Hi - worried sick mom

[kymdawn]

Hi, everyone. Please, please read even though this is long with history that might apply.

I'm the *very* concerned mother of an almost 21-year-old daughter who's highly suspected of having temporal lobe seizures (complex partial).

Her history of the past two years has been amazing to say the least and this is just another scary part of a mind-bogging journey.

Two years ago this month she became very ill but seemed to do better. On Christmas Eve (and just after her 19th b'day) she found out she was pregnant. She was extremely ill, physically and mentally. We found out that she had Grave's Disease. It was very difficult to control and the pregnancy was a huge complication. Somehow, after out-of-control hyperthyroidism, three bouts of hepatitis due to the hyperthyroidism, etc., she delivered a very healthy baby four weeks early.

In January of this year she had her thyroid removed and did well. It was a race, though, to get it done. She began with postpartum thyroidtoxicosis and the meds weren't helping. She had to go on SSKI (potassium iodide drops), and the race was on to find a surgeon to fit her into his schedule in the small window of time we bought on the meds. With the removal of the thyroid, we thought it was over except for managing meds and possibly some minor mood swings, possible minor issues association with hypothyroidism.

She also had the goiter and grave's opthalmapathy. No dr's ever got it...no even her opthamologist. See, she's had glasses since just before her second b'day...vision being extremely poor.

I look into history, and she was always this energetic, more than usual, emotional ball...mostly delightful. I can see her first clear period of hyperthyroidism at about 16 years of age...just after her grandmother's unexpected death. Of course, we didn't know what it was. She had a few more of these periods, along with the issues that we now recognize as her having had the liver involvement (extreme itching with blood pooling under the skin where she'd scratch). So the dx. and everything that came along with it answered a lot of questions for us.

I feel this history important as it might link somehow to the temporal lobe seizures somehow?

Since about the same time as her first hyperthyroid period, she began to have these weird "thoughts/memories and stomach ache". She didn't tell me until she was about 18 and just thought they were weird. I did too. When we got the Grave's dx., I figured it somehow fit in there, but never could find out how.

Since I've had to be so involved in her care and her child's care, I've witnessed these stomach ache, weird periods a couple of times.

Of course, all she reported was the weird thought or vision and stomach ache because that's all she remembers! For instance, with this last one (just this past Thursday), that's all she remembered.

We were sitting there eating a Hardee's biscuit and gravy and we were talking. She didn't answer me, so I repeated and looked at her. She just held up one finger and very robotically said, "Shhh". She was very soft and robotic...almost as if calmly shushing a child. Immediately following that she put her hand to her chest and began to swallow...hard...as if we were swallowing down vomit trying to rise or something....as she started downward. In seconds it was over and she said, "Whew, that was a bad one." I asked her what she remembered and she just remembered the biscuit and gravy "looking weird" and then getting really sick to her stomach. I asked her about the shushing and swallowing and she had zero memory of that.

The one I witnessed before was exactly the same excepting she didn't shush me.

She had two last Thursday. Part of my big concern is that I feel these episodes have a cycle to them. For instance, for days prior to the seizures, she was very anxious, panicky, dependent, emotional. She had the seizures and those things simply climaxed and erupted (as has happened before many times...we contributed it to her thyroid counts being off and the emotional laibility that can come with that).


During the period after the seizures (usually within the next few days) she can cry for entire days...but that usually occurs after some type of "injustice" done to her in her thinking. This is when her thinking becomes off. She'll perceive something as an extreme injustice or personal assault of some kind and can become extremely self-righteous, angry, belligerent even. We've come to learn that this is usually the climax in that after such events, she calms a bit...exhausted, sedate, overly-calm almost. After this, she becomes our girl again.

So, about five days before the seizures her symptoms ramped, she had the seizures on Thursday and continued with the emotional stuff that climaxed and erupted Saturday night into Sunday. This was a particularly bad period in long duration, but most times it's similar to this if not as long-lasting.

I appreciate you all hanging in there with me through this very long post that has so much history as it can be applied somewhere, I think.

We've talked with her family dr. (not endo yet...she has an appt. later this month with endo) and she said it certainly sounds as if she's having temporal lobe seizures and she has an EEG scheduled for Friday. We take it from there, I guess. She also put her on prozac to try to help the emotions/mooods and then to help immediately, xanax for one month as needed...just until the prozac can help, she sees a neurologist, or whatever happens from here.

The specific questions I have are:

1.) Are the psychiatric-type symptoms common with these types of seizures and is there more I can do than just continue to try to respond calmly?

3.) I've read just a bit about autoimmune encephalitis and what I've read scares me absolutely to death...particularly systemic lupus (btw, she was tested for both RA and SL due to her liver involvement at times and both were negative at the time). What are the chances that this is autoimmune-related?

4.) If it's not autoimmune-related, I heard that this can be due to trauma to the brain, which she's had none I can think of. She never had fever-related seizures as a child either. That said, she did have a forceps birth that turned into an emergency due to mechonium stain. The got her out of me so quickly at that point, that I had the worst kind of tear a woman can have. What might the forceps have done, and could that have something to do with all of this (eyes, seizures, etc.)? Also, she had several to many severe, continual ear infections that resulted in tubes in her ears.

5.) With her being affected so much personality-wise during these times, does that indicate more an encephalitis or is it typical with temporal lobe seizures across the board?

How more can I help my baby??? *tears* She's been through so much...

Thank you so much for any responses and information.

Kim

[jgbmartin]

Kim,
I am newly diagnosed with partial and simple complex seizures...my seizures are either from several bacteria infections I had as a result of double compound fractures to my arm or the IV meds that I was on for 2 years. I don't have the personality issues you are describing...but since being on seizure meds, I do have wide swinging of emotions..not sure if it is Keppra or just the frustration of it all. With all that her body has gone thru, seizures could be possiblity. I have no memory of my seizures...but I do get an aura that lets me know it is about to happen.
The EEG should be a good start to find out what is going on. Keep us posted.
Jennifer

[Meetz1064]

a quick hello, as I am on my way out the door to go substitute teach, and I will post more later, but I will say this:

ANYTHING to do with the thyroid (I am hypo myself) is autoimmune related. The thyroid is the master gland that controls the production of the hormones in one's body.....

But your primary sounds like they are on top of things. When is the appointment with the neurologist? The sooner, the better.

Take care. You've found a wonderful home here.

Meetz

[Georgiagirl88]

Hi there,

I am sorry your Daughter is going through such a bad time and I know when your child is ill/not well it is so worrisome. Hopefully, things will turn around soon. I can tell you that If she isn't seeing a neurologist already..make an appt. I have left Temp. lobe seizures/complex partial. The period after her spells/seizures certainly sound like a bad post ictal phase. Post ictal meaning after the seizure. I get very bad post ictal period for a day or two. It makes me feel absolutely terrible. So weak I can barely move or get up and go to the bathroom. Headache, shaky, Depressed,cry sometimes because I feel horrible. These feelings may be common for alot of people in the post ictal phase. I also have alot of autoimmune in my family. My one sister has Systemic Lupus, RA, Polymiositis..just to name some of her overlapping conn. tissue diseases.
I have actually been checked several times for autoimmune..I have chronic pain and symptoms that go along with these diseases. I would ask your Dr. about your concerns. Seizures can cause all sorts of weird symptoms for sure. My Drs. explained that temp. lobe seizures can certainly cause all sorts of weird feelings and emotions. I wish your Daughter all the best. There is great information out there..I think you will find the answers you need. Talk to her Dr. and don't stop until you are satisfied with everything.

Take care!
Michelle

[skillefer]

Hi Kim. Welcome to CWE. Wow...sounds like your daughter has a lot going on. As for the stomach pains and weird aura's, sounds like it could be a seizure. I also have hypothyroid issues. My doctor chalked it up to my mom having gestational diabetes when she was pregnant with me. All I can suggest is that you try to have her keep track of all of these "spells" she's been having....have her write down when she has them and how long they last. Also have her write down what she eats and when, what she drinks and when, how much sleep she gets each night, and any stress she's under. See if there's any pattern that develops. Does she have more "spells " when she eats certain things? Questions like that. Try to make sure she keeps a good sleep schedule...I know, she's 21 and probably not thinking that she needs to start doing all of this....but she's got several overlapping conditions, and she really does need to take care of herself. The emotional aspects are probably post-ictal. But it could be her frustration at all her medical issues too. Just try to stay calm when she has the seizures. She's 21 now, so she's going to have to start advocating for herself with the doctors. Lead by example. Get informed, and encourage her to get informed too. That way, she can make the most of her doctor visits. And, if she gets a doc that she doesn't like, or who she thinks is just brushing her off, tell her to get a second opinion. She needs to find doctors who will work WITH her. Not just glance at a file and write a prescription. And suggest that she finds a support group. She may have epilepsy even though it doesn't show up on an EEG. So things will be scary for her for a bit. So encourage her to find a group of people that can relate to what she's going through. She's always welcome here.
Welcome to CWE. Feel free to ask questions, vent , or just chime in. But know that we are here for you. Some of our members are parents, and like you, they are here to find out how best to support their kids. I have to applaud all of you parents. It's hard being the one with the seizures, but I can only imagine how frightening it must be as a parent to watch your child go through medical issues and know that there is no way you can take it away. Se we're here for you.

[Bernard]

Hi Kim, welcome to the forum.

1.) Are the psychiatric-type symptoms common with these types of seizures and is there more I can do than just continue to try to respond calmly?

Yes, it is possible for people to behave erratically during the post-ictal phase following a seizure.

... That said, she did have a forceps birth ...

An MRI should be able to identify if there is any physical problem with the brain (abnormalities, scar tissue, etc.).

Many (most) people diagnosed with epilepsy never find a root cause for it. It could be a whole range of contributory factors (ie. not a singular answer).

Here's some threads offering a basic background on epilepsy: epilepsy 101 threads

[kymdawn]

Wow, y'all are so nice and informative. Your host(s), admins, mods and members must be very proud of this community. Thank you for the information and the caring welcomes.

Yes! the "postictal" term is exactly one thing I was looking for so that I could go further in my reading and understanding! This is something very difficult to deal with...her emotional/psychiatric response in this postictal period...or the subacute postictal period.

Her psychiatric response doesn't appear straight away...it's more on a delayed reaction and while I certainly wouldn't label it with a psychotic presentation, her emotional state is not realistic with her immediate world or the situation(s) at hand.

Her PCP seemed fairly certain that my daughter was experiencing temporal lobe seizures and we're doing the EEG tomorrow. She said it might need to be followed up with a sleep-deprivation EEG, MRI, etc., but we'll start with the basic EEG then referral to a neurologist. She said there could be an autoimmune link as well. My fear is another autoimmune dx. as it's almost common to have more than one...a big concern is systemic lupus even though she's tested negative once already.

I'm trying not to read too much more about the causes, etc. of the temporal lobe epilepsy right now. We've seen some scary stuff these last few years and my mind jumps from zero to ten really quickly, imagining the worst. So I guess my focus right now (until dx. and talking with neurologist) is on what I *can* do, how I *can* help...that takes me to the emotional/psychiatric presentation in all of this as it's the worst part of it for her as well as the most difficult to handle.

It's been so hard and confusing. It breaks my heart that her biggest fear (even over her physical health) is that they'll say nothing is wrong and she's insane. *tears*

I appreciate so much the input and shared experiences and knowledge, and just as soon as she's ready, I'll steer her this way. Right now she doesn't want to know much (she did this with her Grave's dx. as well).

Just so y'all can get to know me as a person as well...

I know nothing about seizures (other than the average well-known facts) so this is all new to me. I'm just a mother who loves her kid like crazy and is so worried I can't see straight...have been for the last two years since all of this began. I sit her in an almost shock that she's dealing again with another major health diagnosis.

I have another daughter, older than the one I'm discussing here and am raising my almost 6-year-old nephew. He came to me just before his second birthday and I couldn't love him more if I'd given birth to him myself. My daughters both blessed me with a grandboy each last year...my first two grandchildren, born four months apart. They're both such amazing and beautiful little souls.

Through most of my work career I was a legal assistant, and now that I'm medically retired (due to TN), I volunteer my time as an administrator at a large mental health peer-supported community (much like this community), and am going into my fourth year of doing this. It's a very large site with many areas, but I'm a Co-Admin of the support community only. I'm living my dream of volunteering to help survivors of abuse know they can truly survive as I have. What a blessing! It gives meaning to suffering somehow and is very healing.

I just appreciate you all so much and hope to get to know each of you better as I share our experiences from here on out.

With thanks and respect,

Kim

[skillefer]

Hi Kim! I'm glad that we can be of some help. You're not going through this alone...just remember that. We're here for you. Also, did your daughter tell the doc that she had just given birth last year? Sometimes hormone shifts can trigger seizures too....Just a thought....And just keep in mind, that you can have a normal EEG and still have epilepsy.

[tinasmom]

Welcome Kim -

I am so sorry your daughter is going through all this. It sounds like her seizures are complex partial. The best thing that you can do is to educate yourself. The internet is a wonderful resource for researching.

I know how you feel to watch your daughter and feel helpless. As moms we want to fix everything for our children no matter how old they are.

I agree that keeping a log or journal is very important for your daughter to show her doctor.

I will keep you and your family in my prayers.

[drarvindr]

Dear Kim ,
In answer to some of your questions :
1) Yes , Temporal lobe seizures sometimes ahow up with personality changes.
2) Grave's disease can also be autoimmune. What kind of hepatitis did she have? Antiseizure meds get metabolised in the liver. what is she on currently for her seizures?
3)It's possible but unlikely that the forceps extraction cause trauma. After all , she didn't exhibit any symptoms untill she was 16.
4)The emotional lability is more than likely due to the thyroid problem.
5) Have you taken a look at the heart? the grabbing at the chest suggests a possible pathology.get a 2d echo if possible and an EKG.

REMEMBER : DO NOT FREAK OUT. THIS IS NOT ABSOLUTE MEDICAL ADVICE AS I HAVEN'T SEEN YOUR DAUGHTER OR REVIEWED HER SYMPTOMS. THESE ARE SUGGESTIONS MADE ON WHAT YOU"VE DESCRIBED HERE.

[Bernard]

...
REMEMBER : DO NOT FREAK OUT. THIS IS NOT ABSOLUTE MEDICAL ADVICE AS I HAVEN'T SEEN xxx OR REVIEWED HIS/HER SYMPTOMS. THESE ARE SUGGESTIONS MADE ON WHAT YOU"VE DESCRIBED HERE.

You should make a signature with that (or something similar).

[drarvindr]

You should make a signature with that (or something similar).

you're right. i don't want people to take my online differentials as absolute. i don't want people to get irrationally afraid.

[darkmarkshark]

Its common for complex partials in temporal lobe epilepsy to end in rage, anger, delusional thinking etc. Its why temporal lobe epilepsy is so frequently misdiagnosed as a psychiatric illness before the epilepsy is discovered. In general the delusions rage happen about 3 hours - 2 weeks after the seizure. Most frequently 3 hours to 2 days after. However the symptoms can last as long as 3 months afterward, though I understand that is very rare

These seizures usually involve hallucinations.While your daughter can tell it was a hallucination afterwards if what she saw was your nose turning into a football, she'll have no way of being able to comprehend that it was a seizure until her post-ictal state is gone if she saw something realistic - ie you slashing her tires, than calling someone to come replace them all. Most sudden religious conversions in epileptics occur in people with temporal lobe epilepsy during their post-ictal state because thats when the person is focusing on the "religious" visions they had that are real to them.

One thing to keep in mind, is that telling her she's wrong will likely only make her even angrier. She knows she's right. Its bad enough to have had the injustice happen in the first place, its even worse when people are calling you a liar about it.

I've threatened to beat up people when post-ital. My memory of the events is very different from everyone else's who was present at the time- it involves them threatening me, not the other way around. Usually I end up raging over something that doesn't make any sense - ie "I know you are eating my cereal because there are two fewer pieces in the box than usual." And that can even happen on a day when I haven't had any cereal in the house for years


There are ways to lesson the likelihood of the seizures getting to this point, even if the medicine doesn't stop them. For example, eating a high fat diet, and taking vitamin supplement. Since woman's epilepsy is often closely linked to hormones she may need to take birth control pills - she'll have to keep in mine that they will be unlikely to prevent pregnancy though so she'll need to be careful to make sure she isn't pregnant

While the You know you have epilepsy if... thread was written in humor, it does provide a lot of real life illustrations of how we act after a seizure. Alot of people wouldn't expect you would ever berate your husband for leaving your best friend Sheila at a reststop in Ct, when you don't even know anyone named Sheila, as a result of a seizure, but as someone here can attest, that can happen.

[darkmarkshark]

Not all of these links will apply to you, but this is what I gathered up to show someone who was honestly curious about my seizures, as their view only involved falling down and convulsing, seizure over, end of story.

I don't feel alert enough to go through them right now and point you to which ones are the most relevant, but they should give you a basis to help you understand the psychiatric correlation with temporal lobe epilepsy.


http://www.epilepsy.com/epilepsy/epilepsy_temporallobe


http://www.emedicine.com/NEURO/topic365.htm

http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy

http://www.theoaklandpress.com/stori...06100525.shtml

https://www.epilepsyfoundation.org/a...pes/simple.cfm

https://www.epilepsyfoundation.org/a...lexpartial.cfm