FUDiabetes

UPDATE: A week home with Samson


#1

Samson has been home for a week now. He went back to preschool on Wednesday. He has not had any seizures (that we have noticed) but I lay awake most of the night and watch him because I’m scared of him having seizures at night that we’ll miss. I know I need to change this but for now that’s what I am doing to make sure he is safe.

We were discharged from the hospital with no clear plan except that if his symptoms worsen or he seems to be deteriorating (i.e. he’s having seizures or marked behavioral changes) we need to check in. We did check in on Tuesday but they seemed reassured because he was having a good day, so to speak. ALL of the autoimmune antibody panel in his cerebrospinal fluid were negative, though he had a slightly elevated level of something called anti-cardiolipin B. We haven’t yet discussed these findings with his care team, so we don’t know the significance of this finding. However, they said that even a negative result on the antibody tests would not change their diagnosis of nonspecific autoimmune encephalitis, given his presentation. (Basically, a specific signal of inflammation on his MRI – a T2 flair or hyperintensity — along with a sudden presentation of focal seizures in two different spots, along with a few lymphocytes in his CSF and elevated CSF pressure.) But it’s such a squishy and amorphous diagnosis that I don’t feel that confident.

He is taking an anti-convulsant called Vimpat. We are having trouble determining whether the medicine or some underlying disease process is causing symptoms, but they are quite noticeable. He wakes up every morning and sounds very depressed and whiny. He is super tired, yawning every few hours. In the evening he seems sort of hyperactive and aggressive, often hitting people randomly. When you ask him why he says he feels crazy and also he doesn’t know why. He’s complaining that his eyes hurt and he has a headache and a tummy ache.

Cognitively, he seems like he is sometimes as sharp as before and sometimes he has trouble concentrating (and/or seeing). For instance, he can sometimes make it through one reading lesson really well (we used to do two a day but the lessons do get harder as you go along). Yesterday he quit after half of one – he seemed to have trouble actually seeing the letters properly :cry: He can still do addition up to 20 but he now uses his fingers to count instead of tabulating in his head. But some days he seems just as sharp and like he’s improving. It feels very cyclical.

His blood sugar management has been TERRIBLE. I don’t know why. Last night he randomly spiked to 350+ then crashed to 63. Loop was automatically regulating his blood sugar, so all these changes happened without me intervening or “rage” bolusing. He’s been running high all day but the night before he was super low. I saw him trending down and treated him at 100 mg/DL (so usually plenty of time to plateau). He dropped to the 50s, finger stick confirmed 63. I treated again. Finger stick 55. I treated again, finger stick 46. Loop had zero-temped him for a long time so he had -0.3 units on board, which usually would cause him to rise eventually. Finally I gave him 5 units of mini-glucagon because it just didn’t seem like he was able to digest his food. All told, he was below 60 for at least 2+ hours. He then spiked up to 250 as he woke up.

I know a pattern will emerge at some point (it has to, right???) but for now it just feels like I’m riding a rollercoaster and still in the middle of the ride. And the part of me that sees patterns everywhere wonders if this erratic glucose control is somehow a harbinger of something ominous going on in his body.

I think the hardest part is that our medical orders are so ambiguous. We have this tentative diagnosis – autoimmune encephalitis – but we have no positive confirmatory tests. That means that we did a treatment but have no proof it worked. And the suggestion that it is relapsing/didn’t work is all based on symptoms. Which means we’d have to give him further, potentially painful and dangerous treatments, with no analytical tests to show it was successful. Meanwhile, he didn’t receive the typical first-line treatment (we did IVIG but not the steroids) because they were worried about his blood sugar management. So I have the added uncertainty of not knowing if he’s not doing so well because we just didn’t give him enough treatment?

Meanwhile, the symptoms of this diagnosis are so nonspecific and can mimic the side effects of the medicine, possible symptoms of the “interictal” period between seizures, as well as ongoing cognitive deficits associated with long-term seizure activity. We were told to come in if his seizures recur or if his symptoms get worse – but how do we decide what’s worse? WE took him in on Tuesday and they determined he was doing well. On Tuesday he was doing really well. But yesterday he seemed worse, and the symptoms seem to be coming and going. He has had no seizures (which are a very specific type of lip seizure and tremble) that we can see. But who’s to say he’s not having some really subtle type, like maybe an absence seizure – and we just can’t see it??

It’s all so uncertain.


#2

@TiaG. All the common adverse reactions of Vimpat are consistent with Samson’s behavior, even the random hitting of people. The cognitive changes, behavioral changes, somnolescence, gastric upset are all common side effects. You should consult with the prescribing physician about his behavior.

I know you just don’t know which way to to go right now, which is why you should be in close contact with his treating physician.


#3

Hi @docslotnick! Yes, that’s what we suspect – because of the circadian rhythm to his symptoms too – to me that suggests it’s something tied to when the drug is having it’s peak or reduced effect. He’s soooo tired – he’s sleeping now and it’s barely 10:45am and I think that might actually be his most pronounced symptom. Which to me suggests the medicine.

The tricky part is he was discharged from the hospital, and then on Tuesday we had this weird appointment with three different doctors who came in to see us – but he doesn’t actually have a dedicated pediatric neurologist right now, nor does he have any follow-up appointment scheduled. So right now, my option is to call the nurse advice line and if it’s an emergency they forward me to the on-call attending at the hospital. If the nurse decides it’s not an emergency she never calls back. I wish that they’d just assigned him a care provider right out of the hospital; it would be so much more productive to have the same conversations over time with the same person. But alas, this is what happens with “team” medicine nowadays, I feel.


#4

It sounds like he needs a pediatric Neuro to be the quarterback of this team. Makes me glad I had a great ppo when I had my stroke.

Maybe some yelling at someone in authority is in order. You should not be left wondering under any circumstance.


#5

I’m so sorry to hear you guys have continued to sturggle and especially to hear that you don’t have a medical professional you can turn to for help. I am continuing to keep your family in my thoughts. I hope especially that you’re able to get a doctor who you can consistently communicate with going forward.


#6

Oh, Tia, as I was reading your post I was grateful that you have loop and mini-glucagon in your care repertoire! Hopefully there will be a different med available with fewer side effects. Please know you are all in my thoughts—sending positive energy your way.


#7

I’m like Jen and the others, I am so sorry that you guys continue to struggle with a definitive diagnosis. I like the suggestion that Doc has made, Samson’s care team needs a quarter back. He need someone to run the plays and just as important you need someone to answer to you.

I don’t even want to suggest that Samson is not getting the best of care but for some reason I feel like you are being left out of the equation.

Samson and your family are still in my thoughts.


#8

I was thinking something along these lines. More like insistent politeness, but this is coming from an actual doctor! So the advice seams valuable.

Recently, during an illness, a friend of mine who is a pediatric hospitalist gave me the advice to be very concise and very firm, but always polite, about what I need from doctors and medical facilities. And to call back repeatedly, if necessary, until I obtain the healthcare that was required. And if calling didn’t work, she suggested showing up in person. It worked. It is exhausting, but I agree with everyone – you should have somebody who is available to assist you with this. Being up in the air isn’t helpful. The other thing that I developed was not caring what the nurse on the telephone or the scheduler thought about me. I realized that my health was more important than the grumpy office lady’s opinion about me. And then I realized I needed to change doctor’s offices. I don’t know if that is available to you – a second opinion or changing locations or whatever, but it helped me.

We will also continue to think about Samson and your family, and are sending good thoughts in your direction. I am so sorry that he’s not feeling like himself yet.


#9

My province has an Alliance of Professional Health Advocates, often former health care workers who help patients and their caregivers navigate the system and ensure what needs doing gets done. Is there anything similar in San Francisco?