HELP! - 6 1/2 yr old with uncontrollable seizures

[rahulsdad]

Dr Joshua,

My nephew, Rahul, is 6 1/2 years old and has been in the Pediatric ICU since Nov 24th. About 4 or 5 days before being admitted to the PICU, he showed symptoms of a standard viral/bacterial infection with high fevers, vomiting and aches. For the most part, there was nothing out of the ordinary that the pediatrician could see at the time. However, things turned for the worse on the morning of the 24th when he began having seizures and lost consciousness. Rahul has not regained consciousness ever since. A team of neurologists, infectious disease and critical care doctors have been working with Rahul around the clock to get his seizures under control and treat his condition with no real success. Rahul has been on meds such as Pentobarbital, Isoflurane and Ketamine with no real success. The doctors have been able to get Rahul off these meds and currently have him on medications such as Versed (Midazolam), Clorazepate, Triple Bromides, Keppra, Phenobarbital etc in the hopes that the seizures will subside. However the meds themselves are not working as they hoped. The most recent MRI ( 1/8/07 ) shows tissue loss (20%) and some brain shrinkage as well. The doctors are running out of options and are now not very optimistic.

My family and I are desperate to get another opinion as quickly as possible and this is where any assistance you can provide would be greatly appreciated. Maybe the doctors are missing something that you may be able to help with. Please let us know if you have any suggestions.

Neil

[rahulsdad]

Dr Joshua,

I had posted this topic/question over 3 weeks ago but have not received any reponse. Can you please take a look at my question and reply back as soon as possible. It is very important.

Thanks.

Neil

[Purple98Lady]

Hi Neil

Welcome back. I'm sorry you haven't gotten an answer as yet. Dr. Joshua has been in and out and very busy at present time. I'm sure you will get an answer soon. What is Rahul's condition at present. I hope some improvement. Any new tests reports? Sorry I can't be of any help as I'm not a Dr. :(

Purple98Lady

[Dr. Joshua]

Hello Neil, I'm sorry I haven't gotten to your question earlier. In a very complex situation such as this one, it is very hard if not impossible to give recommendations, because I do not have available to me all the information that Rahul's attending physicians have - on the contrary, I have very limited information.

May I point you to an earlier answer of mine to a similar question:
http://askdoctorjoshua.com/2006/12/02/cause-of-seizures-status-epilepticus-in-child/

In that answer I've presented some talking points regarding strategies on evaluating and treating childhood status epilepticus, which also (based on your description) may at least partly apply to your nephew's situation. I can see your nephew is being treated by all the appropriate specialists, I'm sure they are doing all they can to manage the illness - so I'm afraid there is probably nothing of value that I could add over the Internet. From the history it does seem that the infection started all this, and maybe he developed meningitis or encephalitis which in turn resulted in uncontrollable seizures. Is he presently in burst-suppression anaesthesia? Have the doctors isolated an infectious agent that they think may have caused this? If so, do you know what it was?

I'm sorry to hear of your nephew's serious illness.

[rahulsdad]

Dr Joshua,

Thank you for replying back to me. I appologize for mistyping but Rahul is my son. My brother was helping me draft the message and he wrote nephew out of habit.

Let me start by answering some of your questions:

Is he presently in burst-suppression anaesthesia?
Rahul has been on meds such as Isoflorane and Pentobarbitol however when they were weaned off, the seizures returned. He is currently on Midazolam and Phenobarbitol. We are in the process of weaning Rahul off of Midazolam gradually. The doctors introduced Corticotropin (ACTH) to Rahul yesterday and we are now in a wait and see situation. ACTH was recommended by a highly regarded neurologist in India who has had some success using this drug on children.

Have the doctors isolated an infectious agent that they think may have caused this? If so, do you know what it was?
The doctors never found the actual infectious agent that caused this. They did tests upon test with no success. That has been one of the most difficult things to comprehend.

Today, Rahul still continues to have seizures regularly about every 5 to 10 mins for about 30secs at a time. He has also not been conscious since 11/24/06. This is partially due to the meds as well as the damage in the brain.

We are still hoping (and praying) that something will reveal itself that will help my boy. I will visit your post that you listed below to see if any info there can help us. Please let me know if you can think of anything else no matter how trivial it may seem.

Thanks again.

Neil