Wow.. time has flown by! Looks like the last time we updated the blog was back in June and baseball season was in full swing for us! Now we are in the full swing of football and school is back in session! This summer was filled with doctors appts for Brennan. Seemed like we were at Cardinal Glennon every week in July if not twice a week. A lot has happened since the last time I blogged. July was a big month for Brennan. We met with Rheumatologist, Dr. Moore to discuss why Brennan was in so much pain. We always suspected Ehlers Danlos Syndrome (EDS). What is Ehlers Danlos Syndrome? Ehlers Danlos Syndrome is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening. EDS can have neuromuscular complications including ocular and ophthalmic complications. There is no cure for EDS, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage. EDS is a chronic pain disease, with patients suffering daily. http://www.healthline.com/health/ehlers-danlos-syndrome#Overview1 Dr. Moore wanted further testing so we started the process. We had a lot of testing done, lots of bloodwork, echocardiogram and seeing an ophthalmologist.
Also during that time, we also had our follow up appointment for his 6 month check up from his Chiari surgery. He had his MRI done July 21 and also saw Dr. Elbabaa. We received the results that everything looked great. Surgery was working.. he had good flow around the brain! Yeah awesome news. I did voice concern on some things on his MRI but they pretty much told me not worry. I also voiced concern of his headaches coming back... speech stuttering again... pain throughout the body. Again.. he reassured us it was "residual" and that he will have the headaches and pains. It was not a flip of the switch.. it takes about a full year to recover from this surgery.
I ordered a copy of his MRI from July to have on hand and to see the images since they really didn't let us see them at the doctors office. When we loaded it we both were really shocked by what we saw. We started second guessing the images on the CD. We both felt like we needed to find a Chiari Specialist. Getting some advice from some friends of mine who also have Chiari and see a doctor in Chicago, we both felt like we needed a second opinion about Brennan. (Thank you Teresa and Donna)! I called Dr. Frim's office in Chicago to see if he would give us a second opinion and they told us to send his MRI images and medical records. I was nervous sending all of this off...I now know we did the right thing.
August 28, 2015.. we had our follow-up visit with Dr. Moore to get the final results. The words... "yes.. it is definitely Ehlers Danlos Syndrome." Hearing those words were bittersweet. We knew it all along but just getting a doctor to hear us out. Since we narrowed it down out of the 6 different types, Dr. Moore stated Brennan has EDS type II.. Classical. Click here to read more about Classical EDS http://www.ednf.org/classical-type Brennan has always complained pain throughout his body. His main pain is in his head, back, legs, knees and feet. Sometimes his arms but I truly think the kid always has pain. He does bruise very easy and his legs and arms are always full of bruises. He will start physical therapy to help strengthen his muscles... upper and lower extremities. Trying to figure out a way to get him to gain weight since he has lost 4lbs We go back to Dr. Moore in March for a follow up to see how things are going.
August 29, 2015.... Today I was not expecting a phone call from Dr. Frim's office. They have been reviewing his case since there was a lot. I received a phone call while I was at work regarding Brennan. Not the news we wanted to hear but after further review Dr. Frim has stated that Brennan's brain is slumping. WHAT????? To put into terms for someone to understand... his brain is sliding down more. His first surgery was not done correctly and that he needs to be fixed. More than likely his CSF fluid is being blocked again and that is why he is having more pain. The dura should have been opened up and that the herniation should be cauterized. SERIOUSLY... at that point I wanted to throw up and still do. So given the information we received.. we are making a trip to Chicago September 24th to meet with Dr. Frim at 1 pm. We are now facing another surgery to fix Brennan again.
The last 2 days have shown me that life is not fair but we have to keep going. I keep looking at Brennan and can't help but tear up and wonder why him.. why us.. why, why, why. Just not fair to any of us. Not fair that he has been through so much already and is about to go through more. This has been a long journey and it seems like this journey is gonna keep getting longer. To all the Chiarians that are on their journey... I feel for you all. To everyone that is following Brennan's journey, we thank you for taking the ride with us. I will definitely keep everyone updated!!!!
