Seeking Advice About Mesial Temporal Sclerosis

Dear F.,
These medications are very specific. I assume you are working with a good pediatrician? Your child's profile is also very specific. While it can be very challenging to find the best match between your child's needs and medication, please don't expect an instant fix. Sometimes side effects are very different for different people. Definitely check out websites like WebMD, the May Clinic, Stanford and Kaiser.
San Andreas Regional Center is in Campbell, right under the water tower in the old downtown section. It is a fantastic organization filled with wonderful, knowledgeable and sensitive people. The Center is an organization that supports the full gamut of children with all sorts of special needs, not only physical needs such as seizures, but also behavioral, emotional and mental needs. Please contact them at your earliest convenience.
Also contact Parents Helping Parents in Santa Clara, (on Olcott, parallel to Lawrence Expwy, just off 101). They are a resource agency started by parents of children with special needs over 30 years ago. They have classes, support groups and sibling programs. They will find parents who are in the same boat as your are, who will have many resources and tried and true strategies to support you and your family.
These agencies are there to serve you and your child, have loads of resources and support, and are very well funded!

Hi F. -

I am not the mother of a special needs child, but I am a child psychologist and longtime special needs teacher. I have worked with countless children and adults with seizure disorders, and here's what I can tell you:

1. The disease can be progressive, but usually only if there is not early intervention and regularly administrated medication. The sooner you get a diagnosis, the sooner your child can be put on seizure medication. Every time your child has a seizure, a certain amount of brain damage is inflicted on the brain, causing the seizures to come more frequently, last longer, and cause more brain damage.

2. Anti-seizure medication will be her saviour. I suggest you have her placed on it as soon as possible to minimize the amount of damage to her brain. The benefits FAR outweight the risks, and there are many different kinds of anti-seizure meds that can be used. Seizure medication, perhaps in tandem with other medications, will do worlds for her learning and attention issues. The neurons in her brain are not firing in a way that is condusive to learning or attention, and the medcation will help immensely with these problems.

3. ABSOLUTELY contact San Andreas Regional Center: your child is legally allowed to receive early intervention, paid for by the state. This includes setting her up with an IEP (individual education plan), behavioral therapists, occupational therapists, speech therapists, physical therapists at NO COST TO YOU. They will provide your child with specialized care tailored specifically for your child. No other place will be able to give you as much attention and personal consideration for what is best for your daughter than the regional center. PLEASE contact them as soon as possible.

SO, there are services out there and streets to take to make your childs life as good as it possibly can be, and be provided with all the resources needed to9 help control her seizures. Contact the regional center, and visit a pediactric neurologist so that she can be put on some medication soon.

Feel free to ask me any more questions - my email is ____@____.com

Hi F.,

Have you tired a chiropractor? I wish I could refer one to you, I used to go to one in Atlanta, Ga and he was awesome. And he got a lot of testimonies of how good chiropractic is especially for kids. At least look into it. What I love about Chiropractor is that we dont have to use medications which always has side effects.

Take care and God bless you!

Regional centers offer all kinds of support services. Educational services, where they have classes or books you can read to learn about conditions. They also offer respite care where they hire someone to come in the house to watch your child (trained person) so you can take a break. They also made medical referrals as well as basically anything you can think of that is a support service. They're number one goal is to keep your child in the home and healthy as well as keeping the family healthy and intact. My son has autism and Valley Mountain Regional Center gives us services like respite and educational stuff. Have helped a lot.

I don't know anything about Mesial Temporal Sclerosis but my niece and several friends have children with seizure disorders and delays/challenges that result and I really want to encourage you to jump at the Regional Center and California Children's Services! My niece is 2 and just a few weeks younger than my baby and she was about a full year delayed when they started with the regional center. She is progressing really well now (there is still work to do and she still has seizures so it will be a long haul). My other friends have two kids with the regional centers and their kids have caught up! There are so many resources that the regional centers will get you hooked up with and it is all free. Take full advantage of this great program for your child's sake!

Hey, F.. I don't know anything about Mesial Temporal Sclerosis, but I work for Harbor Regional Center. The regional centers are federally and state funded agencies whose express purpose is to aid clients and families with developmental disabilities. Regional centers are able to advocate for our clients and assist in acquiring any number of resources. They also can assist in getting your child the resources they are entitled to from her school district. It would be a great idea to contact the regional center. Here is the contact information:
San Andreas Regional center
300 Orchard City Dr., Suite 170
Campbell, Ca 95008
###-###-####

I hope this helps. Take care and good luck.
~E.

Hello F. R- I know how you feel, my youngest daughter has Epilepsy. She is active with San Diego Regional Center. They are very proactive for the kids that are their clients or "consumers" as they are called. They have a lot of resourses for you as a parent and also for your child. If you want to find out more about what Regional Center has to offer you can look at the San Diego Regional Center's Website which is www.sdrc.org. Also here is the website for the regional center in your area www.sarc.org. I hope this helps you.

Feel free to contact me anytime.
S. R

I know NOTHING about Mesial Temporal Sclerosis, and little about seizures. I was only wanting to enlighten you about what my friend (a Doctor/ Medical Director) said is part of the cause for seizures. He said that on a brain scan just before the onset of a seizure most patients will show increased activity in one part of their brain over and over again. I think he said it's in the area where brain development begins. He claims that it is actually an indication of high intellect, as is ADD. Both are indications that the mind is moving faster than the body, and the body is just trying to catch up. Anyway, I just wanted to tell you his positive view of it all. Take care, and by the sounds of it, take all the help you’re being offered. Good luck, -J

F., you have just been handed a bunch of information in a foreign language about your lovely daughter and I am so sorry for that! I do not know about Mesial Temporal Sclerosis, but I may be able to share some insight into your other questions. My son also had seizures. He was put on Phenobarbital first - but it was not a good fit for him and it made him very sleepy. He then was put on Keppra - great fit for reducing the seizure activity. Regional Center is a wonderful place - there you will be assigned an advocate for your child. This advocate is there to help answer your questions, help you navigate the health care system and help your daughter and your entire FAMILY through this diagnosis. You will meet other special parents that can be of great support to you. Regional Center has a library, support groups and sibling activities to participate in as well. Regional Center can also offer what is called respite nursing. Once a month a licensed vocational nurse can come and sit with your daughter so you and your husband can get out for some much needed alone time! Regional Center has the ability to cover the cost of this nurse. California Children's Services (CCS) is also a great institution. They will assess your daughter and determine what she needs as far as physical therapy and occupational therapy. This is a great opportunity for her to have one on one therapy. Both of these programs are aimed at helping you daughter. You can also help you daughter by making sure you are getting enough sleep, you are eating healthy and you are getting time to nourish yourself. I hope this helps! I too, joined Mamasource today! Take care and God Bless!

Hi F.,
I know nothing of MTS, but my son has had seizures since he was 6 and has been on Keppra, which works wonders. He's only had seizures when he's run out of meds or forgotten to take them. And I mean he's gone like a week and not taken them. Then he's had mild seizures not even the huge things he used to get. My sister in law also has seizures and I believe she was also on Keppra and something else. The only thing I heard her say once was that the doctors told her when she was ready to have children she would have to go off her meds for a year or more before she could conceive because the risk of having a down syndrome baby or baby without a limb or some such thing would be about 60% if she was on the meds still. Now I wonder if its the same for boys since my son is on meds. I mean ya know will he pass on some bad gene or something. But my son is just going on 12 barely so I've yet to really ask his doctors. I know it sounds silly, but ya never know with these things.

I would take all the help I can get from the hospitals, look into all the offered programs its all really a Godsend when you're feeling lost.

Hi F.- I have not heard of your daughters diagnosis before. I am going to assume that it is a seizure disorder. My cousin and my sister both have seizures and take meds. They are both doing great. Seizures break through from time to time but the meds tend to keep them under control. My son is hooked up with East Bay Regional Center. He receives speech, mental health and early intervention help( Developmental stuff). Unfortunatley he will not qualify after age 3 though. However I do know that your daughter would qualify because of the seizures. I would definatley get her hooked up. They have so many different programs through regional Center. Good Luck! V.