Seizures

[Cheryl Biermann]

I've seen a few people mention seizures as part of Atypical HUS. We are watching Nathan closely since he has had seizures due to fevers and extreme medical events, such as his surgery, the embilization of the kidneys and fluctuations in his electrolites.

There are many reasons for receiving an MRI, those of you with seizure complications may have more reason for an MRI than others.

The agent Gadolinium a non-radioactive agent that allows a clearer picture for doctors has also been found to cause Nephrogenic Systemic Fibrosis or Nephrogenic Fribrosing Dermopathy in people with renal insufficiency. This is a man-made disease caused by the renal patient's inability to rid the contrast from the body. The determination of this man-made disease was made in 1997. It is debilitating and sometimes fatal condition. It causes discoloration and thickening of the skin and connective tissues which inhibits movement which may result in broken bones, muscle weakness and scarring of the internal organs. Liver patients with any degree of renal insuffieciecy should also avoid MRIs using Gadollinium.

 

Seizure Meds information:  Depakote - one of the first lines of defence agains seizures may also cause a drop in the H & H, so levels should be very closely monitored.  The addition of copper to the meds may help with H&H recovering, but the removal of Depakote may be necessary.

 

Kepra:  You may observe a rash with Kepra, if you do it is important that a Neurologist view the rash.

 

Diastat:  There is an emergency med. for seizures lasting longer than five minutes or when the patient is not breathing it is an enema and is called Diastat.  This is a tiny example of important things you need to know when your child experiences seizures. 

 

Causes could be fevers, electrolite imbalances, (this is why it is important if your child is vommitting or has diareah to do labs) and epilepsy.  There may be other causes, please feel free to add your comments.

 

There is a list of to do's when your child has a fever further down on this forum.

 

A condition may look like seizure activity but is actually a condition caused by a brain injury, which is permanent, it is called Chorea, (sounds like Korea).  The drug to treat Chorea is Depakote!  If this is where you are headed, you may choose to try Depakote, just be sure to monitor blood levels!  It is possible not to treat this condition if it is not too inhibiting.

 

Reply by Cheryl Biermann just now

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FIRST AID FOR SEIZURES

*Stay Calm.
*Do not restrain the person or stop movements.
*Clear the area of sharp or hard objects that might harm them.
*Cushion their head.
*Time the seizure. If seizure is over 5 min.s or another seizure occurs call for emergency help.. (aHUS patients should always let their doctors know when a seizure has occurred.)
*Loosen anything around the neck that might impair breathing.
*Turn them gently to the side to help keep the airway clear...DO NOT put anything in the mouth, it is NOT TRUE that a person can swallow their tongue.
*Do not attempt artificial respiration except in the unlikely event the person does not breathe after the seizure is over.
*If it is necessary to administer artificial respirtation, call for emergency help.
*Stay with the person and be calm and reassuring.
*Offer a ride if necessary

*With some seizures, the person may wonder around making noises or talking, they may also just stare, sometimes they may loose control of their bladder.
*If the seizure is not the obvious type, falling down, shaking, others may think the person is drunk or having a drug reaction, tell others what is happening in a calm, soft voice.
*Wait for the seizure to end naturally.
*Stay with them and remain soothing, offer a ride, if necessary.
*Protect the person from hurting themselves from steps, traffic or obstructions.

 

[Donna Kolp]

Hi Cheryl,

Jonathan, too, has had some seizures. Currently, he is on Lamictal, and seems to be doing fine. His last seizure was Sept. 2006, and at that time he was on nothing. They were not able to pin point where it came from, as they checked his electrolytes, and they were normal, and check him with a sleep deprovation EEG, which came out normal. Jonathan has had seizures in the past, but none of them were associated with the A-HUS, according the the Dr.'s. We were told when Jonathan was early on in the disease, that if you are going to have CNS involvement with A-HUS, it happens early on. He has been on Dilatin (not a good one, too many side effects to count), Depakote (he had twitches and bad ringing in his ears), and finally Lamictal, which we have seen no side effects.
As far as the TTP, I have had several different Dr.s list Jonathan's diagnosis as A-HUS/TTP. Big question mark here! One thing that Jonathan is on, that I believe helps him immensly is Aspirin therapy. He takes 81mg every three days. Jonathan's platelet count (when there is no A-HUS activity) is always well over 400, so that is why they started him on the therapy, almost 10 years ago.

[Phyllis Ann Talbot]

Thanks for starting this topic Cheryl! We actually have our neuroligist appointment on Sept. 1 - so we'll see what happens. We scheduled this after Hyde's 2nd assumed febrile seizure. After the first we had a sleep deprived EEG and it came back normal - so I'm not entirely sure what we'll accomplish at this appt - but I think you or Bill had mentioned a type of suppository you had on hand to use if Nathan seized and didn't stop in a certain amount of time? Hyde's already on so much other medication - I'm not sure we really want him on seizure medication full time - but maybe something like this would work? We'll see!!!

[Linda Burke]

Wow! I never knew about this entire field of concern about seizures - thanks for adding this Forum, Cheryl. Donna and Phyllis, I appreciate your valuable info on drug specifics and your child's seizure experiences (which must be so scary) - it would be great if you could direct us to medical references/articles if you run across articles/research that can shed light on this complex issue.

[Svetlana Finley]

Yes the same with us, when we call we can talk only to our doctors and not residency. Even we can't go to our local ER for anything even little, we have to drive to children hospital.
The doctors who are not knowing what we dealing with they make it worse..

Cheryl Christine Pallme Biermann said:

P.S. In the past, it has been very hard to get neurology to respond in a timely manner, we knew what to do with nephrology, but not neuro. In the past, we have had to get Nephrologists to interfere in order to get timely help. New fellow told us after hours never let them give us the residents on call, always ask for the attending in neurology, or to ask for him personally, finally a way to get the best help. Our kids aren't typical-we need the experts, not the newbies, or generalists.

Cheryl Christine Pallme Biermann said:

UPDATE-We met with a Fellow in Nuerology yesterday. Problems began with switching from Kepra to Depakote, (Valporic Acid). On Kepra we gave a full dose Sunday, Tuesday, Thursday, Saturday and a full dose MWF + 1/2 dose after dialysis. It is dialized out. Switched because he was having myoclonic activity. Depakote is not dialized out, but it may interfere with platelets and H&H. It did. We knew something was wrong before the labs. Symptoms were not being able to complete a sentence, extreme attention problems, very fatigued, couch potato in the extreme! Doctors wanted to make sure it was Depakote not aHUS attacking another organ. After labs confirmed it was Depakote, (iron studies, CBC,blood cultures, Depakote levels), we met again. He is also now on Cartedine(SP?) a nutrient often lacking in dialysis patients. We switched to Zonisamide or Zonegran 100mg. This is also filtered out through the liver. The final dose will be twice a day. In three days he will be off Depakote. Theories are A.) myclonic activity resulted from Kepra being dialized out or B.) Kepra CAUSED the myoclonic activity. (Go figure!) Hoping all will be straighted out by next week and we'll see the old Nathan again!

[Jessica Olivia Frysz]

Can't say that I have had this problem, no form of seizures. I guess I am the odd man out in this one. But, if there is anything else that I can help with, I would be willing.

[Donna Kolp]

Thanks Cheryl for these instructions! Sad to say, but Jonathan's first seizure I tried to restrain him :(

Cheryl Christine Pallme Biermann said:

FIRST AID FOR SEIZURES

*Stay Calm.
*Do not restrain the person or stop movements.
*Clear the area of sharp or hard objects that might harm them.
*Cushion their head.
*Time the seizure. If seizure is over 5 min.s or another seizure occurs call for emergency help.. (aHUS patients should always let their doctors know when a seizure has occurred.)
*Loosen anything around the neck that might impair breathing.
*Turn them gently to the side to help keep the airway clear...DO NOT put anything in the mouth, it is NOT TRUE that a person can swallow their tongue.
*Do not attempt artificial respiration except in the unlikely event the person does not breathe after the seizure is over.
*If it is necessary to administer artificial respirtation, call for emergency help.
*Stay with the person and be calm and reassuring.
*Offer a ride if necessary

*With some seizures, the person may wonder around making noises or talking, they may also just stare, sometimes they may loose control of their bladder.
*If the seizure is not the obvious type, falling down, shaking, others may think the person is drunk or having a drug reaction, tell others what is happening in a calm, soft voice.
*Wait for the seizure to end naturally.
*Stay with them and remain soothing, offer a ride, if necessary.
*Protect the person from hurting themselves from steps, traffic or obstructions.

[Cheryl Biermann]

Just a precautionary note to kiddos with seizures...when taking your child to the neurologist, here are questions to bring with you, especially if you suspect changes are in the works. What is the dose maximum for a patient if they are a renal patient, is this is dialized through the kidneys & does it get dialized out?, what are the side effects of the drug? Can you take levels of this drug? How do you take levels? When do you take levels, (especially important if they are dialyss patients), if new to seizures, ask what kind of seizures are we seeing? What do other types of seizures look like? Will having a sleep study help my child? Does anyone else have any suggetions? The reason I put this here, is because we are still struggling with seizure activity and now there is a possibility he is on too much medication for his weight and condition! It might be a good idea to get together with the nephrologist and ask them what they want to know before you meet in neurology as well, wish I had remembered to do that!

[Linda Burke]

Wow - this is terrific info that every aHUS patient should print out and have in his/her care plan! Thanks for adding such valuable input (thought I'm sorry that Nathan's continuing to struggle with this aspect of aHUS).

Cheryl Christine Pallme Biermann said:

Just a precautionary note to kiddos with seizures...when taking your child to the neurologist, here are questions to bring with you, especially if you suspect changes are in the works. What is the dose maximum for a patient if they are a renal patient, is this is dialized through the kidneys & does it get dialized out?, what are the side effects of the drug? Can you take levels of this drug? How do you take levels? When do you take levels, (especially important if they are dialyss patients), if new to seizures, ask what kind of seizures are we seeing? What do other types of seizures look like? Will having a sleep study help my child? Does anyone else have any suggetions? The reason I put this here, is because we are still struggling with seizure activity and now there is a possibility he is on too much medication for his weight and condition! It might be a good idea to get together with the nephrologist and ask them what they want to know before you meet in neurology as well, wish I had remembered to do that!

[Linda Burke]

Oh my heavens - I can't imagine how upset you all must be..... Although it would take nerves of steel and an objective nature for you to proceed as follows, the camp must review their standard operating procedures and totally revamp the safeguards for the children in their care. I'd state the facts, ask them to assess/rework their procedures and safeguards, and offer to review their work to see if the changes would assure that this will never happen again....to any camper!
So sorry this happened - very scary to you all, but hope all Nathan is doing well now.

Cheryl Biermann said:

No matter how well you are prepared, sometimes you need to count on others...

Well, Nathan just got back from Camp Okeweena with a group of children, doctors and nurses from our home hospital. They drove from St. Louis to Tennesse, just outside of Nashville. We packed, planned and went over treatments and meds for months.

Hemo dialysis at camp is at 5:30 in the morning across the camp is where they had Nathan bunking. The nurse took him to dialysis and they arrived on time, but he hadn't had his meds. Nope, not even the seizure med. For some reason, he didn't get his seizure med until 20 minutes was left on his treatment...his potassium dropped to 2.8 during dialysis and he had a seizure and stopped breathing. He turned blue. I am SO angry! What is the excuse? I know he is hard to get out the door, but wouldn't you give someone at least their seizure med?

Does anyone have any ideas on how to handle this bungling? The nurse in question is a pretty good nurse, but I don't know if he understands about seizures and dialysis...