Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Raising Special Needs Kids Raising Special Needs Kids

Neruo and GI appt updates

Posted by on Oct. 3, 2012 at 6:03 PM
  • 14 Replies

This may be long but I hope I can condense it enough.


Yesterday we saw neuro. We got a new dr beause our last one retired :( but this new one is really great. Ty is now having absence seizures and teh dr believes more seizures in his sleep as well. Ty is 4.5 and still taking 4-5hr naps daily which isn't normal for this age so the neuro ordered a sleep study so they can look for apnea, unwitnessed seizures, or anything else they may be able to find that could be disrupting his sleep at night. He is upping his keppra dosage hoping that will stop the seizures, if not we will try breaking the dose of his keppra from 2x daily to 3x daily to try and combat his motility issues. He thinks those weird vertigo episodes we had in June were a result of his motility issues and how his body absorbed his previous seizure med, that his body would end up absorbing a larg amount suddenly causing him to become toxic and causing those issues. He also thinks that could be why it wasn't working all that well and we got switched to this med. However this med is helping so that is fine to stay on it. He also saw Ty has some left sided weakness. Not really what I was expecting and sad we have to hav emore testing and things may not be as good as I thought they were.


Today we saw our GI. Good news: we are weaning his reflux meds, yay! And we lowered his senna dosage :)
Not so good news: we have run every test available in our state and have to get testing outside of teh state. They want him to get manometry testing and prefer we go to Colombus or Boston for it but will see what insurance approves. So we need prayers insurance will approve it and help with transportation too, we live in AZ so both places are far away! She started on Ty on a new med called Amitiza and it comes in only a pill so they had us get a pill cup and it sits the pill on a shelf in the cup and then as you drink you drink the pill.Ty took it on his first try! Then I got him to take his 3 creon pills too! It was awesome!!! Next week we are goign to have a colonic marker study again just to check on it and see if anything has changed and maybe it can help give us a little more idea of where the issue is.

They are pushing genetics to get us in sooner and get testing going so they can get an underlying diagnosis found/made. Right now our appt is set for 12/12/12 (uhm, freaky, just realized that) but after that appt we have to wait for them to fight insurance on the tests needed which is a longer wait then add on the time it takes for the test turn around, we are looking possibly at 6 months from now before we get any remote answers! Oy!

by on Oct. 3, 2012 at 6:03 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
lifeisajoy
by on Oct. 3, 2012 at 6:59 PM
1 mom liked this

Woo!! Alot going on Chelle!! Thanks for the update!

mandee1503
by Amanda on Oct. 3, 2012 at 7:25 PM

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.

Mipsy
by Chelle on Oct. 3, 2012 at 7:47 PM

I have heard that Stanford (I thik that is the place in Northern CA) has the testing available for what we need, but our GI prefers and knows people in the Colombus and Boston. But I do have one friend who goes to the same clinic as us who is looking into going to Stanford for it. My sil lives in San Diego and they wanted the same testing for her daughter and they had to go up to northern cali for it, so the lower end doesn't have it available. It's newer so not a lot of places have it.

Quoting mandee1503:

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.


mandee1503
by Amanda on Oct. 3, 2012 at 8:34 PM
1 mom liked this

Stanford is a very good hospital.

Quoting Mipsy:

I have heard that Stanford (I thik that is the place in Northern CA) has the testing available for what we need, but our GI prefers and knows people in the Colombus and Boston. But I do have one friend who goes to the same clinic as us who is looking into going to Stanford for it. My sil lives in San Diego and they wanted the same testing for her daughter and they had to go up to northern cali for it, so the lower end doesn't have it available. It's newer so not a lot of places have it.

Quoting mandee1503:

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.



Mipsy
by Chelle on Oct. 3, 2012 at 8:37 PM
I'm kinda hoping insurance will want there since its closer to us. I will cry I think if we have to fly to Boston :'(

Quoting mandee1503:

Stanford is a very good hospital.

Quoting Mipsy:

I have heard that Stanford (I thik that is the place in Northern CA) has the testing available for what we need, but our GI prefers and knows people in the Colombus and Boston. But I do have one friend who goes to the same clinic as us who is looking into going to Stanford for it. My sil lives in San Diego and they wanted the same testing for her daughter and they had to go up to northern cali for it, so the lower end doesn't have it available. It's newer so not a lot of places have it.

Quoting mandee1503:

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.



Posted on CafeMom Mobile
mandee1503
by Amanda on Oct. 3, 2012 at 8:44 PM

Yeah seriously! That's ridiculous! Maybe next time mention Stanford as well? So it's an option in case the insurance denies the east coast.

Quoting Mipsy:

I'm kinda hoping insurance will want there since its closer to us. I will cry I think if we have to fly to Boston :'(

Quoting mandee1503:

Stanford is a very good hospital.

Quoting Mipsy:

I have heard that Stanford (I thik that is the place in Northern CA) has the testing available for what we need, but our GI prefers and knows people in the Colombus and Boston. But I do have one friend who goes to the same clinic as us who is looking into going to Stanford for it. My sil lives in San Diego and they wanted the same testing for her daughter and they had to go up to northern cali for it, so the lower end doesn't have it available. It's newer so not a lot of places have it.

Quoting mandee1503:

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.




grammajuie
by Member on Oct. 4, 2012 at 5:39 PM
1 mom liked this

Columbus is great.  I know several people that could not get a diagnosis until they finally got to Columbus.  The cleveland Clinic is the name of the hospital they each went to.  And, it's closer to Arizona, l0l.  Good luck.  Ty sounds like a real little trouper.

Mipsy
by Chelle on Oct. 4, 2012 at 10:46 PM
Yeah, she knows those 2 places well which is why she wants us there but if insurance doesn't want those 2 I'll bring it up and she will call them and see what experience they have before allowing us to go. But I found a couple foundations that fly people for free to different places in the US (and internationally) for tests and treatments, so if insurance won't pay I'll contact them. And I'm sure our gi can help find foundations to help us too.

Quoting mandee1503:

Yeah seriously! That's ridiculous! Maybe next time mention Stanford as well? So it's an option in case the insurance denies the east coast.

Quoting Mipsy:

I'm kinda hoping insurance will want there since its closer to us. I will cry I think if we have to fly to Boston :'(



Quoting mandee1503:

Stanford is a very good hospital.

Quoting Mipsy:

I have heard that Stanford (I thik that is the place in Northern CA) has the testing available for what we need, but our GI prefers and knows people in the Colombus and Boston. But I do have one friend who goes to the same clinic as us who is looking into going to Stanford for it. My sil lives in San Diego and they wanted the same testing for her daughter and they had to go up to northern cali for it, so the lower end doesn't have it available. It's newer so not a lot of places have it.

Quoting mandee1503:

Thanks for the update. There wasn't anything in CA that you can go see for testing? Like in LA or the Bay area? It would be so much closer.




Posted on CafeMom Mobile
darbyakeep45
by Darby on Oct. 5, 2012 at 6:18 AM
1 mom liked this

Wow...you always have SO much going on with Ty!  Hugs mama and thanks for the update!

CameronsMommy23
by on Oct. 5, 2012 at 9:04 AM
Lots of tests and things! I hope he can go to the hospital that's closer hope to you! Hugs!!
Posted on CafeMom Mobile
Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)