mdmom got a reaction from JuliaFaith in Could this he the culprit for PANDAS?
Thank you for putting all of that info in one place. I subscribe to mercola.com and every day I read about something that is affecting our food and ultimately our health and I'm frightened. Every time I waiver in the grocery store over $7/lb organic chicken breast or $4/lb organic apples, I think of my children and how sick they are and how we have spent almost 3 years and 10's of thousands of dollars on medicines and supplements trying to regain their health. Sure, I'm going broke trying to put good food on the table, but it's pay now or pay more later in my book.
mdmom got a reaction from nicklemama in Really Confused
A few things to keep in mind....
1) Unfortunately, many of us here travel far and pay out of pocket to see doctors that are willing to treat our children with PANDAS/PANS. The most important thing is to get help now.
2) Strep is only one of many triggers of PANDAS/PANS. Work with your doctor to look for other triggers - viruses, tick-borne diseases, mold, etc.
3) Make sure your son's doctor checks immune function - some children with PANDAS/PANS have underlying immune deficiencies.
4) If you pursue IVIG, do not call your insurance company and tell them that your child has PANDAS. Most insurance companies do not cover IVIG for the diagnosis of PANDAS - in fact, some companies specifically list this as an excluded diagnosis in their policies. Some docs have had success in getting it covered under an post-infectious encephalitis dx, some use immune deficiency codes.
mdmom reacted to kimballot in I watched a TV show tonight
I watched a TV show tonight. It had nothing to do with PANS, PANDAS, PITAND, mental health, physical health, health care system, parenting, or my job. It was a one-hour who dunnit with commercials.
I remember when I used to watch these at least one or two nights a week. That was four years ago.
Four years ago in November 2009 my son contracted H1N1 triggering yet another period of problems with attention, handwriting, executive function, separation anxiety and urinary frequency. Subsequent investigation finally led to the PANS diagnosis along with discovery of a sinus cyst, immune deficiencies, and mycoplasma. Surgery, antibiotics, steroids, IVIG, hospitalizations, inability to attend school, and multiple trips to out of town doctors and local doctors ensued.
I believe his case is one of the more complex cases. He is now attending school and continues to receive IVIG regularly. He is still tired much of the time, but is learning in school and is a great, fun teenager. And me... I am a Mom who watched a TV show tonight. Now THAT is amazing!
Hang in there folks... we are all going to beat this thing!
mdmom got a reaction from nicklemama in Rare Nucleated Red Blood Cells
Thanks for all of the encouragement. The appt went really well. The hematologist was very progressive - she accepts PANDAS and Lyme & Co and long-term abx use. She said that there are studies showing long-term abx use is actually safe for some people and that in my son's case the benefits outweigh the risks. She did feel like the meds could be affecting his bone marrow, especially the anti-parasitics, which she said can cause the nucleated RBCs to leak into the blood.
She will be following him monthly since his neutrophil and platelet counts are always very low. She said I am to contact her directly if his fever goes above 100.4 because of his neutropenia - she is basically treating him like a cancer patient since he is at high risk for infection - specifically a central IV line infection. (Cross my fingers, he has had a central line for 2 years and no infections).
She may do a bone marrow aspiration at some point to check the marrow, but said it is not warranted just yet.
I was shocked that a specialist could be so helpful and understanding. I have hit so many brick walls with specialists and have had to defend my son's treatment when a doc hasn't understood PANDAS or Lyme.
Slowly I am building a team of docs that understand my son and are willing to help - we have a supportive family doc, a very smart LLMD, a chiropractor, an integrative dentist that does ART, and now a hematologist.
mdmom got a reaction from rowingmom in Wrapped like a Mummy
I've been on this forum a long time and many here have reported that their children with PANDAS/PANS have sensory processing issues. My DS16 was treated for sensory issues for many years by an OT before he was properly dx with PANDAS/PANS. I even made a 10 lb. lap pad for him to use while he was sitting and he would move around the house in something called a "body sock." Sounds weird, but his brain was obviously so scrambled and not processing input correctly that he needed extra sensory input to override the confusion in his brain. After 2.5 years of aggressive tx and 10 monthly HD-IVIG, his sensory issues are hardly noticeable. I imagine over time with continued tx, your son's sensory issues will level out.
mdmom got a reaction from peglem in Reminder about Tylenol
Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system.
Here is a good article on glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione.
In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day.
We only use Ibuprofen and completely avoid the use of Tylenol.
mdmom got a reaction from bhenry in Long Term PANS and IVIG treatment
I will share my DS16's history and maybe you will find something useful in here.
Dx with PANDAS at age 13 but symptomatic from age 4. We consulted 4 doctors well-versed in PANDAS and all of them independently told me that my son would need IVIG to recover because his case was so chronic. However, our insurance company would not pay and we could not afford the treatment. The 5th doc we consulted is an LLMD (lyme-literate medical doctor) and this doc dug deeper and found infections beyond strep - Lyme, Babesia, Mycoplasma, Bartonella, viruses. Some of these infections were diagnosed clinically (labs showed negative on many infection panels) but I trusted the doc to treat based on clinical symptoms. It was 2.5 yrs ago that we started treating aggressively for infections. We also addressed diet (low sugar, gluten and casein free, organic), methylation, ERP therapy at Rothman, lots of supplements including probiotics. My son has slowly made progress. This doc also found an immune deficiency - his total IGG levels are low with 2 out of 4 subclasses of IGG being low.
While we treated infections, I appealed our insurance company multiple times to get IVIG covered for my son's immune deficiency dx. They eventually approved it and he started on monthly IVIG this past January.
After the 5th IVIG (1.7g/kg), he tested positive for some of the suspected infections and he started responding with more physical symptoms - seems physically sicker and psychiatrically better. The IVIG treatments seem to be giving his immune system a fighting chance and I believe he is finally on his way to clearing the deep-seated infections that were lingering for so long.
Every child's story is different. We are one of the unfortunate cases where my son went very long without being properly diagnosed.
Even though we had to wait 2 years from first PANDAS diagnosis to first IVIG treatment, I have not regrets. Knocking down the infection load was a key part of my son's treatment as well as treating other issues mentioned above.
Have you completely addressed infections? tested immune function?
mdmom got a reaction from nicklemama in CDC Estimates 300,000 Americans DX Lyme each year
Many on here deal with Lyme and yes, I agree it can kill - not only by directly affecting a body system, but it can cause extreme depression and has led to suicide in some cases.
It has wreaked havoc on my family, my finances, our family's future.
The more mainstream press this awful disease gets, the better.
mdmom got a reaction from otksmama in new and hanging on by a thread
I would like to add that some children with PANDAS/PANS also have immune deficiencies and therefore, they do not produce enough antibodies to properly fight infection. My DS16 also has a primary immune deficiency. In our search to find help for my son (who was 13 and a chronic case by then), we ended up at a Lyme-literate-medical-doctor (LLMD) who clinically diagnosed my son with multiple infections (some tick-borne). He was negative on all the infection panels except for strep and mycoplasma. But I trusted our doc and she aggressively treated him for Lyme, Babesia, Bartonella, Mycoplasma, Strep, Candida, viruses. Finally, after 2 years of aggressive treatment with antibiotics, antifungals, antivirals, my son started receiving monthly high-dose IVIG (HD-IVIG). After 4 treatments, the doctor tested for infections again (he had been tested multiple times and always came up mostly negative), and he tested positive for all of the above infections. We had waited a sufficient amount of time between IVIG treatments so that the donor IG did not skew his test results. The IVIG helped his immune system actively fight infection. Antibiotics only do part of the work in fighting infection; one's immune system is supposed to do the rest of the work.
Whether you are dealing with Lyme and co-infections or not. LLMDs are very good at diagnosing and treating weird infections that may not be showing up on blood work.
I've been around this forum quite awhile. My son is a chronic case, so don't be discouraged by those of us that have been treating for years. He was symptomatic during his toddler years and wasn't diagnosed until age 13. The fact that you are seeking help so early in the game for your son is wonderful.
One thing that many agree on is that you must address underlying infections if you want to see lasting, healing results. IVIG is not a quick-fix for all - and it's costly, especially considering that most insurance carriers will not pay for IVIG for a PANDAS/PANS diagnosis.
My advice: slow and steady wins the race. Like others who have posted on this topic, we have addressed many, many layers of issues including the following:
diet - we are 100% gluten/dairy free and as much organic as possible, low sugar diet
gut health - we use high doses of probiotics (it's estimated that 70%+ of your immune system is in the gut)
inflammation - we use circumin (and ibuprofen when there's a flare)
hydration - drink lots of good-quality water
hidden infections in sinuses - we use antifungal and antibiotic nasal sprays
infections - long-term antibiotics
yeast - antifungals to keep yeast at bay
immune support - low-dose naltrexone
Best of luck to you. This forum will be a source of comfort and good information.
mdmom got a reaction from JoyBop in DD getting lVlG today @ Mass General Boston!
Same here with the vomiting fear - it is one of my DS14's biggest OCD fears, always has been. We can't even talk about vomiting. It seems like a lot of people report this about their PANS kids. My son also won't wear/use anything that reminds him of a time when he vomited, even if it's years later.
Hope the IVIG went well. My DS14 is waiting for approval from insurance for IVIG - hasn't had it yet. I'm encouraged by your story that it is helping your 18 year old daughter. I read a lot about younger kids getting help from the treatment, but not too much about teens.
mdmom got a reaction from Mary wag in Dr. Breitchwerdt
My DD13 has a wicked case of some strain of Bartonella that we haven't figured out and she is the reason I was planning on going.
However, she went to visit her grandparents home in PA (4 hours away) and went into a Bart flare as soon as she got there. I had to go retrieve her and bring her home since her gparents aren't understanding or comforting.
I was bummed, as I was hoping to gain more insight about this awful disease. Our LLMD heard him speak and said he is awesome. Our doc also knows some of his story...
Dr. B is convinced that his own father died of Bart (on the Eastern shore of MD) and this spawned his work (he's a veterinarian) on human strains of Bartonella and his subsequent development of Galaxy labs, which tests for all strains of Bart that infect humans. LabCorp and Quest only test for 2 strains - Bartonella Henselae and Bartonella Quintana.
mdmom got a reaction from Kathy4Him in Cellcept - Working!
I'd like to offer that one of the best things we have done for my son (and yes, it seems drastic) was put a central catheter in him.
When we started IV abx in Jan 2012, doc ordered a Hickman (central IV line in his chest) to be inserted.
He has refused to eat (fear of vomiting) and we were able to give him TPN through thte line instead of sticking a feeding tube in him.
He gets monthly IVIG through the line.
He gets daily IV abx.
He gets weekly blood draws - blood is drawn directly from catheter.
We give him hydration (Lactated Ringers) when he feels "funky," and it perks him up - doc says it flushes out the "die off."
Does he need to get over his fear of needles? Absolutely. And we are headed to Rothman (again) in August to work on this.
But the central line has been a Godsend in terms of treatment that he might have otherwise refused.
mdmom got a reaction from rowingmom in Secrets!
My DS15 was diagnosed age 13 with PANDAS. 6 months later after seeing 4 PANDAS specialists, and not being able to find the help we needed because he was so chronic and had gone undiagnosed for so long, we ended up at an LLMD who found multiple infections.
My son's medical issues have now become, sadly enough, my hobby. I research, read anything I can get my hands on, participate in this forum, attend conferences, etc. I have the knowledge that mental illness and in our case, autism (Asperger's) has a huge medical component.
Using my gathered knowledge, I look at people with mental illness, developmental issues, etc. through a different lens than I did before my son was diagnosed.
But I have to tell you that before I even learned about PANDAS, I probably wasn't ready to hear the information.
I have close friends who have children with similar issues to my son's. I want them to listen to me. I want to help their children. But they are not ready to hear what I have to say, or they would be searching for more answers already.
My point is this: Everyone is at a different place in their life's journey. People must be ready to want answers in order to get answers.
mdmom got a reaction from peglem in Help interpreting first set of lab results - thanks!
The high Mycoplasma IGG could indicate an active (probably chronic) infection. An IGM response is an early antibody response. Eventually the immune system stops making IGM antibodies to infection and the IGG antibodies take over. Once the infection is cleared, the IGG level should come down.
Our LLMD interprets high IGG levels as chronic infections that need treatment.
Mycoplasma is very hard to irradicate. Look at the recent posts on Mycoplasma.
mdmom got a reaction from JuliaFaith in Interesting perspective from Beth Maloney
This came to my inbox from Beth Maloney, author of Saving Sammy and advocate for PANDAS families. I am posting it here with her permission:
It rained here for most of Memorial Day Weekend. Just as I cozily sat down to write a warm & fuzzy email about Sammy's graduation including a big thank you for all the cards (still coming in), the phone rang. It was Marianne Fox calling, the mother of Grant Acord. He had just been arrested in connection with the high school bombing plot in Oregon.
Marianne and I had been in touch since the fall of 2011, and she gave me permission to share this information. Marianne contacted me in 2011 because a few months earlier Grant had been diagnosed with PANDAS by Providence Medical Center in Portland OR. He had extreme OCD, anxiety, and depression, and she'd been unable to find a physician who knew what to do. His strep titer was 950. I gave her as much direction as possible, and she began her search. She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster.
I've done a couple of interviews since then. Everything one says doesn't end up in an interview, and the interviewee has no control over the edits. But I want you to know that they've all asked, "were you surprised." My answer was always, "no, but not specifically about Grant." I remember watching the Newtown coverage and wondering whether the shooter might have had a brain infection, and I knew it was unlikely that anyone had bothered to check. I've wondered because I know your stories. I’ve read about your children who've become violent, punched holes in walls, attempted suicide, pulled knives on family members, and jumped from moving cars. I carry those thousands of stories with me everyday, and it was inevitable that one day I'd get the call. PANDAS isn't an excuse for Grant's behavior; it's a factor in his behavior. It's why when the push to pay attention to mental health came after Newtown that I reached out for the Obamas and the Bidens.
Shying away from how serious PANDAS can become is, I believe, is a mistake. I know some parents disagree with me. They are distraught that PANDAS has been linked to the possibility of such a horrible event. I have the opposite opinion. Perhaps THIS is what it takes to get elements of medical community off their high horse of hubris and to begin acting like grown-ups. I am sick to death of the ridiculous and illogical position taken by so many who are uneducated in the field and yet make pronouncements as if they are experts. I am tired of reading that PANDAS is "rare," "uncommon," and "controversial." When I read a doctor say, “I’ve never seen a case,” I think “because you’ve never looked for one.” And when I read that there's "no science" to back it up, I wonder how they could have missed the hundreds of evidence based studies. I’m disgusted by the way parents are treated by hospitals who accuse them of “doctor shopping,” “Munchausens by Proxy,” and try to steal their kids. Thomas Insel MD, the director of the NIMH, expressed my frustration more gently in his blog of March 26, 2012. He traced the history of neuro-syphilis back to 1912 and wrote, "The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept." Dr. Insel is in a position that demands he be politic in his comments; I am not. I bluntly believe the attempts to cause children with PANDAS to go untreated constitute medical child abuse.
I know you are not all facebookers, but I truly think you should take a look at my fan pages especially when PANDAS is associated with a national event. I don’t always have time to keep you up to date. The pages are always full of all the recent interviews, articles, and opinions. You do not need to join facebook to do this - just go to the LINKS page on savingsammy.net and click. For an excellent recent article about PANDAS please see The Walrus, a highly respected magazine in Canada. Here is the link...be certain to read the postscript. http://thewalrus.ca/a-feverish-debate/
On a lighter note, as promised, here is a photo of the world's most famous PANDAS success story...What does a young man do when he is twenty-three years old, has already helped to change medicine and impacted countless lives? When he has thousands grateful for his very existence, and has graduated from the computer science school at Carnegie Mellon University? He launches a start up! Keep you fingers crossed for Sammy's success. He so deserves it.
mdmom got a reaction from MomWithOCDSon in So lost! Now what?
My son is also 15 and we originally consulted with 4 PANDAS-only docs. While 2 of the docs were willing to treat strep and try steroid bursts, neither looked deeper for other infections.
We finally ended up at a Lyme-literate doc that clinically diagnosed my son with Babesia, Bartonella, Lyme. She also serologically found Mycoplasma (high IGG that other docs brushed off), Epstein Barr, Parvo.
We treated infections one-by-one for 2 years and then my son started HD-IVIG monthly this past January. My son made huge progress as we aggressively knocked down infections, addressed detoxing issues, cleaned up diet (we are gluten/dairy free), and supported his immune system with medications and supplements. It requires a lot of patience and he still has a long way to go.
He now tests positive for Babesia (WA-1) and I suspect as his immune system continues to regulate with IVIG, he will mount antibody responses to other infections over time.
My point is this: many children with PANDAS/PANS have suppressed immune systems that are often suppressed by infections (like Bartonella and Babesia, both of which mess with immune function). Just because your son doesn't test clearly positive for some infections (and most typical tests for infections through Quest or LabCorp are antibody-based tests), doesn't mean the infections aren't there.
I highly suggest you find an LLMD to look deeper for infections. My son was seen by Dr. T and we occasionally still consult with him; however, he is not a Lyme-literate doc. Many folks on this forum consult with a PANDAS/PANS doc + an LLMD for treatment. We just happened to find one-stop shopping in our Lyme doc.
Is it costly, time-consuming, sleep-depriving, stressful, scary, confusing, etc. to dig deeper and make the commitment to find and knock-down infections one-by-one? Absolutely. But the life-long gains of getting to the root of the problem are immeasurable.
I also remind myself and my son that he didn't get sick overnight nor will he get well overnight. He had the misfortune of being diagnosed very late at age 13 when 5 docs agreed he probably originally developed PANDAS/PANS at age 4.
Hang in there and keep digging. You will find answers.
mdmom got a reaction from EAMom in HELP! IVIG for PANDAS $$$$
I agree with being conservative with IVIG. We have been treating infections and underlying detox and gut issues for 2.5 years now (and quite aggressively with IV meds for the last 16 months) and my 15 yr old son has made slow, steady progress. We added HD-IVIG treatments in Jan. and he continues to make slow, steady progress. It's not a magic bullet.
I would urge you to find a doc that is willing to do thorough testing and look at clinical symptoms for infections (including Lyme, co-infections, etc) before you spend a lot of money on IVIG.
IVIG will not have long-lasting effects if there are underlying infections.
mdmom got a reaction from ChrissyD in Good Advice for all of us when dealing with doctors
Many of you probably have had similar experiences....
I have taken my son to many, many medical professionals. By the time we got to our current treating doc, I started counting the number of medical folks we had seen. She was #25. She has helped us the most.
Why is she the best so far? Because she takes a lot of time with us, listens, is respectful and even empathizes on a personal level.
I have fired doctors after one visit. I now believe that you can tell in only one visit whether or not a doc is a good fit.
I am currently reading the book Blink by Malcom Gladwell and he states the same on page 43:
"Next time you meet a doctor, and you sit down in his office and he starts to talk, if you have the sense that he isn't listening to you, that he's talking down to you, and that he isn't treating you with respect, listen to that feeling. You have thin-sliced him and found him wanting."
Thin-slicing refers to the concept that you can form a pretty accurate opinion of a situation or person in just short clip of interaction or time.
When finding help for your child, listen to your gut feelings about a doc. I wish I had done this so long ago. Perhaps the doc that now helps the most wouldn't have been #25 on my list.
mdmom got a reaction from ChrissyD in Leaving On a Jet Plane....(With a Raging Child)
I suggest calling the airline's customer relations department and letting them know of your daughter's current state. They may let you board first with passengers with disabilities, which might ease some of your daughter's stress when boarding since being touched and bumped during boarding and deboarding is inevitable. Also , the airport puts everyone on edge even on a good day, and I would worry that the TSA might have issues with outbursts and rage if they aren't informed ahead of time that your daughter is in a fragile state right now and you are traveling to get her help.
When I flew Southwest with my son 2+ years ago and expected him to have outbursts in the airport and on the plane, I called ahead and explained the situation. They made a note on his file (and mine) that he needed extra care, so it helped everyone involved. They let us board early and it helped immensely.