amyjoy

Hello ah yes lunchbox challenges. my son is 14 and also has celiac so we have had to get creative, since larabars are ok but you know, variety is a healthy thing and also, having stuff you like and isn't always sweet can also be a good thing. do you have a thermos? this can be a ticket to lots of options. rice pasta or rice mac and cheese, soups with crackers and maybe a cheese stick if you can do dairy, or even some rice potstickers can go in there, or baked potatoes (in pieces:)), or some taquitos or enchiladas or tamales. Or maybe, you could use some rice and bean chips or corn chips plus guacamole or a bean dip or one of those 5 layer dips? You can also put tuna in a thermos it will stay fresh and you can use some chips to dip, yum if you like tuna. Also, someone did mention the Udi's sandwich bread, bless them, they make wonderful lunch box sandwiches. Yogurt? Little individual packs of fruit like applesauce or peaches go well in lunchbox. i hope this helps!! being hungry and feeling stuck at school is no fun!! And by the way, you can also get one of those little freezer pack things and stick that in your lunch box and it will keep things cold for you if you ever want that. amy

Hello the exact same thing happens to my son, allergies make the tics worse. i read somewhere that high histamine levels can be a neuro trigger. I would be happy to share some things we have found work for him but of course i have no idea if it will work for your dd. quercitin can work if you give it every day consistently because it has to build up in the system and this can take as much as a couple of weeks. we have used a product called D-Hist Jr (it has quercitin as well as other supports like nettles etc), and also, while i don't necessarily like using "drugs", when all else fails, benedryl helps the tics during these times tremendously and believe it or not, we have found that ibuprofen really can take the edge off the tics, i think because with PANDAS kids the tics are inflammatory. One more thing we have found that can help the tics at night (when they seem to be the worst) is a combination of herbs either in a tincture called valerian complex b a.vogel (valerian and hops) or something called myocalm by metagenics (valerian and passaflora and cal and mag). one last thing that helps alot and we always use during a flare is magnesium citrate powder in a product called natural calm by a company called peter gillham. there is a natural calm kids as well. magnesium has strong muscle relaxing properties, and calming for the nervous system. again i'm just sharing what works for my son, but i hope it gives you some ideas. good luck and many blessings amy

I SO hear your frustration. I have a 14 year old son who has had PANDAS for 5 years, and now that we know what it is and know what to do about it, we can't yet afford the IVIG treatment. The other day i felt so desperate and frustrated that it occurred to me i finally understood those movies about some poor person thinking about jumping off a bridge or whatever so that their family could have the life insurance, you know, like that airplane movie?? It is so wrong, and its wrong that we parents have to be put in this position of parenting and diagnosing and fighting for treatment for our children. It is true that the only way to find treatment for your child is to travel to one of the PANDAS MD's. BUT if you live on the west coast we will treat your kids in our office www.hillparkmedicalcenter.com. I don't mean to advertise and i guess this is advertising, BUT we need to make care accessible for our children so that we don't all end up thinking about jumping off a bridge from sheer frustration and, like you said, anger at a system that is so limited and so closed to new thought. I pray the information from the recent NIMH meeting about PANDAS is published SOON and finds its way through our stymied and dense medical system. Best of luck with your child.

Hello! I am the mom of a 14 year old boy with PANDAS, which he has had for about 5 years. He was just diagnosed a few months ago by a progressive MD in Northern CA, in addition to a brief email consult with both Dr. K and Dr. Cunningham. IVIG is his definite treatment of choice. I am also fortunate to work in a large integrative medical practice where we now have a dedicated IV treatment center to treat our PANDAS children on the west coast to avoid if possible the extra costs and strain of traveling eastward for IVIG treatments to those of us who simply do not have those resources available. Our first wonderful child, who came in last week for treatment, had the blessing of (doing very well, and) having a family with resources able to pay out of pocket for IVIG which as you all know is ridiculously expensive. So even though our office is working very closely with the suppliers of IVIG to pass on reduced rates to our patients and families, many of us still cannot pay out of pocket, including me. I have already spent my entire life savings on the medical care of my child these past 5+ years. Many of you are in the same position. Thus, we are waiting for insurance and pushing and praying for coverage so that he can be treated. What would really help, both for my son as well as anyone who brings their child to our office - or to any office - for IVIG, would be any information you would be willing to share regarding billing codes and insurance, whether successful or unsuccessful. Even if you would be willing to fax me the info (removing personal identifiers) so we can do the best we can to dialogue and code with insurance. Like my son, many are waiting in the wings for IVIG, having run through all resources before finally landing PANDAS as a diagnosis. Pooling our information would really help, and i would be willing to sort through and make it all available to everyone. Thank you and i wish you all every success in treating your child. amy

HI Nancy I have a 14 1/2 yr old son with a similar story of 5 year duration, but in addition to OCD/intrusive thoughts and anxiety, he has motor tics. We have done a consult with Dr. K and another MD in Petaluma CA who originally diagnosed him with PANDAS a few months ago. The recommendation is certainly IVIG, although how many treatments our kids need is uncertain both due to being older and i believe duration of symptoms. I am also an NP and fortunate to work in a progressive medical practice where we have a dedicated IV suite. I have spent all summer putting together a program to treat our children with IVIG according to Dr. K's protocols, and had the privilege of treating our first child, a 14-year old patient of Dr. K's, last week (with Dr. K's blessing). She did so well, practically no side effects at all, and this dear child has had PANDAS for nearly 9 years, practically all of her life. We expect she will need another treatment. For families closer to the west coast, we are hoping to have an addition place for them to come for IVIG treatments that would not require so much travel. Anyway I hope this feels encouraging to you. Also, check out the pandasnetwork.org website for a ton of great information about PANDAS as well as IVIG. I wish you and your child every success and hope on your journey. Amy