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Seizures with and without low blood sugars

Discussion in 'Parents of Children with Type 1' started by mwstock, Jan 8, 2016.

  1. mwstock

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    My son had a seizure last week on Tuesday, December the 29th. I tested him before leaving for work, and he was 85. The paramedics said when they tested him after the seizure he was 118. I had put his pump on a temp basal before leaving for work 30-45 minutes before to pull the blood sugar up. His blood sugar was high multiple times the night before, but no ketones per lab and urine samples taken in the ER after seizure. He had an EEG earlier in December with normal results and no abnormalities detected. We have a follow up appointment at UC Davis Medical Center, Neurology department next Monday to review the results of the EEG. We were referred to neurology for the consult and EEG because he had a normal blood sugar (170) after the prior two seizures in March 2014 and March 2015. His first and second seizures were caused by low blood sugars during the night. He has had normal blood sugars during the past three seizures. All of the seizures have been while he is sleeping, anywhere from 6-9 a.m. In the morning. An abnormal EEG would indicate epilepsy. Last weeks seizure was his fifth. It is frustrating not knowing what is causing them. The endocrinologist says they do not appear related to low blood sugars. It could be neurological, even though the EEG comes back normal. I was just curious if any other parents have a child with type 1 and seizures? My son's first seizure was due to a low blood sugar. I was sleeping in the bed with him. I gave him cake frosting and he was above 100 by the time the first responders got to our house. They transported to the ER in the ambulance, did blood and urine tests and CT scan. All were clear, they released him and he was out playing in the yard that afternoon. His second seizure due to a low blood sugar the last day of family diabetes camp, while he was sleeping. He was given glucagon, which stopped the seizure and he vomited the majority of the morning. In a couple years we are going to apply for a service dog from a local non profit which is about three hours away. Dogs 4 Diabetics out of Concord provides service dogs to families, but the child must be 12 to apply. This would be an extra tool, since my son is prone to seizures during the night. I know seizures can be triggered by various things. Just curious if any families have had a similar experience?
     
  2. wilf

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    It seems that you know what caused some of seizures, namely low blood sugars. You indicated yourself that the first two seizures were caused by lows.

    That leaves 3 more. The most recent one blood sugars were normal, but you say he was high multiple times the night before. How high was he, and for how long?

    And what can you tell us about the other 2 - do you have CGM or BG data that might shed light on things?
     
  3. mwstock

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    Yes, I have meter data on his seizure that was on 3/16/15 @ 8:30 a.m. and I have meter and CGM data on his seizure that was on 3/11/14 @ 8:15 a.m.
    3/16/15 BG information: 149@ 6:03 a.m., 144@8:32 a.m., 174@ 9:10 a.m., 183@ 9:26 a.m. (no CGM data), I reviewed the BG numbers the night before and morning of and they are in range.

    3/11/14 BG information: 179 @ 7:28 a.m., 173@8:20 a.m., 173@ 9:15 a.m. (CGM data during this seizure which support blood sugar checks and that blood sugar was in a normal range before and during seizure). I reviewed the BG logs the night before and morning of seizure and they are all in normal range.
     
  4. Snowflake

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    I'll share my experience, but I'm not sure how useful it'll be, since it all resulted in inconclusiveness.

    My daughter was worked up for a potential "absence seizure" approximately 2 and a half years ago. Her face blanked and she became unresponsive for about 30 seconds. We were in the car at the time so I pulled over as fast a I safely could and checked her bg, and it was something like 160 (can't remember exactly). Within a minute or two, she was back to her normal self.

    We were referred to neuro, and they did an office exam and a sleep-deprived EEG, which came back 100% normal. The neurologist told us that it might or might not have been an absence seizure; that if it was an absence seizure it could well have been a one-time thing; and that EEG had limited usefulness in catching something weeks after the fact if it was transitory, so that we just needed to keep an eye on her for a while. We've never seen anything remotely like that since then, but it was reassuring to go through the workup.

    I'll also mention that I was briefly on a FB group called T1D and Epilepsy that provided some useful information and might be worth it for you to track down. Good luck! I hope you get some answers at your next neuro appointment.,
     
  5. mathcat

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    My son was diagnosed with Benign Rolandic Epilepsy a few year ago. He had two seizures, both while asleep, with normal blood sugars. After the second seizure he had an EEG where luckily he showed to be a textbook case (luckily in that at least we did not have a long process of searching for answers). He was on medication for three years, stayed seizure free, and eventually had a clean EEG showing that he had grown out of his epilepsy. For having epilepsy at all he was lucky. He had a type that one can often grow out of, for many types that is not the case.

    His neurologist told me at his final appointment that he no longer had an increased risk of seizures. Since then his endocrinologist has told me that his history of seizures, even these having nothing to do with blood sugar, makes him more at risk of seizures in the future, I guess that he has a lower threshold for seizures now.

    I am sorry that you have not gotten as clear of answers. I hope things get figured out.
     
  6. mwstock

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    Thank you all for your responses and comfort. I am anxious to talk to the neurology team on Monday to see where we go from here. The EEG came back clean in December. His last seizure was full body and lasted quite a while. I am afraid that with a history of seizures, my son is more at risk for having more and has a lower threshold for seizures now. I am glad to hear that your children have grown out of this and I pray my son will not have any more seizures.
     
  7. Nancy in VA

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    Does he still wear the CGMS? If so, the data for the six hours or so leading up to the seizure may also be valuable. If he was running perpetually low, his glycogen stores in the liver could have been depleted. Just another piece of data to factor into what I'm sure is a complex situation.
     
  8. mwstock

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    Nancy, Yes, he still wears the CGM. Unfortunately we were not running it during the past two seizures in March and December of 2015. Before the last seizure in December he was 85. At bedtime I had given him correction because he had 2-3 blood sugars the evening before in the 300's after dinner. Since he did not have the CGM on, I cannot confirm that he went low from the correction and then rebounded to the 85. He did not have any low blood sugars the prior day. He did not have the CGM on during the March 2015 seizure. His blood sugars were in the 100's the day of the seizure and the prior day. The blood sugar was in the 200's the evening prior to the day of the seizure. He had his CGM on during the March 2014 seizure. The blood sugars were in the high 100's the morning of the seizure and the evening before. Blood sugars were in the 100's the day before the day of the seizure. He had a 64 at 2 a.m. the prior day, but no low blood sugar the night before the day of the seizure. The CGM data in between BG checks with meter confirmed the blood glucose was not low during the March 2014 seizure. Unfortunately, I think he may be predisposed to have seizures, since he had the first two seizures due to low blood glucose. I wonder if his threshold is lower now. We received a referral to neurology and had the EEG test done, after we confirmed the blood sugar was in a normal range during the third and fourth seizure. This past year he has been wearing the CGM sensor the majority of the time. With the recent seizure I will be pushing it more and not give my son the choice to not wear it. It seems we have finally got in a rhythm with the sensor and have learned when to put it on and the timing of calibrations. At first when we started the Medtronic sensor, the accuracy has been less than desirable, but recently the accuracy has been better with calibrations at the right time. I try to put a new sensor on during the day or prior to dinner, that way it does not need calibrations right before bedtime or during the night. I may explore the Dexcom CGM again, now that our medical flexible spending account balance is available for out-of-pocket.
     
  9. Nancy in VA

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    Isn't that always the case - the sensor not on when you need it.

    Until you know for sure what is causing the seizures, I would say you need to have him wear the sensor 24/7. We love the Dexcom - its incredibly accurate. I recommend you consider it. Emma had been on a Navigator CGMS for several years and we had stopped because we couldn't get sensors anymore and she was having a good period of better regulated BGs. Then in a 5 week period she had 2 seizures. After the second, I called the doctor and had the CGMS within a week.

    I poked her during her second seizure and she was 90 but I am absolutely convinced that was a rebound - so if the rebound was 90, I can't imagine how low she was before.
     
  10. mwstock

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    Yes, I will run the CGM 24x7 now. It is both a tool and extra set of eyes. I wish I had that data during the last seizure to confirm he had not dipped low after the correction and rebounded to the 85. He was 85 about 45 minutes prior to the seizure and 118 after, so I don't think it was low blood sugar related. He had a good A1C last quarter. The endocrinologist had said it was impressive given one of the three months he was in the hospital and in surgery twice for a major trauma. Next week we will see the endocrinologist, so we should get the latest A1C.

    I am sorry to hear you and your daughter had to go through the seizures so close together. It is a very traumatic and scary event to experience as a parent. My sons first seizure haunted me for a year. His second one at diabetes family camp three years after diagnosis was a motivating factor in getting him on the insulin pump. At camp the food was low carb and the activity was very heavy. In both instances, I believe are Lantus dose was too heavy, so the blood sugar would drop during the night. The basal testing while on the pump is very important. It is easier to do the basal testing at night, since there is no activity or eating to remove from the equation. The insulin pump is a tool, it requires programming the correct settings for success. Even with the insulin pump, managing type 1 can be a roller coaster. This last week we have fine tuned the settings and have found balance.

    We upgraded his pump about two years ago to the latest Medtronic pump with the newer CGM with threshold suspend. There was quite a learning curve with the CGM, learning when to calibrate it and when to start a new sensor. The sensor accuracy has seemed to improve since we have been on it. The threshold suspend has worked several times during the day and night if we have not responded to alarms.
     
  11. mwstock

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    The doctors are putting my son on anti-seizure medication based on history of seizures and severity of last seizure.
     
  12. rgcainmd

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    That sounds like a safe thing to do; were I in your shoes, I would feel a little relieved...

    I hope things start looking up for you and your son!
     
  13. mwstock

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    Yes, part of me is relieved. part of me is sad with the confirmation of epilepsy and another diagnosis. I know we are seeking treatment and what is best for our son to mitigate the risk associated with the seizures.
     

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