Another issue...

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BabyBeauty

New member
So it has taken me awhile to post this. My husband and I noticed that Avery had a weird tic when she got excited. She would tilt her head back, straighten her arms, her eyes roll in the back of her head slightly, and her hands bent. So I wasn't as worried as my husband until he talked me into going into our ped. Our ped referred us to a neuro. We had the appt last week. We had to video tape the incidents.

After the neuro looked at the video he said he cannot rule out seizures. So here we are this morning scheduled to go in for an EEG to see if she has epilepsy.

I have been trying not to think about the possibility of something else to deal with on top of CF. But I am really scared that we are about to embark on another journey of new drs and new meds. Overall I am just mad. I am mad that God does this. After all the stress we have been through we are facing another issue. When does it stop? I have ulcerative colitis and it keeps flaring up due to stress. My dr is now going to put me on once a week shots! Sorry to rant, but I know everyone here understands stress!

So if you can say a little prayer for my girl to not have epilepsy....
 
B

BabyBeauty

New member
So it has taken me awhile to post this. My husband and I noticed that Avery had a weird tic when she got excited. She would tilt her head back, straighten her arms, her eyes roll in the back of her head slightly, and her hands bent. So I wasn't as worried as my husband until he talked me into going into our ped. Our ped referred us to a neuro. We had the appt last week. We had to video tape the incidents.

After the neuro looked at the video he said he cannot rule out seizures. So here we are this morning scheduled to go in for an EEG to see if she has epilepsy.

I have been trying not to think about the possibility of something else to deal with on top of CF. But I am really scared that we are about to embark on another journey of new drs and new meds. Overall I am just mad. I am mad that God does this. After all the stress we have been through we are facing another issue. When does it stop? I have ulcerative colitis and it keeps flaring up due to stress. My dr is now going to put me on once a week shots! Sorry to rant, but I know everyone here understands stress!

So if you can say a little prayer for my girl to not have epilepsy....
 
B

BabyBeauty

New member
So it has taken me awhile to post this. My husband and I noticed that Avery had a weird tic when she got excited. She would tilt her head back, straighten her arms, her eyes roll in the back of her head slightly, and her hands bent. So I wasn't as worried as my husband until he talked me into going into our ped. Our ped referred us to a neuro. We had the appt last week. We had to video tape the incidents.

After the neuro looked at the video he said he cannot rule out seizures. So here we are this morning scheduled to go in for an EEG to see if she has epilepsy.

I have been trying not to think about the possibility of something else to deal with on top of CF. But I am really scared that we are about to embark on another journey of new drs and new meds. Overall I am just mad. I am mad that God does this. After all the stress we have been through we are facing another issue. When does it stop? I have ulcerative colitis and it keeps flaring up due to stress. My dr is now going to put me on once a week shots! Sorry to rant, but I know everyone here understands stress!

So if you can say a little prayer for my girl to not have epilepsy....
 
B

BabyBeauty

New member
So it has taken me awhile to post this. My husband and I noticed that Avery had a weird tic when she got excited. She would tilt her head back, straighten her arms, her eyes roll in the back of her head slightly, and her hands bent. So I wasn't as worried as my husband until he talked me into going into our ped. Our ped referred us to a neuro. We had the appt last week. We had to video tape the incidents.

After the neuro looked at the video he said he cannot rule out seizures. So here we are this morning scheduled to go in for an EEG to see if she has epilepsy.

I have been trying not to think about the possibility of something else to deal with on top of CF. But I am really scared that we are about to embark on another journey of new drs and new meds. Overall I am just mad. I am mad that God does this. After all the stress we have been through we are facing another issue. When does it stop? I have ulcerative colitis and it keeps flaring up due to stress. My dr is now going to put me on once a week shots! Sorry to rant, but I know everyone here understands stress!

So if you can say a little prayer for my girl to not have epilepsy....
 
B

BabyBeauty

New member
So it has taken me awhile to post this. My husband and I noticed that Avery had a weird tic when she got excited. She would tilt her head back, straighten her arms, her eyes roll in the back of her head slightly, and her hands bent. So I wasn't as worried as my husband until he talked me into going into our ped. Our ped referred us to a neuro. We had the appt last week. We had to video tape the incidents.
<br />
<br />After the neuro looked at the video he said he cannot rule out seizures. So here we are this morning scheduled to go in for an EEG to see if she has epilepsy.
<br />
<br />I have been trying not to think about the possibility of something else to deal with on top of CF. But I am really scared that we are about to embark on another journey of new drs and new meds. Overall I am just mad. I am mad that God does this. After all the stress we have been through we are facing another issue. When does it stop? I have ulcerative colitis and it keeps flaring up due to stress. My dr is now going to put me on once a week shots! Sorry to rant, but I know everyone here understands stress!
<br />
<br />So if you can say a little prayer for my girl to not have epilepsy....
 
J

just1more

New member
Definately will say a prayer. We have an EEG next week on our son w/CF. His psych thinks he is having seizures that are related/causing many of the behavioral issues we are seeing.

My 1st thought was the same thing, I don't need more Drs & tests; I am already on a first-name basis with half the Dr's in Atlanta it feels like.

I hope your little one is ok!
 
J

just1more

New member
Definately will say a prayer. We have an EEG next week on our son w/CF. His psych thinks he is having seizures that are related/causing many of the behavioral issues we are seeing.

My 1st thought was the same thing, I don't need more Drs & tests; I am already on a first-name basis with half the Dr's in Atlanta it feels like.

I hope your little one is ok!
 
J

just1more

New member
Definately will say a prayer. We have an EEG next week on our son w/CF. His psych thinks he is having seizures that are related/causing many of the behavioral issues we are seeing.

My 1st thought was the same thing, I don't need more Drs & tests; I am already on a first-name basis with half the Dr's in Atlanta it feels like.

I hope your little one is ok!
 
J

just1more

New member
Definately will say a prayer. We have an EEG next week on our son w/CF. His psych thinks he is having seizures that are related/causing many of the behavioral issues we are seeing.

My 1st thought was the same thing, I don't need more Drs & tests; I am already on a first-name basis with half the Dr's in Atlanta it feels like.

I hope your little one is ok!
 
J

just1more

New member
Definately will say a prayer. We have an EEG next week on our son w/CF. His psych thinks he is having seizures that are related/causing many of the behavioral issues we are seeing.
<br />
<br />My 1st thought was the same thing, I don't need more Drs & tests; I am already on a first-name basis with half the Dr's in Atlanta it feels like.
<br />
<br />I hope your little one is ok!
 
L

Liza

New member
Hi, I know this is a difficult time for you. I have said a prayer for your little one. I will say one for you as well, that HE give you strength to get through whatever lies ahead. You are in my thoughts.
 
L

Liza

New member
Hi, I know this is a difficult time for you. I have said a prayer for your little one. I will say one for you as well, that HE give you strength to get through whatever lies ahead. You are in my thoughts.
 
L

Liza

New member
Hi, I know this is a difficult time for you. I have said a prayer for your little one. I will say one for you as well, that HE give you strength to get through whatever lies ahead. You are in my thoughts.
 
L

Liza

New member
Hi, I know this is a difficult time for you. I have said a prayer for your little one. I will say one for you as well, that HE give you strength to get through whatever lies ahead. You are in my thoughts.
 
L

Liza

New member
Hi, I know this is a difficult time for you. I have said a prayer for your little one. I will say one for you as well, that HE give you strength to get through whatever lies ahead. You are in my thoughts.
<br />
<br />
 
J

JazzysMom

New member
I will say a prayer that its something easily fixed.

Just to make you feel better (if I can) is that I had my first seizure about a year after my CF diagnosis.

I wasnt put on meds right away thinking it was a fluke, but 3 grand mal seizures later I was put on Phenobarbital & have been on it with NO problems since. That is 30 plus years........
 
J

JazzysMom

New member
I will say a prayer that its something easily fixed.

Just to make you feel better (if I can) is that I had my first seizure about a year after my CF diagnosis.

I wasnt put on meds right away thinking it was a fluke, but 3 grand mal seizures later I was put on Phenobarbital & have been on it with NO problems since. That is 30 plus years........
 
J

JazzysMom

New member
I will say a prayer that its something easily fixed.

Just to make you feel better (if I can) is that I had my first seizure about a year after my CF diagnosis.

I wasnt put on meds right away thinking it was a fluke, but 3 grand mal seizures later I was put on Phenobarbital & have been on it with NO problems since. That is 30 plus years........
 
J

JazzysMom

New member
I will say a prayer that its something easily fixed.

Just to make you feel better (if I can) is that I had my first seizure about a year after my CF diagnosis.

I wasnt put on meds right away thinking it was a fluke, but 3 grand mal seizures later I was put on Phenobarbital & have been on it with NO problems since. That is 30 plus years........
 
J

JazzysMom

New member
I will say a prayer that its something easily fixed.
<br />
<br />Just to make you feel better (if I can) is that I had my first seizure about a year after my CF diagnosis.
<br />
<br />I wasnt put on meds right away thinking it was a fluke, but 3 grand mal seizures later I was put on Phenobarbital & have been on it with NO problems since. That is 30 plus years........
 
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