Jump to content

  • Facebook
  • Twitter
  • Google Plus
  • Youtube
  • youtube

Existing forum users need to log into the forums and website with their email address and password. Become a premium member to access enhanced forum features and visit our online store to view our products.

Most Liked Content


#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


#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


#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


#175170 SHE'S EATING! Omg, SHE'S EATING! ;)

Posted by beerae22 on 16 June 2014 - 10:32 AM

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!

I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!

Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!
  • MomWithOCDSon, juliafaith, SSS and 2 others like this


#174227 Am I foolish to think that my daughter is going to get better?

Posted by llm on 08 May 2014 - 04:45 PM

Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.

 

It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.

 

I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.

 

I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help

Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)

http://www.lifebuzz....-things/#!LfOA7


  • SSS, ibcdbwc, maryaw and 2 others like this


#166935 Alzheimers/PANS Linked?

Posted by airial95 on 21 October 2013 - 01:21 PM

I have always found it interesting that the most common advice for family members of older folks is that if thy have any change in personality or behavior - to get them into their doctor for a full medical work up, but in our children, it's get them to the psychiatrist/pharmacy!

Oh, and by "interesting", I really mean infuriating...
  • mama2alex, MomWithOCDSon, cobbiemommy and 2 others like this


#166671 pandas can be cured only if it's treated early?

Posted by kimballot on 17 October 2013 - 05:44 AM

I can understand what the immunologist is saying, and I can appreciate his experience with another child, but I really do not think we are at a point where we can say definitively who will and who will not benefit from treatment.  The only studies that have been done with PANS have been kids with clear-cut, first-time  PANDAS (no co infections) or a few kids with first-time exacerbations from a virus or another type of infection (back in 1995).  I do not believe anyone has studied older children who have had years of untreated exacerbations. 

 

I am telling you this as my son is 16 and did not start treatment for PANS until age 13, despite a lifetime of chronic infection and repeated symptoms with each infection. He had many, many small exacerbations with sinus infections throughout his life, and has had two very large exacerbations - one was due to a severe hidden tonsil infection and one was due to a hidden infected sinus cyst.  The first one took about 4 years before he was functioning at a "typical" level.  The second one happened 4 years ago and he is just returning to school and starting to function this year. Each exacerbation takes a toll and, yes, leaves him with some residual problems such as handwriting or intrusive thoughts. I do believe that with early treatment he would have no symptoms at this point - and that is my prayer for future children.

 

I recognize that this is a chronic condition for my son and he will be managing his illness and his symptoms for the rest of his life.    That does not mean that he cannot have a very functional and fulfilling life.  Without treatment he would need to be institutionalized, I am sure. 

 

So... is there hope for children with long-standing PANS?  yes - I think so.  Will they be cured?  Perhaps not.  Can they learn to manage their illness and function?  I suspect the majority can and will - but we need more research to understand this disorder to have the best management possible.  Should we stop treating them because they are well past their first exacerbation?  Absolutely not.  Whatever the cost of treatment in terms of time and money and frustration and quality of life... in the long run it will be nothing compared to the cost of NOT treating our kids in terms of time and money and frustration and quality of life. 


  • MomWithOCDSon, beeskneesmommy, lovemylittleguy and 2 others like this


#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.

 

 


  • juliafaith, cobbiemommy, rowingmom and 2 others like this