Health knowledge made personal
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Last Tuesday we went to oncology where Kennedy's doctor met with us to go over Kellsey's blood work. HE said that by looking at her previous labs, he doesn't think that Kellsey is anemic. He drew MORE blood to see what her numbers were looking like and called her a "mystery". When the nurses went to draw blood, her whole arm broke out in petechiae which freaked them out, but she's done it before. And we've freaked out before, and it turned out to be nothing. Her platelets were good (as of the blood draw from neuro a month before) so I kind of brushed it off. The doctor there said he would have results for me by Friday and he would call. He didn't. Yesterday afternoon, after I called neuro, I called oncology. They said the results were in but the doctor was in with a patient and he would call me back. Again, he didn't. So we wait. Last Thursday we went to endocrinology. There, the doctor told us that with the way Kellsey's labs are reading, she does NOT have hyperthyroidism, she has hypothyroidism. Big difference there! I asked why I was told hyper. I know I was told hyper. She just shrugged and said, "Eh, you got the results from a neurologist." Okay then! So, endo of course wanted to draw MORE blood. It's a good thing Kellsey just sits there and smiles. She said the results would be in the next day, and if not then, by Monday for sure. So, yesterday after I called neuro and oncology, I called endo. I was then told by the receptionist VERY rudely that there is NO way the results would be in and that patients are not allowed to call for test results until it's been two weeks. Allowed? What am I, two? I very nicely tried to explain to her that the doctor told me the results would be in by today. I was cut off with, "Well they're not and don't call back for 2 weeks." Click. Awesome. So I guess we'll wait. And then, if she does have hypothyroidism, we may just start the hunt for a new endo. Today, Kellsey went to the dentist to be fitted for a mouth guard to hopefully deter her from chewing on her lips. When Kassidy was at the dentist a couple weeks ago, I talked to him about Kellsey's lips and asked his opinion. He said immediately he would make her a mouth guard, and he would do it for free. Lord bless him! So today she went in and got impressions done. Yesterday, when we were there with Kameron, he took a look at her and decided to put her on antibiotics. Yes. Her lips are that bad. The other moms on my CIPA group who have had experience with oral mutilation, said the mouth guards didn't work well for their children. But, this is the least drastic measure, so we have to at least try. The mouth guard should be in in a couple weeks... and so we'll wait. Anxiously. I'm so hopeful that this will work for her. In the meantime, we do have a couple answers to other stuff. We know she does not have celiac's disease, hirschprung's disease or reflux. The only one I thought maybe she had was reflux. In a couple weeks she'll have a swallow study to see if she's still aspirating. Those should be immediate results as well. Other than that, I have no idea what's going on. Is she anemic or not? Is something else going on with her blood, or not? Does she have hypothyroidism... or hyperthyroidism... or nothing at all? Will the mouth guard work, or not? Wait. Wait. Wait. Thanks for waiting with me. |
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It's been over 4 weeks since Kellsey was hooked up to her 24 hour EEG . They told us the results would be in by now, so last Thursday I called her neurologist. Her nurse said that they were wondering where the results were too and that they would check on it and call me back ASAP. when they didn't call me back by Monday afternoon, I called again, only to be told that her doctor was out of the office until Wednesday. So we wait.
Also over a month ago, her neurologist also ordered some blood work to be done . She did this because her iron was low, and she wanted to see if it was still low and then start her on iron drops. She also wanted to test her for vitamin deficiencies and some other stuff. That blood work confirmed that she was extremely anemic, despite being on complete nutrition with her pediasure, and it showed that she may have hyperthyroidism and there was other screwy blood work that got us a free pass to hematology/oncology. So I called the new specialists to make appointments, and we were told, "wait." So we waited.