More and more frustration mounts. We had our contact at UNC get in touch with the nurse that is aiding the meeting at Baptist. The meeting is not longer going to happen this month. It MIGHT happen in the first 2 weeks of September. MIGHT being the key word. No worries this is only a childs health we are concerned about. I did find out they are concerned that he is overdosed with radiation because he has had a lot of xrays, CT scans, and MRIs in eight years. Well we have a child with hydrocephalus, broken bones, CP, mild scoliosis, frequent frequent pneumonia, frequent swallow studies, and constipation issues. For EIGHT years we have had this of course we have had a load of imaging. Next step the reason NO ONE will see Jackson right now is because they dont want to see him now and then have to repeat a visit after the meeting....um...why not? When this week is over I have driven to Winston 3 times. Next week I will be in Winston three times as well....why is it such a big deal to ADDRESS AN ISSUE NOW??????? Our contact was told if we were concerned we needed to call the neurologist. So...I did. I called and sent a message to the nurse. The nurse called me back within 10 minutes. She asked what was going on. I told her. She paged the dr and called back within another 10 minutes with the answer of.....the dr doesnt know!!! Jackson is difficult. No DUH!! She said she wants him seen at the pediatricians office.....we already done that....okay so if we are concerned we can go to the er if we feel that is needed. I dont feel that is needed because if I felt like it was needed we would have already been there. So now we are at no one knows. So what is going on?? I am going to put it out there and maybe someone can help me. 1. In November 2012 Jackson stopped drinking. His heart rate increased. He started having cold sweats (as in we had to change his clothing he was sweating so much). His body temperature started fluctuating (one time he would have a rectal temperature of 96 30 minutes later his body temperature would be 103). He started dehydrating every other day. He was going to the er getting 1-2 liters of fluid every other day. His symptoms would correlate with severe dehydration...yet he would only be mildly dehydrated.He was sleeping 16-23 hours of the day. No answer no one was very concerned. 2. We got a g-tube to help. Yay no more dehydration. WRONG!! Jacksons fluid intake is increasing monthly. We are up to him needing 48 ounces of fluid per day to not get dehydrated. Oh and about half of that needs to be gatorade or he shows signs of dehydration. No known reason behind that either. 3. Jackson has had ekgs and echos that reveal a tricuspid jet insufficiency, and abnormal t wave, an extra beat, and his heart rate does stay high more than normal. I was told non of this is concerning at the moment but if it continues it can cause heart damage....why not stop the problem before the child needs heart surgery? 4. Jackson has always had constipation. No reason why. In the past few months he has had three at home clean outs and a clean out in the hospital. He is now backed up again not even month a later. No reason why (luckily a dr is working on this issue) 5. Jackson was tested and had no anal wink. We were told he might not be able to potty train due to the lack of feeling in his genitals and we were questioned about sacral dimples and pits he had. Jackson potty trained on his on. He only had normal child potty training accidents. Now he is no longer potty trained. 6. Jackson has passed all swallow studies recently. He swallows food and drink safely. However, when Jackson was put on thin nectar liquids it helped. No aspiration pneumonia, no choking on liquids. Now he has started choking on liquids. No answers drs are looking into this. 7. Jackson has a poor chew so therefore he is a choking risk. He gags a lot during every meal. He has to be fed due to this. He still gags and he chokes. When he gags he starts sneezing. Food and liquids can come out his nose. No reason. Drs are looking into this. 8. His behavior fluctuations so much. Today he may listen well, know things that we have taught him (manners, safety, educational things, etc) Tomorrow he might not listen, throw tantrums, not even be able to write anything in his name past J. 9. It has been mentioned that his brain cant keep up with his body.This is said due to the brain injury he had when he was an infant. Okay if this is so why is this stuff just now happening. He has growth hormone deficiency, cortisol deficient, central sleep , etc. Also if his brain is not able to keep him with his body NOW..what is going to happen in a few years when he gets bigger...and bigger? 10. What is going on with his legs?!?!?!? It is not normal!!!! (No answers no concerns nothing!) 11. Why is he in pain?? Is he really in pain or is it something else he is feeling but cant explain it? 12. Why are his seizures evolving? We started off with grand mal seizures and now he requires four different medications for 10 different presentations of different classes seizures, grand mal, complex partial, simple partial, sub clinical, ESES, WHY??? These are just the things I have on the top of my head. This is what I have been trying to find answers for since 2012 some of them. No one wants to help no one wants to dig deeper. This is what my son is going through DAILY. There is no simple fix. This is why we go to drs to get help just to be ignored. Mind you the only worries I have that are being addressed by drs are being addressed at UNC. Other than that we have no answers. I have a few drs that are concerned but NOTHING is being done. Tomorrow I should find out what the neurologist thinks and what they are saying about his bowels at UNC.
Posted on: Thu, 21 Aug 2014 00:11:45 +0000
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