My daughter has recently been put on Methotrexate. Of course Folic acid was added on a daily basis.(for unknown autoimmune disorder)

Before starting this I asked my daughters Rheumy if it would effect her seizure meds or cause seizures. He said the methotrexate would not lower her threshold for seizures.

When we got the meds, I noticed that the folic acid leaflet said if you had a seizure disorder then closer monitoring may be needed.

She started the methotrexate the Monday before last. So she's had 2 doses. She takes the folic acid daily.

I took her to ENT today because she seemed to have a sinus infection.
ENT gave her an antibiotic and musicnex D.

She said on the way home her sinus' hurt. But basically she felt fine today.
After we got home she took a nap. She was sleeping hard. She slept for about 4 hours.
I had walked outside. My son came and got me. My daughter was having a seizure.

She hasn't had a seizure in 3 yrs. Maybe longer. It's been so long, I cannot remember exactly when the last one was.

Now I'm worried. I'm afraid to give her anything tonight except her seizure meds. The only meds she's suppose to take tonight are the seizure meds and the antibiotic. Her head is hurting and has been since the seizure. She's light sensitive. She wants me to give her something for her head, but I'm afraid too.

I'm at a loss here. We were hoping the methotrexate would be the thing to keep her from flaring. Now I'm not so sure I want her on it with the folic acid.

I am calling the seizure doc first in the morning and see what he has to say. Then calling the Rheumy.

Not exactly sure what to do at this point.

Just worried.
DAY

Perhaps you should take her to the emergency room. Pain in the head suggests it might be more than the seizure aftereffects. My grandson (12 years old) had a seizure and we discovered he had a cluster of veins in his brain that had ruptured. He then had a stroke. I really think emergency care might be warranted. Do you have a blood pressure cuff? This stroke left my grandson paralyzed on one side of his body. After 2 years of intensive PT he still has no use of his left arm or hand.

Best wishes,
Billye

Well, I'm getting no where fast trying to figure this out.

Thanks for the reply Billye.

My daughter had another seizure around 2am. I stayed up all night long watching her. At 8:30am, I called her seizure specialist. I got the standard "I'll give the note to the nurse, she will call you back"
I explained that this was out of the ordinary and I need to know something now.
Another seizure around noon.

Nurse calls me back after lunch and tells me the neuro said it was probably break through seizures due to the sinus infection. (yeah right)If I could have spoken with the doctor I doubt that would have been his answer.

I had also called the Rheumy doc that rx'd the methotrexate. Of course he's on vacation this week. His nurse would call me back.

She did call back and said she thought it was probably one of the meds.
She explained that the doc was on vacation but she would be calling him and either she or he would call me back.

She suggested if she has any more seizures to go ahead and take her to the ER.

I waited till 4:40pm and called back. Got the receptionist who wouldn't check with the nurse to see if she had heard anything from the doc. Just gave me the standard spill that she would call back when she heard from the doc.

Well, now It's 8:21pm and I still don't know anymore than I did yesterday.

Holly(my daughter) her head hurts. Migraine. I'm afraid to give her anything because it will just lower her threshold more. If I take her to the ER, they wont do anything expect tell me to get with her specialist in the morning.
Then they will want to give her a shot for her head. Which would make her head quit hurting, but would lower her seizure threshold more.

I guess I will be up all night again tonight watching her. I try to sleep, but every noise I jump up thinking it's her.
I'll call again to the Rheumy's office tomorrow. If they cannot give me an answer, I'll see if there is someone I could take her too.

I cannot believe her seizure doc just blew this off as the sinus infection.

I'll call the ENT then. See what he as to say.

After that, I have no clue.

I've held off on giving her any more of these new meds today. Not sure which is causing this. Whatever it is, I don't want her to have anymore.

I'm tired, Cranky and getting a migraine myself.

DAY

It's been 4 days since your post, what's happening with Holly???

What did any of the docs say?

How are YOU doing?

You know that I spent a year on MTX w/folic acid along with Betaseron and was sick the entire time I was on it but never had any seizures. I don't have a history of them. I do however have a history of migraines. I had many sinus infections and remember horrendous headaches.

I hope Holly is ok.

I wasn't able to post. We were in the hospital. I didn't think to have my husband post for me.

Here is what happened.

The next morning the Rheumy's office said to come in to get blood work done and the doc wanted a 4 vessel angiogram scheduled. I had no clue what this would involve, but we went in to do the blood and schedule anyway.

The angiogram is like the one's you would have for your heart, but it goes up into the neck to see if you have good blood flow.

Angiogram was scheduled for 2pm the next day.

We go. They take her back. Telling us it will take an hour.
1 1/2 hours goes by and we are getting a bit jumpy.
Finally a nurse comes out and tells us she had a seizure while they were doing the procedure and they wanted us to come back into the procedure room and that the radiologist needed to talk with us.

We go back. Everyone is running around. My daughter is awake, which is a shock. They usually have to knocked out. Versaid(sp) doesn't always knock my daughter completely out.

They still have the images up on the screen. I notice immediately that there is no blood flow to one side. DH tells me to just chill and see what the Radiologist has to say.

Radiologist comes in and tells us that It's bad. He says it's Very Very abnormal. He wants us to visit with Holly for a bit, then he will bring us back to talk.

Ok, we are standing there and there is a ton of people viewing the scan in the back.
Finally about 30 minutes later they take us back to look at the films with the radiologist.
He explains that she has a Carotid dissection. He shows us where her right side has blood flow. Shows us where the left doesn't, but the right side is helping to feed the left side.

He wants her doc there NOW. I explained that her doc was on vacation and had ordered the tests over the phone.
He said we need a doc now, preferrably a neuro.

I told them to call her seizure doc. They did, but he didn't feel comfortable with this. He would get a doc that would more help with this.

They tell us she cannot leave the hospital and will be moved to ICU.
(Ok, if we were scared before, we were petrified now)

I asked several times if she was going to die. The answer was always "The neuro will be waiting for you in ICU, he will talk with you"

She had to go back into the holding for outpatient procedures while they got her a bed in ICU. Everyone that came in would say "YOU are sooooo glad you had this procedure done"

We were scared to death. No one would explain further.
A lot of Tears and calls to family later and they finally let us back to ICU and the new Neuro.

The neuro was not as concerned about it as everyone else was. He was not as sure as everyone else was that this was a dissection.

2 days in ICU, then they moved her to the Seizure unit to monitor those.

Seizures turned out to be Non epileptic seizures(pseudo). So a psychiatrist was called in. She just said to reassure her that things would be back to normal soon and not to make a big deal about them. Suggested Holly go into a Day program for mentally handicapped adults.

Neuro did a MRI, which didn't show anything. Then he did a CT angiogram.
3 Radiologists looked at it. All said there was a dissection.

Doc said we would have to be in the hospital till Friday because she would need the blood thinner shots till then. Then he decided that if my husband and I would agree to learn to give the shots, we could go home on Wednesday. (YAY)

I was scared to death, but I learned to give her shots(in the stomach)

They never got the paper work done on Wed, so we finally got home Thursday around 6pm.

Home health is coming in to do her protime and report that to the doc's so we can get her coumidin levels where they need to be.

She will be on blood thinners for 6 months. She goes back to the neuro in 1 month for a doppler of her neck. At 6 months, they will do another CT angiogram to check it again.

At first I was frustrated with the non epileptic seizures, but suddenly realized that if it hadn't been for the seizures, no one would have had a reason to do the angiogram.

The seizures could have very well saved her life.

After we get the coumidin levels right, then the neuro said the Rheumy could restart the methotrexate.

She is not allowed to Jump, run, fall, flip, bump, ride a 4 wheeler, for 6 months.

I don't know much about dissections. All I know is what the doc told us in the hospital. I never left the hospital so I couldn't look it up.
I don't know about complications or anything. Just that they don't want a blood clot to form because the only place for it to go is the brain and that would mean stroke.

I will research and read more once I feel I have decompressed.
A week seems like forever when you are at the hospital.

Sorry this is so long. lol It was a long week.


DAY

Oh Day, I am so sorry about this. I have followed you and your daughters progress and pray this helps her. I agree, without the seizures you wouldn't have known about this condition. God works in mysterious ways doesn't he?

Praying for a complete recovery. Make sure you try to get some rest OK? Also, you may want to look up meds that affect coumidin as well, even over the counter drugs. Jim had to have blood while in the hospital once because someone gave him a med that causes the coumidin to go on overload.

Day and Holly Wow! What a week. I am so glad you found out what was going on with her. What a way to find out but so glad you did find out before something went completely wrong.

Keep us posted on her progress.

And please take care of yourself and get some much needed rest!

One thing that did come out of this whole thing is possibly another avenue to look into.

The neuro said that all the ENT's and Rheumy feel she has an autoimmune disease. The Neuro said that she could have a connective tissue disease along with the auto immune disease. Some connective tissue diseases can cause a dissection.

So I guess when we get back to the Rheumy, he will be looking into that.

DAY