Yesterday was a GREAT day!!! I took John to see the Neurologist, Dr. Carter, again. She was so excited to see how strong Jasz has become. I could see she truly was happy about it, which is what made me feel good about her being his Dr. in the first place. She genuinely cares about her patients and their success. She also told me that she knew as a parent I must have been relieved to see that blood test come back negative, but that she was breathing a sigh of relief too.
We talked about so much yesterday so let me try to get it all down. I first spoke to her about Sherri's (the occupational therapist) concerns. Now let me go back and say I've noticed a pattern in Jasz' therapy. It seems that Trina and I will be super excited about progress and then Sherri will come in and be negative about the progress. And this has greatly affected my positive thinking. So the first thing I brought up was the first thing Sherri brought up...food allergies. And Dr. Carter ws in full agreement that Jasz may very well have food allergies. She was not so quick to jump on the celiac band-wagon. She rather when to cow's milk. Which actually, when I think about it makes sense. We have a strong family history of milk allergies and though I was not diagnosed with a milk allergy it definitely runs in the family. When I started thinking about it I realized something too. Last week I was pretty consistent about giving Jasz a glass of milk every day. And last Friday I remember thinking about how horrible his skin looked. I couldn’t figure out why. It was so bumpy and dry and itchy. A coupe of spots even looked blistered. Well I guess because I wasn’t feeling well, but on Saturday I forgot to give it to him and that trend continued this week. So, yesterday when I got him dressed for the day, I remember thinking how great his skin looked and felt. It was stills lightly bumpy, but a HUGE reduction from the normal. So she is testing him for a milk allergy and in the mean time I am to replace cows milk with soy. She asked me what dairy products he eats. I told her milk and yogurt. That cheese he refuses to eat. He will even pick shredded cheese off of eggs. She told me that something about the cultures in yogurt make those with allergies often not react to the yogurt. But cheese would make him react. She said she has noticed that kids pay more attention to their bodies than adults and he may realize that eating cheese makes him not feel well. Which would make sense as he ate it for about a week and then has refused it ever since. She said we could try goats milk cheese.
When I asked Dr. Carter about Sherri’s opinion of a wheat allergy. She said it’s possible and since she was running tests anyways she would throw the celiac panel in there. But the most common allergy in children is milk. She is running a celiac panel as well as the milk allergy test. She has also referred us to Dr. Kelts, a pediatric Gastroenterologist. She feels that though the allergies aren’t the cause of Jasz’ muscle issue, they are an issue for him and Dr. Kelts would be best to help us with all related issues to that. He also has a nutritionist on staff so once we do figure out Jasz dietary restrictions and needs she will help us develop a proper diet for him.
My next question from Sherri was the possibility for a joint problem. Well here’s the thing. Trina and I noticed just from the fact that he is getting stronger, his legs are naturally turning in more. And Dr. Carter saw this too. She says to me, “you can’t nit pick on everything. A lot of these physical leg issues self correct with him walking.” She doesn’t subscribe to the idea that if he learns to walk with feet pointed out they will form muscles that way and have to be corrected. She says many babies have the bowed in ankle that we see in Jasz….it self corrects when they begin to walk. She is of the same mind set that John and I were on before Sherri came into the picture. Progress is progress!!! However, she also said it is not unreasonable to get a hip x-ray and see if there is an issue there, as it doesn’t take much to do so. She said we would hate going the the Pediatric Orthopedist. Dr. McGuire is the better one, which is who Sherri recommended. She said we would wait forever to get in to see him, wait an hour in his office only to be given a slip telling us to get his hips x-rayed. At which point I said, “I guess I was hoping you would order the x-rays and see if there was even any need to go down that path.” So she did and right after our appointment I took Jasz over to Cottage hospital and had his hips x-rayed.
I also asked about Cerebral Palsy as Jasz is clearly stronger on the left side. She said she saw no signs of it in him. That most people favor one side. And though he is young to have a hand dominance he has done other things early so why not that? At this point Dr. Carter took a deep breath and I could tell she was not annoyed with me but with Sherri. She says to me, “you know I never tell the OC’s how to do their job. They know how to help kids get moving better than I. But many of them overstep their boundaries. They think they have experience in areas in which they do not.” She went on to tell me a story and she thinks it might have been Sherri, but not positive. But basically the OC in question told this mom that her son definitely had this degenerative disease. Even went so far as to print out information just so the mom could panic. She says the mom saw her after starting with tri-counties. So, by the time the mom got in to Dr. carter she was freaked out. Dr. Carter said she took one look at this boy and knew the assessment was wrong. But she ran the test for this disease anyways because the mom was so upset. The test was like $1500.00 and unnecessary and the results came back as she expected…negative. So she is not a Sherri fan. She also feels like Sherri is being too negative and needs to see progress for what it is…progress. I fully agree!!!
Finally, I asked the big question. Since Jasz has been improving so well on the carnatine, is it possible he simply has a deficiency? The answer is a HUGE yes!!! She smiled so big when she told me this. This is the metabolic disorder she is leaning towards and is also having him tested for. What does it mean if this is the case? A high protein diet, which again the nutritionist will help us with, and a carnitine supplement for the rest of his life…there are worse things. So in order to run the test, he must be off the supplement for a little while. It will be interesting to see if he goes backwards at all while off of it. She wrote a new prescription so that when he starts it up again it will be double the dosage. An interesting side note. She asked me if Jasz’ language has grown recently. I told her yes. He is now saying Izabella, DeDe (Dexter), ball, fish, no, yes, Amen, peace and many more all just started in the last week. She told me that that is an unexpected side affect she is having with the Carnatine. She told me she has had patients with both mental retardation and gross motor issues. Specifically she has a three year old who was only saying one word. She prescribed Carnatine for some physical issues. Within 2 months this girl had 20 words. She is not sure the mechanism for why this is so, but she has seen it many times over. Wow, that fascinates me!!!
Dr. Carter mentioned that Jasz’ platelet count was really elevated on the last blood test. And because it’s not uncommon to get errors she is retesting for that. She said we need to know because if it is high, it means his blood is thicker and he has a higher risk for stroke. That being said she did not seem overly concerned, so I won’t be.
Finally, I asked her about weaning him from nursing. She told me that she would like me to keep nursing him as it will only help him and she thinks it’s great I am still doing so. She said she may be ok with it in a few months as she doesn’t want it to be too hard to wean him, but for now it could set him back to wean him.
Oh yeah, I mentioned to Dr. Carter that we got Dexter. She thought it was wonderful!!! She told me that pets are the best therapy for kids. I told her how Jasz is already crawling more because he wants to imitate Dexter. She thought it was GREAT!!! I say this because again Sherri was not thrilled we got a puppy. She was condescending about it. But Trina and Dr. Carter both have agreed with me that Dexter may yet be the best therapy for Jasz. Jade is great mind you, but she is bigger (about 3 times the size of Dexter) and it intimidates Jasz. Dexter is just about right and I know he will grow, but so will Jasz’ confidence with him. I can already tell, those two are going to get in a lot of trouble together!!!
Dr. Carter told me if I had brought him in the first time with the muscle tone he has now, she would not have really thought there was a problem. She almost can’t believe the difference!! GOD is AWESOME!!!! So many twists and turns in our path, but He pointed us in Dr. Carter’s direction. And she thinks outside the box a little, and is very Positive…the perfect Dr. for our family.