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  #1  
May 4th, 2009, 04:38 PM
~Coley125~'s Avatar Mega Super Mommy
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Location: idaho
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Hi,

I haven't been on in awhile but I wanted to pop in with a brief update.

Kenzie had a bunch of testing done about a week and a half ago. She had an LP along with a bunch more blood work done. I've gotten most of the results back and almost everything is normal. Her dr said that the LP showed elevated CSF the high level of normal is 45 and hers was at 105. Also her lactic acid was high at 3.1 normal is 2. I have no idea what any of this means. She said she isn't really sure how to interpret it either since the "common/known" conditions that have those things in common have already been ruled out.

I am stilll waiting on a call from her neuro to see if he can help interpret these for us...Im going to wait another day or so and then call if I haven't heard from them.

Any of you have any experience/insight that might help??

Everything else is still the same with her, no changes. We are still doing therepy 3xweek and she is now on the list for developmental therepy as well. I noticed some of you mentioned that your LO are getting feeding therepy...can anyone tell me what that entails?
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  #2  
May 4th, 2009, 07:24 PM
stacyp's Avatar Mommy to Andrew & Luke
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Location: OHIO
Posts: 17,229
I hope you get some answers soon. Thanks for updating!
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  #3  
May 4th, 2009, 08:04 PM
iamkc's Avatar Platinum Supermommy
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Hm...well, I'm glad that the results came back mostly normal. Is there a possibility that the docs could revisit some of the things that they've ruled out? It happens all the time that impossibilities become possibilities. I hope that it's something benign. Off the top of my head, I can't think of anything in particular with those results. I can try to search a little later, though.

Feeding therapy entails different things for different kids. Milo's therapy is mostly for gross motor right now, but is supposed to be for feeding, too. He's just had such a long way to come with the gross motor stuff, and since he has a g-tube, there's no real hurry to get him to eat. I've seen it with lots of other kids, though. They'll assess what your child does right now, where she should be at her age, figure out how she eats (is there a texture, taste, aversion issue, etc.), and just do little by little. Sometimes it's just about stimulating her mouth-they have little finger brushes, special spoons, all sorts of things that they'll try to see what she responds to. They'll try positioning, etc. They'll really just work so hard with Kenzie to see how she eats best, then work to getting her a little more mainstream. It's painless. It's even enjoyable for many kids!

Good luck! I hope that you start getting answers soon!
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  #4  
May 5th, 2009, 12:18 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
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Sorry I don't know about how to interpret those results, but I am glad things looked good overall.

For Carter, the reason we started feeding therapy was to work on his gag reflex, if something hits his throat the wrong way, or he doesn't like something he throws up, it's super sensitive. Once we started therapy we discovered that he has really low muscle tone in his mouth and tongue so we are working on strengthening those areas as well as teaching him how to move his tongue to shift the food side to side, things like that. Honestly for me it's one of the toughest therapies, it breaks my heart to push him and cause him to throw up, but at the same time I want him to progress in this area. Feeding therapy is typically done by a speech therapist or occupation therapist with additional training in feeding.

Good luck.
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  #5  
May 5th, 2009, 02:23 PM
kittycat's Avatar Platinum Supermommy
Join Date: Jul 2004
Location: Chicago, IL (W Burbs)
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Quote:
Originally Posted by ~Coley125~ View Post
Hi,

I haven't been on in awhile but I wanted to pop in with a brief update.

Kenzie had a bunch of testing done about a week and a half ago. She had an LP along with a bunch more blood work done. I've gotten most of the results back and almost everything is normal. Her dr said that the LP showed elevated CSF the high level of normal is 45 and hers was at 105. Also her lactic acid was high at 3.1 normal is 2. I have no idea what any of this means. She said she isn't really sure how to interpret it either since the "common/known" conditions that have those things in common have already been ruled out.

I am stilll waiting on a call from her neuro to see if he can help interpret these for us...Im going to wait another day or so and then call if I haven't heard from them.

Any of you have any experience/insight that might help??

Everything else is still the same with her, no changes. We are still doing therepy 3xweek and she is now on the list for developmental therepy as well. I noticed some of you mentioned that your LO are getting feeding therepy...can anyone tell me what that entails?
It really depends on the severity, and whether it's physical, psychological or a combination of both. For kyle it's a combination of both. He developed an aversion due to throwing up, but was uncoordinated and health issues that caused limitations to begin with. He has ataxic CP/low-tone, so getting the muscles in his mouth to work properly is difficult. Years of not eating, has also caused him to stop swallowing. I would suggest if your child takes a paci, to not do anything to break that link of you're having feeding difficulties. That helps maintain the suck/swallow coordination and strength (kyle's muscles have atrophied, which only makes it harder).

At age 5, he's just begun taking his first drinks since he was 8 or 9mo. It's taken a lot of effort. His pschological barrier was so strong that he threw up at the site of a spoon. Now he tries putting them in his mouth. It's not just been a feeding therapy effort, but in coordination with occupational therapy. We see the two back to back on Wednesdays.

OT will do the rub down/massage excersises and work her way from the outside in (finger tips to shoulders to cheek, then mouth). It took us months, even years to get this point, but Kyle now is trying to brush his teeth. Then his Feeding/Speech therapist takes over from there, and introduces foods. He expresses satisfaction in the flavor of juice, and has stopped gagging at the site of food that has a strong odor (like bananas or strawberries). Kyle is motivated most by copying what other children in pictures do. So she has a stack of photos of her own children eating certain foods, drinking, etc that she shares with Kyle, and he mimics those behaviors in front of a mirror.

We're a fairly extreme case, so I don't know if it helps or not. When he was little, they tried doing things that IAMKC mentioned. They just didn't work for him. Once we found the right combination and right therapy team - the slow process of recovery began. We're still a long way off, but worlds closer than we were even a month ago.
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Last edited by kittycat; May 5th, 2009 at 02:25 PM.
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