high anxiety, he's rarely appreciated to this extent by his instructors.  More often than not, they cut him slack on the one side (keeping up with production requirements, occasionally behavior) because he performs so well on the academic side (particularly testing which, interestingly enough, the anxiety doesn't seem to grab a foothold in).  But genuinely appreciate him?  Even seem to flat-out like him?  That's rare!

 

I guess I'm bragging almost as much on this teacher as I am on DS . . . in my book, they're BOTH keepers! :D

 

Thanks for listening!


  • kim, philamom, sf_mom and 6 others like this


#160413 Interesting perspective from Beth Maloney

Posted by kimballot on 05 June 2013 - 11:08 PM

I know I've not been posting much lately, but I feel a need to chime in here.  My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school.  So did Grant.  I struggled to find help for my son. So did Grant's Mom.  

 

My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward.  We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed.  My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them.   I don't know if it was hallucination, fantasy, or OCD.  He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways.   It is hard for me to sort it out.  I  just know it was horrible ... fast.  One police officer told me my son needed to go on PINS and that I needed to get the justice system involved.  Thankfully, it never came to that. 

 

I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment.  Slowly, slowly, slowly, he came back.  

 

Today my son is a loving, kind, even-tempered and humerous young man.  He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid".  My son received treatment. Grant did not.

 

I do not know what would have happened to him if we could not get treatment.  I have no doubt he would be in trouble with the law. 

 

Can untreated PANDAS become antisocial behavior?  I don't know.  

 

I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"...  but we are so quick to turn away from a controversial case when it is not pretty.  No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!  

 

I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior.  Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG?  Wouldn't that be amazing. 


  • peglem, eamom, t_mom and 6 others like this


#179190 New Parents: Advice From the Trenches

Posted by surfmom on 04 February 2015 - 09:34 PM

My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.

 

1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:

 

2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 

 

3. It's not in a name, so don't get stuck with a label.  I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage.  For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of  X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 

 

4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 

 

5. Don't worry about the bandaids - yet.  I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 

 

6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 

 

7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 

 

8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 

 

9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it.  I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 

 

10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.

 

11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website :).)  

 

12. Go out at a minimum of twice a month for the evening.  The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  :wub:

 

After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 

 

Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 

 

I am not editing. I used to. I don't anymore. See? LOL  

 

(Ok, confession... I came back and read this AM, and gently tweaked the typos). 

 

A thousand blessings your way!


  • msimon3, pr40, StellasMum and 5 others like this


#177510 new article on PANS from Stanford Medicine

Posted by eamom on 18 October 2014 - 05:18 PM

http://stanmed.stanf...ain-attack.html

 

Here's a bit:

 

"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.

“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders. 

“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."


  • philamom, MomWithOCDSon, SSS and 4 others like this


#160341 The need for more

Posted by llm on 05 June 2013 - 11:39 AM

I've chosen not to respond to the recent thread about what Pandas is or isn't, can or can't provoke in terms of behaviors. But one thing became very clear from that thread - the intense frustration and pain that every family feels as a result of this illness and the controversy/stigma/lack of progress over the past 2 decades.

 

No matter how much time goes by since joining this community, there has always been unanimous agreement on the need for More...

More awareness

More research

More compassion/courage/acceptance/support from local practitioners

More consensus on treatment protocols

More insurance coverage

More ERP therapists

More answers

 

In the past few years, some very brave families have shared their stories with various media outlets, some have worked behind the scenes with researchers or existing non-profits, some have created/joined non-profits specifically for Pandas. It seems we each have things we're good at, things we're able to contribute. Whether it's sending a PM of support to someone who's really struggling, sharing a personal story with the media or organizing a national march on Washington, we all have a responsibility to help our kids and those who come after ours to make the path easier. We can - and should - all play a part, regardless of our financial situations. We all have gifts to share.

 

I just came across this organization that seems to have the right idea about cutting to the chase:

http://fastercures.org/

 

If your frustrations have been stirred up, please consider supporting one of the Pandas non-profits, the IOCDF or ACN (which is also a non-profit) with either a financial donation or some volunteer time or some constructive ideas on how you'd like to see things evolve, or just your continued support for this forum. Pay it forward. We all need to act.


  • t_mom, mama2alex, MomWithOCDSon and 4 others like this


#183438 A note about Facebook pages

Posted by Sheila on 14 February 2016 - 07:54 PM

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.   

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.  

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.


  • chemar, dut, Wombat140 and 3 others like this


#178468 good news PANS /PANDAS LYME

Posted by msegal7 on 08 December 2014 - 06:07 PM

Hi all,

I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus.  I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS.

 

My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep related. Wishful thinking.....it has been quite a journey. There are moments it seems there isn't an antibiotic we didn't try. We found Dr. T, then we found another local doctor who is more familiar with Lyme and PANS in general and we were off. It has been a very long road and there have been a lot of ups and down. We tried so many different supplements I could run a vitamin shoppe from my pantry of things that held promise but didn't work or caused a rapid decline.  Slowly but surely we began to peel away the onion layers. We used multiple antibiotics and we pulsed tindamax (2 weeks on and 2 weeks off). We tried every anti inflammatory supplement we could find and we really saw improvement. There were flares pretty often and just when I thought we were rounding the corner, he would turn back around and run the other way. It was very up and down. 

 

Sometime, about 3 months ago, I realized that we were missing something. He was at about 85% but I couldn't find a way to get him all the way home. I didn't want to settle for almost back to normal. It didn't feel like antibiotics were going to get us there. I started thinking we were having a serious detox issue and that his gut was causing the problem also. I couldn't figure out what we had missed because it felt we had addressed so many angles. 

 

I read the boards a lot but only squinted through anything on methylation. I was afraid to even consider it....thought my head would explode. Thanks to all of you (LLM) for your brilliant input and critical advice. I had my son on Quercetin, Garlic and anytime I gave him an epsom salt bath he itched for hours. He reacted to B vitamins with increased ticcing. I had to look at methylation. I ordered the 23 and me and sure enough we have some significant mutations that require us to alter the supplements we are giving. The main thing was a CBS mutation. I took him off all things that might cause a problem temporarily while waiting for our Dr. appointment to discuss the results and lo and behold he got to 90%. Then we started slowly adding in herbal remedies following Buhner (thanks Rowingmom.) We did this with the help of an herbalist and we went low and slow. I started to back down some of the western medicine (cefdiner, malarone) and we are now at 95%. I am slowly ramping up the herbal tinctures and watching in amazement as we see the re emergence of our boy.

 

I wanted to update all of you and give a little hope. There is a way out of all of this and it requires an ability to zig and zag and swear to something only to swear it off the next day. It requires flexibility and diligence and the support of all of the people out there who have been in your shoes and truly understand your pain. I wanted to let you know that we see the light here at the end of the tunnel.....and if it stalls out.....we will do something else. 

 

Hang in there. You are all amazing and your kids are lucky to have you.

 


  • philamom, debc, SSS and 3 others like this


#177544 new article on PANS from Stanford Medicine

Posted by qannie47 on 20 October 2014 - 11:35 AM

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....

I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.
  • eamom, philamom, ibcdbwc and 3 others like this


#177524 new article on PANS from Stanford Medicine

Posted by hrosenkrantz on 19 October 2014 - 05:40 AM

I'm reading this article now, but one of the things I like about it is the run-through the parents go through with trying to attack this with behavioral interventions (ie trying to be "better parents") and how futile that is when the brain is inflamed. In other words, rewards charts may not be so effective when the child's brain is on fire,


  • philamom, MomWithOCDSon, SSS and 3 others like this


#172744 Our new PANDAS Doctor!

Posted by cara615 on 20 March 2014 - 05:22 PM

So we finally got in to see Dr. Bradstreet in Buford, GA yesterday. AMAZING experience. He is a genius. the man knows so much about the immune system that it was baffling. I needed for him to dumb down a lot of what he was getting into because it was over my head. He has a wonderfully kind personality, no God complex and he took to ds immediately and vice versa. He even gave me his cell #!!!

 

We went over all the testing that I wanted to do and we prioritized based on what he thought would give us the most actionable information. We did and OAT in the office and will be giving blood next week for: Lyme, MycoP, H. Pylori, Immune pane (IgG, IgA, IgM, etc) and a cunningham test. He feels that he will be able to tell based on cunningham test if ds would benefit from IVIG. 

 

We are also testing nagalase which is an indicator of low macrophages and if they are low then we will be getting GcMAF. He gav eus Vit D3 and Krill oil immediately and sent me to a website to buy Luteolin,Quercitin and Rutin in this one capsule that is supposed to boost Mast Cells.

 

He feels that DS is triggered by Strep as well as allergies to food and environment. He feel positive about ds's outcome. I guess the tests will tell us more as far as any other infections.

 

I feel like we are FINALLY in good hands and the great thing is that he has treated my friend's son with fantastic results.

 

Right now ds has come off a flare triggered by brother's strep and seasonal allergies. Allegra has helped us tremendously.

 

Bradstreet also wants us to go on prophylactic abx because he thinks everyday is too much. However, I don't want to change the protocol until he is tic free. I am so afraid of a regression once off the abx!!!!!

 

All in all it was a very positive visit and I am feeling hopeful.

 


  • MomWithOCDSon, nicklemama, ibcdbwc and 3 others like this


#164355 Milestones

Posted by MomWithOCDSon on 24 August 2013 - 04:49 PM

As some of you other "old timers" know, we've been here since approximately October 2010, when we first discovered PANDAS played a role in our DS's long, hard fight against OCD. We will be forever indebted to everyone here and to the whole ACN family for helping us find our way through.

When we began, DS was 12, completely non-functioning, curled up in the fetal position on the floor of his room, unable to do even the most mundane tasks, let alone actively participate in school or the "normal" life of a pre-teen. Four years later, two of which included antibiotics, he's doing so well and making us so proud, I just needed to brag for a minute and hope that his progress might inspire some other kids/families that are looking for their own light at the end of the PANDAS tunnel.

Over the summer, DS began learning to drive, he worked his first part-time job, began his own consulting business, and attended a week-long media arts camp at a well-respected media arts college. He also did some college research and got very excited his future prospects.

School started last week: his junior high school year. He's enrolled in AP and honors classes, participating in the school's robotics competition team, and digging his challenging course load thus far. The "ice cream on top" came yesterday when he had his first date with a girl in his class! Honestly, I wasn't sure he would ever get to the point where he would be comfortable with dating, let alone the first week of a new school year!

I don't intend to mislead anyone. Plagued by OCD behaviors since the age of 6, he still contends with some of that; he's a bit of a Mr. Clean as well as a perfectionist when it comes to his school work. But rather than it bossing him around these days, he truly seems to be in charge of it, unwilling to let it get in his way either academically or socially.

So things just seem to get better and better on our end (knock on wood), so I feel certain they can for most of us. I realize a four-year path may seem unthinkably long and protracted for some of you, and I know some have been able to walk a quicker path to overall physical and mental health than we have. But quite honestly, I'm so proud and happy in the present, and thinking of his future, that I find I don't regret those years. They've become a part of who he is and who we are as a family, and I know we're all stronger and more compassionate for it.

Thanks again to you all, and much light and love to everyone and their kids!
  • philamom, vickie, SSS and 3 others like this


#163072 Dr.an Extreme Disappointment!

Posted by chemar on 28 July 2013 - 06:45 PM

Hi T.Anna

 

that is such a gracious response from you....thank you.

 

I am personally appalled that health care workers would ridicule a child under any circumstances.

And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho.

 

Kudos to you again for taking the high road here.

And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here.

Feel free to message me if you would like it re-opened.


  • SSS, t_anna, 4nikki and 3 others like this


#172757 Anyone have research linking vaccines to ASD?

Posted by cara615 on 21 March 2014 - 12:01 PM

I will be completely honest - no flames please (although I think y'all are on the same page as me). I was a vax skeptic when my kids were born. I did not allow the hep vax to be given in the hospital. One of the nurses told me that I could get her fired if I did not give it to my kids. I told her that is not my problem!! My kids are my responsibility!!  At our ped's office I had them on a VERY delayed schedule. 1 shot a year. I had a pediatrician come at me with threats that i was harming my kids and I should be locked up!

 

At 6 years old my kids have had dTAP, polio, prevnar, HepA, HepB and HIB - no boosters for any of these except the dTAP. So maybe in total 7 shots each. I stopped vaxing completely when they were 4 years old.  I have to write a religious exemption for every school they attend.

 

Ok so fast forward, I now have one kid with PANDAS. Our integrative MD (dr. Tasneem Bhatia - google her) told me straight faced that I saved my son from autism. She said that if i had continued with the vax's he would have regressed and gone further "on the spectrum".

 

Our new Dr. (Bradstreet) studies both Autism and PANDAS extensively and has proof that autism is also immune system based. He showed me some complex diagram about how these macrophages from the mother get into the child in utero and take up residence in the child's brain. He lost me after that point but I know that macrophages kill infections and are an integral part of the immune system.

 

Vaccines create artificial heightened responses from the immune system not including all the preservatives and heavy metals that are toxic to the body. This combination given to a child who is already VULNERABLE from birth can cause the perfect storm of reactions thus creating an environment for neurological damage to occur.

 

I look at it as I saved my son.


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#171158 it's the small things

Posted by smartyjones on 05 February 2014 - 11:47 AM

I'm always hesitant to say things like this, so let's all knock on wood together, please.  but, I do in hopes this silly story may give someone a glimmer of hope that there really is light at the end of the tunnel.

 

today, ds has a check in appointment with doc.  it has been 4 months.  4 months ago, I was happy that doc kicked him from the 2 month schedule we have had for about 4 years.  we had tried it  before, but had to come running in before the time was up.  today, he's doing fine and it really is just a scheduled follow-up. 

 

as I've learned, I go in with my notes organized and ready so I don't forget anything.  I wanted to discuss our issue with Vitamin D a few months ago (ds seemed to react with even small doses such as 400iu with pandas-like symptoms but tests low, in the 20s).  i actually couldn't remember how i wanted to say what the behavior was.  i had to look back in my notes to see what it was.  it was 'unreasonable and over reactive upsets'. 

 

oh yes, how could i forget?!   there was a time when we lived hourly with unreasonable and over reactive upsets and now I'm having to look up what the symptom is.

 

yes, i am very grateful for that and i wish for everyone struggling hourly that your time to have to look up past symptoms is just around the bend!


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#168954 At the risk that you may all think me a zealot.....

Posted by qannie47 on 09 December 2013 - 08:54 PM

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.

 

 


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#164176 Understanding science- good article

Posted by michaeltampa on 21 August 2013 - 11:53 AM

Feels like it forgot to mention the influence the pharmaceutical industry has on the selection of articles, that where they get their money can influence what they publish.


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#160908 Lesson on Stress -

Posted by norcalmom on 13 June 2013 - 11:35 AM

I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough.  Its the stuff that seems to never end that gets to me.  The progress is so slow, and it seems so easy to slip backwards. 

 

I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.

 

 

 

 

Subject: A Great Lesson on Stress
A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile. 
Answers called out ranged from 8 oz. To 20 oz. 
She replied , "The absolute weight doesn't matter. It depends on how long I hold it. 
If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm. 
If I hold it for a day, you'll have to call an 
Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on." 
"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced. 
So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow.
1 * Accept the fact that some days you're the pigeon, and some days you're the statue! 
2 * Always keep your words soft and sweet, just in case you have to eat them. 
3 * Always read stuff that will make you look good if you die in the middle of it. 
4 * Drive carefully... It's not only cars that can be recalled by their Maker. 
5 * If you can't be kind, at least have the decency to be vague. 
6 * If you lend someone $20 and never see that person again, it was probably worth it. 
7 * It may be that your sole purpose in life is simply to serve as a warning to others. 
8 * Never buy a car you can't push. 
9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on. 
10 * Nobody cares if you can't dance well. Just get up and dance. 
11 * Since it's the early worm that gets eaten by the bird, sleep late. 
12 * The second mouse gets the cheese. 
13 * When everything's coming your way, you're in the wrong lane. 
14 * Birthdays are good for you. The more you have, the longer you live. 
16 * Some mistakes are too much fun to make only once. 
17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box. 
18 * A truly happy person is one who can enjoy the scenery on a detour. 
19 * Have an awesome day and know that someone has thought about you today. 
AND MOST IMPORTANTLY 
20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!

 

Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!" 
Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"

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#160426 Interesting perspective from Beth Maloney

Posted by dcmom on 06 June 2013 - 06:32 AM

I think it is time to let this topic go.  We have shared our thoughts.  There are many sides here, no one is right, no one has the "moral high ground".  We all want to help our kids, and all pandas kids, and no one here has anything but sympathy and understanding for this family either way


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#160278 Interesting perspective from Beth Maloney

Posted by MomWithOCDSon on 04 June 2013 - 06:58 PM

I'll just say upfront that I'm a little hesitant to join this fray in any detail, as it's clear that people have some very strong views and feelings; however, I do feel as though some things need to be said, and I've never been one to keep my mouth shut, even when it might be advisable. :P

 

I have no desire to throw this mom or her son "under the bus."  And I am probably as certain as anyone on this board that most, if not all, "mental illness" has its roots in a physical medical issue, whether it's tied to infection or inflammation or methylation, or genetics, or a combination of one or more of these.  Therefore, I am every bit as anxious as anyone else to see the medical and mental health communities get their "stuff" together and start looking for root causes, rather than just treating the symptoms or the resulting behaviors, sharing information and research, and ceasing this ridiculous territorial fight over what is "mental" and what is "medical". :angry:

 

I am also eternally grateful to Beth Maloney and everyone else who has worked tirelessly to inform, educate and advocate for the PANDAS/PANS community.  I owe Beth a personal debt of gratitude because her book was what brought us to PANDAS to begin with, so there's no animosity here in that respect.

 

That being said . . . I truly don't think it is in anyone's best interest -- not these kids, not their parents or families, not our kids or our families -- to throw the term "PANDAS/PANS" out there in the face of these sorts of horrific events.  Our childrens' illness is already grossly misunderstood, so the idea that members of the general public or the medical community who are, at this point in time, dismissive of PANDAS/PANS as a legitimate illness, would have "their eyes opened" by linking this boy or Adam Lanza to PANDAS/PANS is, I fear, a misdirected expectation at best, and quite likely detrimental to our best attempts at educating the public and medical professionals at worst. 

 

Again, these two particular events/persons that have been cited in this thread were most definitely suffering from illness, and the boy who still lives needs help.  Perhaps PANDAS is part of the mix, but as those of us with older kids who have suffered for an extended period well know, the microbe and its mischief are only a part of the puzzle.  Without intensive and lengthy therapy, my PANDAS son would quite likely still be stymied mightily by OCD because those coping behaviors become "normal" for him, because it can become habit.  So pumping him full of abx or IVIG alone would not have led to the success he's experienced.  There's more involved in the illness and the healing, as I think we all know. 

 

But throwing Aspberger's, PANDAS, PANS, etc. out there like spaghetti against a wall isn't really shedding light or spurring on research or enlightenment . . . it's just giving the folks who already dismiss or misunderstand more fodder for confusion and/or turning their collective backs on us and our kids.  And lumping extreme acts of premeditated violence like these in with any of the "labels" like Asperger's, PANDAS, PANS -- I'm sorry, I have to say I feel that it is irresponsible.  We don't know what was in these boys' minds, we don't know what kind of help they were truly being given or what was being withheld, either out of ignorance or lack of access.  And too many of our PANDAS kids are absolutely not capable of even contemplating such violence, let alone committing it.  But the general public doesn't know that, and likely many medical practitioners don't know that, either.  So why would any of us want to plant that seed?!  To get attention?!  Isn't that a little like the kid who misbehaves to get attention, even if it's negative attention, because any attention is better than no attention?!  I truly think we can be more discriminating than that. -_-  

 

Help everyone, yes!  Get the word out about causal links between infection/medical illness and mental illness, absolutely!  Drive the demand for research in this regard, heck yes!  But I think we need to show some restraint and, for lack of a better term, some "global responsibility" in the process.   

 

I've got my umbrella at the ready for the tomatoes . . . :ph34r:


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