cobbiemommy

We give Florastor with the abx and any probiotic with lactobacillus and bifidobacterium twice a day. Usually right after school and before bed. The plus side to all of this is that his nasal symptoms have really improved!! Also, I take the "pearls". They are very good for such a tiny pill. If you have not given probiotics before, start slowly. I did not and my stomach was a mess for a couple of days while I got used to taking them. Oops! Cobbie

Falling Apart, You put into words what many of us think and feel, but are unable to say. I am totally exhausted mentally and physically as I'm sure you are as well. If PTSD is the definition of "waiting for the other shoe to drop" all the time, then that is me. We all have had so many bad experiences on a daily basis that we are somehow programmed to be afraid of what will happen next. We have two in our household with Bartonella and that is two too many. I dream of going to Hawaii, but I know that if we went now, it would just be a trip filled with arguments (theirs) and tears (mine). So, I try to keep up hope for the future. Always know that this is a safe place to vent. Cobbie

I also like it. My son's aspie features are falling by the wayside very slowly as he improves with antibiotics for Lyme and Bart and we keep the strep out of the picture. I think many autistic children have immune system disregulation. I do not see it as false hope, I see it as hope. Cobbie

DS, 13, is slogging his way through Lyme/Bart and Pandas treatment. We are doing allergy shots, antibiotics, IVIG, and he is currently taking an antidepressant (low dose). Dr. J wants him to get to a psychiatrist to get his meds switched. My problem is that we don't have many psych's in our small town and the ones I have seen--yuck. These were all pre-PANDAs and Lyme diagnosis. Pediatrician is willing to change meds, but is a psych a better choice? No ideas at all on which meds to try; previously we tried Prozac and Celexa. Also, to complicate matters, Dr. B wants to taper down off of ADHD meds. He is not on a big dose, but I worry that he won't be able to pay attention or will get in trouble. He is sooooo grumpy and cranky (at least with me). I probably would be too if this were all happening to my body. Any words of wisdom?? Cobbie

Oops, double post! Cobbie

The great news is that veterinarians seem to be more understanding than human doctors. They just seem to get it.

Dawn, Just wanted to let you know that I am thinking of you. I hope your son and husband have a pleasant experience. It is hard for us moms to let go and have someone else do the legwork for us. My son loved his first plane ride and the free Sprite on the plane! Keeping you in my thoughts and prayers in the days to come. Cobbie

This morning I was at local clinic inside the grocery store and a there was a gentleman and his wife there. The gentleman was about my age and having a seizure. I heard his wife say that he had been suffering from a seizure disorder for many years. Trying to get out of the way and be inconspicuous, I asked to go back to a treatment room. The most interesting thing, I heard the nurse practitioner say as the paramedics were working with him that he tested positive for the rapid strep test. I said many prayers for the gentleman and hope that he will have a full recovery and get over his strep ASAP. Strange...

So good to meet you and Philamom. I am always amazed to hear how our stories are the same and yet so different. Ds really enjoyed his time with the other kiddos!

Ds, is 13 and still getting strep and is still very symptomatic of PANDAs, although doing much better. DD is 16 and still getting strep. The worst part, I am 43 and still get strep about once a year. UGH. I think it is just luck of the genetic draw. A good immunologist could help you with this question.

Awesome!!!

DS, was out like a light by nine. He made it through the false alarm fire drill and went straight back to bed, didn't say one word-just went to sleep. His Bart rash has already flared in just a few hours. I look at him and think, "What will it be like, when you are well??" He is sleeping so peacefully and I am praying because I do not feel peace. Hopefully one day, all our children will be well. Cobbie

Streptozyme titer. Has your child had an immune panel workup? Because if your child has no strep antibodies, some of the anti-dnase tests might not react. Ds's never did, but he had strep.

Better, much better. We are nowhere near "cured", but he is getting better and having some much better days. We had a great last couple of weeks, which I think can be attributed to a steroid taper. Little things are changing: like not being as irritable, being more interested in the world around him, and dealing better with adversity at school. He is also taking abx for bartonella/lyme and to cover him for strep. No one thing is helping him, lots of big things are helping him. He still has a lot of fatigue. He is pooped by the end of the day and by the end of the school week, he is wiped out.

We made it through three airports and one rental car company and are now sitting in the hotel getting ready for IVIg #3 tomorrow. If anyone else is going to be at Dr. B's I will be the mom with the tall good looking 13 year old with dark hair and a brand new 3DS. Bribery can be a good thing if you think of it as Positive Reinforcement!! Would love to talk to any other parents while we are here. It is a long two days. Cobbie

Not much help on doctor or resources, but you are aware that Minnesota and Wisconsin have a horrible Lyme problem? My sister lives there and even she did not know about all the cases of Lyme in MN. I know of a good LLMD that has treated patients from MN before. PM me if you want his name. Cobbie

I hope I am not breaking any rules, here, but this book struck a nerve. Looks a lot like PANDAs, the doctors called it anti-NMDA-receptor encephalitis. -------------------------------------------------------------------------------- Share Brain on Fire: My Month of Madness [Hardcover] Susannah Cahalan Susannah Cahalan (Author) › Visit Amazon's Susannah Cahalan Page o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o This title will be released on November 13, 2012. -------------------------------------------------------------------------------- Book Description Release Date: November 13, 2012 One day in 2009, twenty-four-year-old Susannah Cahalan woke up alone in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. A wristband marked her as a “flight risk,” and her medical records—chronicling a monthlong hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability. Only weeks earlier, Susannah had been on the threshold of a new, adult life: a healthy, ambitious college grad a few months into her first serious relationship and a promising career as a cub reporter at a major New York newspaper. Who was the stranger who had taken over her body? What was happening to her mind? In this swift and breathtaking narrative, Susannah tells the astonishing true story of her inexplicable descent into madness and the brilliant, lifesaving diagnosis that nearly didn’t happen. A team of doctors would spend a month—and more than a million dollars—trying desperately to pin down a medical explanation for what had gone wrong. Meanwhile, as the days passed and her family, boyfriend, and friends helplessly stood watch by her bed, she began to move inexorably through psychosis into catatonia and, ultimately, toward death. Yet even as this period nearly tore her family apart, it offered an extraordinary testament to their faith in Susannah and their refusal to let her go. Then, at the last minute, celebrated neurologist Souhel Najjar joined her team and, with the help of a lucky, ingenious test, saved her life. He recognized the symptoms of a newly discovered autoimmune disorder in which the body attacks the brain, a disease now thought to be tied to both schizophrenia and autism, and perhaps the root of “demonic possessions” throughout history. Far more than simply a riveting read and a crackling medical mystery, Brain on Fire is the powerful account of one woman’s struggle to recapture her identity and to rediscover herself among the fragments left behind. Using all her considerable journalistic skills, and building from hospital records and surveillance video, interviews with family and friends, and excerpts from the deeply moving journal her father kept during her illness, Susannah pieces together the story of her “lost month” to write an unforgettable memoir about memory and identity, faith and love. It is an important, profoundly compelling tale of survival and perseverance that is destined to become a classic.

If I ever get to travel somewhere besides a PANDAs doc, I'm definitely going to Italy!

It is good to know what you are up against and now you know! Rifampin and Biaxin were and are very effective for my son against Bartonella. We started seeing improvements within weeks. We love Dr. J; he is a little hard of hearing; just so you know. He is sooooo smart. Best of luck to you. Cobbie

I would just explain that this course of treatments is for a very specific and somewhat rare condition for your child. The flip side of that is if your child is taken off the medication, their quality of life will go down hill. Explain that the antibiotics are to "cover" your child from getting strep in the future. They assist their immune systems because their immune systems are deficient. I have a sister in law with COPD that is taking long terms antibiotics to ward off infection. As soon as she goes off antibiotics she gets sick and ends up in ICU. She has coded twice and been brought back by some wonderful doctors and nurses. Would your "green" friend insist that she be taken off long term antibiotics so that "possible" antibiotic resistance not happen? I do not have any patience for people like your friend. They are basically questioning an M.D.'s knowledge of the situation and even yours as a parent. Stand strong for what you know is right. Cobbie

Ds, 13, just left the house at 7:45 p.m. to go combine corn with his father. For so many years of his development he would not go with his dad because he had to be with me. For anyone not from an agricultural background, harvest is both hard work and a minicelebration. For kids in a farm family, especially boys, it is fun. All the big equipment is being used, the grain is being put in the trucks or bins, and going to the mill means getting to help unload the corn or beans. The older the child, the more they get to do. My husband drove his first tractor at seven, his first combine at twelve and his first tractor trailer at sixteen. There are a lot of life skills learned at this time of year. For the last six years, my son has not wanted to participate. If he went with his dad, it was under duress. Now, he can't wait to go! In the last few weeks, he has helped change oil in tractors, picked up corn left behind by the combine, and went to the grain mill a few times. I feel like I am getting my son and family back. All I can say is that I hope this lasts because it is so wonderful. I will never take this feeling, or his health, for granted. I just wanted to share my happiness with some parents who really get it! Cobbie

My son has Convergence Insufficiency. He also has amblyopia (lazy eye) and astigmatism (dad and sis have astigmatism as well). Here is the strange part of the story. After he had his first IVIg we went back for a scheduled eye exam, he is seeing better. The doctor did not know what we had done medically since his last appt, so he was very surprised when I filled him in. He was also not surprised that the IVIg helped. That being said, we still had surgery for the amblyopia this past summer. Son is doing very well and loves the way that he is seeing the world. He still cannot see things in 3D, but not everyone can see 3D anyway. Very interesting.

Have to agree with SoSudden. Do not take a child to Children's Mercy in Kansas City, MO. The doctor ignored my son's symptoms of pain in his legs and crushing fatigue. She kept trying to get us to take him to a psych or get him social skills. A short time later he was found by Dr. B to have a sky high white blood cell count and intracellular strep as well as still having Bartonella. Run, don't walk, from this hospital for PANDAs. Cobbie

Call Dr. B ASAP. In our case, when things went south (due to allergies being horrible) he prescribed a steroid taper. It worked very well to calm down his emotional rollercoaster. We also see Dr. B and Dr. J. Hope today is better. Cobbie

In your post you said that you were not smarter than a fifth grader, but I think you will be pleasantly surprised how smart you are as you get into teaching your child. I taught in a parochial school and although most of the teachers were very kind, they were not all genius types. That been my son's experience in public school, as well. You will be able to get a lot of work done in a short period of time because you do not have to deal with 20 to 30 different personalities and multiple learning styles. You will be able to really see how your child learns and adapt coursework to those learning styles. Basically, the same content, but different learning style. Also, you can tailor the curriculum to your morals and values. Tim Tebow, in his autobiography, states that he is dyslexic and his mom taught him at home all the way through school. He then went to Florida and graduated with honors. Do not think that you are shortchanging your child by homeschooling, quite the opposite! Good luck!