Mitochondrial Disease: Preschool through High School

There are many myths about Mitochondrial Disease and that leads to complicated incorrect misunderstandings.  Although it is thought of a primarily a childhood disorder, it can actually occur at any age. 

Previously it was thought that it was only the mother that passed the gene onto the child, but it is now known that there are many genetic hereditary patterns that contribute to the DNA mutations inside cell patterns.  Mental retardation, seizures and related developmental issues do not always occur with Mitochondrial Disease, and there are many children with typical cognitive abilities.  

There is current on-going research suggesting a connection between HIV positive parents and Mitochondrial Disease in their newborns.

Diagnosis is a complicated process that may or may not include a muscle biopsy.  And at this time, there is not one test that determines the diagnosis.  Just as there is not one test, there is not one protocol for treatment.  And there is a huge gap of misunderstanding between “incurable” and “untreatable”.

There is on-going research connecting some children with Autism to Mitochondrial Disease.  This study is population based and so far it has found that this occurs only in a minority of cases.

What adds to the confusion about treatment is that each child can manifest the disorder very differently.  However the link between all of these children is the fact that learning how to play, a natural avocation of children, while conserving energy needs to be taught.  Teaching healthy play habits is where occupational therapy can make a significant contribution.

It is also crucial that this therapy/education process involve not just the parents but the siblings as well.  Including everyone in the process allows for the typical sisters and brothers to engage with their family as a contributor and not a by-stander.  This also may prevent their feelings of jealousy and rejection.

When you receive the diagnosis is very important.  If your child was diagnosed early and received services under (each state may have a different title) the Babies Can't Wait 0-3 programs than entering into the public school with special services may at least, initially be an easier process.

However many times this is not diagnosed early especially in cases where the symptoms are mild and do not manifest themselves until the child is in more task-demanding situations.

There are basically two avenues for a “Mito” child to receive services, for the child entering public education there is the IEP (Individual Educational Plan through the IDEA part C).  However state regulations can retain your child under the IFSP (Individual Family Service Plan) until age 5 when most children start kindergarten.

These are two very different systems and are not related to one another. IFSP focus is on the family interactions and what they can do to help the child. The IEP is only educationally based.  The IEP covers the child from ages 3-21.

The IFSP takes into consideration the needs and concerns of the family, and the IEP do not. These are two very different laws, and it is essential that families know the difference between State and Federal Laws.

Keeping records of milestones is very important when seeking services.  Dates of attainment of walking, sitting, standing, toileting, talking, swallowing, etc. not only are important to the pediatrician but the school in making the decision for appropriate services.

As your child progresses into elementary school you may begin to observe increased fatigue (as the school day is longer and more stressful with less “breaks), visual issues may appear and problems with reading may be noticed at this time, and increased occurrences of muscle cramping may be seen.  At this time the parents may also want to integrate benefits available to the child through the 504 (ADA law) for accommodations and modifications within the educational setting.

Provisions under the 504 are particularly important to children as they enter Middle School. Middle School is wracked with enough issues inclusive of but not limited to social expectations, increased homework and more writing writing writing! Not to mention the carrying of books from class to class.  At this time some children may opt for the use of a wheelchair to help conserve energy during the school day. 

Under the 504 parents can ask for modifications in scheduling, timing of tasks and assignment due dates, classroom settings, presentation of information and testing (such as an answer booklet instead of a worksheet), etc.

During middle school it is not too early to think about High School graduation. The type of diploma your child gets impacts post-secondary options. Be sure to ask about this very early on in middle school and again at the first high school IEP meeting.

An alternative to all this is home-schooling. This is a very personal decision and many factors need to be considered. Are your child’s needs being met in the public school setting, is health at risk during such a long school day, your child’s emotional status, etc.  However if your child is receiving related support services in the public school, you need to ask if these services will continue in the home-school setting. Some states send certified teachers into the home and other states leave that to the parent.  Related services may be provided but the parent would have to take the child to the public school, while others send the special services person to the home. All of this should be part of the parents’ investigation before a decision for homeschooling is made.

It is also important to know that under the IDEA (IEP) Plan, the mandate is for the “least restrictive environment”. That makes the priority of placement and services very rigid.  The first option is always placement in a regular classroom. Then the following is suggested: placement in a regular classroom with modifications; resource room assistance; separate classroom for children with special needs and last a residential or day program placement.

Throughout this process the occupational therapist is key in making sure that milestones and educational outcomes are met.  Working with the teachers and the families the OT addresses issues of energy conservation, balance, mobility, technical support, strength, balance, coordination, sensory modulation, play skills and activities of daily living.  These are skills that will be needed not just in school but throughout the life span.  The occupational therapist can also help with the establishment of daily exercise plans to do both in school and at home.

Because the Federal mandate of the public school is to “normalize” educational settings, parents may need to ask for occupational therapy to be part of their IIFSP/EP Plan.

Obtaining services is often a complicated process and parents can learn more about this process and occupational therapy in the book, “Learning Re-Enabled” 2^nd edition, available through Amazon.com. and other booksellers.

Susan N. Schriber Orloff, OTR/L, FAOTA is the author of the book. “Learning RE-Enabled” a guide for parents, teachers and therapists,(a National Education Association featured book) as well as the WIN™ Write Incredibly Now™ Program (available through YourTherapy’Source.com).  She is also the CEO/Exec. Director of Children’s Special Services, LLC an occupational therapy service for children with developmental and learning delays in Atlanta, GA.  She can be reached through her website at www.childrens-services.com or at susanorloff@childrens-services.com.