Finding the right doctor

[mom22inga]

Hello everyone!
My son is 5, and was diagnosed with ACC when he was 2 months old. We were seizure free up until this year, when he started acting very aggressively. The neurologist explained that these aggressive outbursts are being caused by partial complex seizures in the temporal lobe.

I'm frustrated because the medication he's on (Keppra) doesn't seem to be working at all - the seizures/episodes of aggression have gotten worse on the Keppra. The doctors tried weaning the Keppra down, but that didn't work, so we're working on getting his levels built back up.

We're in south GA, where the only doctor who is actually listening is our pediatrician. The problem is that we can't see him all of the time due to office rules, and the three other pediatricians in the office don't seem to want to help.

Can anyone recommend a good pediatric neurologist or other specialist in the southeast US who might be able to help? Thanks to anyone who can help us out - we really do appreciate it!

[matthewsmom]

Hello mom22inga,

Welcome to the ACC message board.

My son, Matthew, also has ACC and he was diagnosed when he was 4 months old. He is 17 years old now.

I'm so sorry that your 5 year old son started having seizures this year. It must be incredibly frustrating to not see significant positive results from the seizure medication he is taking (Keppra) and to actually see his seizures and aggression getting worse. My heart goes out to you and I can understand your desire to seek the help of another pediatric neurologist.

Because you wrote that your son's Neurologist told you that his seizures are in the temporal lobe, I assume that your son has had an EEG or more than one EEG that showed seizure activity?

Is Keppra the only seizure medication that your son's Neurologist has tried, if I may ask?

There is a very large ACC support group that I belong to called the ACC Listserv and the group has hundreds of parents from all over the world who have a child with ACC. There are also some adults with ACC involved in the ACC Listserv.

There are a lot of parents on the ACC Listserv who have a child with ACC who take seizure medications. The topic of seizures and medications comes up often in the group. The input from other parents could be very helpful and I think you could even possibly find another parent in your area of South Georgia who could recommend a pediatric neurologist.

Join the ACC Listserv support group:
lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1

If you would rather not join the ACC Listserv but would still like the help, suggestions and input from other parents who have a child with ACC, who have seizures and are taking medication, I would be happy to post the note that you wrote here to the ACC Listserv (on your behalf--with your permission).

Would you like me to post your note to the ACC Listserv for you? I can send you any replies received from other parents to your private messages or e-mail, if you like. Just let me know if you would like me to do this.

My thoughts and my prayers are with you and your son.

Sandie *Mom to 17 year old Matthew with ACC in Oregon*

E-mail: [e-mail]

[mom22inga]

Sandie:

Thanks - I submitted my info to Listserv. I appreciate the help in getting involved with other parents. I'm stumped here and just need some advice.

We've tried two medications for Isaac to date: Keppra (which he's currently on) and Triliptal (which didn't stop the seizures and made him sleep all of the time). We're not opposed to trying different medications, we just want a neurologist who will let us know the game plan ahead of time so we can prepare.

Our current neurologist has no time for us, and just keeps telling us to be patient and wait to see if the medication works. I understand this, but just want to know about side effects. This agression is exploding - Isaac tried to attack his 8 year old brother today with a baseball bat. No one besides my husband and I, and our wonderful pediatrician, seem to think this is abnormal. No 5 year old should be threatening others with a bat - that's completely abnormal by any standard and needs to be addressed. Isaac has also never been prone to aggression. This just started 3 weeks ago...

If any parents can give us some advice on how to handle this, we would appreciate it.

Isaac has had seven EEGs to date to pinpoint the activity and to check the progress on the medication. His last EEG was last Thursday, and we're still waiting for results. Luckily (? or not ?), Isaac had one of these aggressive episodes during the EEG. I had the tech note that on the computer so that the neurologist reading the EEG could talk to me specifically about that timeframe, about 2 minutes into the EEG.

We've now started giving him Valium three times a day to head off any aggressive tendencies. It just doesn't seem right, to me, to be giving a child valium to help him get through the day.

I really appreciate your help and support, and welcome any advice and guidance that you have.

Ami

[matthewsmom]

Hi Ami (mom22inga),

Thank you for your reply and for all of the additional information that you shared.

I'm sorry for everything that your family is going through right now and for the effects that the seizures are also having on your son, Isaac.

I hope that the seizures will soon be under control and that the aggression will stop. Isaac and your family will be in my prayers.

I just sought input (for you) from the three other ACC support groups that I belong to. I have already received a few replies from other parents and from one adult who has ACC and seizures. I will post those replies here for you to read.

And I will continue to send you any additional replies from other parents who have a child with ACC.

Sandie *Mom to 17 year old Matthew with complete ACC in Oregon*


Medical Disclaimer: Please be advised that these replies are not medical advice. Please seek the advice of a qualified physician for your child's medical needs.


1st Reply from Parent:

"Hello,

My son Riley (5 in 2 weeks) has a DCC and seizures along with many other medical problems. His seizures started about a year ago with focal seizures and since then has progressed into a mixed bag of multiple daily partial and generalized seizures, uncontrolled by meds. Right now he is taking depakene, zarontin, keppra and carnitor. One thing about Keppra is it can cause aggressiveness. Its one of the biggest reasons kids come off keppra. Kids with developmental delays are at a higher risk for that side effect. Sometimes adding a B6 supplement can help with the "keppra rage". As far as finding a good pediatric neurologist in your area, you can always go through the Epilepsy Foundation, they have an online database you can search. The foundation can refer you to a neuro that specializes in seizures. Good luck!"
Jessica


2nd Reply from Parent:

"My son is 3 and he has been having seizures since he was 8 months old. He's been on many different meds including depakote and keppra. Up until a couple of months ago he had been on both keppra and carbatrol (tegretol) with no sucess. The docs decided to add frisium to the mix and it seems to be working for him. The next step is to slowly take him off keppra. His sizures also start on the temporal lobe and started as focal but then generalize.
I hope this helps:)"
Emilia


3rd Reply from Adult with ACC:

"I have no doctor advice but anything in the Tegretol/ Carbitrol family makes my seizures infaniately worse...so don't let then try to say oh it's not the meds...as soon as I got off them and on to something else my seizures got better slowly."

~Sara Hydrocephalus, C-ACC, Chiari Type 1 & Epilepsy