FUDiabetes

Please pray for Samson


#21

Just wanted to say I’m thinking of Samson and your family and hope all is well. I know it doesn’t help when it’s you in the situation, but we have been through some very scary situations with my own sons, with talk of tumors and things not looking good, and things have turned out okay. I hope this is the case for you. There’s a time and place for google, but now might not be it. It probably can’t do a thing for you between now and the time you see a doctor other than to scare you.

I’m thinking of you, and I hope everything is okay. If you’re up for an update, it would be appreciated.

HUGS


#22

Will be praying for all of you. So so sorry your family is facing an unknown. Lots of love and support.


#23

Best wishes and prayers to Samson and the rest of your family. And I third the advice to stay off Google. A little knowledge can be a dangerous thing.

Prayers ascending.


#24

All of our love to Samson, to you and to all your family. Big, big hug to Samson. Please keep us in the loop, and let us all know what we can do to help.


#25

I just saw this, Please add my prayer for Samson and a prayer for strength for your family.


#26

Would love an update @TiaG! Hope Samson is OK.


#27

here is an update:
The short answer is we still don’t know but are trying to figure out what’s going on.
We took Samson to the pediatric ER on Saturday night. Because he was aware and did not seem to have any mental status changes during these spells, they were on the verge of discharging us. However, after the head doctor came in, he had another one and he decided that it was likely a seizure, though a very subtle one. He was admitted and they did a video EEG. They put him on strong anticonvulsants, then started him on a maintenance dose of a third.

Yesterday they did an MRI and a lumbar puncture. They determined that he was having small, focal seizures in two different regions of his brain. He also has slightly elevated cerebrospinal fluid pressure but absolutely no sign of infection in the brain, and a small patch on the MRI that seemed a little bit excitable, which could be the source of at least one of the types of seizures.

Right now, they don’t think this is typical “idopathic” epilepsy because the seizures are originating in two separate spots but not spreading, and because his background brain activity looks great, and also because he has that elevated CSF. Also, because the broad-based seizure suppressant didn’t seem to work at all.

The current potential explanations are an autoimmune attack or inflammation in the brain. However, they won’t know for three weeks whether any antibody tests come back positive. They are also evaluating the possibility that some underlying metabolic disorder is to blame, although that seems unlikely given how quickly symptoms set on.

If it’s an autoimmune attack, they have to make a guess about what type it is. One of the most common ones is NMDA-receptor encephalitis, though Samson’s symptoms don’t quite fit with that. However, the good thing is that there’s a treatment for this type of autoimmune attack – intravenous immunoglobulin and steroids to suppress the immune system, a few months of anti-seizure medications, followed by tapering. The doctors also said that if it is an autoimmune attack, even if they never identify the specific antibody, there are treatments that are similar which seem to work pretty well. Also, this type of problem can be reversible if caught early, which it seems to have been (if this is what it is). There is also another type of autoimmune attack, called GAD65, which is also intriguing because we already know Samson has positive antibodies to that (from his diagnosis with T1D). However, his symptoms don’t fit at all with that. And there may be many other autoimmune disease processes for which there’s no known antibody.

He is still in the hospital. He has an EEG hat glued to his head, which he HATES and which means he can’t really get up, go to the bathroom or change his clothes with ease. The rescue medications that they gave him (ativan and phosphenytoin) made him incredibly disoriented and messed up; he couldn’t tell you his favorite cartoons, couldn’t tell you even the most basic facts about his family, etc. But those are wearing off and he’s getting back to his usual self. He is miserable in the hospital (as any 4-year-old-boy would be) but we are hopeful right now that there’s a way for him to make a full recovery. He was literally doing gymnastics on Saturday morning and was completely fine – had an awesome time, super verbal and chatty, etc. So we are hoping that once he’s adjusted to the anti-seizure medication and completely gotten all the anesthesia, ativan, fosphenytoin, etc. out of his system that the cognitive deficits we’re currently noticing will disappear completely.
Please continue to keep Samson in your prayers – we are praying that they identify the cause, that it’s easily treatable and that he makes a full recovery. AS you can imagine, Mitch and I are beside ourselves with worry. But we’re trying to keep everything normal for Samson as getting back to daily life routines is likely to be the best thing for his recovery.


#28

:anguished: Oh, @TiaG, I’m sorry there aren’t clear answers yet. I’m also sorry to hear Samson is stuck in the hospital for now - how miserable for him (and for y’all, having to watch him be miserable). We are continuing to pray.


#29

Thank you for the thorough update, @TiaG. I have been wondering about you guys all day/weekend. Praying!


#30

Prayers for Samson and your whole family. Glad you are getting the best treatment possible.


#31

Oh wow. I can’t even begin to imagine the level of stress and frustration you and your husband are feeling right now…just reading your comments has me worried beyond belief with you guys. My families thoughts will remain with you all as you work through this rough patch - we are all hoping for the VERY BEST possible outcome for Samson.


#32

Darn, I was hoping for the easy button explanation. You are in our thoughts and prayers. Keep strong. Glad he is getting the care he needs, but any 4 year old in the hospital makes me sad, your 4 year old in the hospital even more so.


#33

@TiaG, we all feel awful for all three of you, but particularly for Samson. We spent dinner discussing him tonight, and Kaelan was saying how terrible it feels to read what is happening to him after having known him for almost two years: he is like family to us.

The good part is that it looks like you have a solid team around him, that seems to be able to get to the bottom of it. But the uncertainty must be so hard to deal with.

We all wish as hard as we can that it will go away soon and only leave a couple of bad memories behind. Stay strong.


#34

Thanks for the update! I’m glad he’s getting looked at an they’re working to solve the puzzle. (Clearly I wish Saturday had continued on with gymnastics and nothing exciting.)

Good thoughts for you all and Samson’s medical team will continue. I am so sorry they don’t have the answer yet. And wearing an electrode hat must be very uncomfortable. :confused: We are sending hugs your way.


#35

Thanks for the update. Your family has been in my heart and prayers since I read your first post. Will continue to keep you there.


#36

I had a similar case of almost being dismissed from ER, but fortunately displayed a new symptom, and was admitted for 3 days!

Sometimes blessings come in strange ways.

Glad to hear you are getting answers and continue to send thoughts and prayers your way.


#37

Our prayers (and lots of hugs) are with you and yours, along with everyone in this community and beyond!


#38

@TiaG if there is anything I can do to help, please let me know. In the S. Bay and available (transport, food, errands, whatever)


#39

UPDATE: Samson is receiving intravenous immunoglobulin and corticosteroids for a presumed case of anti-NMDA encephalitis tonight. Though his symptoms don’t quite match, he started showing distinctive mouth movements (dyskinesia) that are associated with the disease. He’s also showing the increased irritability and some of the other symptoms, such as speech and memory problems. Those (right now) come and go, and they’re subtle – if you didn’t know him you might think he was a totally normal 4-year-old boy, but he’s not acting like our totally normal 4-year-old boy. So far, his EEG is still (mostly normal).

I’m terrified. While most people diagnosed with this disease survive, they often take a very long time (months to a year or more) to fully recover. Treatment can last months and we’ll have to wait a few weeks to know if this first-line treatment even works. And most people have lingering neural and cognitive deficits. I am hoping and praying that because we caught it a little bit earlier, that we will somehow avoid the horrible outcomes and have a miraculous recovery. There are people who recover remarkably quickly – though that’s usually a case where there’s an underlying ovarian tumor, which wouldn’t be the case for Samson. I cannot even begin to comprehend how we will be able to manage his diabetes while also dealing with this vicious disease.

God help us.


#40

:slightly_frowning_face: I can’t imagine what y’all are going through, but just take it one day (or one hour, whatever you have to do to get through) at a time, and I know that’s easy to say in my position. We are praying fervently for swift healing and a favorable long-term outcome.