Dawson has had a couple of pretty good days. Still not much change in seizure activity but he continues to be a pretty happy baby in spite of them. I wish we could say the same for us. Were sick to death of seeing them.
I talked to his Neurologist the other day by fax. Yep that's right. A fax. Those of you who are going through this already know that you can never talk to a neurologist by phone. You have to call the nurse, the nurse will then ask your questions to the doctor, the doctor will give the answer to the nurse, and then the nurse will call you back. Usually we get an answer in about 6 hours and hopefully nothing was lost during translation of all the messages. Soooo. Now I just send the neuro a fax with my questions and try to cut out some of the talking back and forth with the nurses. Anyway I was inquiring what the next step was going to be seeing how he is on the max dosage of Topamax and its not working. She mentioned us going to Atlanta to see a Genetic specialist who will look at his labs further to try and nail down whats causing his seizures.
She mentioned doing a muscle biopsy there as well???? I am kinda wishy washy on this whole thing. I hate to put him through any more testing and a muscle biopsy seems pretty invasive to me. Do you do that to your child on the " chance" that they may find something. And if the treatment is still going to be just trying this med and then that med and then another med, whats the point of putting him through that.
In the mean time we have another EEG scheduled for this coming Monday. She said that depends on how that one looks it will determine what drug we try next. Sometimes we feel as though we are just reaching into a grab bag of seizures medications and what we pull out is what we try next. I don't mean to sound all down about this because God has truly blessed us and we have seen miraculous healing in Dawson already. Its just that sometimes you cant help feeling like your just spinning your wheels. We are running as hard as we can we just cant seem to get anywhere fast.
We pray that God will give us answers to be able to do what is best for Dawson. Pray with us as we seek his knowledge and an answer to stopping these seizures
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I wish I had an easy answer to all of this for you and especially Dawson. I wish I could impart some wisdom that would be the light to bring sense to this journey. However, the only thing I can do is continue to pray,as I do every morning and every evening for Dawson. I hope one day we will all be enlightened on why we have traveled this road and we will all be able to say " Yes, this is why God has chosen this path for us."Until then we continue what we are doing. Loving these children, being their voice and asking God to strengthen our spirit.
Take care, Heather
I feel you on the grab bag of meds! I want to cry as I get all of our meds ready, it dosen't seen right. I pray for wisdom to know what is the right thing to do.
Okay...so first of all you guys are doing an amazing job staying positive & your love for Dawson is truly inspiring!
Next thing...I'm not sure if this is an option for you? Maybe you guys have already pursued this? But...not every neuro is that unavailable. I know of two neuros w/i our practice here that give parents their cell and/or home phone numbers. The first neuro we saw was brilliant in the brain...but VERY unavailable. In fact, he dx Trev & can pass us in the hosptial w/o a second glance. Has no clue who we are. Our current neuro is polar opposite (altho she's brilliant too). I have her email & her cell & she always calls me back if I have to leave a mssg w/her nurse.
Many parents move on to other neuros. It's important for you guys to be able to communicate openly & know that the doctor is fighting for Dawson alongside you.
I know this is turning into a book...sorry.
I've learned over the past few months that unfortunately there are TOO many times when we do have to wait...and have no answers.
But this might not be one of them for you guys...
...just a thought. :o)
...danielle
I know how you feel about the muscle biopsy business. It's one of the few things that we are yet to have done on Reagan. It seems pretty invasive and even if they find something...mitochondrial diseases are not usually what they consider "treatable" diseases, so what's the point of diagnosis?? I don't know. I guess peace of mind, knowing that your child does not have this or that, but then you have the guilt of why did I put my child through that for nothing?!?!? It's so difficult. We're kind of in the same boat. I know at some point we're going to have to make the same decision and I'm still not sure what it will be!!
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