Doose Syndrome - Newly Diagnosed | Epilepsy Foundation

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Hello everyone, I am new here and seeking any help and advice I can find.

Our lives changed on Thursday afternoon when my son began having a seizure. We called 911 and when they arrived he was still seizing. They put in an IV and gave him meds to help stop the seizing but it did not. He was life flighted to our closest Children's Hospital and upon arrival his seizure was still going. After 1 hour and 30 minutes and many different medications to stop the seizure, it finally did. They said he had a Refractory Status Epilepticus seizure. It was terrifying. I had no idea what was going on and we thought we were going to lose him. We've been in the PICU since then and he has had many tests (blood work, a CT, an MRI, a Spinal Tap, and he's being monitored via EEG 24/7). He had another seizure that went on for more than 5 minutes, but thankfully after just one anticonvulsant it stopped. He has had 3 different types of seizures over these last few days - Tonic Clonic, Myoclonic, and Absence, all confirmed by the EEG and his neurologist. She said that the EEG shows he has been having multiple seizures throughout the day. We finally got an explanation as to why he started having seizures all of a sudden - Doose Syndrome. This is what his neurologist has diagnosed him with. She spoke to us a bit about it and I am so scared. Looking online has only made me even more fearful. I still don't understand how everything changed so suddenly. My healthy little boy has a rare, difficult to control epilepsy syndrome. His twin and him are preemies (they were born at 33 weeks); he had his complications and we had a few scares, but after 36 days in the NICU he began to grow, get stronger, and has been physically and developmentally on point with no issues other than some minor ones that are well controlled and not life threatening. Nothing could compare to what we have been through and how scared we have been for his life over these past few days. It wasn't until today that he was a bit more alert, though he is still weak, groggy, sleepy, and still pretty out of it. We are thankful to have answers but this diagnosis is so scary.

Does anyone have any experience with Doose or any advice you can share with me? I would appreciate it so very much!

Comments

Has doosesyndrome.org been

Submitted by Anonymous on Sun, 2014-06-22 - 15:19

Has doosesyndrome.org been helpful?

Yes! I've found a lot of

Submitted by langlandc82@gmail.com on Mon, 2014-06-23 - 00:55

Yes! I've found a lot of information on there. Thank you.

There are sites with more

Submitted by just_joe on Mon, 2014-06-23 - 12:04

There are sites with more information. There are also more things beig done to find treatments and other things that can be done which will help control his seizures. They said he had a Refractory Status Epilepticus seizure I have seizures and at times I have clusters (back to back seizures) after the second seizure I take a recovery medication which stops the cluster. I am saying this because the recovery medication he was given stopped his seizures. So if it did then it may be that that medication can be used at home. There is more research beingdone daily to help come up with medications and procedures to stop seizures of all kinds, So this type of seizure can be on lists of drugs being tested but I can't be positive. I am no doctor but I do know that drug studies are being done since I have been in many. As knowledge of MAE increases, and correct diagnoses are made more readily, the success rate of treatments trialled is gradually but constantly improving. In addition, newer antiepileptic medications are proving highly effective in MAE and this too is contributing to better outcomes for our children. Various studies over recent years have shown that the ketogenic diet is extremely effective in controlling seizures in children with MAE, and is now considered one of the most successful treatments for the disorder, even more successful, according to some centres, than the more traditional anti-epileptic drugs. Parents who achieved seizure control through AEDs but with bothersome or inhibitory cognitive side effects have also chosen this form of therapy as an alternative to medication. Some children require a combination of the ketogenic diet as well as medication added, others respond completely to the diet alone. Steroids have also been successfully used as treatment for MAE in some children, either with or without accompanying AEDs. (anti epileptic drugs) I found this by typing in Doosr Syndrome in my search engine. It brought up Doose Stndrome epilepsy alliance. They do have other information but I didnt go into many to get this information. All I did was go into Treating MAE I do hope this helps and your son gets the assistance he needs. Joe.

 There are sites with more information. There are also more things beig done to find treatments and other things that can be done which will help control his seizures. They said he had a Refractory Status Epilepticus seizure  I have seizures and at times I have clusters (back to back seizures) after the second seizure I take a recovery medication which stops the cluster. I am saying this because the recovery medication he was given stopped his seizures. So if it did then it may be that that medication can be used at home. There is more research beingdone daily to help come up with medications and procedures to stop seizures of all kinds, So this type of seizure can be on lists of drugs being tested but I can't be positive. I am no doctor but I do know that drug studies are being done  since I have been in many. <strong>As knowledge of MAE increases, and correct diagnoses are made more readily, the success rate of treatments trialled is gradually but constantly improving.</strong> In addition, newer antiepileptic medications are proving highly effective in MAE and this too is contributing to better outcomes for our children. Various studies over recent years have shown that the ketogenic diet is extremely effective in controlling seizures in children with MAE, and is now considered one of the most successful treatments for the disorder, even more successful, according to some centres, than the more traditional anti-epileptic drugs. Parents who achieved seizure control through AEDs but with bothersome or inhibitory cognitive side effects have also chosen this form of therapy as an alternative to medication. Some children require a combination of the ketogenic diet as well as medication added, others respond completely to the diet alone. Steroids have also been successfully used as treatment for MAE in some children, either with or without accompanying AEDs. (anti epileptic drugs) I found this by typing in Doosr Syndrome in my search engine. It brought up Doose Stndrome epilepsy alliance. They do have other information but I didnt go into many to get this information. All I did was go into Treating MAE I do hope this helps and your son gets the assistance he needs. Joe.

There are sites with more information. There are also more things beig done to find treatments and other things that can be done which will help control his seizures. They said he had a Refractory Status Epilepticus seizure I have seizures and at times I have clusters (back to back seizures) after the second seizure I take a recovery medication which stops the cluster. I am saying this because the recovery medication he was given stopped his seizures. So if it did then it may be that that medication can be used at home. There is more research beingdone daily to help come up with medications and procedures to stop seizures of all kinds, So this type of seizure can be on lists of drugs being tested but I can't be positive. I am no doctor but I do know that drug studies are being done since I have been in many. As knowledge of MAE increases, and correct diagnoses are made more readily, the success rate of treatments trialled is gradually but constantly improving. In addition, newer antiepileptic medications are proving highly effective in MAE and this too is contributing to better outcomes for our children. Various studies over recent years have shown that the ketogenic diet is extremely effective in controlling seizures in children with MAE, and is now considered one of the most successful treatments for the disorder, even more successful, according to some centres, than the more traditional anti-epileptic drugs. Parents who achieved seizure control through AEDs but with bothersome or inhibitory cognitive side effects have also chosen this form of therapy as an alternative to medication. Some children require a combination of the ketogenic diet as well as medication added, others respond completely to the diet alone. Steroids have also been successfully used as treatment for MAE in some children, either with or without accompanying AEDs. (anti epileptic drugs) I found this by typing in Doosr Syndrome in my search engine. It brought up Doose Stndrome epilepsy alliance. They do have other information but I didnt go into many to get this information. All I did was go into Treating MAE I do hope this helps and your son gets the assistance he needs. Joe.

Doose Syndrome - Newly Diagnosed