First Visit to Scottish Rite

Yesterday, we took Gracie to Texas Scottish Rite Hospital for Children for a consultation visit. Scottish Rite has a Spina Bifida clinic that will help us have a more comprehensive treatment plan and also simplify doctors' visits. We met with a Developmental Pediatrician and nurse who specializes in Spina Bifida while we were there. In the future, we will go on clinic days and see doctors, therapists, and other members of the care team in one day and make plans for her care with all of their input. She weighed 7.2 kg which is 15.8 pounds. She's a little thing, but she's growing everyday.

We first met with the nurse, Sue, who gave us more information about Spina Bifida than any other doctor has done so far. She recommended starting foods with Gracie to help her learn how to eat. This is a prime time for her to learn how to move food from the front of her mouth to the back and all the other movements that go along with eating. Also, gagging and choking are symptoms of Chiari problems and this will give us one more thing to look for. Speaking of Chiari, we went over many of the behavioral things to look for to cause concern. Since she doesn't have a shunt, any Chiari symptoms could indicate the need for a shunt to reduce pressure on her brain. They are also scheduling an ophthalmologist appointment to have one more puzzle piece in looking at pressure and fluid buildup in her brain.

Sue also talked with us at length about latex issues. She has been working with patients with Spina Bifida since latex allergy outbreaks in the 1980's. She said that for now we should be taking the significant precautions of avoiding balloons, gloves, and koosh balls. The more latex we can avoid the better, but those are the big three so long as she doesn't develop a full blown allergy. She recommended going ahead and getting Gracie used to wearing something on her feet all the time. As she gets more mobile, if she doesn't have good feeling in her feet, we will need to make sure they are protected from cuts and scrapes to prevent wound problems. Since Gracie doesn't currently have any major orthopedic issues, they won't start scheduling orthopedic appointments until she is trying to pull up to stand on her own. They want her to do as much as she can without braces to keep from limiting her. We will see physical therapists at our clinic appointments that could change that if something comes up.

One thing that we talked with Sue about at length was increased folic acid. She recommended that not only do I need to increase my folic acid, but also all of our extended family (siblings and cousins) should make sure they are taking plenty of folic acid. Also, Gracie will need extra folic acid when she grows up as will Bennett's wife.

One of the most interesting things we learned was that despite the fact that Gracie's scar from her lesion is at the lumbar level, based on her functioning Sue would consider her problems to be at the sacral level. We were floored. We have been amazed from day 1 at how well Gracie has done and how much she has been able to move and feel, but her lesion to be possibly categorized at sacral, WOW! They are waiting for more records from Dr. Donahue, our neurosurgeon to get a better idea.

Dr. Adams came in and we continued our discussion. He asked us to try and get Dr. Donahue to order a MRI when we go in next week. He would like to get a better picture of her brain and spine to know where the lesion is and establish a baseline to look for future changes. He was a little concerned with the increases in her head circumference, but I don't think the measurement they took was accurate. I'm interested to see what Dr. D thinks next week. They too questioned our cathing regimen and urology meds. Dr. Adams ordered a VCUG which we were able to have done before we left the hospital to check for reflux into her kidneys. We go next week for a renal ultrasound and to see Dr. Pugach for the results from the urodynamics, but we now have a plan to see the urologists at Scottish Rite in August for a second opinion and unless she's refluxing we may be able to stop cathing until potty training and stop her bladder meds. We only want to do what's best for Gracie, but it's so nice to have multiple opinions to consider. In the meantime, they want us to consider moving up to size 8 caths from size 6 since she's grown alot since birth. We also had a lot of blood work done to continue getting puzzle pieces of everything going on with Gracie. We're anxious to get all the results back from the VCUG and bloodwork.

Overall, we had a great experience. Everyone was very nice and the facilities were wonderful and very kid friendly. They even gave Bennett a box of legos to play with in the exam room and a teddy bear at family services. We are looking forward to going to the clinic in September or October and finding out more and more about what we can do for Gracie.