I am so frustrated I could SCREAM! I feel that no one is hearing me or seeing what I am seeing! The EEG came back normal! Blood Gases are normal! Blood work normal! Cultures normal! So what does this tell us? Blood Gases tell us that she is not dehydrated, she is not being over ventilated, and she is not fighting infection! Normal cultures = not respiratory, she does not have anything going on in the lungs. Blood work shows no infections as well. And last but not least, EEG being normal means no Seizures!
I think their full of CRAP! Yes, the EEG might have been normal, but I still believe that all of this is partially being caused by seizures, you look at her and you can tell she is seizing by her episodes of blank stares and the twitching spells, arrrgh! I could scream! We are awaiting CAT SCAN results, to determine if she is having some kind of pressure on the brain or some trauma of some kind in the brain. But for now they are kind of blowing it off as nothing or rather that is how I am feeling!
It is not nothing PEOPLE! My child is not functioning! She is sleeping all the time or trying to! (If you call thrashing around in your sleep like you are in pain, sleeping!) And when she is awake, she looks like she has been heavily medicated! She can't tolerate her feeds without Retching and she is choking on her saliva! Now tell me that is normal! Because I don't think so! The Neurologist that is on call tells me, "Well we just need to give it time, she is just tired and we have to be patient. Mom at least she is still waking up! Yes I understand she may be sleeping all the time, but she is moving in her sleep and is kind of responding to you when you tap her (yah in a drug coma state!). So I am not worried, she looks great from a Neuro stand point!"
Oh believe me it took everything for me not to lose it on her and I think she could tell too! Now they are trying to tell me that it is just a symptom of her diagnosis and they might not be able to do anything about it and because it is such a rare disease they can't tell us anything more. You know how I take this, we don't know what's wrong and we don't have time to figure it out and so we are going to do what is easy and blame it on her diagnosis' to shut the parents up and leave it at that!
All I have to say is my child is not alright and I have every right to worry and want answers! I am so lost right now! My gut is telling me there is something seriously wrong, but I feel like I am the only one seeing it! Maybe I just need sleep, something to eat and a little patience! Maybe just maybe after this, I will have a different perspective, but as for now I am one irate momma!!!!!!
Try and be diligent and persistent with what your mommy gut is telling you. There have been many times I have expressed my concerns to my kids’ doctors and they give me the, “everything is OK speech.” The one where they treat you like an over protecting mother that knows nothing about medicine and just needs to shut it and listen to what the trained professional says. I might not know anything about medicine but I am an in tune mother and most of the time I have turned out to be right. I know you too are a mother that is in tune with her kids so go ahead and push! Don’t let them make you feel stupid and helpless because you are not. We love you and think about you daily. Call me when ever you need to vent. I am here to listen. -Brianna
ReplyDeleteMy Gavin at age 1 1/2 had it so much easier than Payten does, so I won't even begin to compare our challenges...HOWEVER, I will say that Gavin had severe grand mal seizures over and over again (sometimes up to 16 a day) from 5 months of age until age 3. They were never well controlled with medication and even today his Neurologist thinks he's still having the partial seizures. BUT THROUGH THESE YEARS OF SEIZURES, HIS EEG'S HAVE ALWAYS COME BACK NORMAL!!! As a matter of fact, one hospital stay, he had a normal EEG and when the doctor came into the hospital room, just hours later, to tell us that it was normal, Gavin happened to have a full blown grand mal seizure right before the Dr's very eyes (lucky for us). After they stabalized Gavin, Dr said, "Wow. That was as bad as a grand mal seizure gets. The EEG (done just hours before)missed the abnormal brain patterns, I guess. I was just coming in to tell you I couldn't diagnose him with Epilepsy because we haven't yet seen anything that medically proves for certain that what he is experiencing is, in fact, seizure activity...Now, there is no doubt in my mind. I am giving him a diagnosis of Epilepsy and, after having seen the severity of his seizures, will be adding some new medications to his protocol to better control them." So, from our experience, those EEG's can't tell much of anything. Gavin's pediatrician considers him to have had one of the worst seizure disorders of any of the patients he has seen yet still ALL EEG'S HAVE COME BACK NORMAL. Medicine is sometimes a bit of a joke! Just thought I'd share so you don't feel alone in the irritation of tests that aren't giving the correct information!
ReplyDeleteDenise