Okay so this week we saw the immunologist , we were referred there since all the biopsies and gene test and positive for Celiacs but after 6 months on a strict gluten free diet Luke is healing. We already knew he had a slight milk allergy only a 2. But the immunologist thinks this could cause healing to be slower so it looks like we will be removing milk and milk protein for a few weeks and then re biopsying to see if there is any improvement. So how am I going to feed a child who is picky and some days eats nothing or drinks nothing but dairy milk, cheese, yogurt etc.. They also went on to test for other autoimmune issues and the results will be back soon. There are other things that can present like celiacs and not be so we just wait!
Then there was the doctor visit to the pulmonologist about Luke's episodes of turning blue. It was a little sad to me that all they could tell me is his brain is forgetting to tell him to breath. Are you kidding I feel like he is smarter than that and have a hard time comprehending this.. The good news is they don't believe it to be lung or heart since he is gasping for breath instead he just loses color and goses blue. The bad news is she explained i may start to see this more often now that they are happening more frequently. Yuck! Well then there was the appointment with the endocrinologist which was probably the most shocking of the week. We again discussed growth hormone which I dont see the point since he is not actually growth hormone deficient. But at the end of the appointment the nurse practioner said "there is just one more thing on my list to discuss." She asked, "have I seen any early signs of puberty, specifically pubic hair down there" I kinda looked stunned and for a minute thought she must have the must checklist . I thought she must be looking at the list for teenagers. I figured she must have forgot this tiny handsome little child is ONLY 3! I must have looked shocked and she said, " A little hair is normal but if its black curly hair thats a problem!" Crap I know what black curly hair is but I could not believe she was explaining this to me! She went on to explain to me that children as young as Luke can hit puberty this early. Some of the children like Luke with different deletions and duplications have satrted as young as 3 or 4! I was shocked and she made sure to tell me that I should call there office if this happens so they can stop it. I kindly said Thank You and realize now she was doing me a favor and by not mentioning this I may have not noticed:) HEHE! But still I am still in a fog! Puberty at 3 or 4 like I don't have enough things to worry about. I am clearly not ready for this! So I will add this to the list the long list of things the doctors have told us CAN HAPPEN and hope it is one of the things that DOESN"T! but still what a week of crazy news! Next week 3 more therapy and 3 more doctors appointments so stay tuned for new developments!
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Hi there!
ReplyDeleteI'd can't offer advise, only offer you what it's been like for us. My husband, when he was little was hit by a car, i know what does this have to do with anything, hold on I'm getting there. He was about 8 years old at the time. He was in ACH in a coma for more than 10 days due to the injuries. Many moons later when we were both 17 is when we met, worked together. Even more moons later in 1995 we were getting married. about a month before we got married, Steve (my hubba) had his first seizure at 4:30 in the morning...shook the entire bed. That is how I woke up. Scared the living crap out of me. I had to flip him over & call 9-1-1. any way, we got married a month later. The seizure activity increased over the next year, to the point by the Fall of 1996 after we just moved into our home he ended up on temporary disability for his seizures. at the time he was still driving to work. SCAREY! So I wasn't working, I was in school full-time. He was out on disability through his at the time job. Ended up not being able to return. I had to find a job & still go to school (student loans would have wanted $$ if i didn't). After fighting with SS for disability income for him, a year and half later finally he was awarded ssdi. it took 3 years to find the right medication and the right mixture. we relied on scat to get him to the appointments. I wasn't always able to go to the appointments, as you say sometimes it's just easier if you go or do it, because you then know exactly what was going on. I'd meet him at dr appts after scat had dropped him off. It was the hardest time, I'll admit it, I'd think what if he had a seizure during..this or that. I had to watch him 24 hours 7 days aweek. we survived. it not easy! I still wait for another one to happen, I never completely relax regarding the seizures & him. if he gets over tired he has them. So then when we had Tristan almost 6 years ago, Tristan was born with Hydrocephalys (however you spell it) and seizures (god help me) and then the cerebral Palsy was later diagnosed. then shortly after he was born my husband started having issues with muscles (thought it was going to be MS really!) but ended up being Myasthenia gravis...i thought he was trying to pull my leg. it seemed like it happened in convient times. unable to help me because he had muscle weakness. Oh how I wanted to scream. we've been through a lot. You've been through a lot. But as hard as it is to do, live in the moments not in the what ifs. Moments pass, that's where memories are made. Don't live with regrets, press forward to make more moments. Hang in there, you are doing an awesome job. Life is made of Moments remember that!