Zoe update (2nd opinion etc.)

Zoe update (2nd opinion etc.)

Joined: January 27th, 2003, 11:09 pm

August 4th, 2011, 12:04 am #1

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
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Joined: August 30th, 2006, 9:39 pm

August 4th, 2011, 12:18 am #2

/nt
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Joined: June 20th, 2006, 2:07 am

August 4th, 2011, 12:40 am #3

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
I am so happy for your Z!!!!

No migraines and let's keep all our collective fingers crossed that it's dietary and that when you wean her off that drug she will remain migraine-free.

huge hugs!
jm


me:42, DH 43
FSH 26
DS: born by c-sec Apr15'03, 9lbs5oz 41wks gest. (after 4 years of ttc, starting in 1998)
DD born by c-sec Oct 13 2007, 8lbs13oz 39wk gest. (after just under 3 years of ttc)
~~DS was conceived naturally the cycle following a cancelled DE IVF, using my good friend's eggs. She was on the verge of hyperstimming.
~~DD's nat conception I attribute to using OPKs like a crazy nut, eating grapefruit daily and using preseed. also 5 cycles of TCM ending 2 cycles before that lucky cycle.
~~~~~~~~~~~~~~~~~~~~~~
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Joined: June 24th, 2005, 12:12 am

August 4th, 2011, 1:28 am #4

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
thanks for the update and i am so glad that it is such good news.



me:45, smc (single mom by choice)
FSH: 16
Dd: Conceived when I was 42 after 2 years ttc. Conceived on 6th IVF cycle after 2 bfn's and 3 m/cs.

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me:smc (single mom by choice)
FSH: 16
Dd: Conceived when I was 42 after 2 years ttc. Conceived on 6th IVF cycle after 2 bfn's and 3 m/cs.

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Joined: September 4th, 2004, 1:08 am

August 4th, 2011, 1:43 am #5

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
So so happy to read this MM. What a relief to have an answer and a plan. I hope she continues to feel well and remains migraine free. Does the neuro think she will outgrow the migraines?
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Joined: February 10th, 2009, 9:24 pm

August 4th, 2011, 2:33 am #6

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
Whenever one's child gets good news, it just doesn't get better than this! I'm thrilled for you and Z!!

HOpe those migraines stay away!!

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Joined: January 1st, 1970, 12:00 am

August 4th, 2011, 2:53 am #7

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
But that's better than seizures anyday.

Good luck with the elavil. I think I used to take it in tiny doses for headaches, but not migraines.




Keiki's Makuahine (Keiki's Mom) 50, dh 50
Keiki: b. 2002 after 3 months bedrest
Natural conception following ZIFT/chem. pg

Olivia: b. 1999 d. 1999
28-week preemie, ptl cause unknown
Natural conception after 1 mc

ttc since 1998
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wcl
Joined: September 19th, 2006, 11:17 am

August 4th, 2011, 10:20 am #8

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
I'm very glad to hear this good news about your DD, and hope you're all on the way to putting the bad stuff behind. Wishing her well!

wcl
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Joined: March 12th, 2008, 1:22 pm

August 4th, 2011, 11:51 am #9

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
...you must feel a million times lighter. Carrying the weight of that worry had to be debilitating in so many ways.

I'm so thankful for this news, and I do hope Z's doctors can figure out just the right thing to replace Topamax.

Big, big hugs to you and Z...I'm so grateful for your good news. Here is to Z's good (and ever-improving) health!

xoxox,
k.
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Joined: July 7th, 2009, 1:19 pm

August 4th, 2011, 1:19 pm #10

I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...

The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).

Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.

Okay, sorry for the rambling post, and thanks, as always, for caring.

xoxox
MM
So happy to hear this news! My Aunt has had migraines all her life so I know how that is. She uses a med that is an easy injection and she is cured almost right away. The key is to know the trigger so you can catch the migraine early.

HUGS!
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