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Jann in TX

Dr Hive-- seizures!

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My middle dd lives with us (she had a baby 9 weeks ago).  When she came home from work tonight (she is a PS teacher with a long commute) she was complaining about being tired and dizzy.  She sat down with us to watch a TV show and almost immediately I noticed her 'grunting'-- then we turned the lights on and she started having a full blown seizure!  DH rushed her to the hospital (she had several more on the way and some 'smaller ones' when she got there).  Dr's are running tests now.

We have suspected partial seizures for years-- but they have never been caught by a DR (even after a week in the hospital 'hooked up').  This was NOT a partial seizure!

DD does have a history of several bad concussions.

What should we expect? 

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Oh My Jann how scary! So sorry to here this!

Is she still in the hospital? They will do a CT scan and she will be there in the ER for a few hours.If she is fine they will send her home with an Anti seizure medication like Keppra.Then tell her to see a Neurologist asap -once you see the Neuro they will do a Eeg and want a Mri as well.They will probably put her on a new anti seizure medication -depending on what the Mri shows.This is a jist-she is also a new mom so I don't know how different it will be for her.Hope the baby is okay!

HERE is the main thing she will not be able to drive for 3 months in TX!At least there is uber/lyft.Please feel free to pm.

Edited by mominco
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Whatever else might be going on, she’s well within the timeframe for eclampsia. Hopefully, they’re also monitoring that. How scary. 

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Dr thinks it might be related to the preeclampsia she had when pregnant...

She 'lost her words' after the seizure-- its been a few hours and her speech is finally coming back..

 

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39 minutes ago, Jann in TX said:

Dr thinks it might be related to the preeclampsia she had when pregnant...

She 'lost her words' after the seizure-- its been a few hours and her speech is finally coming back..

 

I have heard of a few having this after having preeclampsia.  One mom in an online support group had this and felt she really didn’t notice how she didn’t feel herself from giving so much to the baby.  She just assumed she was tired from taking care of a newborn.  But she did recover without any issues. 

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I had seizures with my oldest because of eclampsia.  However, it was right before he was born (emergency c-section.)  I haven’t had any more since that one day, and it’s been 14 years now.

I will pray that she gets good care and everything gets sorted out. 

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I’m so glad the seizures didn’t start while she was driving. Thank God you and your husband were right there. So many scary possibilities and I would call that best-case. She will need to stay off the roads until she has been seizure free for a length of time. In my state, it’s 6 months. 
 

I’m so sorry.

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They admitted her and were running LOTS of tests... DH and youngest dd came home around 1am and DH is heading back there now (7:30 am)... I'm home with the baby (I do 90% of his care anyways).  Thankfully the baby slept from 1am to 7am and is back asleep now!

 

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First, I am so sorry that this has happened to your daughter, and also that she had to go back to work so quickly after giving birth.

My oldest has had seizures since childhood, but is male, so no clue about preeclampsia-related seizures. However, if she does get prescribed Keppra *specifically*, please make sure she also gets prescribed vitamin B6 to take concurrently. Keppra can have an adjustment period that includes rage, anger, depression, and/or anxiety. Vitamin B6 can help mitigate these side effects. (We have lived this experience.)

Good luck to your daughter. May she recovery quickly.

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Seizures are so scary! Praying for excellent care, accurate diagnosis, and a full recovery. So glad you are able to help her!

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At nine weeks it wouldn’t be anything related directly to pre e, that window closes by about six weeks postpartum, and you’d be much more likely to see seizures (eclamptic seizures being very rare anyway, granted) closer to the 1-2 week postpartum mark anyway.  
 

BUT the stress of pregnancy and birth, plus sleep deprivation with a newborn, could absolutely lower the seizure threshold for her if she’s prone to them anyway.  Those are triggers for epileptics.  So would any minor illness or infection on top of that.  The tests they’re running are good, she would need at a minimum bloodwork and an EEG, preferably 24-48 hours with video.  Medication could be discussed, some are safer for nursing babies than others and her doctor would have the best information for that.

Edited by Arctic Mama
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Oh, regarding medication and nursing, if she is, I HIGHLY suggest she or you or her doctor contact the Infant Risk Center out of Texas Tech university. It is a free service and they are the ones doing the actual research on how much medication is in the milk, when it peaks, what the half life is, etc etc etc. WAY more info than the manuals the regular doctors have on hand. https://www.infantrisk.com

Ive called a few times and they were incredibly helpful. Could tell me what each medication did, and could recommend safer ones in the same family, etc. 

Edited by Ktgrok
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DD has be diagnosed with PNES-- the seizures are not epileptic-- so good news-bad news.

There are no meds available to stop the PNES seizures.  We have used some bio-feedback with her and she has been able to stop a few of them this way (this gives me hope!)

Dr thinks the stress from the pregnancy (preeclampsia) and the c-section combined with postpartum depression made the perfect storm.

We are praying that these will stop on their own as she makes the effort to rid her body and mind of stress.  It is about a 50-50 chance... half of the people with PNES never recover and are on full disability the rest of their lives...

She is on emergency medical leave from her teaching job... 

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3 minutes ago, Jann in TX said:

DD has be diagnosed with PNES-- the seizures are not epileptic-- so good news-bad news.

There are no meds available to stop the PNES seizures.  We have used some bio-feedback with her and she has been able to stop a few of them this way (this gives me hope!)

Dr thinks the stress from the pregnancy (preeclampsia) and the c-section combined with postpartum depression made the perfect storm.

We are praying that these will stop on their own as she makes the effort to rid her body and mind of stress.  It is about a 50-50 chance... half of the people with PNES never recover and are on full disability the rest of their lives...

She is on emergency medical leave from her teaching job... 

 

I hope she will be full recovery part of that statistic 

the response to biofeedback sounds promising 

Praying.

 🤗  hugs

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Given the trauma of the pregnancy/and birth, she may want to consider EMDR treatment. i found it recommended for PNES patients, and I have a few friends, one of whom was suicidal from birth trauma, who had great success with EMDR and credit it with saving their life. 

She (or you) could contact your local ICAN group to ask for referrals to therapists/psychologists that are familiar with PTSD related to birth trauma. 

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My daughter had PNES and the seizures stopped when her anti-depressant medication (SSRI) was increased. There have been some studies that show that taking an SSRI can reduce PNES.

Susan in TX

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Forgot to add, the reason I mention ICAN is that even if she doesn't want to go to meetings (although they can be incredibly healing for some women - to be around others who GET how traumatic it was, and that a healthy baby isn't the ONLY thing that matters) is that many therapists and such will not GET that birth can be traumatic. ICAN local groups will be the place to find referrals to those that do, and that have experience working with PTSD from birth issues. 

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1 hour ago, Jann in TX said:

DD has be diagnosed with PNES-- the seizures are not epileptic-- so good news-bad news.

There are no meds available to stop the PNES seizures.  We have used some bio-feedback with her and she has been able to stop a few of them this way (this gives me hope!)

Dr thinks the stress from the pregnancy (preeclampsia) and the c-section combined with postpartum depression made the perfect storm.

We are praying that these will stop on their own as she makes the effort to rid her body and mind of stress.  It is about a 50-50 chance... half of the people with PNES never recover and are on full disability the rest of their lives...

She is on emergency medical leave from her teaching job... 

Awe, I’m sorry for the mixed diagnosis, I wish they could have fully cleared her and am praying she finds a way forward to functionality daily again.  Big hugs.

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5 hours ago, Jann in TX said:

DD has be diagnosed with PNES-- the seizures are not epileptic-- so good news-bad news.

There are no meds available to stop the PNES seizures.  We have used some bio-feedback with her and she has been able to stop a few of them this way (this gives me hope!)

Dr thinks the stress from the pregnancy (preeclampsia) and the c-section combined with postpartum depression made the perfect storm.

We are praying that these will stop on their own as she makes the effort to rid her body and mind of stress.  It is about a 50-50 chance... half of the people with PNES never recover and are on full disability the rest of their lives...

She is on emergency medical leave from her teaching job... 

 Jann, I just posted a link in another thread that may be helpful for you. There are a couple of active Facebook groups on the topic if you search for functional neuro disorder or FND Hope.

My daughter suddenly developed a Functional Movement Disorder last spring. I had no idea such a thing existed, but now I realize I have known a number of people with the issue. My own mother would have seizures just like you describe with your daughter.

Check out https://fndhope.org/ and do look for the Facebook groups if you have an account there.

My daughter got excellent help at The Recovery Project in Livonia, Michigan, but it took a lot of research (and travel) to find the place. The movement disorder specialist at the teaching hospital where she was referred was not at all helpful. She has minimal symptoms at this point, and that is amazing. She was actually requiring a notetaker in class because she could not write at all.

 

Edited by GoodGrief1

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Gosh, how did I miss this thread?!  How awful.  I'm glad she has a diagnosis and but sorry that she has such a long road ahead. 

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We are in a holding pattern-- family stress level is HIGH.

The number of seizures per day was decreasing-- she went several days last week without any-- and almost a week without any during the 'daylight' hours.  Today was not a good day.  She read an email from friends who were attending an ongoing training workshop and I'm pretty sure that is what set her off.  She had 4 very strong ones earlier today-- and just now another 4--also very strong.  The Dr has started her on an anti-depression med that has been promising in other cases...

DH and I have taken over full time care of her baby (he is SOOOO adorable!).  Baby is sleeping at night much better-- up about 2 times for quick meals then right back to sleep-- and this had helped immensely.

DD will not be able to go back to work unless they stop completely-- so earliest will be next fall... If they do not stop she still has to wait one year before she qualifies for any medical/SSN benefits.  DH and I are trying not to stress about the cost of supporting her and baby.  She does get a small amount of child support...

I'm afraid-- I'm afraid of loosing her (she has been having 'thoughts') and I'm afraid of her (AND ME) loosing custody of the baby.

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2 hours ago, Jann in TX said:

We are in a holding pattern-- family stress level is HIGH.

The number of seizures per day was decreasing-- she went several days last week without any-- and almost a week without any during the 'daylight' hours.  Today was not a good day.  She read an email from friends who were attending an ongoing training workshop and I'm pretty sure that is what set her off.  She had 4 very strong ones earlier today-- and just now another 4--also very strong.  The Dr has started her on an anti-depression med that has been promising in other cases...

DH and I have taken over full time care of her baby (he is SOOOO adorable!).  Baby is sleeping at night much better-- up about 2 times for quick meals then right back to sleep-- and this had helped immensely.

DD will not be able to go back to work unless they stop completely-- so earliest will be next fall... If they do not stop she still has to wait one year before she qualifies for any medical/SSN benefits.  DH and I are trying not to stress about the cost of supporting her and baby.  She does get a small amount of child support...

I'm afraid-- I'm afraid of loosing her (she has been having 'thoughts') and I'm afraid of her (AND ME) loosing custody of the baby.

What does her therapist have to say about you and DH taking over all care of teh baby? I'm not trying to question your judgement, but wondering if that is prolonging things, in the sense that she can't start to feel confident in her abilities, bond with the baby, etc if that is the case, and not feeling confident, and not bonding are no doubt some of the biggest stressors for her. And there are good hormones released when caring forthe baby, hopefully, that would help with PPD. In this country we tend to help mom by caring for the baby, but in a lot of other places my understanding is the help was with everything else -so cooking all meals, doing all dishes, laundry, etc so the mom could just sit and snuggle the baby. I know your DD isn't up to full time care of the baby, but for the baby's sake regarding attachment, etc, is she up for any of it? Just holding/snuggling? 

Is her therapist familiar with birth trauma and PPD?

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10 hours ago, Ktgrok said:

What does her therapist have to say about you and DH taking over all care of teh baby? I'm not trying to question your judgement, but wondering if that is prolonging things, in the sense that she can't start to feel confident in her abilities, bond with the baby, etc if that is the case, and not feeling confident, and not bonding are no doubt some of the biggest stressors for her. And there are good hormones released when caring forthe baby, hopefully, that would help with PPD. In this country we tend to help mom by caring for the baby, but in a lot of other places my understanding is the help was with everything else -so cooking all meals, doing all dishes, laundry, etc so the mom could just sit and snuggle the baby. I know your DD isn't up to full time care of the baby, but for the baby's sake regarding attachment, etc, is she up for any of it? Just holding/snuggling? 

Is her therapist familiar with birth trauma and PPD?

DD is having seizures while holding baby-- not good!  We have to be right next to her when she is with him.  She DOES spend lots of tummy time with him (he is on a mat and not being held).  She does all of his bathing-- with one of us right next to her.  I agree-- taking care of baby is IMPORTANT to her healing.

Her therapist is great-- very in tune to situation.

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 That sounds stressful all around. I'm sorry you're all going through that. 

Hopefully a long break helps. I was barely getting off of the couch 9 weeks after having a baby, I can't imagine being back at work with a long commute! 

Sending you thoughts of peace and healing. 

 

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