Teri got a reaction from mama4 in What is this??pandas, herx or abx side effect?
Are you giving any ibuprofin? That may help calm things down a bit. Also may I recommend an excellent probiotic?We use Florastor Kids. My dd10 has PANDAS,Lyme, Bart. and Mycoplasma. She has taken a cocktail of antibiotics daily and the Florastor has protected her gut!
As far as herxing reaction, I would make sure you have touched based with your Dr. Watch the foods your child is comsuming, food dyes and artificial ingredients for us have often led to behavioral changes and nightmares - specifically red dye for us.
Teri reacted to Sheila in Dr. T in Ramsey - everybody must read
Yes pik, this board is and always has been monitored,
Though we are sympathetic to your situation, we try to be evenhanded in the public information that is shared about various physicians as well as other people.
We have an advisory board that sets policy and we do our best to follow it. Part of that policy is:
Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. In particular, though we can't claim to catch every negative post, we try to make sure that material that is against the guidelines does not remain in a public venue in which a person being criticized is not able to defend him or herself.
We always appreciate when members alert us to posts that need moderator attention.
We felt that the material that was left on your posts after editing was sufficient for you to get your point across.
As a reminder, everyone is asked to please adhere to these guidelines, found in full here. Thank you in advance for your help with this issue!
Teri reacted to MaryAW in Book recomendations please
Dr. Chansky's book is so good that we found out where she practices, and now drive 3+ hours so she can be our daughter's CBT doctor. "Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents" is a great book. the link for Amazon is:
Teri reacted to Missmom in After 2+ years .... A fever?
I would be on my way to your pedi. Is she taking any antibiotics at all either prophylactic or treatment dose? I always take my son to the clinic immediately with fever. Don't want to take any chances. I don't go running to our pandas doc unless it gets bad but an urgent care clinic will usually give me a ten day course of a different abx. My son takes augmentin so if he has a fever it is usually something that has broken through the augmentin.
Teri reacted to beeskneesmommy in Saw Dr. B on Friday & hopeful...
We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday
Keep having hope. Keep the faith. Warm healing wishes to your son and your family.
Teri reacted to kleek3 in Saw Dr. B on Friday & hopeful...
Evening fellow warriors,
I will start by saying we have been battling for two years in April. We have certainly had our ups and downs with this journey. Our ds5 was dx by Dr. T in September of 12. This was after a semi battle with a ped that said tics were normal & a referral to a local Neurologist that said you are doing the right thing seeking out a PANDAS specialist.
After a botched visit to Yale seeing Dr. L that I felt was more of an interrogation on my prenatal care and ds5 NICU treatment. With 12 other Doctors/students studying me instead of our son. A Tourettes Dx was given. After consulting the forum on my fears of "doctor shopping" I followed the lead of other people on this forum and sought a 3rd opinion in Dr. T.
Since September 12 we have been on an unimaginable amount of abx to include - Augmentin, Cefdinir, Zithromax, a 30 day Steroid burst, Clendomyicin/Rifampin combo, Biaxin and I'm sure I'm missing something... The only med change that brought a somewhat positive change was Cefdinir/5 day steroid burst with the onset of an ear infection/croup. We noticed a subtle change, and there was a glimpse of hope. Then a viral shows up or strep is in the air and back to square one.
With that being said, I in no way am bashing Dr. T or discounting the endless chats he tolerated with me as I was sobbing in Wegmans parking lot or him contacting me at 4am EST while I was in Scotland. This man believed in my gut feelings, and he believed in a hope that we would find a good place that my family would be able to function in. As the year passed on, I found it more challenging to contact Dr. T as well as getting a response as to what we were to do next.
I will tell you we did 40K dollars worth of genetic testing, we have followed his lead from day one. I have poked and prodded my boy with needles and exams. I have fed him countless supplements for 7 months now. July - November 2013 we saw a change. We had our son back for a brief moment in time. Life was good. No one was being hurt physically on a daily basis, guards were somewhat let down. Then....virals kicked up at school, strep was floating around in our small private school. Daddy was ill and before we knew it we were in a full blown flare again.
The choice to see Dr. B was an easy one. I needed yet another opinion as ds5 wasnt getting better and I couldn't get an answer from Dr. T. I will do my best to share what we learned this past Friday in hopes that someone somewhere can learn from our experience....
1) IVIG is necessary. Ds5 has consistent low IgG levels to the point that Dr. B said this kid has no immune system.
2) A patient history from our drug store was one of the most shocking documents I have looked at. The amount of med changes ds5 has had is shocking. With NO significant changes. Lesson - pull your kids prescription history and trust your gut!
3) Labs - mycoplasma has ALWAYS been an issue for us. As it turns out, my husband has very high mycop levels since the first labs Dr. T ordered. A Z pack was called in for everyone in the house. Dr. B's opinion was that no z pack would ever kill off those numbers in my husband. He has had this since 10/12. Could he be reinfecting Ds5 without us even being aware of it?
4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later.
5) When you know better you do better. We know more this week than last week. There is a plan to make a plan on March 6th when we return. I loved that Dr. B told Ds6 that he thinks we can help Ds5 and make life better for the family.
So, we are on Amox/Clav 600/5ml 2xs daily - a much heavier dose than we have ever tried. I'm noticing a kick up in his PANDAS symptoms that I'm wondering tonight could this be a herex? I will continue to have faith, I will continue to stalk posts on a regular basis. I know PANDAS isn't going away tomorrow, tonight at least I have hope!
Teri reacted to airial95 in Four Years - A Reflection
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/forums/index.php?showtopic=12108&hl=
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.
Teri reacted to Missmom in What does recovery look like?
I am always afraid to say when my son is doing well, because as sure as I do then we see a backslide once again. I know everyone's story is different, but I have been going through this almost two years now. I have read and researched so much that at times my brain has felt fried! Anyway, the stories that always fascinate me are the lightbulb stories of recovery. I know it is not typical, but there have been parents who say their children just wake up one day and all their symptoms are completely gone. Just like those of us that had an overnight onset, others have an overnight recovery. I cannot lie, I would just love to one day wake up and have it all be over.
Teri reacted to Hrosenkrantz in What does recovery look like?
My son has not gotten back to his baseline of June 2012; but he's a complicated kid with a bunch of issues, so it's not a simple case (are any of these simple?)
But -- as far as progress -- we saw a play yesterday and he was able to sit through and enjoy (i think) the whole thing. When we went to a play in august, when he was in the throes of extreme PANS rages, we had to leave because he ran out screaming and shrieking. By November, the rages had pretty much stopped, but he was off the charts hyper and when we tried a play, we had a leave because he couldn't sit still. Yesterday was a success.
Teri got a reaction from Mommy2MCL in Need Help...Still Struggling
Perhaps the Zithromax is not effectively getting to the Myco. My daughters Myco numbers sky rocketed while on Azithromycin. Dr. added Cipro which seemed to be the one for us. Her Myco numbers are high and didn't seem to lower too drastically. Maybe she needs a higher dose or an abx change.
Crossing my fingers for you!
Teri reacted to BeeRae22 in Not sure what to make of this.....
So, I've posted about my dd several times now-- "daughter with emergent condition". Took her to a specialist, who agrees she has PANS symptoms and suspects possible Lyme coinfection. Well, she has now been on antibiotics for 48 hours, and for the first time in 3+ weeks she just ate something other than bread and ice cream!
So, she ate almost a whole hotdog. Now, this was one of the foods (one of the only foods) she would eat for awhile, until she eliminated that and went to strictly bread and ice cream. She was terrified to eat anything else. Not that she didn't want to, but she was terrified.
I don't want to look a gift horse in the mouth, but is it even possible to see improvement in symptoms in 48 hours? Or is this a psychological effect, having gone to the specialist and getting the "medicine that's going to make you better" ????? I have to wonder... I'll take it, either way, I've never been so thrilled to see someone eat a hot dog!!! what's everyone's experiences been with starting treatment? I'm sure I'll never truly know the answer to my question, but I sure would like to!
The doctor also told me that there might be a flare up of behavioral symptoms, and that that would actually be a good thing, because it would more accurately pinpoint the idea of a Lyme coinfection. Right ow, we're not exactly sure what we're dealing with. The Lyme test she had was negative, but I was told that that doesn't necessarily mean she doesn't have PANS. I've had several different sources tell me that there are a few different coinfection s that result in psych symptoms. The restricted eating was not her only symptom, she's had a number of other behavioral symptoms and personality changes as well.
It might be my imagination, but she seems a little more "lively" and animated today than she has been, and the school psychologist actually commented on how smiley and happy she seemed today....
Breathing big sigh of (hesitant) relief. For the first time in several months, I feel like there's hope for recovery..... What a difference a hot dog can make!
Teri reacted to philamom in Heading to Dr.Jones on Monday for our follow up
Yes, Amtrak. It takes about 1.5 hrs to Dr. B and around 2 hours to Dr. J. Cost little more, but a lot less stressful Taxis are right there, both at New Haven, and Stamford. If you are staying at the Doubletree, you can arrange a pick up/drop off service, free of charge. Just need to tip the driver.
It once took us 8 hrs to get to Dr. J's office with one pee break. bumper to bumper. And then to find out that my daughter lost a small stuffed animal during the stop. We called the office and Dr. J got on the phone and told us to drive back and find the stuffy. My daughter had major hoarding issues back then. We ended up getting to his office around 7 pm on a Friday, and a staff worker stayed behind to assist with the appointment.
Teri reacted to philamom in Heading to Dr.Jones on Monday for our follow up
Hi Teri. It looks like well be missing you by a few weeks - our appt is next month. We stayed at Premiere Hotel and Suites once. Not bad- each unit has its own kitchen. They have a lot of board games in large lobby area. Also offer free continental breakfast if I remember correctly. Outdoor swimming pool- of course that's of no help now.
Sometimes we add a night at NYC, or stay at the doubletree near Dr. B's office.
btw- Dr. J will be turning 85 this March. amazing he still wants to stay in practice - god bless him.
Teri got a reaction from Janny in Got no where fast!
So sorry for the wasted time, $, and disappointment. Not that surprised but the CHOPS Dr. Is narrow minded. If I were you I would see a Dr. that can at least get you moving towards healing. See you're previous post about your son's bloodwork .... And the responses that follow. There is a local Pediatrician out of Yardley Ped. that may be able to help get you started on some abx. She is my Dd's Pediatrician. Bring lab work. If you rally feel like its PANDAS that you are dealing with .... I would also schedule an appointment with a PANDAS specialist ASAP (Dr.T in North NJ or Dr. B in Conn.). Dr.B manages my dd PANDAS.
Most of us that have been in this boat have had similar experiences. Ours happened to be with a Pediatric Neurologist at St. Christopher's who we saw to rule out any neurological causes for Dd's sudden onset of tics at 5 yrs old. She brilliantly told us "Some kids have tics, some kids don't." Thanks Doc! Don't give up!
Teri got a reaction from Janny in Help to understand sons blood work
Just want to chime in here. Not sure what your child's symptoms are ..... But the numbers in his blood work are a big red flag.
With reference to Dr. Orman-Lubell .... She is my daughters Pediatrician. She works at Yardley Pediatrics and she has always been our Pediatrician. She is awesome!! She is NOT a PANDAS specialist but she is open minded. We are still grateful to her everyday for assisting us in an early diagnosis for our dd. Within one month of symptom onset, she ran labs, cultured for strep, and referred us to a Ped. neurologist to rule things out. To confirm diagnosis, we also saw Dr.Elia who was then at CHOPS. My daughter didn't have any "typical" symptoms of strep. She's a great Pediatrician - loving, compassionate, and respects parental input! To manage Dd's PANDAS we see Dr.B in Darien, Ct. We keep her updated on Dd's condition.
If you are looking for a new Ped. , she's great. As far as personal experience with PANDAS I don't know about that. If she suspects PANDAS in your child, she will likely refer you to see a specialist. She is open to learning but not too proud to defer to Dr.s that have more experience and PANDAS specific knowledge.
Good luck .... I am close by just over the bridge in NJ. We've been on this roller coaster ride for 2 years now. I wish I could say it gets easier. Would be glad to offer you any advice that might be helpful.
Hang in there ....
Teri reacted to mommybee in Doctor Spooked # of MEDs
I hope all is going better for you T. Anna and that you had a good holiday. It's a good thing that you dropped that doctor. It's never a good sign when a doctor at a big teaching hospital can't even spell the word "medicine". If you don't find what you are looking for in Drs. Trifileti or Hollander, I would recommend Dr. Bouboulis in Darien. Unlike Dr. T, he takes insurance for office visits and treats both PANDAS and Lyme. While not ILIADS trained himself, he consults with Dr. Charles Ray Jones who is the granddaddy of pediatric Lyme Disease. We have seen both doctors with excellent results. Please feel free to message me with questions or for further information.
Teri reacted to MissionMama in First IVIG coming up...why am I stressed?
Thanks to each of you.... it is never-ending, such a roller coaster....as is proven yet again as I got another call with the news that IVIG won't be this week, they are still doing some "research" with the dosing - as it is higher than what they typically use in kiddos with immune issues - you know, the "normal" kind of issues that are "real". HA. Actually, I totally get it, I am just joking about the "real" part as I know many of you have fought that battle a lot - and trust me, people like me that have had such a condensed journey to get to this point, thank you immensely. Our regular immuno is out this week and when our ped called their office he talked with the on call partner in the group who is not familiar with PANS/PANDAS at all. He initially looked at the labs (cunningham) and my son's chart notes it was a no brainer for him to order the IVIG, until he realized that the dosing is much higher than is typical for his patients. He wanted to consult with neuro, wait for our main doc to get back next week to make sure everyone was on the same page.... could this be the start of the run around? I am choosing to hope not....
Wish us luck.
PS. Teri - I totally get it. I realize how long many, if not most, have had such a longer road than my measly 2 months of purgatory...and I feel for each and every one of you/us that struggles daily. I pray for all of us.
Teri got a reaction from qannie47 in refusing antibiotics
My dd7 always gives us a hard time taking meds when she is feeling bad & needs it most! Currently she takes 8-10 pills a day plus probiotics, Motrin, & vitamins when she is feeling pretty good. She would become convinced that she "can't swallow them ... They will get stuck." When she was on liquid it was that it taste bad and I can't do it.
When it's bad .... We have to set a timer for a certain amount of time or no media (tv, computer, iPad or electronics).
My advice is to get Motrin into him ahead of the abx. Don't reward him for taking meds ... Require him to take meds to access whatever his currency is .... Which sounds like video games. It's critical to his healing that he takes his meds.! We tell our daughter that she needs to talk back to her PANDAS. Its playing a brain trick on her by telling her she can't do it.
I know it's easier said then done. Hang in there and good luck!
Teri reacted to Mommy2MCL in Neurologist or immunologist?
When choosing make sure you know that they are on board with PANDAS DR. We made the mistake of going to a mainstream neurologist who said I googled too much and diagnosed my DD with Tourrettes. Since then we have found a PANDAS specialist and are getting correct treatment.
Teri reacted to cara615 in What are the chances?
I got a note home in my son's folder today from the school nurse. She told me that the mom of another PANDAS kid wants to talk to me. She recently went to the conference up north and has tons of info to share. She also has a child in my son's class!!!
I was overcome with emotion as I am sure you could imagine. Its her middle child that has PANDAS and is being treated. I called her and we were on the phone for over an hour! She lives around the block.
Really, I can't even believe it. I feel so blessed.
Teri reacted to kimballot in Dr. B's office
I have worked with Dr. Bs office for a number of years and have watched his practice grow and his staff work to modify their procedures. I have also been frustrated if I am not able to get in to see Dr. B when I want or if I don't get a phone call back when I want - but that has only happened when my son is NOT in crisis. When in crisis, Dr. B always responds.
It is clear that the practice has not kept up with the demand, though Dr. B has added nurses, office managers, and a physicians assistant along the way. He is clearly stretched very thin, as are all the PANS doctors. However, I have to say that I have NEVER been treated with anything but respect and dignity by the secretaries and nurses. They have always been polite and caring once I get them on the phone.
From your comments it is clear you are very upset with the staff and I am sorry you had this experience. However, you may want to re-think the wording of your post as we try not to be derogatory toward our providers. It really does not serve any purpose and just makes us look like we are unreasonable to those who read our posts.
Teri reacted to LNN in Questions on best lyme combos....
Most LLMDs use one abx that's intracellular (zith) and one that's extracellular. We stayed on zith the whole 2.5 yrs we treated. We then rotated extracellular abx like rifampin, cefdnir (big herx, crosses the BBB, but also big gains), bactrim, augmentin. We didn't use dorxy b/c he didn't have many adult teeth yet. DS could not handle tindamax - not even half doses or only one day/wk. We tried it twice.
The supplements that helped most were Core (zinc+B6) from Biopure, a B Complex that had the right combos/doses for his methylation issues (for him, a decent amt of niacin to calm the anger and adenoB12 to help with overmethylation), Vit C & D3, magnesium and milk thistle. We used many other supps over the years, some helped for that moment, some didn't help much or it was hard to say. We used daily motrin for a long time (he can't tolerate curcumin).
While I wish we'd have been able to use tindamax longer (5 weeks was our longest stretch), he did get well without that on board. If biofilms/cysts remain an issue, you can also ask about nattokinase or NAC, which as mucus thinners and can eat away at the films. There are options.
FWIW - DS used to have horrible rages, very argumentative, had to be right, controlling, "scripted" everyone else's actions...he was a little dictator. Now, he's generally able to let things slide after a mild protest, able to accommodate opposing views and does what he's asked without it being a major confrontation. Some of it's maturity but most of it's recovery. Ian won't be incorrigible forever. You'll find the right blend of things for him and get him back. Persistence pays off.