Our never ending cycle of appointments just keeps going and going and going… I have lost count of how many we have had this month, but this week alone we will have had three. I have been vey behind in my updates only because I have not had much time blog recently and because I managed to infect our new computer with a very nasty spy ware virus. I just want to say a HUGE THANKS to our friend Paul for correcting the problem and allowing me to connect again to the outside world!
On Monday, we had Lucy’s neurology appointment. This appointment confirmed what we already knew, Lucy has loose joints and suffers with moderate to severe hypotonia especially in her truncal area. We discussed Lucy’s weakness on her left side and came to the conclusion that a repeat MRI will be necessary, but when this will be done is up for debate. We would like to wait until she is at least eighteen months old, basically by this age the rate at which the brain grows will have slowed. Her neurologist feels that therapy is very beneficial for Lucy’s development, so we are looking into adding occupational therapy to our list of therapies. When we go to Atlanta in a few weeks Dr. S ordered a spinal tap on Lucy and at that time our neurologist wants him to check for neurotransmitter diseases. In her opinion, this would be her next step with Lucy. Our neurologist has sent patients to Dr. S and is familiar with his procedures. From what we understand he does the initial diagnosis but does not do follow up appointments. She is willing to follow up with us after he has made his final report on Lucy. She told us at this appointment that she is confident that Lucy is not suffering with any form of muscular dystrophy or cerebral palsy, that was a relief to hear as her metabolic doctor had suspicions. Lucy’s loose joints are a concern, we had Lucy fitted for SMO orthotics(Sure Steps) on Monday in hopes of providing her with extra support for her loose joints. Not sure how she will do with these, we’ll just have to see. Our next hurdle will be to find teeny tiny shoes to fit with her orthotics, Lucy’s shoe size is about a one.
On Wednesday, we had an appointment with her endocrinologist to discuss the need for a fasting study. This appointment proved to be very beneficial to Lucy. We all agreed that we need to document low blood sugars on Lucy at home not just in the lab. If we find that we are getting low glucose readings at home than a fasting study will be necessary. We came up with a system for documenting and reporting Lucy’s glucose readings and left there with a better understanding of why it will be necessary to do a fasting study if we find that Lucy is hypoglycemic. We were told that there is no one blood test that can be done to detect the cause of hypoglycemia. In order to attempt to find out why her body is experiencing this we need to test her blood when she is experiencing low blood glucose levels. This will help to pinpoint why and where in her body this is occurring. The only way to do this is to put her through a fasting study. Her endocrinologist does not feel that Lucy’s issues are solely endocrin in nature, he feels that there are too many organ systems involved. He believes that there is a primary reason for why Lucy is experiencing all that she is, but does not feel that the primary reason is endocrin in nature. He does not believe that Lucy’s hypoglycemia is as a result of the over production of insulin, as those babies tend to be very chubby because their bodies are storing the excess insulin as fat. This is clearly not the situation with Lucy. He told us that in cases such as Lucy’s, he has found that the cause for hypoglycemia is usually related to the way the body metabolizes fat thus making this an metabolic issue. We appreciated hearing her endocrinologist explain to us what he is thinking and why, knowledge is power!
The reason we have not set a date for Lucy’s GI workup is because our endocrinologist admitted that he was “holding up the show” so the speak. Everyone was waiting on him to set the dates for the fasting study before anything else could get scheduled. He was waiting to speak with us before he went ahead and set a date, and we are glad that he did since we are not sure yet if we even need to do the study. If we find that we do than the fasting study will be done during the first three days of her admission before any of the GI stuff will be preformed. We all agreed that at this point we need to wait until we get back from Atlanta before doing anything. In a way we are glad, we are hoping to ask Dr Schoffner’s opinion about some of these things.
Tomorrow we have another appointment with Lucy’s metabolic doctor. I am hoping that we can clarify what the next month will involve. I’m not sure that is realistic, but I am optimistic.
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Hi there- Just wanted to give you my SMO experience. Rinnah got SMO's about 2 months ago. Her shoes size is a 3, but with the SMO's she needs a 4. We had good luck with some little shoes we found at Walmart. They are very lightweight and keep the SMO's in place. It was really hard to find things that worked in smaller sizes! We looked at every local store and finally found what we needed at Walmart?!
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