January 28th--When the hospital pediatrician came to dismiss our daughter from the hospital, she mentioned that the red mark on her forehead as well as the lack of pigment in her left cheek could very likely be a hemangioma.
February 3rd--During a routine follow-up with our family pediatrician, it was recommended that our daughter visit a pediatric dermatologist in the area to have her birthmark formally evaluated.
February 8th--Our daughter had a cranial ultrasound to evaluate some large lateral ventricles that were seen originally in two different prenatal ultrasounds. Through this test the ventricles were determined to have uncertain significance.
February 9th--Our daughter's first dermatologist appointment. It was determined that her birthmark was likely a port-wine stain which is what big brother has on his leg. The dermatologist was concerned about some swelling on her eye which seemed to be related to the birthmark and recommended that we visit a pediatric ophthalmologist.
February 10th--Our daughter had an appointment with a pediatric ophthalmologist who instructed us to monitor the swelling. She was convinced that the birthmark was a hemangioma rather than a port wine stain.
February 12th--Our daughter had an appointment with a second dermatologist who confirmed that she has multiple segmental hemangiomas on the left side of her face/head. It was explained that these hemangiomas typically grow rapidly for the first 6-12 months of life and then regress almost completely during the next 5-7 years.
February 16th--Our daughter had an MRI/MRA to confirm the diagnosis of segmental hemangioma. She was so small that it was impossible to get a vein for the contrast portion of the MRI, so we were asked to come back two days later.
February 18th--Our daughter had the contrast (dye) portion of the MRI/MRA. We were told that it would take about 48 hours to get the results of these two tests.
February 19th--By 10:00am, I had a phone call from our pediatrician who had serious concerns regarding our daughter's MRI/MRA tests. The tests showed multiple hemangiomas throughout her body (including inside her chest cavity and on the back of her neck.) The hemangioma on her eye and cheek seemed to be growing rapidly, so our pediatrician was very aggressive to have her begin with a steroid treatment immediately. We also received a call from our dermatologist who was at a conference in Hawaii at the time. (Note to self: when a doctor calls you from Hawaii, it's not to tell you that everything looks good!) He, too, was very concerned and agreed that we needed to be very aggressive. He collaborated with our ophthamologist and pediatrician to prescribe our daughter with her steroid immediately. Goal #1 is to reduce the swelling in the eye so that it will open again.
February 22nd--Our daughter's fist cardiologist appointment. Through the many tests that were administered, it was determined that her heart health was good.
February 23rd--Our daughter was given a prescription for Propranalol. This blood pressure medication has been shown in recent studies to make a drastic difference in the size of hemangiomas. The doctors have great hope that this drug will reduce the swelling in the eye at a rapid pace so that she will be able to open her eye. We were to begin with a very low dose and increase the medication slowly so that in 8-10 days she would be receiving the recommended dosage.
February 24th--Our daughter's fist neurologist appointment. Both mom and dad were able to go and hear the neurologist tell us more about the findings in the MRI/MRA report in language that we could easily understand. He mentioned a concern with her right carotid artery and asked to be able to consult with a neurosurgeon regarding our next step.
March 2nd--A routine visit to the dermatologist to monitor our daughter's blood pressure and blood sugar raised red flags. Her blood pressure was very low. We eventually got a decent reading, an were allowed to maintain our current level on the Propranalol, but were not allowed to increase the dosage. This was discouraging because we were only one day away from the full dosage and had great hopes of seeing drastic results over the next week.
March 4th--The neurologist and neurosurgeon recommend that our daughter follow-up her MRI/MRA results with a CT angiogram to further evaluate her carotid artery.
March 5th--Our daughter went to Austin Radiological to have the CT angiogram test administered. While there, her blood pressure was still low, so we were instructed to stop taking the Propranalol through the weekend so that we could try and increase her blood pressure as the medication was leaving her system.
March 8th--Our daughter went back to the dermatologist to her her blood pressure evaluated. Though it was still low, we were allowed to begin on the Propranalol again at a very low dose. She will be monitored very closely. We were encouraged by this news because the medication has shown such great results in other children. While at the dermatologist, our daughter was officially given the diagnosis of PHACE Syndrome. Later that night the neurologist called with information regarding her CT angiogram. It was the best news we could have hoped to get. Though our daughter has a couple of loopy-loops in her carotid artery where typical artery has a "C" shaped curve, her blood flow looks good. There are no further tests or procedures recommended at this point. We will follow-up in 6-12 months.
March 11th--Our daughter visited the ophthalmologist today and it was determined that she would benefit from steroid injections directly into her eyelid and cheek to reduce the swelling of the hemangeomas. She also had an appointment with her pediatrician who discussed with us the reality that our daughter will likely continue to have frequent doctor's appointments, procedures and testing in the weeks to come.
March 12th--Our daughter had multiple steroid injections today at Dell Children's Hospital: three injections to the eyelid, one injection into her cheek and one injection into the back of her neck. It was a hard day, but we have great hope that this high dosage of steroid to a small area will have drastic impact to reduce the swelling in these areas. We are decreasing the oral steroid dosage by 1/3 and are increasing the Propranalol.
March 17th--Our daughter had a follow-up with the dermatologist regarding the steroid injections. The news was all good...good blood pressure, reduced swelling and an open eye. He even called the ophthalmologist while I was in the room so that I could hear her sharing the good news with her. We are reducing the steroid dosage by half and continuing on our higher dosage of Propranalol. We don't have to go back for another dermatologist appointment for a whole month!!!
March 23rd--Our daughter had a follow-up with the ophthalmologist today. The doctor was pleased with how well she is opening her eye. We are to begin patching our daughter's right eye for at least an hour a day to encourage the left eye to develop vision. We will follow-up with this doctor again in four weeks.
March 25th--Our daughter had a follow-up with her pediatrician today. The doctor was encouraged by the decreases in swelling and by how well our daughter is able to open her eye. We decided to give our daughter three of the four shots that a typical two-month-old child would receive (we chose not to give her the live vaccine at this time). We will adjust her oral medications by lowering the steroid dose and increasing the Propranalol dose again this weekend. We will follow-up with the pediatrician again in two weeks.
March 31st--Our daughter had her blood pressure checked today and it was off the charts high. Her dermatologist has lowered her steroid dosage again and increased the Propranolol.
April 6th--Our daughter visited her pediatrician today. Her blood pressure was normal...hallelujah! Her weight gain has slowed, but the pediatrician believes that it might be due to the adjustments that have been made with the steroid. Her head size and length continue to be low, but we're hoping that when she's completely off the steroid these things well level back out to normal. Our daughter's eye is still opening well and the pediatrician was pleased with her progress.
April 6th--I was denied benefits for my employer's "Catastrophic Event Bank" because the MD who reviewed our case stated that a routine birthmark is not catastrophic. I am working with our daughter's pediatrician and our dermatologist to appeal this decision because PHACE Syndrome is much more than a routine birthmark.
April 12th--Our daughter had a follow-up appointment with her dermatologist today. He noted that her left eye looked a little puffy and that her cheek felt warm (indicating an increase of the blood flow to that area). He did not adjust her medications and asked us to watch carefully over the next week for any regression.
April 27th--Our daughter had a follow-up appointment with her pediatrician today. She is concerned about our daughter's head size because, even though it is growing, it is literally falling off of the growth chart. The good news is that her developmental milestones are right on target (laughing, tracking objects with her eyes, rolling over, etc). She contacted the neurologist who felt it would be ok to wait and see our daughter at the end of the May when she has her next appointment already scheduled.
May 10th--Our daughter had a follow-up appointment with her dermatologist today. He was very pleased with her progress and took her off of her steroid. Hooray!!!
May 12th--Our daughter had a follow-up appointment with her ophthalmologist today. The doctor noted that our daughter is using both eyes equally. She encouraged us to continue using the Timolol eye drops which seem to be reducing the size of the hemangiomas around her eye.
May 27th--Today was our four month appointment with the pediatrician. Our daughter measured in the 5th-10th percentile in weight, length and head size. The doctor believes that our daughter may be pretty petite...but likely comes by it naturally (not a reaction to meds she's taken). Our daughter was able to receive all of the vaccines typically given at four months except for Rotovirus (because it's live).
June 29th--Another appointment with our pediatrician to check our daughter's growth. She deemed our daughter "typically developing" in regards to her weight, length and head size. Our daughter is very petite, but is staying on the growth curve as should be expected.
July 16th--Follow-up MRI of the brain. Initial reports show that the internal hemangiomas are shrinking, the carotid artery is working as needed, and her brain is developing typically.
December 16th--Follow-up MRA of the brain, hemangiomas, carotid artery and aortic arch. Initial reports show that our daughter's condition is stable.
March 11th--Our daughter visited the ophthalmologist today and it was determined that she would benefit from steroid injections directly into her eyelid and cheek to reduce the swelling of the hemangeomas. She also had an appointment with her pediatrician who discussed with us the reality that our daughter will likely continue to have frequent doctor's appointments, procedures and testing in the weeks to come.
March 12th--Our daughter had multiple steroid injections today at Dell Children's Hospital: three injections to the eyelid, one injection into her cheek and one injection into the back of her neck. It was a hard day, but we have great hope that this high dosage of steroid to a small area will have drastic impact to reduce the swelling in these areas. We are decreasing the oral steroid dosage by 1/3 and are increasing the Propranalol.
March 17th--Our daughter had a follow-up with the dermatologist regarding the steroid injections. The news was all good...good blood pressure, reduced swelling and an open eye. He even called the ophthalmologist while I was in the room so that I could hear her sharing the good news with her. We are reducing the steroid dosage by half and continuing on our higher dosage of Propranalol. We don't have to go back for another dermatologist appointment for a whole month!!!
March 23rd--Our daughter had a follow-up with the ophthalmologist today. The doctor was pleased with how well she is opening her eye. We are to begin patching our daughter's right eye for at least an hour a day to encourage the left eye to develop vision. We will follow-up with this doctor again in four weeks.
March 25th--Our daughter had a follow-up with her pediatrician today. The doctor was encouraged by the decreases in swelling and by how well our daughter is able to open her eye. We decided to give our daughter three of the four shots that a typical two-month-old child would receive (we chose not to give her the live vaccine at this time). We will adjust her oral medications by lowering the steroid dose and increasing the Propranalol dose again this weekend. We will follow-up with the pediatrician again in two weeks.
March 31st--Our daughter had her blood pressure checked today and it was off the charts high. Her dermatologist has lowered her steroid dosage again and increased the Propranolol.
April 6th--Our daughter visited her pediatrician today. Her blood pressure was normal...hallelujah! Her weight gain has slowed, but the pediatrician believes that it might be due to the adjustments that have been made with the steroid. Her head size and length continue to be low, but we're hoping that when she's completely off the steroid these things well level back out to normal. Our daughter's eye is still opening well and the pediatrician was pleased with her progress.
April 6th--I was denied benefits for my employer's "Catastrophic Event Bank" because the MD who reviewed our case stated that a routine birthmark is not catastrophic. I am working with our daughter's pediatrician and our dermatologist to appeal this decision because PHACE Syndrome is much more than a routine birthmark.
April 12th--Our daughter had a follow-up appointment with her dermatologist today. He noted that her left eye looked a little puffy and that her cheek felt warm (indicating an increase of the blood flow to that area). He did not adjust her medications and asked us to watch carefully over the next week for any regression.
April 27th--Our daughter had a follow-up appointment with her pediatrician today. She is concerned about our daughter's head size because, even though it is growing, it is literally falling off of the growth chart. The good news is that her developmental milestones are right on target (laughing, tracking objects with her eyes, rolling over, etc). She contacted the neurologist who felt it would be ok to wait and see our daughter at the end of the May when she has her next appointment already scheduled.
May 10th--Our daughter had a follow-up appointment with her dermatologist today. He was very pleased with her progress and took her off of her steroid. Hooray!!!
May 12th--Our daughter had a follow-up appointment with her ophthalmologist today. The doctor noted that our daughter is using both eyes equally. She encouraged us to continue using the Timolol eye drops which seem to be reducing the size of the hemangiomas around her eye.
May 27th--Today was our four month appointment with the pediatrician. Our daughter measured in the 5th-10th percentile in weight, length and head size. The doctor believes that our daughter may be pretty petite...but likely comes by it naturally (not a reaction to meds she's taken). Our daughter was able to receive all of the vaccines typically given at four months except for Rotovirus (because it's live).
June 29th--Another appointment with our pediatrician to check our daughter's growth. She deemed our daughter "typically developing" in regards to her weight, length and head size. Our daughter is very petite, but is staying on the growth curve as should be expected.
July 16th--Follow-up MRI of the brain. Initial reports show that the internal hemangiomas are shrinking, the carotid artery is working as needed, and her brain is developing typically.
December 16th--Follow-up MRA of the brain, hemangiomas, carotid artery and aortic arch. Initial reports show that our daughter's condition is stable.
