We got all of Kellsey's test results back on Wednesday. See what happens when I vent about it?! ;) Unfortunately, everything was pretty backwards from what I expected.
Neurology called first and said that Kellsey's 24 hour EEG came back normal. In all honesty, this is not what I wanted to hear. I was sure she was having seizures with these episodes she was having. I had sent videos to a couple friends who have children with seizures and some of them were convinced as well. SO, since that is not the case, I asked, "What now?" They basically said they didn't know, but it could be some type of psychotic episode. So, I need to figure out where to go from here. They did prescribe her Clonidine to help her sleep and I picked that up today. Hopefully it will help.
Next I got an email from Endo. They said her TSH levels were down from 8.9 to 8.1 and she left it up to me on whether we start Kellsey on synthroid or not. I know nothing about thyroid so I said we could wait and just monitor her blood every 6 months. Now that I've talked to a few parents that either have thyroid issues themselves or have kids with thyroid issues, I'm thinking this is the wrong answer. :o/ SO, I'll be emailing her back today.
Lastly, we got a call from oncology. He confirmed that Kellsey is indeed anemic and to keep her on the iron supplement. Then he said because of her blood trends, he believes that she is in a pre-leukemic state. Because she has no blasts in her blood and her platelets are ok for right now, he recommends checking her blood every three months for now and when/if the time comes, he will do a bone marrow biopsy and we'll go from there.
Honestly, back in 2008 when we first fell in love with Kellsey's picture, the ONE thing that kept me dragging my feet on committing to her is "What if she gets Leukemia?". Frank assured me that the chances of that are very LOW and even if she DID, we've been there, done that and we could do it again. I'm sure we can. But I'm praying really, really hard that we don't actually have to. Cancer sucks.
Anyway, please just be praying for all these doctors in Kellsey's care. There are a lot of unknowns still, and I'm not really sure what the future holds... but we don't know that for any of us, do we? Please pray for wisdom and discernment for everyone involved in her care, including me. I am thankful for doctors who take charge and tell me what we're going to do next instead of asking me. Sometimes I just need a decision to be made, by the professionals who are trained to make it.
I'll keep you posted as I know more.
Friday, February 10, 2012
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19 comments:
When Abbie was 3 to 5 years old, her eyes would dilate and she would be non responsive. When she was 18 months they were pretty sure she had autism. At age 3, she only tested 5/10 point on the scale... you need 6 to be autistic. I know that autism was a possibility. Maybe that is the problem.
Praying for you and your family! I can't imagine all the unknowns, especially when the professionals don't know either, UGH!!! How frustrating! :( I'll be praying, praying, praying! :)
An 8.1 is still a pretty high TSH level. After my last baby, my thyroid died. Before they diagnosed me and I started Synthroid I had periods where I was forgetful and confused and spacey. I know that probably doesn't compare to her seizure like episodes but maybe the synthroid would help. Regardless, you are an awesome mother who goes way above and beyond for ALL your children. Just take it one day at a time. I love your blog.
{{{{HUGS}}}}
One thing to keep in mind is that the EEG is a very SMALL fraction of time. Even if seizure activity doesn't show up on the EEG, it doesn't mean she isn't having them. It just means for that VERY SMALL time frame, she didn't. The Neuro. needs to keep that in mind. My daughter has two types of seizures and on her 24 hour EEG, it was normal as well so I understand the "WHAT?!" feeling. Hang in there!
Have you send the videos to the Neuro. for evaluation? Have you talked with other people in her life that she is with to see if they notice anything?
Just in case Kellsey ever has to go on Thyroid med make sure it's not generic.. I have fought with getting my numbers right and whenever I get generic the numbers go up.. This was confirmed by my endo.. She said thyroid med's is the one that shouldn't have generic.. and I would really check it out. Thyroid problems mask alot of other problems.. It is the cause of alot of problems.. I'm hypo and the numbers shouldn't be any higher than 2-4 depending.. Hope all gets fixed and will be praying for her blood to be good to her..
I'm so sorry to hear about the waiting/panic/questioning cycle you all are in now too. We will keep you all in our prayers.
Im so sorry that the results were not what you wanted. I cannot remember if she has reflux or not but Sandifer Syndrome looks a lot like seizures but is a response to reflux. My son has it and we really thought he was having seizures at first. Praying that cancer stays away!
Praying, Praying, Praying!!! (((hugs)))
Definitely praying! :) Just keep trusting in Him to get you through!
I'm just curious, do children with Down Syndrome have a higher change of having leukemia? Just wondering and praying you don't go through that again with another precious child!
What does it mean to be "pre-leukemic"?
Zoey was born with TMD, I think you know that, and we checked her blood every 3 months up until the flip to AML. in all that time, I never heard the term "pre-leukemia", just the fact that since she was born with a transient form of leukemia, that her chance was higher of developing it. Make sure, and I know you know this, that you love and trust this new oncologist.
Maybe consult your people at Vandy and fax her results. I think that might reassure you, at least as far as the leukemia goes. And, I do know our children with DS, do have varied, out of the ordinary blood work and are totally fine. But trust me, I get your fear.
As for the rest, my experience with seizures and EEG's tells me that the elongated EEG, if there were seizure activity, it would have shown.
Also, lots of experience with Clonidine with Joe. so if you need some guidance there, let me know. It can be sedative. Overly so.
Prayers coming your way.
Praying! (((Hugs)))
You should look for more details in your daughter's thyroid because this can create a huge problem if her body doesn't produce the right amount of thyroid hormone.
praying....love you.
Prayers that Leukemia does not rear it's ugly head. That little girl has already been through so much, I can't imagine adding that to the mix. As well as what it would put you and the rest of the family through. :o(
Maybe ask the docs if you can get a 48 hr EEG for Kellsey. Sometimes the 24 hr ones won't show any seizure activity. My son's 24 hr one didn't, but the 48 hr did.
I'm so sorry the Endo is putting you in the position of making the decision of whether or not to put K on Synthroid. That's just ridiculous! You're her mommy, not a doctor! Sounds like you might want to check out a new Endo who will actually guide you in making a good decision instead of just dumping it all in your lap.
Hang in there! Praying for Kellsey's bloodwork to stay free of the big bad C.
Not happy when drs, the ones you're supposed to turn to for help, leave decisions like that up to the parents! I once had a dr ask me if I wanted him to put a cast on my daughter's broken leg! I kid you not! DUH!
These words are always so very comforting! Praying!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
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Well crap. That's not what we wanted! I would love to know more about pre leukemic and the sleeping medicine. We give Tommy melatonin but its not helping. Hang in there, that's a big diagnosis that's just not right for anyone!
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