Many parents ask me what I wished someone told me the day we found out what Aliyah was diagnosed with....
1) NO TWO NEUROLOGISTS are going to give you the exact same treatment. Neurology is a field that is not clearly understood and not much research is done on severe and rare pediatric epilepsy. So go and market for the right neurologist.
Don't like your current one, no worries, on to the next. Some may have terrible bedside manners but only you as the parent will know if the neurologist is doing everything he or she can in order to get rid of these spasms. ( Aliyah has seen over 11 neurologist, and consult with 2 or more at a time)
2) Keep a SEIZURE DIARY at all times! Describe the seizure activity and write down the time and date. And if you can describe what the child was doing before his or her seizures occurred. ( I know it sounds odd but Aliyah's seizure for a small period was stimulated by loud sounds or the "NO" shouts, especially after eating a non-Keto food while on the Ketogenic Diet)
It is also great to see if certain meds work better than the other. (We noticed a dramatic decrease in seizures while on Sabril, when comparing to Depakote or Banzel) Also note when your child is accomplishing any form of mile stone even if it can be describe to typical parents as inch-stones ( While Aliyah was taken off of Topomax we notice she was babbling up a storm, and when on Lamictal she started saying words, building up her vocabulary)
3) THERAPIES.... Your county comes out to your place and provides all of the services needed for ages birth -3 years old... After age 3 the school district takes over. In Iowa they were known as AEA, Maryland: Infants and Toddlers Program, and in New Jersey: Early intervention. The name may differentiate from state to state. (Income is NOT a factor for qualifying) If you are having trouble finding the agency call your pediatrician he or she should have the number.
Get as much therapies as possible. Aliyah is under Tricare Reserve Seleect (military insurance for Guard) with that she was entitled to Speech 1hr sessions 4 times a week, Occupational Therapy 1hr sessions 4 times a week, Physical Therapy 1 hr sessions 3 times a week, and ABA therapy 2 hr sessions 3 times a week. Plus she has an IEP (Special Needs Curriculum Write Up) she has extra Speech and Occupational therapy services there too and goes to preschool for 5 hours,5 times a week.
4) PLEASE CONTACT YOUR LOCAL EARLY INTERVENTION AGENCY. It is a federal program, income does not matter. Our IS children are indeed eligible. Once you are in the Early Intervention system they will give your child the proper evaluation. That evaluation will determine if he or she gets free home therapies. Use them for local resources, too!!!!
In Iowa Early intervention was known as Early Access, in Maryland: Infants and Toddlers Program, and in NJ:Early Intervention. The name of the program varies from state, your pediatrician should help you locate the number if you have difficulty finding it online.
Early Intervention is for children ages Birth-3yrs old. After three the child is placed in the Special Education Public School District.
5) SUPPORT GROUPS.... you will need them! if your town doesn't have one start one! Since Infantile Spasms is rare I expand and speak to other parents that have children with disabilities, we all do go through similar loads of heartache. And since I cannot speak to the other IS parents in person, I tend to go to online groups, too.
The Infantile Spasms Community Discussion Group
https://www.facebook.com/groups/infantilespasmscommunity/
1) NO TWO NEUROLOGISTS are going to give you the exact same treatment. Neurology is a field that is not clearly understood and not much research is done on severe and rare pediatric epilepsy. So go and market for the right neurologist.
Don't like your current one, no worries, on to the next. Some may have terrible bedside manners but only you as the parent will know if the neurologist is doing everything he or she can in order to get rid of these spasms. ( Aliyah has seen over 11 neurologist, and consult with 2 or more at a time)
2) Keep a SEIZURE DIARY at all times! Describe the seizure activity and write down the time and date. And if you can describe what the child was doing before his or her seizures occurred. ( I know it sounds odd but Aliyah's seizure for a small period was stimulated by loud sounds or the "NO" shouts, especially after eating a non-Keto food while on the Ketogenic Diet)
It is also great to see if certain meds work better than the other. (We noticed a dramatic decrease in seizures while on Sabril, when comparing to Depakote or Banzel) Also note when your child is accomplishing any form of mile stone even if it can be describe to typical parents as inch-stones ( While Aliyah was taken off of Topomax we notice she was babbling up a storm, and when on Lamictal she started saying words, building up her vocabulary)
3) THERAPIES.... Your county comes out to your place and provides all of the services needed for ages birth -3 years old... After age 3 the school district takes over. In Iowa they were known as AEA, Maryland: Infants and Toddlers Program, and in New Jersey: Early intervention. The name may differentiate from state to state. (Income is NOT a factor for qualifying) If you are having trouble finding the agency call your pediatrician he or she should have the number.
Get as much therapies as possible. Aliyah is under Tricare Reserve Seleect (military insurance for Guard) with that she was entitled to Speech 1hr sessions 4 times a week, Occupational Therapy 1hr sessions 4 times a week, Physical Therapy 1 hr sessions 3 times a week, and ABA therapy 2 hr sessions 3 times a week. Plus she has an IEP (Special Needs Curriculum Write Up) she has extra Speech and Occupational therapy services there too and goes to preschool for 5 hours,5 times a week.
4) PLEASE CONTACT YOUR LOCAL EARLY INTERVENTION AGENCY. It is a federal program, income does not matter. Our IS children are indeed eligible. Once you are in the Early Intervention system they will give your child the proper evaluation. That evaluation will determine if he or she gets free home therapies. Use them for local resources, too!!!!
In Iowa Early intervention was known as Early Access, in Maryland: Infants and Toddlers Program, and in NJ:Early Intervention. The name of the program varies from state, your pediatrician should help you locate the number if you have difficulty finding it online.
Early Intervention is for children ages Birth-3yrs old. After three the child is placed in the Special Education Public School District.
5) SUPPORT GROUPS.... you will need them! if your town doesn't have one start one! Since Infantile Spasms is rare I expand and speak to other parents that have children with disabilities, we all do go through similar loads of heartache. And since I cannot speak to the other IS parents in person, I tend to go to online groups, too.
The Infantile Spasms Community Discussion Group
https://www.facebook.com/groups/infantilespasmscommunity/
Infantile Spasms
IS Family Inch-Stones
https://www.facebook.com/groups/126400974159934/
6) Contact "THE ARC" It is a non-profit organization for people with intellectual and developmental disabilities. They have been there for me!!! Amazing group of people. When we lived in Iowa they paired me up with a mentor, she was a professor whose son is diagnosed with Lennox Gastaut Syndrome (many of IS children transition onto that diagnosis), she gave me great tips! The Arc also helps with payments for Respite Services and they have funds available for our children's needs. Iowa helped with $1500 every 6 months and in Maryland it's $3000 every fiscal year.
They also have essential workshops. Now that Aliyah is in the public school system these workshop helps me better understand special education and IEP services.
7) MRIs can be done yearly. After Aliyah;'s third MRI, finally it was taken as a 3T, rather than a 2T, much more information was given to her neurologist.
8) Arrange a PED. GENETICS appointment. The question why may just be in our children's DNA.
9) Need an ADVOCATE? Having problems with your school or daycare? need reinforcement? Call your local Epilepsy Foundation Chapter. In Iowa I called them and a representative came out to Aliyah daycare center to train them what to do if they were to see a seizure and teach them what to look for since seizures come in different disguises.
10) My best way of coping with the diagnosis is by FUNDRAISING for C.U.R.E. (Citizens United for Research in Epilepsy). More research needs to be done for Epilepsy. Also every year we attend the National walk for Epilepsy all funds go to the Epilepsy Foundation. The Epilepsy foundation is another amazing non-profit organization that need help in fundraising too, they reach out to our communities.
11) MEDICAL WAIVERS.... In Iowa Aliyah was eligle for the ID waiver (Intellectual Disability waiver) income is not an issue and no real waiting list. Here in Maryland most waivers are indeed income based and the waiting list is over 8 years. :/ In Iowa the waiver allowed Aliyah to have a private nurse 40 hours a week and Respite services.
12) Still looking for a MENTOR? you can contact Parent to Parent USA and they will find you a mentor that best fits your needs and child's diagnosis. http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx
6) Contact "THE ARC" It is a non-profit organization for people with intellectual and developmental disabilities. They have been there for me!!! Amazing group of people. When we lived in Iowa they paired me up with a mentor, she was a professor whose son is diagnosed with Lennox Gastaut Syndrome (many of IS children transition onto that diagnosis), she gave me great tips! The Arc also helps with payments for Respite Services and they have funds available for our children's needs. Iowa helped with $1500 every 6 months and in Maryland it's $3000 every fiscal year.
They also have essential workshops. Now that Aliyah is in the public school system these workshop helps me better understand special education and IEP services.
7) MRIs can be done yearly. After Aliyah;'s third MRI, finally it was taken as a 3T, rather than a 2T, much more information was given to her neurologist.
8) Arrange a PED. GENETICS appointment. The question why may just be in our children's DNA.
9) Need an ADVOCATE? Having problems with your school or daycare? need reinforcement? Call your local Epilepsy Foundation Chapter. In Iowa I called them and a representative came out to Aliyah daycare center to train them what to do if they were to see a seizure and teach them what to look for since seizures come in different disguises.
10) My best way of coping with the diagnosis is by FUNDRAISING for C.U.R.E. (Citizens United for Research in Epilepsy). More research needs to be done for Epilepsy. Also every year we attend the National walk for Epilepsy all funds go to the Epilepsy Foundation. The Epilepsy foundation is another amazing non-profit organization that need help in fundraising too, they reach out to our communities.
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| Aliyah with her Grandparents attending the National Walk for Epilepsy in Washington, DC |
11) MEDICAL WAIVERS.... In Iowa Aliyah was eligle for the ID waiver (Intellectual Disability waiver) income is not an issue and no real waiting list. Here in Maryland most waivers are indeed income based and the waiting list is over 8 years. :/ In Iowa the waiver allowed Aliyah to have a private nurse 40 hours a week and Respite services.
12) Still looking for a MENTOR? you can contact Parent to Parent USA and they will find you a mentor that best fits your needs and child's diagnosis. http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx
