Our friends Susan and her daughter Alex made tacos a lot when Alex was growing up. It was before Taco Tuesday was a thing. It was something they just did when the spirit moved them.
Sadly, Susan can no longer make them with Alex, because Alex died two years ago at the age of 26. Her death was due to complications from PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).
Alex was very dear to us, too; an honorary daughter, if you will. So this week, aside from an awesome Shredded Beef and Melted Onion Taco recipe, you are getting a public service announcement, because someone you know may be suffering from PANDAS and it may be going undetected, as was the case with Alex. If you have or know a child, teen, or young adult who—after a bout of strep throat—is suddenly exhibiting symptoms of OCD, ADHD, motor or verbal tics, separation anxiety, mood changes, sleep disturbances, skin disorders or even a change in handwriting, you should ask the question: could this be PANDAS? Make an appointment with your physician, and ask. Wouldn’t it be better to be wrong than risk not having asked?
Although it has “pediatric” in its name, it does not strike solely young children. In young adults it is too easily misdiagnosed as a series of unrelated traits. Alex was 26 and had to do a lot of research and self diagnose before she could get the serious attention of any physician. Young adults are the invisible sufferers and they may need your help to identify the problem. Sure, it could be stress from college, grad school, or entering the workforce for the first time. But what if it isn’t? As the adults in the room, we all need to be vigilant to changes in those we love. Beyond that, we need to make sure we advocate for them, because they may not realize they need the help.
October 9 is PANDAS Awareness Day. For more information, please visit the PANDAS Network to find out what you need to do if someone you love may be suffering. Someone I know and loved very much had her brilliant life cut short by PANDAS, and no one else should have to go through this.
These tacos are for Alex—and her loving parents, Susan and a Towny—who are working hard to fund research and educate both the public and medical field about PANDAS. They created the À Table! Project, designed to help people learn about PANDAS while they gather at the table, something Susan, Towny, and Alex did frequently. (À Table means “come to the table.”) They worked with Château Barbebelle, in Rognes, Provence, France, to release a special edition of their red wine, which we now lovingly call “Alex’s Wine.” The label has a painting of Alex walking down a village street in Provence, by renowned artist Gérard Isirdi. The booklet that comes with the bottle has a lot of good information for you, or for you to share.
Now to the tacos. As simple as they are, we were lured back to the kitchen for seconds. Once again, proof you don’t need a lot of special ingredients to make an amazing dish. I used a slow cooker to cook the beef and onions, but it could be done in the oven on low heat, as well. Alex’s Wine paired perfectly with these. To read more about the wine, head over to the Provence WineZine. The Shredded Beef and Melted Onion Taco recipe—which includes Susan’s mother’s flour tortilla recipe—follows.
~ David
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Fran @ G'day Souffle'
October 3, 2020 at 7:15 amWhat a loving tribute to Alex! It is such a tragedy for parents to lose a child. I see that the photo of Alex in Arizona (?) has the same pose as the one on the wine label. It’s great that Alex’s memory will carry on through tacos and wine- next time I see the words “Taco Tuesday” (which is basically every Tuesday now), I’ll think of Alex.
Cocoa & Lavender
October 4, 2020 at 12:57 pmThanks for your kind words, Fran — and good eye! I took the photo of Alex in my neighborhood a week or so before she died, and Gérard used it for his painting. I’m quite touched.
Christina Conte
October 3, 2020 at 7:38 amThank you for sharing the infomation on this horrible condition/disease, David. As the mother of a 23 and 26 year old, this is so important to know about the symptoms, just in case. I’m so sorry for Alex, her parents, family and friends as it just is inconceivable that someone so vibrant and full of life be taken when they are just beginning their journey through adulthood. 🙁
The tacos look incredible, especially with the homemade tortilla (something I’ve never made). Thank you for sharing these special recipes. Hugs.
Cocoa & Lavender
October 4, 2020 at 12:59 pmChristina — I hope you never need an ounce of the info in this post, but I am always happier knowing you have it just in case.
I am glad you like the taco recipe. I hope you try the tortillas someday!
Gerlinde
October 3, 2020 at 8:19 amA beautiful tribute to Alex and thank you for bringing awareness to this horrible condition. Your tacos look so good . Years ago I used to make tortillas, I should try it again.
Cocoa & Lavender
October 4, 2020 at 1:00 pmThanks Gerlinde. I’m glad I was able to share this story with you and everyone.
John / Kitchen Riffs
October 3, 2020 at 8:24 amSo sad about Alex — and what a wonderful tribute. Moving, really. Anyway, we love tacos and almost never have them on Tuesday! Much more a weekend thing for us. I make corn tortillas often, rarely make flour tortillas. Really should do that more often. Very nice recipe. Heck, such a nice post! Thanks.
Cocoa & Lavender
October 4, 2020 at 1:01 pmYou are so kind, John. I appreciate your words so much.
And, yes, you should making flour tortillas more often!
Patti Thornton
October 3, 2020 at 9:21 amOh David! What a poignant tribute to our beloved Alex. She is a light that shines brightly especialky in the friends who loved her. Though my chest tightened like my heart is still breaking and tears flowed down my cheeks I read every single word you wrote as coming to the table with the Manfulls. A given was the delectable food, and perfectly paired wine. The variable was always the conversations and where that may lead as the sky was the limit. I remember the fun of talking it out even on subjects we did not all agree on there could never be harm or foul because of the love around the table but mostly I the laughter especially Alex’s laughter. She is gifted with amazing talents- intelligence, creativity, character, and incredible humor who lived an always busy life across the continent from us which keeps her more present to me I believe. Thank you David. You too are a very special soul to encounter in this life. You both certainly were loved by Alex. It is through Susan and Alex’s stories that I feel as though I know more personally than through our brief intersections over the years. Be well my friends.
Cocoa & Lavender
October 4, 2020 at 1:03 pmPatti – it is amazing how well I know you with only having seen you the one visit. But Alex (and Susan and Towny) have a way of bringing people together in the best of ways. I hope we get to see you and Bree again soon.
Patti Thornton
October 14, 2020 at 8:27 amIt is hard to believe as often as we had crossed paths over the many years we have “known” each other and been merely hours apart during visits, that only once have we actually met. And we also hope to see you and Mark meet again. Soon!
sippitysup
October 3, 2020 at 2:16 pmI’m sorry for your loss and commend the admirable way your honor her memory. GREG
Cocoa & Lavender
October 4, 2020 at 1:04 pmThanks, Greg. Food is a powerful way of keeping our memories alive.
Suzo
October 5, 2020 at 2:10 pmthat is so true…
Rahul
October 3, 2020 at 3:30 pmBeautiful tribute to Alex. Thanks David for providing information on PANDAS. There are lot of diseases that we do not know or talk about. Even doctors take time to recognize the symptoms. By the time symptoms are found its late. 🙁 The wine bottle looks very pretty
Cocoa & Lavender
October 4, 2020 at 1:05 pmI really appreciate your kind words, Rahul. I always feel that the more we know, the more we can help.
Eha Carr
October 3, 2020 at 6:49 pmAm sitting here somewhat stunned. With my medical background I should have known about the condition . . . I did not. Taking into account how many of Alex’ physicians must have initially viewed her symptoms at her age I can imagine what extra difficulties she had to survive. To end up walking into an impenetrable cruel mountain the way only a picture can tell . . . My thoughts are with her family. My thanks are with you for making us aware . . .
soft smi* I probably will not making my own tacos . . . our many types of flatbread are pretty good substitutes, but I’ll definitely copy a certain filling . . .
Cocoa & Lavender
October 4, 2020 at 1:07 pmEha – it was unbelievably prescient, that photo of her walking to the mountain. It was but a week or so before she died. She was here with her mom and dad, and we had a wonderful time together. It was a true gift from the universe.
Any flatbread will work just fine! 😊
Ron
October 4, 2020 at 6:09 amDavid, I could sense your love for Alex and sadness with her passing in reading your words. I could also hear your passion for speading the word about PANDAS as well. And, you’ve done a wonderful job educating those of us who knew not of this awful illness. I have grandkids who are in the age group that PANDAS could attack. I’ve forwarded the À Table! Project link to my daughter so that she’s also aware of this condition.
I think the tacos you’ve made in memory of Alex are a wonderful choice. The love that went into making the special edition wine is also lovely. Take care and thanks for making me aware of this…
Cocoa & Lavender
October 4, 2020 at 1:08 pmSusan has been truly touched by comments such as yours. And she is so glad this information is going to a new audience; I was so happy to help. I hope you and your family never need this information, Ron, but I am glad you have it just in case.
Peg Peterson
October 4, 2020 at 7:23 amThank you so much for this wonderful tribute post. I had never heard of PANDAS before but I have now and it’s something I won’t forget. So sorry for this tragic loss!
These tacos sound divine – can’t wait to try them.
Cocoa & Lavender
October 4, 2020 at 1:09 pmThanks, Peg. I wish we didn’t need to spread this information but the more we do the more we can help young people get diagnosed and treated.
Mary Norcross
October 4, 2020 at 9:11 amDavid, what a poignant tribute to a beautiful life, tragically ending too soon. I knew Alex briefly when I was on the Manfull’s wine tours based in Lourmarin. She was a beautiful, bright engaging young woman with an original turn of mind.
I will gladly forget my diet and make your sensational Taco dish and with it drink the À Table! wine created in memory of Alex .
Cocoa & Lavender
October 4, 2020 at 1:11 pmI am so glad you got to meet and spend some time with Alex, Mary. You know how special she is.
This is a good time to ignore your diet!
Linda Briolat
October 4, 2020 at 9:48 amI sense from your writing how fond you are of Alex. She left an indelible impression on anyone she met.
As her third grade teacher, I noticed what interesting lunches she brought to school. Sometimes even tacos! Thank you for the recipe and writing about Alex. If Susan and Towny’s work around PANDAS helps anyone who is suffering they will have accomplished a great deal. Thank you and perhaps our paths will cross when you visit Portsmouth.
Cocoa & Lavender
October 4, 2020 at 1:12 pmThanks, Linda. It is so nice to hear your recollections of Alex as a young girl. She was always so special. I hope we do get to see one another next time I am in Portsmouth.
Karen (Back Road Journal)
October 4, 2020 at 10:59 amWhat a lovely tribute to Alex, I remember her passing as it was about the same time we lost our son. Knowing more about PANDAS is important for anyone with children and young adults. Your tacos sound terrific and I was interested in the way you made the chive cilantro oil in your spice grinder. I’ve never used it with any liquid in it…I learn something new almost every time I stop by here.
Cocoa & Lavender
October 4, 2020 at 1:14 pmKaren — You know more than anyone how hard it is to lose a child. I hope you are doing as well as can be expected.
I use my spice grinder for all variety of things, especially when I only need a couple of spoonfuls.
Jane Sanders
October 4, 2020 at 11:13 amDavid,
Even if I never make the tacos or the tortillas or drink the wine (which I cannot see me NOT doing), I will forever remember your beautiful and loving story about Alex, her parents and PANDAS. You have “done a blessing”, David, and thank you for sharing Alex’s story and the wonderful photos as well. I think everyone one of us who has a taco will have this tribute in our minds.
Jane
Cocoa & Lavender
October 4, 2020 at 1:15 pmThanks, dear Jane. And thanks especially for keeping Alex’s memory alive.
Carolyne
October 4, 2020 at 12:12 pmDavid, what a tribute and fabulous wine pairing. I never had the pleasure of meeting Alex, but I am certain she would love the combination. She would also appreciate the effort that her parents, yourself and many others are making to raise awareness for PANDAS.
Cocoa & Lavender
October 4, 2020 at 1:16 pmOh, Carolyne – I thought you had gotten to know Alex. I’m so sorry that never happened. Thanks for your kind words. xo
Jeff the Chef
October 5, 2020 at 7:30 amI’m so sorry to hear of this tragedy, David. Thanks for taking this opportunity to call attention to PANDAS. It’s so important to be informed.
David Scott Allen
October 7, 2020 at 7:00 amThanks, Jeff. I appreciate your kind words.
Coco in the Kitchen
October 5, 2020 at 1:30 pmWhat a beautiful life cut short. David, you’re such a sweet soul.
I’m going to make tacos today (Taco Tuesday is now Taco ANYday!).
Your tortillas look divine and I will get my hands on a bottle of that wine.
What a lovely tribute. xo
David Scott Allen
October 7, 2020 at 7:02 amThanks, dear Colette! We all miss Alex and want to do what we can to help others. (If you want the wine, check out the post on ProvenceWineZine.com – all the details are there!)
Raymund
October 6, 2020 at 12:07 pmWhat a nice tribute! Sad to hear that loss so someone dear to you. Also thanks for informing us about PANDAS, never knew that disease until now. And yes I am for tacos any day!
David Scott Allen
October 7, 2020 at 7:03 amRaymund, it is good for all parents to know about this. Thanks for your kindness!
sherry
October 6, 2020 at 9:48 pmhow heartbreaking! to die so young is so unfair. my mum died at 46 and i thought that was so unjust, but 26…
David Scott Allen
October 7, 2020 at 7:04 amMy mother left us when she was my age — 62 — now I know that was way too young. But 26? So inconceivable.
2pots2cook
October 7, 2020 at 5:50 amUnderstand completely. I lost my sister five years ago and my father thirty days ago. It seems like a part of my brain just doesn’t work since then. It may sound funny, but that’s exactly how it is. Nothing could be done to bring them back but there are so many things we all can do to help the ones suffering from the diseases our loved ones passed away from. Dear David, I appreciate this post beyond words. You are truly great man with big heart. Thank you so much.
David Scott Allen
October 7, 2020 at 7:05 amOh, I am so very sorry Davorka. It is so very understandable that you are yet reeling with grief. Please take care of yourself and get as many hugs from your son as you can.
Valentina
October 9, 2020 at 11:38 amDavorka, I’m so very sorry about your sister and the very recent loss of your father. It’s so hard. Sending you a mountain of love and hugs. ~Valentina
mimi rippee
October 7, 2020 at 8:11 amOh my goodness. I’ve never heard of this horrific disease. And to lose a child – a horrible experience. I actually have a few friends who’ve lost their adult children and I can’t imagine anything worse. As one friend said to me, “It’s one club you certainly don’t want to join.” Thank you for this post.
Cocoa & Lavender
October 8, 2020 at 12:42 pmIt is just awful, Mimi – so many young people are affected and it is still such a mystery to many physicians. Thanks for your kind words and thoughts.
Cathy
October 7, 2020 at 8:13 amWords fail me, but they haven’t you. What a beautifully written homage to Alex. Thank you for helping other understand PANDAS.
These tacos look delicious and those tortillas are pure perfection. I love that you used lard. I can’t wait to try these.
Cocoa & Lavender
October 8, 2020 at 12:43 pmYou are so kind, Cathy – thank you so much. I am so glad ot help spread the word.
I could not imagine making this from anything but lard. Nothing like it as a substitute!
Priya
October 7, 2020 at 5:09 pmSorry to hear about Alex. This is a wonderful tribute David.
Cocoa & Lavender
October 8, 2020 at 12:43 pmThank you for your kind words, Priya.
Valentina
October 9, 2020 at 11:42 amWhat a tragic loss, David. I’m so sorry for her family, and all who knew her. What a beautiful young woman. I appreciate the information — I haven’t heard of PANDAS, and as a mom of two teenagers, I’m glad I have now. Thank you.
Of course the tacos sound delicious, and it’s always lovely to honor memories in this way. Sending love and hugs. ~Valentina
David Scott Allen
October 17, 2020 at 9:06 amValentina, I am so glad you now know of PANDAS, and I truly hope you and your boys never have to deal with it. And I knew you would love the tacos!
Aarthi | Prepbowls
October 9, 2020 at 7:51 pmLovely tribute post, David! thank you for the information on the disease, I have no clue about this.
I’m so glad to connect with you, love your blog with soo many delicious recipe , like the simplified steps , makes it easier to follow. We love tacos , and this recipe looks so good , love how you have used slow cooker to cook the meat , and absolutely fabulous tortillas , thank you for sharing this!
David Scott Allen
October 17, 2020 at 9:07 amThanks so much for finding me, Aarthi! I’m so glad to meet you and love all you are doing in your blog, too. Stay safe and well!
Marcelle
October 17, 2020 at 2:14 pmThis is such a lovely post in honor of your friend, Alex. I have not heard much about PANDAS David and I’m so sad to hear she passed from complications from this rare illness. But, I think it’s pretty amazing that a winery in France produced a special edition wine in her honor and with an interpretation of your photo of her as the bottle cover. Such an amazing tribute and a wonderful way to raise awareness about this condition. Your beef tacos look absolutely delicious and homemade flour tortillas are always a good idea! Sending lots of good thoughts and love y’all’s way!! xo
Cocoa & Lavender
October 23, 2020 at 9:06 amThanks so much, Marcelle. Alex was so incredibly special — I wish everyone could know her. I’m glad you have learned about PANDAS, too, as the mother of two youngsters. I hope you never need the knowledge.
Inger @ Art of Natural Living
October 20, 2020 at 1:15 pmHow terribly sad David. What a beautiful girl–and so young. My brother got autoimmune kidney disease following strep. I guess it’s a nastier disease than we think…
Cocoa & Lavender
October 23, 2020 at 9:07 amIt is amazing how insidious strep is to our bodies… I’m so sorry for your brother, Inger.
Susan Manfull
October 28, 2020 at 7:48 pmI would like to thank each and everyone for your heartfelt comments about the loss of our daughter. David, I am immensely grateful for your efforts to increase the world’s awareness of PANDAS and PANS, both types of encephalitis that affect primarily the basal ganglia.
As you (and Inger) point out, strep is indeed insidious and can affect the kidneys as well as the heart, joints, and skin and, needless to add, the brain.
By the way, we made the tortillas — fabulous — and then put them together per your recipe and the meal was fantastic. Alex would have loved them! She loved the wine! (The wine is wonderful and will be available next week in the Boston area and can be shipped.)
Cocoa & Lavender
October 31, 2020 at 4:17 pmWe will always think of Alex when we make tortillas now… like this afternoon!
Susan, I was so glad to help in any way!
Time for Tropico! – Cocoa & Lavender
February 20, 2021 at 7:00 am[…] If you have the time, make some fresh flour tortillas, too. You can find that recipe on my Taco Tuesday, Taco Anyday post from last […]
Provence WineZine: Alex’s Wine – The Alex Manfull Fund
September 7, 2021 at 4:00 am[…] As I hinted, I paired this complex and lovely wine with tacos. Because Alex loved tacos and this was one of Alex’s favorite summer reds. And because I had Susan’s mother’s recipe for homemade flour tortillas. And because Susan, Towny and Alex often prepared tacos together for their family meals. My tacos are shredded beef and melted onions (not caramelized – really melted!) with avocado, tomato, cotija (cheese), and cilantro, all drizzled with a chive oil. For the recipes, please visit Cocoa & Lavender. […]
Provence WineZine: Alex's Wine -
November 25, 2022 at 11:28 am[…] As I hinted, I paired this complex and lovely wine with tacos. Because Alex loved tacos and this was one of Alex’s favorite summer reds. And because I had Susan’s mother’s recipe for homemade flour tortillas. And because Susan, Towny and Alex often prepared tacos together for their family meals. My tacos are shredded beef and melted onions (not caramelized – really melted!) with avocado, tomato, cotija (cheese), and cilantro, all drizzled with a chive oil. For the recipes, please visit Cocoa & Lavender. […]