Sending many prayers may each step be an unfolding of the highest good !
So very sorry to read about all you’re going through. Even if the medical details are going well, anger and grief about your sweet kiddo having to carry yet another medical burden are what I imagine I’d be feeling, and when the meds and condition are actually causing real, immediate suffering, that must be very hard to handle. I am impressed at how much information you’ve been able to gather and process. Too bad there’s not some kind of mom energy donation pool we could contribute to!
Two things from my statistical brain that sometimes help people:
–these long term outcome data for childhood conditions are from people who had the condition a REALLY long time ago, given how long it takes to grow up and then how long it takes the data to stack up. Treatments and care change in the meantime. So they may not predict what Samson’s horizon looks like, at all.
–when there’s uncertainty, there’s just no statistic that can make the worry go away…you can be a person with a condition that “usually” doesn’t go well, but you’re the lucky one, or you can be the person whose cancer is “almost always” cured, but you still worry what if it does. I often go down the “rabbit hole” of research because I’m looking for a feeling of reassurance…but really l have to find that in my faith and my family - the statistics always let me down in the reassurance department no matter what they say .
Hope you all get some rest and some (reassuring) answers soon.
Hi @TiaG, I’m going to share my story. I’m afraid it will cause you worry, but that’s not my intention. I want to show you how great it is that you’ve caught it early, as well as help you understand the subjective mental side it can have, and its interplay with T1D, and, ultimately, a success story.
Roughly 1-2 years after my diagnosis (T1D at age 22), I started having odd disturbances in mood, behave unusually from time to time, and I started having episodes of intense, horrible feelings. I told my doctors “I feel terrible, but depression is the wrong word for it”. Everyone just assumed I was struggling with life due to T1D. Even me.
Over time, things got worse and worse. My epilepsy (though I did not know it was epilepsy for many years) was not “on-off”, but more a sliding scale between healthy, and distinct partial seizure. I have never had a tonic-clonic. But my worst partial seizures looked like this:
I would lose the ability to steer my thoughts. It was like riding a bicycle with “no arms”. If I was lucky I could stay on the road for a while, but the slightest negative stimulus would send me veering away and falling into a pit of horrendous thoughts. I would lose the ability to speak, and would crawl into a corner and curl into a ball and then not move. I was fully aware of what was going on, and in anguish, but by the next day I would barely remember.
The rest of the time, I would have memory problems, concentration problems, and in particular, an inability to turn my ideas into anything tangible. I would think of twenty ideas in my head without trouble, but then writing them down proved almost impossible. Exerting myself for any length of time would push me along the epilepsy axis, with worsening emotional outbursts, plus an inability to feel fatigue. I was a ruin.
I was unemployed for six years; I ended up visiting 11 medical professionals before I worked out what it was on my own.
And I am certain that it was caused by hypoglycemia. I mean, yes, hypos would often lead to seizures later in the day. But I also believe that the hypos are what started the snowball rolling in the first place, and then epilepsy took on a life of its own.
To make matters worse, epilepsy wreaked havoc on my hormones and my insulin needs were jumping around wildly from week to week… for SIX YEARS. (I needed to change a carb ratio from 1:17 to 1:3 once. Do the math on a 51g meal.) And I had no clue why. I saw 5 endos and none of them seemed interested in getting to the bottom of it.
This story has a happy ending. Once I started to suspect epilepsy, I pushed for an EEG and when it came back negative, I had to push harder for another one. That one caught some epileptiform activity. I was started on Epilim. Epilim took the edge off the seizures, but although the other symptoms were reduced, they were still seriously affecting my life. And Epilim made me very depressed. 3 months ago I decided I wouldn’t settle for that so easily. So I started Lamictal.
It fixed EVERYTHING. With NO side effects. In fact, it eliminated the depression, too. It’s better than being cured of T1D.
I have gone from being able to work 3 hours a day to working 11 hours a day. Without exaggeration, the clock has turned back 8 years. At first I was cautious and was ready for it to fall apart, but I’ve been going strong for 3 months and it’s only when I take my medication an hour late that things destabilise for a couple of days.
And back when I started Epilim, diabetes became so much more stable. It’s still a PITA but it’s become 95% easier to manage.
To be fair, part of the reason I am essentially back to normal is probably that I keep my sugars quite high, and have reduced hypos to less than once a month. With intramuscular injections (and Afrezza when I can get any), and a CGM, I do manage to get OK results.
I should also mention that even before we knew what it was, my family and I learned strategies to head off seizures. Taking a shower would always help settle it down. I figured out that whenever I was irrationally extremely intent on completing a task, I had to forcibly rip myself away and do nothing for a while. Different things work for different people.
Most likely, you will find a great treatment and Samson can live a normal life. You are definitely receiving much better care than I ever did. There is a lot of help out there, and anyone as well-informed as you will have really good odds. Samson will be in my prayers.