FUDiabetes

UPDATE: Samson is out of the hospital


#1

Samson was discharged from the hospital yesterday. His NMDA-Receptor antibody tests came back NEGATIVE. For that we are so, so grateful. His EEGs overnight for the past week were stable – there were marked seizures and a few random spikes but the overall brain pattern looked good, according to his neurologists. And he has been doing so much better since he was discharged.

He received a complete round of intravenous immunoglobulin (IVIG) to suppress an autoimmune attack – under the assumption that his symptoms were caused by an autoimmune encephalitis. But we haven’t received any of the other antibody test results back. So we don’t know for sure. If they do come back positive, we may need to evaluate if he needs steroids to do further immune modulation.

We still don’t know if he has GAD-65 encephalitis, another form of autoimmune encephalitis, or some atypical presentation of “idiopathic” epilepsy (or, more unlikely, but still possible, some metabolic disorder that causes epilepsy). But given that he didn’t seem to have any deterioration in his symptoms they felt he was safe to take home.

He will have to come back for an additional lumbar puncture and MRI scan to see if there’s improvement (or worsening) in the imaging of his brain, as well as another EEG. He has been through so much in the past 7 days in the hospital, but he’s an amazing, tough, resilient little boy and amazingly seems to be in better spirits than me or Mitch. He is taking an anti-convulsant twice a day; he hates the taste and he’s complaining that his tummy hurts. HEs’ almost back to his old self, though irritable and his memory seems not quite as good as it was before. Though he was always super sharp so it might not be noticeable to others. Right now everyone is watching him like a hawk to make sure these are not signs of worsening symptoms.

While he is doing well, I, however, am a mess. I hide it from him but I’m pretty worried about the possibility of either an autoimmune encephalitis or a diagnosis of epilepsy. Some kids do outgrow it, and so far his seizures seem to be tapering down (he was having more than 100 a day at first admission and is now down to a few a day). But for now, his discharge diagnosis is epilepsy. We have always striven to make him unlimited with his diabetes and for the most part we succeeded. But I’m just not sure yet how to do that.

The doctor said he can’t climb higher than three feet (even though he has never had a generalized seizure) and can’t take a bath by himself. I’m not sure what the story is with gymnastics, but clearly it’s something we’ll have to assess. I hate that we’ll have to tell his piano teachers, and his preschool teachers, and I hate the idea that they may switch from thinking of him as just a lovable little kid to a liability. It kills me to imagine Samson not able to play at our neighborhood playground.

Reading about adults with epilepsy, it seems like many people are pretty limited by their seizures; many, for instance, don’t cook on a stove or oven, but use things like the InstantPot or microwave exclusively. They choose to live in houses without stairs (we have about 50+ stairs into and throughout our house). They replace their hardwood flooring with carpeting and get rid of all furniture with sharp corners. Many don’t feel comfortable living alone. And it’s illegal for most to drive if they’ve had a seizure in the past year. Those who have generalized seizures have a 24-fold higher risk of sudden unexplained death at night. And the statistics on people with epilepsy in adulthood seem pretty dire; many even intellectually normal people seem to have significant trouble with forming romantic relationships, maintaining friendships, finishing school and holding down a job. A huge chunk have issues with executive function, ADHD and aggression. It’s not clear why but I am really going down a rabbithole worrying about these future what-ifs. I know it’s counterproductive and that for now we should just be grateful to have our beautiful little boy back home and healthy with us. I am trying to be grateful and stay positive for his sake but honestly, right now it’s a struggle.

I’m also worried about autoimmune illnesses and how we can get ahead of them for Samson. His type 1 diagnosis could have been a fluke; we operated with the knowledge that he *could be diagnosed with more autoimmune diseases like Hashimoto’s or Celiac’s disease, but we didn’t really worry too much about those and figured he’s still at the same baseline risk of racking up other diseases as most people. Now he’s a 4-year-old who has potentially already had two life-threatening autoimmune diseases. Will he get a new diagnosis every few years? And how do we get ahead of that risk – is there some kind of genetic or immunological testing we need to do to figure out what’s coming around the bend? Does he need some kind of extra treatment to make sure he can live a long, healthy life?


#2

Thanks for the update, Tia! At this point, all you can do is wait for the tests to come back and try not to over-stress yourself about the ‘what if’s’.

My aunt had epilepsy and she lived with her mom (my grandma) her whole life. She would have seizures frequently and was on a lot of meds (but I think she had more than epilepsy). She died at 60, so still a decently long life. We continue to think about you all and hope that things get back to normal soon. Hopefully this was just some strange fluke and all tests come back negative for everything.


#3

I’ve worked with many well controlled people with epilepsy over the years, including a tugboat captain… they took their medications and seemed to be living full, happy, and productive lives… so I wouldn’t automatically believe that it will be a horror story even if that is what rattles out as a long term diagnosis.

Hoping for the best for Samson, and that you are able to get some much needed relaxation and peace now that he’s home with you.


#4

Hi @TiaG, I’m glad to know that Samson is doing better and is out of the hospital. I agree with @ClaudnDaye, that you should try not to worry too much—easier said than done, I know!

I had seizures (tonic-clonic) and abnormal EEGs as a kid and was almost diagnosed with epilepsy, though in the end wasn’t diagnosed because my seizures stopped. I also grew up with a disability and have developed new serious (sometimes life-threatening) health issues every few years.

I think it’s really important to not worry about the future and to just take it day by day with adjusting and trying to keep things as low-stress as possible (stress in and of itself can make conditions like epilepsy worse). Worry is a black hole that is never-ending and is not really productive because there is no way to prevent these things from happening or to tell what outcomes will be like. Thinking about the future is only useful when you can take concrete steps of some sort. (I say this all as a total worrier; these are some of the thoughts I use to stop myself from falling into that spiral.) Like diabetes, treatment for epilepsy has changed vastly over the past 30 years, and I don’t think you can look at an adult living with epilepsy today and compare it to what things might be like for Samson. I know people with epilepsy who struggle with uncontrolled esizures, can’t live independently, regularly end up in ICU…but I also know people with epilepsy who haven’t had a seizure in 15 years and who have master’s degrees and PhD’s, live independently, and are out living life to the fullest.

Just like diabetes, you will find ways to live life to the fullest and find a new normal with additional health issues, if necessary. It always takes time, and that adjustment period is never easy. This is one reason I never tie the concept of “unlimited” to any one specific task (like “eating whatever I want”), because then all it takes is one change in health status to shatter that sense of unlimitedness, and that just makes the entire adjustment process harder and scarier. Being unlimited is living the life I want, accomplishing the goals I want, and not letting health conditions stop me from pursuing things I want to do. It does take a lot more planning and at times, some things do look a little different. But the fact that they look different is not the same thing as being unable to participate. Not climbing more than three feet, for example, doesn’t mean Samson can’t play on the playground with his friends…it just means he may have to stay off certain equipment and you may have to help him out by finding some alternative activities or playground games he may love.

I’m continuing to keep you and Samson in my thoughts. I hope things continue to improve. Please don’t hesitate to reach out to the community if you need anything!


#5

I think that is totally normal. I can’t imagine myself NOT reacting like that if it were my child. Especially since you’ve been released home after running this initial gauntlet of problem solving…dust might settle a bit…so now is exactly when my “what if’s” would kick in.

You guys are amazing parents and caretakers. None of you asked for any of this and it’s completely understandable to be in the rabbit hole as a parent. I hope you all get relief soon. Samson sounds like an awesome little boy.


#6

I’ve only known two adults with epilepsy, and they were both moms whose children went to preschool with my sons. They exercised, they chased their kids around (they HAD kids!), and they were there grumbling about their marriages alongside the rest of us. :grin:

Of course you’re looking to the future and trying to figure out what it all means. I’d do the same. Just don’t wear yourself out doing it. I did the same when my oldest was diagnosed with autism and when my second one was born at 2 lbs. These kids have chosen a route quite different from what I had read so I’m glad I was able to contain the resulting fear somewhat. They’ve discovered new and unique ways to scare the crap out of me. :grin:

I’m glad you all are home and that signs from the last couple of days have been more positive. I hope it continues along this course and things continue to taper off into nothing. :crossed_fingers:


#7

Preemie?

Two pounds, six ounces here. :slight_smile:

(Sorry to be off-topic! But to stay on topic, I think children, especially, often defy the odds.)


#8

Micro-preemie.

That just made my heart warm. :heart:

Yes, children defy odds. Precisely my point. I was terrified, and I was sad when they were little. Their future felt so unscripted (really though, everyone’s is), and the unknown could be difficult to imagine without struggle and hardship. In truth, it’s not that we haven’t had that, we just haven’t had more than we could handle.

I hope that’s on topic. :grimacing:


#9

So glad you are all back home, these are the best news of the week!

We would all be worried if we were you, and I would be researching up a storm if I were in your place. My wife is so much better than me at dealing with uncertain futures and I hope you will be like her.

I am keeping my fingers crossed that this will go away soon and leave nothing behind!


#10

@TiaG Very very happy for Samson and your entire family. I wish you all well and hope Samson makes a full recovery soon.

I am not sure if this helps or not, but a company I was researching recently for work does non-invasive MRI-based brain scans (MRS) to diagnose brain disorders like alzheimers, epilepsy and such. They are based out of Boston, and the website is brainspecmed.com . I have to believe that some hospital in the greater SF Bay area has this equipment, and it might help to definitively rule out possible conditions.


#11

Glad to hear Samson is home. I don’t know a parent that wouldn’t be concerned to some degree. Here’s wishing you and the family strength and peace.

Lisa


#12

Thank you so much for the update! We’ll continue to keep all of you in our thoughts and prayers! You and your husband are amazing, truly, as is your son, Samson!


#13

Thanks everyone for the kind thoughts. I’m working to manage my worries as best I can. But Samson is definitely impaired. He’s incredibly grouchy and irritable, and has trouble with word recall, concentration and comprehension. For instance, today he seemed unable to organize the days of the week in order – he knew today was a weekend but said the next days were Sunday, Wednesday, Friday, Monday. He took out his shirt to get dressed but then seemed confused about how to put it on. He couldn’t remember the word for shorts. And his mood is like Eeyore to the nth degree. I’m wondering if it’s a side effect of his new medication. We will have to wait till next week to see. It kills me that he’s on such strong psychiatric drugs at his age.

The scary thought is that it could be a side effect of an ongoing brain inflammation as well; although it’s just hard for me to comprehend that. He walked into the ER last Saturday and was the same beautiful, effervescent little boy. His seizures were stable or improving in the hospital. I am really really trying not to worry.

His blood sugar has also been strangely erratic – rising to the 300s for no apparent reason, crashing low for hours. I guess we should change his site. I have no idea if the anti-convulsants affect BG.


#14

According to this overview article, they can affect BG. :slightly_frowning_face:

http://science.jrank.org/pages/422/Anticonvulsants.html


#15

@TiaG as hard as the situation currently is, your emotional strength will help Samson and your family endure this difficult time. I personally, and I believe my sentiment is not unique on this forum, am here to support you and your family in any way possible. If there is anything at all that we can do, whether in person or by extension please let us know.

You, Samson and your entire family are in my family’s continued thoughts and prayers. Be brave, we are sending our best prayers your way.


#16

@elver expressed my sentiments more eloquently than I ever could. Anything I can do to help I’d do in a heartbeat.


#17

@elver spoke for us too.


#18

@Jen, thanks so much for this perspective. I think you’re a pretty inspiring person and you are giving me hope for Samson. I think the memory deficits tend to be different for those with temporal lobe epilepsy rather than tonic-clonic seizures, which apparently don’t tend to do as much lasting harm despite being super scary, but I’m reading and it seems there are lots of ways to potentially counteract those memory deficits if they show up long term. Also, Mitch and I will never just idly sit by and let these things happen without putting up a huge fight and finding all the potential research/options out there to prevent this from happening. There are statistics and then there are individuals, which is hard to remember when you’re reading studies.


#19

@TiaG we all hang on your every word hoping for any bit of good news, each of us searching for a way we can help and we each are frustrated because what can I do from far away Tennessee, what can any of us do from our many far away places.

The one thing, the best thing, that I can do is to continue my prayers for Samson and your family.

I am glad that Samson is home in the place where your family is most secure.


#20

Sending lots of hugs and positive energy.