As a parent whose child has now received a diagnosis of AHC, you have probably spent months maybe years waiting to get this diagnosis. On one hand you are glad that there is a name for the symptoms your child is suffering with and you know that your child is not the only one. But, on the other hand you have never heard of Alternating Hemiplegia of Childhood, you want to know what to do after the diagnosis. Your mind is racing a hundred miles a minute with tons of questions that seem to go unanswered. From one parent to another maybe this is where we can be of help. As a parent we only want what is best for our child and for them to live life to the fullest. We want them to be happy and to not suffer in pain. The most important first step after the diagnosis is to find a neurologist who understands AHC and can offer your family advice, encouragement and effectively treat your AHC child. I would encourage you to visit the Duke AHC Clinic.
As parents we are called to be advocates for our children. To be their voice and to ensure that they are receiving all benefits available to them. For most of us navigating through the special needs resources is a nightmare, we are unsure where to begin and who to contact for help. I canâ€™t stress enough the importance of early intervention and therapy. If your child is diagnosed under the age of 3 contact your local Childrenâ€™s Developmental Services Agency (CDSA or Early Intervention), if between the ages of 3-5 your local county school system should have a Preschool program for Special needs children. If your child is school age contact your local county school system, ensure that they are in the least restrictive class, and update their IEP and medical care plan.
Since one of the symptoms of AHC is low muscle tone and difficulty with gross motor skills many of our patients require specialized equipment (wheel chairs, push chairs, positioning chairs, specialized car seats, bath lifts, etc). I would encourage you to apply for CAP services as soon as possible. Equipment is expensive and children grow quickly. CAP ID/DD is for intellectual disabilities and most states have a waiting list. Some AHC patients qualify for Cap C services which tend to not have waiting lists. It is possible to be on one waiting list and qualify for another service. A misconception about CAP services, which is a Medicaid waiver program, is whether or not the parentâ€™s income is taken into account for determining if your child qualifies. The parent income is not considered, it is all about your AHC child and their needs.Â Keep in mind these are governmental programs and there is a lot of paperwork and steps to get through the process. It can take months, then when approved and you start ordering equipment that can also be a lengthy process. To get everything done can take a year or more. One other great advantage to these services is respite care â€“ we all need time to recharge so we can continue to advocate for our children and to fully be there for them.
I hope you find our website helpful and if you have any questions or are looking for support after the diagnosis please contact us. We are here for you and your AHC patient. We will be glad to assist in any way possible.
Co-Founder, Cure AHC