My 13 1/2 Month Old Has Epilepsy

Hi E.-

I'll keep this short as so many others have provided the necessary information. My daughter had brain damage at birth. She has been diagnosed with CP, microcephaly, Cortical Visual Impairment and at birth, was diagnosed with epilepsy. She was given phenobarb for her first three months. Recently her teacher thought she had a drop seizure which she is at very high risk for.

I'm sorry that anyone else is going through anythign similar to what we have been through. I love my daughter more than you can imagine, but it is incredibly difficult.

There is a ton of support and services. Call your regional center and get started so your daughter can get the help she needs. You should get a combination of therapy and financial support.

Lastly, has your daughter been given an official diagnosis? Soemtimes that helps in securing services.

Good luck to you!

You need to contact your local Regional Center as well as Early Start (different from Head Start) to start getting the help that your daughter needs. The Regional Center will assign your daughter a social worker to follow her through her life. This social worker is your daughter's advocate -- and yours too -- to help you negotiate all the things like SSI, IHSS, IEP, IFSP and the whole bowlful of alphabet soup that you will soon be encountering.

Early Start has a couple of differnt names based on where you live in the state. Essentially, it is an early intervention program for children age birth to 3. They should provide you with a physical therapist (maybe even in the home, depends)if you need one.

To find the numbers for both, start with your local school and/or school district. Tell them what you are looking for (the regional center and the early intervention program). The person on the phone might not have a clue so ask them "who would know?" And keep calling the next phone number and the next one until you find the right services.

You must be proactive for your daughter. You must be vocal. You must be comfortable with the idea that people think you are a B****. There is not enough money to supply all the children all the services they need. The mothers who advocate the loudest get the best services.

I have a 10 year old son with autism and have been doing this the past 7 years. If you want help finding phone numbers, guidance in how to negotiate the maze or support for the b****ing, contact me. I am NOT an expert but am an experienced mother.

Friends of mine have a 3 yr old son with cerebral palsy. He is also developmentally delayed, not walking and almost crawling, like your daughter. I'm not sure about the SSI process, but i'm sure you can get information on that either online or by calling SSI. I believe my friends are already in the program and it is helpful. It's a benefit for you and your daughter so apply asap! I also know that my friends are engaging their son in physical therapy at least once per week...possibly more...and they feel that it is definitely assisting his growth and development. It's a good idea to have professionals work with your daughter asap and be able to help her development and also evaluate her progress. Of course you would be involved in the PT sessions too, so you would learn what exercises and things to do and not to do as well. It is definitely a tough thing to go through, but through my friends, I see them learning to be strong and make the best decisons for their son. I'm sure you will get to that place as well. All the best to you and your daughter!

My daughter doesn't have epilepsy, but she is in a similar physical situation. There are problems with the Motor Development part of her brain. She is 9 months old and has really only been rolling over for about two weeks now. She does not sit unaided, and her arms do not have a lot of coordination. We need to start Physical Therapy soon. In addition, she has very poor vision (most probably Cortical Visual Impairment.) I also have a four year old with no developmental delays.

I don't know how much you have looked into County Services, but the Regional Center in Oakland is a good place to start. So is California Children's Services (also in Oakland). In addition, check with your local school district. Yes, the school district. They have programs for the 0-3 age range that may be able to help you.

Hi E.,
I'm sure many of the other moms can give you addresses for support sites. I am an early childhood specialist and CranioSacral Therapist. I would go with the physical therapy. I believe that CranioSacral Therapy could help her so ask if the physical Therapist is trained in craniosacral therapy, many are.
D.
Mom and Grandma
retired teacher and early childhood specialist
CranioSacral Therapy and Pregnancy Massage

Hi E.,

I feel bad for you and your daughter. My friend has a son with Autism and a few other problems going on with him too. She tried giving him MaxGXL. What a HUGE difference it has made with him!!! He's been taking it for a few weeks now. He's talking, not so touchy about being touched and he'll not only look at the neighbors puppy but actually pet it instead of scream at it. Anyway, the site they use (me too) is www.maxgxl.com/maxmagic. AND if you're in Redding there's going to be a free Health & Wellness class at 7pm. The guest speaker will be Dr. Steven Davis NMD. He'll be talking about Autism and other health problems. If you want to know more about this class, let me know and I'll look for the flyer so I can tell you what all it says.

N. :o)

Hi E.. Call the Warmline Family Resource Center at 800-660-7995. They are near the Arden area off of Hurley. They will help walk you through the process of services, SSI, etc. Your daughter will also qualify for Regional Center where you can get respite and other services. I have a 2 y.o. with epilepsy. His is a progressive type so it will only worsen as he grows and has the chance of shortening his life span. It's a scary thing to live with. If you ever need to talk with someone that understands or vent away, please feel free to e-mail me at ____@____.com.

L.

have you tried contacting regional center f the east bay. i work with developmentally delayed children and tis is a huge resource for them and you. i am not sure if epiliepsy is a qualifying condition, but due to her delays this should qualify her. also has anyone mentioned taking her to a headstart program for therapy?

E.,
You should contact your local Early Start program as soon as possible if you haven't already. They have many programs for children up to 3 years old and they are for free. I had my son in an autism program for a year and it was great. They can do physical therapy as well. I don't know how to reach them in Sacramento, but look them up on line. V.

E.

This darling need to get hooked up with early intervention services. Each county has a central "clearing house" type organization that will help you get hooked up with all the services that she can get. In Merced it is Central Valley Regional Center, in Stanislaus county it is Valley Mountain Regional Center. She needs all kinds of intervention--the more intensive the help earlier in life, the better she will do later Is she going to a pediatric neurologist for her seizures?? If not, she needs too--it sounds as if her seizures are not well controlled, and phenobarb alone is not enough--there are LOTS of other anticonvulsants out there, and she needs the one that will work best for her. (Phenobarb is not good for petit mal or atonic seizures).

Good luck--and don't be afraid to be a "pushy" mom to get the help you need for this little one. She deserves it.

S.

Hi E.,
Have you been in contact with your local regional center. If not, please look at the attached website for the Department of Developmental Services for the local regional center near you. They are non-profit organizations there to help you find services you and your daughter will need.
http://www.dds.ca.gov/rc/rclist.cfm

I have a good friend whose son has epilepsy as well. She has done an incredible job figuring out what foods trigger his symptoms and really getting him under control. She has done a ton of research.
Her name is Tracy Steele and her number is ###-###-####
People call her all the time for help.
C.

Hi. I think you should get additional services from the Regional Center of the East Bay. Google them. The wait period can be up to 3 months, but if your daughter qualifies for services, she may be entitled to speech, occupational, and physical therapy at no cost to you. Please use The Regional Center of the East Bay as a resource for your daughter. It sounds like you need all the support you can get right now. The earlier you start with interventions, the better quality of life your daughter will have. Once your daughter turns 3 years of age, the Regional Center will turn her case over to the school district. She will go through another round of assessments and will be placed appropriately in a school setting, as well as physical, occupational, and speech therapy. Call them today! ###-###-####

Dear E.:
Please look in to www.iahp.org for a way to treat her without medications!!! Check out the section about brain-ijured children... Love, G.. :0)
P.S. They will have a 5 day intensive course on April 21-25 I am going!!!

My great nephew began having seizures when he was almost 2 weeks old.he was admitted into the valley children's hospital and went through some pretty painful tests and was given phenobarbital,which seem to calm the seizures.in the meantime,prayers everywhere was going up for him.loved ones would lay their hands on him and pray for complete recovery.soon after he was released from the hospital,he was improving so much that the doctor gradually reduced the dosage of his medication and soon was completely healed.now he is almost 2 years old and a live wire with good health.i'm sharing this with you to reassure that god loves your little girl and not to give up hope for her getting well.your faith joined with others will get you both through this trying time.healing is for everyone who believes.i will be praying for shailyn.also about signing up for her ssi,it may be a good idea.it can pay for unexpected expenses that your daughter may have.my grandson at 5 months old had to have heart surgery to repair a hole in his heart,and he is still recieving ssi with medical which really helps out.

Hi E., I have a 27 month old who became sick at 7 months and had a severe case of epilepsy (25-80 seizures a day). It looks like you're in Sacramento, so I'm not sure what services there are there, but you do need to contact your Regional Center. My son gets physical therapy and occupational therapy 2 times a week through California Children's Services (a state organization usually administered by your County or school district). Then through the regional center he gets an early interventionist once a week that works on developmental skills, and a speech therapist once a week. We also take him to water therapy that we pay for on our own once a week. He is significantly delayed, doesn't walk, says only 6 words or so... Also, our regional center pays for 30 hours of babysitters time/month to give me and my husband a break (we both work full time on top of taking him to his 7+ appointments a week, and we have another son too!), and they help pay for a 1:1 aid at a special day care.

So, there are tons of services out there, but they are hard to find. We get so many services because I spend a lot of my time finding and applying for them. Frustrating that no one tells you all of the available services.

My son has a different type of epilepsy than your daughter, but we went through 8 medicines (he's still on phenobarbital and 2 others) until we started him on a special diet (the ketogenic diet) that finally stopped his seizures a month ago. These illnesses can definitely take a toll on the family. But if you start applying for services, you'll find that you can get a lot of help. You may also find a support group for families in similar situations. Your Regional Center web site should have this info.

Stay strong, best of luck!
M.

hello again (I just read that you are part of Alta RegionalCenter) so you may have a case manager who will give suggestions for healthcare, SSI and play - if you don't get answers to your questions ask to a supervisor

I don't the services there but Early Intervention is what you want - If something is not available maybe you could help to get it available; Easter Seals does in home play and living skills

don't give up - your family can have a great life

best wishes
B.

if you live in California call The North Bay Regional Center in Santa Rosa at ###-###-#### and they will tell you who to call

press 0 to speak to the receptionist - she/he will know of other resources if you are not in this state.

There is lots and lots of help out there; answers and support

and peace for you and how you can be the best for your baby and 6 year olf

B.

Hi,
My daughter, my sister as an adult & 2 young girls I know in the niegborhood all had siezures and were healed by Osteopathy. I took my daughter to a local one 'known for curing seizuring.

I cut and pasted the information for a bay area college below - you could contact them and possibly get a reduced rate or maybe even free treatments for your baby. It is certainly worth trying. Osteopathy is 'alternative medicine' but they are considered medical doctors( it requires years of study) and health insurance is required to cover them under ca law.

Good Luck getting the very best care for your baby,
R.

Dr. Annette Aalborg
Campus: Mare Island
College: College of Health Sciences
Department: Public Health
Title: Adjunct Faculty
Phone: ###-###-####
Fax: ###-###-####
E-Mail: ____@____.com
Office: Wilderman Hall, Rm. 209

E., I'm so sorry to hear about your daughter. That must feel very scary. My son was diagnosed with epilepsy this past summer -- he has complex partial seizures and he's 6 1/2. It's has been a really challenging year.

Have you looked at the Epilepsy Foundation website? They have a portion on there where you can ask questions to other parents of children with epilepsy. I don't really have any answers for you because this is all new to me, but you might find someone there who has some good information.

My thoughts and prayers are with you and your daughter....

Best,
S. Robbins

Hi E.,
Has your daughter's doctor referred her to Early Start yet? If not, I recommend you contact them for an evaluation in order to get services that are completely paid for by the state. Due to her medical condition she will most likely qualify for various early intervention therapies that can help her develop her skills in all areas (physical therapy, occupational therapy, speech and language therapy for example). If you can get services from an early intervention program through early start then you can also have contact and support from other parents/ families who share similar experiences. I also hope your daughter is being treated by and monitored by a full medical team so they can continue to successfully regulate her medication and progress. If you haven't contacted Early Start, I highly recommend that you call and describe your situation and request an evaluation. They have approx. 45 days once they receive your request to complete an evaluation. Depending on where you live, such as San Jose, you would contact San Andreas Regional Center unless you are in a different location. Getting services at such an early age for your daughter will really make a difference! Best of luck!
Jen (speech therapist)

I am sorry life is so rough right now. First, ask your MD's office for the names of some other moms willing to talk and share their advice. The office nurse usually has one or two who offer to be of support.

Next, have you talked to a social worker? Hopefully you can get one through your MD's office or they can refer you to one....so they can help you with the overwhelming process for SSI.

I wish I could be of more help. Epilepsy does take time to get managed with meds, so hang in there. I know how scarey seizures can be. It will get easier.

Stay well.
M.