Did you pick up on the sarcasm? She actually LOVES the doctor's office. She always makes fast friends with everyone in the waiting room, and thoroughly enjoys kicking herself silly on the paper-bed.
I felt like this was a very successful meeting. We discussed lots of things and I'm hopeful about going in a positive direction. My issue is this: her seizures are controlled with medication, she is mentally bright, yet physically she is stagnant - WHY? What am I doing wrong? What are we missing? I just have this nagging feeling that there is something out there - an answer - that is going to make us look back on the first years of her life with 20/20 vision. I don't expect a full recovery, but I do expect progress and answers and feel in my heart that there is something more we can do. I won't quit until that nagging feeling goes away.
So here are the latest attempts to figure it all out:
Get all the test results. Hello. It has been months and I have yet to find out any information about her sleep study, Brain MRI, Spinal MRI, EMG, Spinal Tap, and mitochondrial tests. I have called innumerable times and received one return phone call - while we were 4-wheeling at the cabin. Chloe's pediatrician is going to order all the results be sent to his office and go over them with me there. (Giant sigh of relief). Hopefully that will happen within the next week or two. He said a day or two, but I know what that really means and it means a week or two.
Allergy tests. This is something I've been tossing around in my brain for awhile. She had obvious reactions to most baby formulas and a severe reaction to cashews. She also has congestion without any other symptoms almost every single night. I don't know, maybe she's allergic to something. She hardly eats anything, but sometimes allergies can be very debilitating if not handled properly. Maybe that's it. Tomorrow we're going to the lab to draw blood and find the answers to that question.
Anat Baniel Method (ABM). I've heard a lot about this lately. From what I understand, it is a different approach to tradition physical and occupation therapies. The idea is that they focus on what the child CAN do rather than what they CAN'T do. Makes sense to me, but I feel like we already do that. I, however, am not an expert on ABM and there is an ABM expert in Salt Lake that I have emailed and will call tomorrow to begin treatment. We'll see how it goes!
Egg Powder. I've been to a holistic doctor and he recommends an egg powder. I don't remember the exact name, but I think it might be i26 hyperimmune egg powder. I was told about this awhile ago, but wanted to look into it before I jumped on board. I chatted with the pediatrician about it today, though, and he said he has seen great success with this in several of his patients and no negative side effects. It's pretty reasonable and worth trying to see if we might be one of the success stories. I'll probably pick it up tomorrow.
Cranio-Sacral Therapy. This is basically chiropractic treatment. I know a couple chiropractors that I would trust with my precious girl. I think I'm going to wait on this, though, and see how the ABM therapy goes.
So that's the latest. I, of course, will keep you updated as I am updated, which might be never. LOL. No really, don't hold your breath!
13 comments:
Hello. I came to your blog from another a while back and now follow Chloe - what a cutie she is!- since my daughter Emma is around the same age.
I can't believe you haven't heard back from all the tests and I'm sorry that Chloe isn't make as much physical progress as expected. I have found that it is a trial and error approach since each child is different. I've recently shaken up Emma's therapies and have seen a lot of progress from the changes.
I have a blog and we recently started craniosacral therapy with Emma. I have a post on it that you might want to read. We've done 2 sessions so far and have another 3 scheduled (basically, we can afford to do it about every 3 weeks) in the coming weeks. I've noticed a change in Emma with the craniosacral.
For our PT, we use a therapist that uses the NDT method. I'm not sure about the ABM method, but I know a lot of people in a chat room I'm in rave about it. Emma is making great progress with the NDT PT method, so we'll stick with that. Before NDT she was getting PT in the house and she wasn't really making much progress.
Another thing I want to mention is that we've consulted with a nutritionist and now Emma is taking some Nordic Naturals DHA and a vitamin specially formulated for brain development (from mail-order). We also changed her drink from Pediasure to an almond milk + coconut milk + powder (mail-order again) mixture. The result is that we've seen a big increase in Emma's eating outside of drinking. I think her reflux was so bad that she didn't find eating desirable and moving to the new drink probably helped with that. I have a post on the nutrition, too, that you might want to read.
I think Emma's recent physical gains are a result of all the changes we've made and not just time. The step-change in her functioning is too high and we didn't see it before we made the changes. There has been a huge increase in Emma's fine and gross motor skills and she is getting more confident in her ability and pushing herself to the next level.
I hope you don't find my comment too long, but thought that you might want to know about some of the recent changes in Emma given that she is around the same age as Chole and has a similar physical function.
Kristina
Holy moly woman! You sound like me. Seriously, always trying to find a better way, something to help better Logan's quality of life. He deserves it and so much more....
A few things... I hate to say it, but the whole nightly congestion thingy has been going on with Logan since... well... forever. Not implying you need to run and get it done but having his tonsils and adenoids removed helped him out immensely. Granted he still has some congestion, a wee bit of snoring, and is often gaggy in the mornings but it's nothing in comparison to how bad it was. Doc had told me that because of his underlying diagnosis and him laying down so much, this problem is near inevitable. Sucks, I know.
Egg powder for real? I've never heard of that one. If you decide to pick that, please let me know how that goes. I'm beyond interested to learn more about it.
Now, for the biggest.... ABM. My goodness, what an eye opener. It makes so much sense that I can't believe I didn't jump on board sooner. For real, this stuff is amazing. Logan had is very first session today. I don't even know how to explain it. I can't find the right words!!! Right now we are working with a certified practitioner in Grand Rapids. She told me about a mastery training on October 8 and 9. They are offering two free sessions for kiddos ages 3-6 I think it is. Then you are able to schedule sessions with a senior practitioner. Logan and I are going. We'll be in San Rafael from Oct 2-10. Would love for you to join us!!! You can even share our room. Logan would love to meet is girlfriend face to face! ;) ;) Let me know if you want more 411.
Funny you mention cranio-sacral. That is third on my list. First ABM, second Euro-Peds, third cranio. I'm so interested to learn more about this process. But first things first. Plus, with what I've already learned, ABM is the way to go. Get the brain rewired so they know how to use their bodies with intent. Gees oh petes... somebody shut me up!
Girl, I've MISSED you something fierce.
Tara--you are doing such great work for Chloe. Did I tell you that Josh took your example of being an advocate for Chloe to heart and used it to push for answers for a couple whose newborn was brought into the ER? Anyway, you inspire more than you know.
It sounds like you've got a good doc and he'll do what he can to make sure you guys are taken care of. That's great!!
BTW, it was Fancy we rocked to in the dorm. I think of that almost everytime I hear that song!! :)
Egg Powder? Hmmm. I have not heard of that either. Very interesting. I am glad the app. went well and am waiting to hear the results of everything.
You are on top of this as best you can be!
Good luck with everything!! I know you won't give up until you have the answers... you don't quit!!! I'll keep you in my thoughts and prayers! Love ya!
You are in my prayers..the answers will come. Good luck.
I hope you and the pedi can go over all those test results soon. So glad your beautiful little girl enjoys her doctor visits! :)
Wow, I know other parents who just blindly accept what doctors say and don't proactively try and help their childe. You. Are. Amazing!
Tara that is so good you are looking into everything for Chloe!! I really have tried to do the same and I think it really hit me when Tucker was 2. I started to feel the same is there more out there I am not aware of, am I doing all I can? We have been to a lot of different people and have had so many suggestions!! I have tried so many things but mostly I have rubbed him down with Young Living Essential Oils to keep him loose. He get contractures all the time because he is so tight from some things working and some not. It has helped but you for sure are doing right by keeping an open mind and to try different things!!!
What a blessing you are to her and you are amazing, so glad I met you!! Keep it up, something will turn up that you will feel good about!!
Whatever is ailing her doesn't affect her mind. I think that is a blessing, although it might be frustrating to her. Although, it might also not be since she doesn't know any different.
I hope that you find the answers that you are looking for.
Chloe will teach everyone around her many wonderful lessons that no one else can teach in the way she can. She is a blessing.
wow, tara. you have been busy and your house is so cute, hip, and cozy all at once! i miss you guys. chloe is so beautiful with her big huge eyes and huge smile. it's no wonder you don't give up on her physical progression. you are doing such a great job raising such a sweet and beautiful girl. i think, no i know that you are an amazing and talented person and i'm so happy to call you my friend even if i never see you. but we need to fix that and we WILL!!
I was thinking about the congestion... does Chloe take any dairy? My son had the night congestion, plus day congestion and coughing. His regular pediatrician was sure that it was a virus and there wasn't anything they could do. After 8 weeks of it (and this wasn't the first time he'd had it) I took him to a Naturopath, who suggested we take him off dairy. Voila! Problem gone, no recurrence so far for 6 months. He doesn't have any weight or growth concerns, so I didn't have to combine his non-dairy milks with anything. He eats goat milk yogurt and takes a vitamin supplement.
Anyway, you are doing so well to be pro-active! You have to follow your instincts until you're satisfied.
I don't have any advice except to say the dairy issue is worth checking out. My daughter is 9 and has been having stomach aches for a long, long time. No one knows why. We are trying to eliminate dairy, and I have a feeling it may help.
I've been so busy this summer, so I haven't stopped by much. I missed Chloe's smile of sunshine:)
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