Heres a LONG update on Ali for the people who have asked- we finally got a probable diagnosis for her today after 3 ER and 2 doctor visits in 4 days. Her doctor believes it is Trigeminal Neuralgia. Its rare is children, but her doctor feels pretty confident thats what it is. Today is the first time he saw her, we saw the on call doctor yesterday. Ive been reading up on it tonight and it sounds like a pretty accurate diagnosis. We will still be scheduling an MRI in the next few days and then shell be going to a pediatric neurologist, but hopefully were on the right track. She starts on a type of seizure medication tomorrow and he gave her a prescription for pain meds that he feels will help so we dont have to keep going to get shots and IVs of medicine cocktails. She had a rough reaction to one of the meds called phenagrin (sp?)they gave her last night in the ER, so hopefully these will do the trick. Im mentally, physically, and emotionally exhausted from lack of sleep and from worrying about her. We all know Im a worrier as it is. Its hard as a parent to see our children crying in pain and not be able to make it better. Its such a debilitating feeling. Thank you for all of the support and suggestions. I appreciate all of the love and prayers. On a happy note, my big baby girl, who has never been a huge snuggle bug, has wanted me to hold and cuddle her constantly these last few days. I have loved that part. It shows that it doesnt matter how old, or big, or even if youre a bratty teenager, you still want your mom when you dont feel well. I know I do.
Posted on: Wed, 07 Jan 2015 04:42:07 +0000
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