Dr. Wonderful and Dr. Rock Star

I feel incredibly blessed to have these two men in my life. And by these two men, I mean Dr. Wonderful (aka Dr. Arndt) and Dr. Rock Star (aka Dr. Chugani). It has been very clear to me that God has placed these people in our lives for a reason.

On Friday, I had to stop in the neurology clinic to pick up Dominic's medical records and all his scans for our appointment with Dr. Chugani. When Dr. Arndt found out I was there, he asked to speak with me. The first thing I thought was "oh no, now what?" But he just wanted to chat with me to see how I was doing, see Dominic and talk through any concerns or questions. He also gave me a copy of the study done on Vigabatrin and MRI abnormalities. He actually presented Dominic's case at a neurology conference on Friday in reference to the stroke/Vigabatrin/MRI abnormalities. He spent a good half an hour answering questions, apologizing for what an emotional roller coaster this has all been for all of us and told me that from now on, everything can go through him. So, if we end up back in the hospital for something, the Dr. on call can contact him, no matter when or what time, to let him know what is going on. Hopefully this can prevent any more confusion and conflicting opinions. Every time I talk with him I feel encouraged and hopeful. Even if the news he gives isn't the greatest, he never leaves me hanging and he is determined to find answers. He calls me back personally and makes time to meet with me. I so appreciate his honesty, expertise and genuine care for Dominic. It is so obvious to me that God placed him in our lives. He just moved to Grand Rapids 2 months before Dominic was first hospitalized. What timing! He has just made this entire process more bearable and hopeful. He is just so wonderful, hence the name Dr. Wonderful!

Dominic's MRI showing Cortical Dysplasia

Yesterday I got to meet the "rock star" of the neurology world, Dr. Chugani. He is fabulous. Not only does he know his stuff - he actually coined the phrase "cortical dysplasia", which is the condition Dominic has (where one side of the brain is malformed) and invented the PET scan (which Dominic will have this summer) - but he is also incredibly down to earth and kind. He even gave me is email address and said any time I needed anything or had questions, to shoot him an email. Not many doctors do that!

A very happy 5 month old

But, now onto what he actually had to say about Dominic - first of all, he thought he looked great. Dominic was smiling, giggling, moving around, and tracking. He does not think Dominic had a stroke, he believes it's swelling in the brain. This could be caused from the seizures or possibly Vigabatrin as Dr. Arndt suggested. He does not think he has a metabolic disorder or Mitochondrial disease, but is glad we are seeing the metabolic specialist of U of M in two weeks, just to rule it out as a possibility. He does not believe the spasms will come back (yeah!). Obviously he can't say for sure, but in his opinion, he thinks he's done with them. The man has seen over 500 kids with IS and written a book about it, so I trust his opinion. After looking at his MRI, he definitely says Dominic has cortical dysplasia and attributes the IS, complex partial seizures and weakness on his right side to the malformation of one side of his brain. Should Dominic continue to have complex partials on a regular basis or should the spasms return, Dominic WOULD BE a candidate for surgery. Now, this sounds like it would be a bad thing, but actually, this is GREAT news! A hemispherectomy (where they remove a hemisphere of the brain) is only considered for patients (usually children) who have severe epilepsy with seizures arising from only one side of the brain. It is performed only if that hemisphere is already functioning very poorly, so the patient loses little or no additional function.We are hoping and praying it will not come to this and his seizures and spasms will continue to be controlled through medication, but how great is it to know that if the meds fail, surgery could correct the problem. He told me he has evaluated a lot of kids where the seizure activity is in both sides of the brain. Unfortunalty, there is nothing that can be done and he has to turn them away. I can't imagine what it would be like being told there is nothing that can be done and my child will continue to seize indefinitely. As my mother-in-law said yesterday, it's those families we really need to pray for.

MRI with DTI

Dr. Chugani is concerned about his hearing, Dominic didn't really seem to respond when he checked it. So, he said the BAER test we have next week is a must. He said he will probably always have weakness on his right side, but PT and OT should help. What we really need to focus on over the next several months is his development. If he continues to improve and develop, that would be great. But if his development lags and he falls farther and farther behind, surgery would be considered. While seizures are bad, they aren't the only indication that something is wrong in his brain. Some kids can continue to have seizures but develop just fine and other kids stop having seizures but their development lags. So, we need to keep an eye on both.

CT vs. PET

Dr. Chugani wants to do an MRI at his office in a month or two because he uses a special technique - MRI with DTI, which is a specialized MRI that evaluates neural pathways within the brain, brain stem, or spine, such as motor-skill controls and speech. He then wants him to have PET scan this summer. A PET (or positron emission tomography) is a medical imaging technology that images the biology of disorders at the molecular level before anatomical changes are visible. It gives information about the body's chemistry that is not available with other imaging techniques and reveals metabolic information (as opposed to anatomical information). He thinks Dominic is still a little young at this point as his brain is still developing and he's not currently having seizures. So, we'll head back there for both of those and then a follow-up appointment in September.

My little miracle

Overall, the appointment went very well and he seems to think Dominic will do great. We'll keep an eye on things, continue with meds and see him in a couple months. I couldn't have asked for things to have gone better. I have seen over the past few months how God has put certain people in our lives. I have the most amazing husband who has been my rock through all of this. My Mitchell who has been such a great big brother and champ for going to all the hospital and doctor visits. And for Dominic, who has been an amazing trouper and taught me so much about strength, resilience, overcoming the odds and unconditional love. Despite all he's been through, he remains the happiest baby I've ever seen. From our friends and family who have continued to support us with prayers, cards, emails, babysitting, meals, house cleaning; to all of the specialists Dominic has seen - neurologist, infectious diseases, urology, nephrology, opthomology, metabolic specialist, and occupational and physical therapists. Of all of the specialists, most importantly has been Dr. Arndt. We would not be here today or have seen all the specialists we have, without him. He has taken such a special interest in Dominic and I am so grateful to him and to God for placing him in our lives. While I would have never asked for everything we've been through over the past several months, God has used this experience to reveal so many blessings to us and I could not be more grateful. I guess I got my second miracle after all! Praise God!