Seizures

katrat01
By katrat01 Latest Reply 2010-04-26 07:58:13 -0500
Started 2010-04-10 08:35:25 -0500

My 14 year old son was diagnosed with type 1 16 months ago. He takes injections 3 times a day. Last week he had a full blown seizure early in the morning. Immediately afterward his number was at 83. The paramedics gave him the glucose gel and his number dropped to 80. The doctors seem to think that it was brought on by low blood sugar while he slept. His desired numbers are from 100 to 120 so 83 was not out of range foir him. He gets a bit shaky around 65. Has anybody else gone through this? I know that the liver MIGHT kick in if the level goes drastically low, but would it kick in enough to bring it up that much? Please help!?!?


19 replies

serenity_of_the_heart
serenity_of_the_heart 2010-04-23 14:48:18 -0500 Report

from about the age of 6 to 14 i had a seizure disorder-i was diagnosed with diabets just before my 5th birthday-for awhile they thought it was caused by my diabetes but like your son my numbers were great when the seizures occured. The seizures ur the grand maul type. My advice is to get him into a doctor that specializes in seizure disorders and have him tested…what ended up happening in my case was that i had the seizures once a month always in the middle of the night and always my sugars were well within normal range. I ended up being put on a seizure med to prevent them and around the age of 14 i grew out of the seizures…just a suggestion to get him checked out by a doc that specializes in this sort of thing

katrat01
katrat01 2010-04-23 21:18:49 -0500 Report

Thanks Serenity. Have an appt with Neuro in a month. Something about those teen years. Are any studies being done on that one?

serenity_of_the_heart
serenity_of_the_heart 2010-04-26 07:58:13 -0500 Report

Not that I know of but have been looking into all of this myself being I have 2 children and want to have all the info…just in case! Apparently they have a 7% chance of developing Type 1 because I have it

Deb-G
Deb-G 2010-04-10 20:00:33 -0500 Report

I have epileptic proportion seizures due to severe hypoglycemia…seizures usually are about a reading of 20 or below…You do have a bodies emergency response to seizure and it does tend to get your BS up some by the time paramedics arrive but typically mine will be around 50, not the in the 80's…they consider my seizures epileptic because they are full grand-mal seizures and I have memory issues etc afterward, however the trigger is the hypoglycemia for me…I dont have epileptic seizures without that trigger…

I do believe a hypoglycemic seizure especially in teens can happen maybe at higher levels…I know a young girl like that who has seizures during the night also…but after they treat her and get her BS up she has no amnesia etc ..

It actually is only useful to test during the seizure in order to know blood sugar is low… to confirm it…Your meter doesn't give an accurate reading below 50 so its really just for your own reference of whats really happening…course if you get a reading of 20 you know blood sugar is down there somewhere, just not exactly what the true reading is…its not considered reliable below 50…My Endocrinologist at Mayo told me meters aren't made for low's they are made to manage high's…I now have a "hypo-kit" that I have taught those closest to me to use as my seizures are big enough to be of immediate risk…However all seizures are serious so you should definitely figure out what is going on…every severe low, even without seizure, just confusion, does damage to the brain…I would follow through with a good Neurologist and be sure of what is happening…(as well as your Endo doc)

Good luck to you both and I hope he doesn't experience this again…

katrat01
katrat01 2010-04-11 09:56:57 -0500 Report

Because of being woke up into this situation, I didn't think to test during the seizure. That is a VERY good suggestion and I thank you for it. At no point during the hospitalization or afterwards did his endo docs ever mention to try and take his number during should this happen again. These are doctors that I am losing faith in very quickly. Unfortunately!!

Because of my job, I know for sure that it was a full blown grand mal seizure. He had absolutely no memory at all of having the seizure afterwards.

We keep any and all supplies in a kit at all times. The tablets, glucose gell, the big shot and any necessary phone numbers. The kit goes where he goes.

We do have follow up visits scheduled with Neuro docs who I felt very confident with.

Thanks for the suggestions and advice.

Deb-G
Deb-G 2010-04-11 12:55:40 -0500 Report

I have full blown grand mals in which i have no memory of the seizure but am also unsure of my name, people around me, etc for a good 30 minutes…I'm usually admitted to the hospital for a week and even then have limited memory of the days there…this is why they classify me as epileptic however only the hypoglycemia seems to trigger it at this point…some time down the road more triggers could arise…My seizures are true tonic-clonic in phases and last about 4 minutes in total…past 4 minutes is extremely damaging to the brain so we dont hesitate to call 911 ever…mine have all been the same in magnitude…

Testing will only allow you to know for sure if his seizures are hypoglycemic related or an epilepsy occurance…the number itself wont mean much…if the hospital tests him and he's 80 they probably aren't attaching it to hypoglycemia? since thats not low…they may/or have?/put him on a therapeutic dose of an anti-seizure drug? If this is the case they may suspect epilepsy?…

I did have a hard time proving it was a hypoglycemic response…when they first started I was diagnoses with epilepsy and forced to take Keppra…I hated it! I felt doped…I currently dont take that amount now that we have come to attach the trigger and cause…but I can tell you it took A LOT of fighting for what I knew (that it was hypoglycemic related) and a trip to the Mayo Clinic in MN to finally pinpoint what was happening and get a better tx plan to fit me…I am also a very unpredictable diabetic so this was very difficult…

I can say though…that whenever possible in his diet…if somehow he is like me…limit carbs and try to equal carb consumption to proteins in the same serving…or more protein then carb ratio…hard to do…everything has a ton of carbs…

If night-time is his trigger I would try making string cheese his snack…good protein, little to no carb…its the best thing to have in your body to prevent yo-yo'ing and spike and dives…especially sleeping when you cant recognize your own symptoms to eat…My seizures happen at unpredictable times and we are still unsure what makes me so unstable…but diet does play a role in stabalizing and limiting occurance…If i make sure my protein-carb ratio is as close as possible in anything i chose to eat…I have less episodes…i do also have frequent lows where i get confused or just weak and dizzy…not always a seizure…the seizure is when it happens unpredictably fast and I cant have time to act on it even if my mind is sensing it…but I have found diet helps…this is just one thing we have found works to control this bizarre swing for me…

with a teen this is even tougher :( …so many factors for young people from hormones to activities, and wanting to be like everyone else…

wishing you the best :) If you are anywhere near one of the Mayo Clinics I highly recommend it …I say this because I also found that the Endocrinologist has his opinion, and the Neurologist will have his…they wont quite agree and they dont work together unless you are in an atmosphere like Mayo…Only when all the necessary specialties come together and conference and work thru all the factors did I seem to get anything accomplished…

Good luck to you

~Deb

katrat01
katrat01 2010-04-12 19:53:52 -0500 Report

Thanks Deb! You are right that everything has soooo many carbs. It is difficult with his age, and hormones just throw a big monkey wrench into the mix. I have been keeping a much closer eye on what he eats lately. But it is hard at his age when all he wants to do is eat some days. I know he is a growing boy (already 6ft & 200 lbs) and needs to fuel his body, but its getting harder and harder to fill him up AND keep him within/under the amount of carbs the docs recommend.

The neuro docs did not start him on any meds just yet because they said it would be a two year commitment with the drugs. They want to do a MRI and see what if anything shows up. I fully agree with them on that.

I guess I'm just having a hard time accepting that it was a hypo seizure with his number not being that low.

Thanks for the tip on the string cheese though. He loves it and with very few carbs it will be a great addition to his nite snack. Thanks! Kathy

littlebitbm
littlebitbm 2010-04-18 01:43:35 -0500 Report

I have a 13 year old and he has had a lot of then he is now on the pump and he is doing so much better he has not had one in 5 yeaars

katrat01
katrat01 2010-04-20 19:16:23 -0500 Report

Thaks Little! For some reason, my son is very adament that he does not want to use the pump. But…I just got a sample "pod" in the mail that is very similar to the pump. I think that the constant supply this gives will help him. Hoping for the best with that. Think that the puberty hormones have anything to do with all of this?

Gabby
GabbyPA 2010-04-10 18:33:47 -0500 Report

Oh, that is so scary to go thru, specially with your own child. I had a room mate who would have seizures and it took me a while before I could be calm and deal with it with confidence.

You are right an 83 is not really that bad, specially if he reacts around 65. So what it sounds like is that his liver did kick in and get him up to 83. I was reading about this kind of thing and there was a woman who was diagnosed with epilepsy before they found she was dropping to about 27 when she would have the seizures.

Does he keep a log of his food intake? It could be that he over calculated his insulin. Sometimes when we "guess" at what we are eating it can cause us to not dose properly.
Talk to his doctor and see what they suggest.

katrat01
katrat01 2010-04-11 10:00:18 -0500 Report

No, he does not keep a food diary on a regular basis. but his night time snacks are pretty much the same thing which is around 18 to 23 carbs. The docs want that one to be under 25.

Richard157
Richard157 2010-04-10 18:32:42 -0500 Report

Did you test your son's blood sugar while he was having the seizure? My wife used to give me glucose tablets if I was not completely unconscious and then test my blood sugar. If I was lower than I usually was for a bad hypo, she would give me more tablets. The glucose gel used by the paramedics is a good product. It is sold at my drugstore. You could probably buy some locally, or online. You can put some between his lips and gums and even if he is unconscious, some of the gel should melt and make its way into his system. It can make him awaken enough that he can drink juice or chew glucose tablets. Some diabetics overtreat their lows and end up with a very high blood sugar level. Going from very low to very high in a short time is not good.

If you cannot arouse your son during a seizure and the gel does not solve the problem then calling the paramedics is the right thing to do. You did that. Very good.

I have had Type 1 diabetes for 64 years and there have been many seizures until recent times. My wife called for help 3 times during the 1980's. Now that I am pumping insulin and using a CGM I never have seizures. I am very healthy, with no complications. With good care and control we can have long, healthy lives.

Good luck to you and your son!

Richard

katrat01
katrat01 2010-04-11 10:05:02 -0500 Report

Thanks for the reply. We do keep a kit with everything in it he may need. The tablets, gel etc.

No, I did not think to check his number during the seizure. You are the second person to ask me that. Guess I know a little bit better next time. Sadly, his docs never asked this question, or suggested it if there is a next time. Thanks for your input! I need all the help I can get here. This is a very scary thing to deal with at times when I consider all the ramifications of what could happen. Glad there are people like you with advice. Thanks again!

Shortaphrodite
Shortaphrodite 2010-04-19 06:44:51 -0500 Report

Hi. I know how u feel. My daughter was 2 when she was diagnosed with type 1. She had it for 5 years and then had 4 seizures at long intervals, although 2 were only 2 weeks apart! I did her bloodtest straight after but it was normal everytime and curiously, she's always fitted in the early morning so it could be hypo related. However, I am also type 1 and also have epilepsy. You just have to play it by ear and if the seizures keep happening and he isn't really low, maybe you'll have to ask if it could be epilepsy. It's all inter connected. Very confusing! Good luck.

Deb-G
Deb-G 2010-04-19 08:03:26 -0500 Report

You are so right…it is VERY inter-connected…While I'm having Epileptic seizures, mine are also triggered only by a severe hypoglycemic drop at this point…I am not taking anit-seizure meds because they wont help a hypoglycemic response…but…I am told that where my seizures are Epileptic in nature and are activated in this way…it is a possiblity that in the future it will start to occur more often in a true epileptic nature and I will then need medicine on a regular basis…Its so confusing and so hard to really pin down the root cause and diagnosis

katrat01
katrat01 2010-04-20 19:11:37 -0500 Report

With all of the miracles in medicine now, you would think that they would be able to find the connection. It kind of shakes my faith in the medical professionals at times. Thanks!

katrat01
katrat01 2010-04-20 19:08:48 -0500 Report

Not that I'm glad your daughter had seizeres, I am glad to know that there are other parents who have gone through this. Thanks for letting me know I'm not alone!

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