Columbus Support Group Mtg 12/4/14 November 16, 2014
Holding my breath November 11, 2012
We are approaching a year since we entered the twilight zone with the wonderful illness that is known as PANDAS – since our diagnosis we thankfully have had only two recurrences, one happened just before the school year began – and both boys started exhibiting symptoms within days of each other and the other recurrence happened just to my middle son (the one with the more severe symptoms). They both went on a round of antibiotics and all symptoms subsided. I am so afraid of going back to that place where we were a year ago, that I am super sensitive to their mood, their reactions, their comments – could it be PANDAS or could it be that he is just a 13-year-old boy! Will this nervousness ever ease? I think only time will tell, but I hope for my sanity it does. To be on hyper alert of how he is feeling, each morning when I wake him, I wonder is this the day he starts crying saying how horrible he feels – thankfully we know what causes these feelings and we have antibiotics on hand at all times, but I wonder what if I don’t see the signs early enough?
This is the part of PANDAS that makes mothers feel crazy – wondering should I give them antibiotics now, should I wait? I felt crazy before the diagnosis because of his symptoms and how severe they were and how fast downhill they both went – felt like my world was falling apart around me. Now we have a diagnosis, we know that antibiotics and a gluten-free diet help them with their symptoms, yet I am still scared, what if I let the symptoms go on too long? Holding my breath…waiting, monitoring, patiently supporting, educating myself on new research and telling myself to breathe. Dealing with PANDAS is a journey that our family will all go on together to help each other figure it out and support others in their journey with this illness.
Gluten: Zero Global Preview August 8, 2012
Dr. Rodney Ford is releasing a book Gluten: Zero Global here is a preview of the book – you might need to register on Smashword – but it is worth it to see what he has to say about Gluten. He feels, as I do also, that everyone should stop eating gluten – the Standard American Diet (SAD) – very funny acronym by the way, is making everyone sick, it is truly a sad way to eat. The majority of processed foods contain some form of gluten. People are becoming extremely overweight, diseases that were rare are increasing steadily, people are dying at younger ages, cancer rates are increasing…the list is endless, unfortunately.
I have proof with my family that gluten is evil. We did not think we had any issues and then when my middle son got sick with PANDAS and we found out he had a high level of gluten antibodies also in his system – we all became gluten-free. Since this we have discovered that my youngest has one of the genes that is known to cause Celiac. My middle son has always been a great eater – eating tons of fruits and vegetables but we also have had bread in the house and according to the food pyramid – you should eat healthy grains and the more they pack into a loaf of bread the better! We have now been gluten-free for five months and the drastic difference in all our health is unbelievable – Both my husband and I feel more energetic, happier, no bloated or upset stomachs, we have lost weight. With the boys – they are more energetic, my middle son has a twinkle in his eye again, and my youngest has commented that his chest is not tight – he feels his asthma has gone away and we have not used an inhaler in the past 5 months. He has been battling with asthma since he was one! I truly believe these results are because we removed gluten from our diet!
I encourage everyone to read his book and go gluten-free for a healthier life and future!
Paleo Parents June 15, 2012
When creating this blog, my intention was to post more on PANDAS, but here lately it seems I have been posting much more on gluten-free eating than anything. I was doing research last night on the internet between PANDAS and gluten intolerance, I did find some interesting stories and studies. Researchers are wondering if a child with PANDAS, might have always been gluten intolerant but it was mild, and then PANDAS came along and everything flared up, including the gluten intolerance. Causing many autoimmune things to occur at once.
While searching for interesting Gluten-free articles, information, etc… I came across this great website called Paleo Parents and they have written a book Eat Like a Dinosaur, a recipe and guidebook for Gluten-free kids. I can not wait to get my copy! I will report back on the interesting information and the recipes that my boys like the best 🙂
“Open the door, get on the floor, everybody EAT like a dinosaur!”
Have a great weekend 🙂
Curcumin Anyone? May 26, 2012
Before PANDAS came into our lives, I had heard about and even cooked with Tumeric, but I did not realize the many health benefits in this one spice. At the time my boys’ were diagnosed with PANDAS, they started antibiotics, gluten-free diet (because of the test results showing high gluten intolerance), and the addition of Enhansa ( blend of curcuminoids) along with their daily multivitamin.
As the boys started getting better, I wondered what is really working, we changed so many things at one time. I tried to tell myself, it doesn’t matter they are getting better, but I still wondered. Then one weekend I ran out of Enhansa and found out that everything we were doing was working, because by Monday morning both boys woke up feeling horrible, complaining of their stomach hurting, headache, body aches. I RAN to the doctor’s office to get more Enhansa and by Tuesday night they were feeling better. Nothing else in their diet, supplements, or antibiotics had changed except for the missing Enhansa. That convinced me that there is really something to this spice, now I have researched it more and scientist show that it is helping with cancer, Alzheimer’s and other autoimmune diseases.
Check out the PANDAS support group – Columbus, OH Facebook Page come ask questions, have discussions, meet other families of children with PANDAS.
Puzzling Pediatric Diagnosis – PANDAS, PANS, PITAND May 17, 2012
Check out this video that a Cleveland group of parents and doctors made to help get the word out about PANDAS. You can also find this group on Facebook at: Puzzling Pediatric Diagnosis
Dr. Jan Kriwinsky, a pediatrician in Beachwood, Ohio is now diagnosing AND treating PANDAS patients with IVIG.
Check out this link that explains what IVIG is and how it can help certain PANDAS cases.
A compelling story of a mother’s fight to help her son. Sammy had an immediate onset of OCD that became severe, and after many different doctor visits, they found out that he had PANDAS, and is now cured of OCD.
Here is Beth Alison Maloney’s website: Saving Sammy