EEG – Normal
Posted by mymaysa on August 19, 2009
Maysa’s tearful EEG came back normal. That’s the news the pediatric nurse shared with me today. It’s a good thing as we now know for certain that her “stress moves” are not seizures, however, we are still puzzled at what is triggering them.
She hasn’t had a real episode in the past few days. I just wish they could completely go away…
On a completely different and random note, here are some pictures of Maysa at the park:
Amy in Chico said
I’m glad to hear that Maysa’s EEG is normal! I am checking out your Maysa blog for the first time tonight. I am on the Plagiocephaly Yahoo! group too (just joined a couple weeks ago), but would really love the opportunity to talk to, not just email, with another mom about this issue. Any chance you would be available for a phone conversation? If so, please email me so we can exchange contact information privately. My daughter, Zia, is 8 months today and has mild (so we’ve been told) brachy and plagio. I’ve been agonizing over the decision about whether or not to pursue a helmet/band, though at the moment we’ve decided not to. We live in Chico, CA (north of Sacramento), and there are limited options about what is available, which is part of what is making this such a difficult decision. I very much hope to connect soon!
Natalie said
I just wanted to say thank you for the response. I also have been encouraged by your website and the other plagio websites you listed. I decided to make my blog public so hopefully I can encourage and/or give parents another story to relate to. Thank you for helping in a big way.
mymaysa said
Natalie,
I quickly glanced at your blog and I am going to get busy getting to know your precious little girl. Truly, I can’t wait! From the few pictures I was able to look at, she does have brachy for sure. I wonder what her measurements are. She so reminds me of Maysa too when she was 5 months or so, and just for the records, we did get her a helmet at 5.5 months of age, but it made things worse. It was a passive helmet from Eastern Cranial Affiliates and while she stayed in it for 3.5 months, both her plagio and brachy got worse…
Which STARband facility will you be going to? Have you checked on the experience of the orthotist that will be dealing with her? Also, keep in mind that brachy is harder to correct than plagio and usually takes longer, so be prepared for her to wear it for the entire 6 months that the band is good for. I know 6 months sounds like a long time, but it will fly by, especially if Lola hits some good growth spurts.
One more thing. I know you said that your blog was private at one point and I respect that, but would it be OK for me to add it to my blogroll? I would love to keep checking on her progress in the band. I know other people will find your experience with plagio/brachy useful as well.
Thanks,
Leila
mymaysa said
Hi Amy,
I’d be more than happy to connect with you. I will be sending you a private email so look for that.
Leila
Natalie said
Hey Leila,
Thank you for the kind message.
I have the sheet with Lola’s measurements, but to be honest I do not know what they mean. I’ll be more than happy to share them and I will probably post them on my blog soon, which is completely fine adding to your list. More stories the better in my opinion.
They told me to expect her to be in the helmet for 3 months, but you think it will be longer? I am hoping she will be in it by the time she is 5 months old. Fingers crossed! You are right- 6 months seems long, but I am sure it will fly by!
The STARband center is in Addison, Texas. Not too far from where we live. The orthotist seems to be great and well experienced. I met with him at the hospital. If insurance does not end up accepting this I would love to talk with you over the phone about choosing between CT and STARband. I hope insurance goes through soon, because the anticipation is stressful.
Well hopefully my blog can help others.
Thanks for all you do. Your blog is fabulous.
Natalie
Natalie said
Hey Leila,
Thought I would see if you wouldn’t mind chatting with me about the decision between CT and STARband. I need to tell the nurse practitioner which company on Monday, but was torn. I thought your comparison was helpful, but still having a hard time. I would be glad to exchange numbers with you through e-mail. I think you will receive my e-mail when I submit this comment??
Thanks,
Natalie
mymaysa said
Hi Natalie,
There is a lot of info on the report, but the numbers that matter the most are:
- The Cephalic Ratio (also referred to sometimes as Cephalic Index) which you want to see go down after she starts treatment (hopefully into the mid 80% if not lower)
- The difference between Oblique Diagonal 1 and Oblique Diagonal 2 (I don’t think that your daughter has significant plagio-if at all, but you want that number to be as close to 0 mm as possible)
- The ear offset if any (that number if above 0mm will tell you whether or not your daughter has ear asymmetry).
It’s a good thing that you feel comfortable with the STARband location and orthotist you will be dealing with. It is very important. Also, her getting out of the band relies mainly on her growth. There is another number on her report that shows her head circumference. As long as that number goes up, her head should be reshaping fine.
Over a year ago, now, I was so eager to see Maysa start treatment because that meant that she would be out of it sooner (3 to 3.5 months, I was told). I chose the wrong helmet and despite the fact that she grew, her headshape got worse. Starting at 5 months in the right band will definitely bring good if not great results for Lola but at the end, just like it is at the beginning, it will be up to you whether or not you are happy or want even better correction. Some parents are 100% happy, others are happy with “good enough”, and others want to get more out of the band or even a second band. Some other parents want more correction but can’t get it from the band because of the age of their child. I just want you to be aware of that and not feel so discouraged if after three months her head is still not looking quite the way you were expecting… Just remember that I’ll be here to support you, no matter what!
Insurance is stressfull and maybe you need to call to get a faster answer. I know I had to bug mine to get my second DOC band covered. However, if they decide not to cover it, I’d be more than happy to get on the phone with you and discuss things further.
I’ve added your blog to my list. Thanks! Lola is absolutely adorable!
Leila
mymaysa said
I just sent you an email…
Natalie said
I am so glad you asked about the DSi! I called back and they worked me in that day for one so she should have her band by next Wednesday! Thanks for helping us speed up the process! I saw you added my blog! Ya! Hopefully people can find it helpful!
mymaysa said
I am so glad that CT was able to fit you in for the DSi on the same day as Lola’s initial evaluation. It is awesome that she will be getting it next Wednesday!
kari said
I have some questions for you regarding a helmet. Will you email me at kari700@hotmail.com please?
Thanks