My daughter’s update…

It’s been a while (about a month to be exact) and we are nearly back at square one. After going into the hospital soon after my last post for emergency surgery, we learned that my daughter does not have a celiac artery! It’s a rare anatomical variation—0.1% to 2.6% to be exact—and she is one of that very small percentage. While this does not affect her health at all, for this instance it means that her celiac artery is not compressed since it does not exist. While this was very confusing to me, her surgeon assured me that it was not a mistake and that he followed her 3 other arteries that branch off of the abdominal aorta to their exact location. He confirmed that they do not branch out from the celiac artery, instead they branch out directly from her abdominal aorta.

Almost Back at Square One

So while we are not at square one, we are nearly back there. We have eliminated all gastric issues. We know she does not have a celiac artery. But that is all. Her surgeon called a neurologist right from her room at the hospital, and she got an appointment with one soon after. So far my daughter has undergone an MRI of her brain, which has come back normal, thankfully. She had to do a 24 hour urine analysis for porphyria, which unfortunately the lab has lost and she will have to redo. Just my luck, right? She also has an EEG scheduled for the middle of February (!!!), but she has never had any sign of a seizure in the past, so I doubt this will be conclusive of anything. I’m so lost, confused, upset, aggravated, and whatever adjective comes to mind that has a negative connotation. The only thing that gets me through these days is knowing that absolutely nothing, no test, has come up positive for disease/illness and she is still considered a healthy teen. It’s just heartbreaking to see her in pain all the time…

I’ve been feeling so helpless…

So I’ve been MIA for a while. I was all gung go about getting this site started, updating regularly, and sharing my life and mom experiences with everyone. This is a new journey for me and while I’ve read blogging is a full-time job…I was like ‘I can handle it’—and I was! But then the until recently unnamed illness that’s been ailing my teen for nearly 2 years now decided to wreck havoc on our lives and decide to remind me that having kids should be a full-time job in itself. Let me give you a little background…

How It Started

At the end of February 2024 (2/28 to be exact), my older daughter came home from school holding her stomach, crying, and telling me that her stomach hurt so bad. I’m a teacher, so I know all the germs that she’s exposed to daily. I also do not overreact for things like this. I did my mom thing…checked for fever (no fever), looked to see if her stomach looked swollen (was not), and gave her some otc medication. At this point I had 2 things on my mind: stomach bug or beginning of her first period since she was a few months short of her 12th birthday at the time. She ended up staying home from school for the rest of the week because of the pain, but she never actually developed a bug with nausea, vomiting, or diarrhea. I thought we lucked out OR it was beginning cramps. Either way, I was relieved that she wasn’t actually sick and that we could enjoy the unusually warm weather for the beginning of March. That Sunday I met up with friends and we brought out kids to the park. That marked the first day of nonstop doctor visits…

She barely ended up playing that day. She sat with me and my friends nearly the entire time we were at the park in excruciating pain. Her sister and my friends’ boys played, but she leaned on me with tears in her eyes. I brought her to urgent care straight from the park, which then I was told to bring her to the ER due to the fact that appendicitis couldn’t be ruled out. We were in the ER for hours as doctors ordered test after test. Bloodwork, urine, ultrasound, CT…everything came back normal, but yet there she was crying, laying in a fetal position because her pain was so bad. The one oddity the radiologist did see is that one of her lymph nodes was swollen in her stomach. She was diagnosed with mesenteric adenitis and sent home. I was relieved that after hours of testing, there was a diagnosis. The doctor did say that it could continue to cause pain until it reduced in size, so I shouldn’t be alarmed if she had pain for a few more days. We went home with a medical excuse for 2 more days and instructions to follow up with her pediatrician, which we did. However the pain increased in discomfort and we ended up back in the emergency room later that week with a diagnosis this time of constipation. This was the beginning of nearly 2 years of chronic pain and discomfort, many days off of school for her and work for me, doctor visits and tests, and fear for her to do almost anything that wouldn’t allow for her to stop everything if she had a “flare up” where the pain would increase to a level that would basically deem her bedridden for hours.

Pediatric Gastroenterology, Nutritionist, and Physical Therapy

My daughter saw a pediatric gastro for many months. She was great. She was personable, tested her stool, and did an endoscopy. Everything came back normal. She often questioned anxiety, stress, and my daughter’s mental health because understandably, preteens/teens have a lot on their mind that may not be important to adults, but for kids their age is major. I started to question it too at points, but my daughter stressed that she was ok and that any school or friend related stresses did not trigger any pain. As much as I liked her pediatric gastro, I know this was a major thought in her mind and seriously wondered if the pain was really there. However, she did continue to see my daughter every 3 months until recently.

Along the way we were also referred to a nutritionist (who was amazing!) and we tried different dietary changes, none of which helped the pain. Sidenote: my daughter looooves spicy food so that was the first thing she was told to eliminate. However, as nonreligious that we are, we do honor Lent and for 2 years in a row she has given up spicy food for the entire 6 weeks and it has never, ever eased her stomach pain. So when that was suggested, we immediately knew that was not the cause. We did try to eliminate acid, chocolate, grains, etc but nothing helped.

Last spring (over a year in) I realized that my daughter complains of the most intense pain right after exerting herself either due to sports/exercise, walking uphill quickly, and using the stairs at school. I Googled. I searched medical journals, discussion boards, social media forums. What I did find was MALS or Median Arcuate Ligament Syndrome, an illness that occurs when the median arcuate ligament slides down over the celiac artery and blocks blood flow and affects nerves in the abdominal area. It’s not common at all, but my daughter had experienced most of the symptoms at some point. Unfortunately, her gastro did not agree because, while she had lost a lot of weight initially, she had gained most of it back and was now considered to be at a healthy weight for her age. I felt defeated.

My gastro’s last recommendation of the summer was for my daughter to try physical therapy. Luckily, I had a great place in mind and they took my daughter right away. Unfortunately, after about 6 weeks of attending PT 2x per week, her physical therapist determined that PT was not helping my daughter and concluded her sessions. I signed her up for a few sessions with their chiropractor as well (no cracking of the back or neck, just breathing exercises and more stretches), but my daughter was not interested in it after the first couple sessions. It too was not helping.

Missing Out on the Fun Stuff

While on vacation this summer, my daughter was in great pain. Again, since we were at Disney World, there was a lot of walking and hills. We’d have to stop and rest on our way to a show or ride. She’d sit out on certain rides because she could not bear to stand and wait in line. Then it happened again when we were in NYC. She couldn’t walk around anymore due to pain. Luckily, we live nearby so we cut short our day and went home. Another day she couldn’t walk around the mall because her stomach hurt so badly (and trust me, she is a shopper). Then the final break in the straw was when she decided to quit the volleyball team because she couldn’t rush from school to practice halfway across town and still be able play. This was heartbreaking, both for her and me. I mentioned this at her regular checkup with her gastro and she started testing for blood vessel/artery issues, including MALS.

Testing

We started the next round of imaging tests in October. The test she was prescribed to undergo is apparently very rare, so of course the first test was wrong. While it ruled out an aneurysm, it was not diagnositic for anything else. We moved onto another uncommon ultrasound, an abdominal duplex ultrasound, which would measure the velocities of blood flow through her arteries. This time she was required to fast for 6 hours, and move around at points during the scan. The ultrasound was like a teaching experience I guess. Different techs were in and out to watch. The doctor of radiology made an appearance. Supervisors came in to supervise. Once the first set of images and measurements was taken, she had to eat a meal and 30 minutes later have another ultrasound for post-prandial measurements. In its entirety, this test took over 2 hours! The results came back abnormal. The radiology report stated “suspected but not confirmed MALS” and she was referred to a general pediatric surgeon since this was not a gastro issue anymore. She also had an enlarged spleen or splenomegaly so we were asked to see a hematologist in addition to the surgeon (everything came out fine with her spleen, thankfully, but we did find she has Factor II blood clotting disorder, which will be useful to know in the future).

Not to be unexpected (I mean why would anything be easy LoL), her surgeon was not convinced she had MALS. He sent her for and MRI of her abdomen and and MRA, which too is not so common. Both of these test came up basically normal. There were minor findings that were off, but none of which should be causing the sometimes excruciating pain that she is in. Convinced the initial abdominal duplex ultrasound was done incorrectly (her surgeon worked out of a different hospital than her gastro), her surgeon sent her for another. This time, the supervisor tech at our current hospital did the scan. The results came out nearly identical. The supervisor was extremely honest with us and told us that after speaking with her surgeon and the doctor of radiology, she was sure the velocities in my daughter’s arteries would be normal and MALS could be ruled out. What she saw was the exact opposite. The results were indicative of celiac artery disease, also known as MALS (or celiac artery compression syndrome or celiac axis compression syndrome, or Dunbar syndrome). The tech even found the “hook” that is 100% indicative of the syndrome that basically blocks blood flow through the celiac artery. WE FINALLY HAVE AN ANSWER!

Game Plan

So now we are waiting to speak to the surgeon after he schedules my daughter’s surgery. He needs to coordinate with a few different surgeons, so it might not be for a little while (hopefully only a week or two wait). In the meantime, I hope that just knowing we have an answer gets my daughter through the days and nights. She’s still in a lot of pain, but now there is a light at the end of the tunnel. I’ll keep everyone updated once I get word.