NEWLY DIAGNOSED WITH KSD
WHAT YOU NEED TO KNOW FOR YOUR CHILD WITH KSD
(Kernicterus Spectrum Disorder)
- Taking care of yourself
We know it can be OVERWHELMING. …because we’ve been there too. It’s by no means an easy process, and in many ways, it’s a grieving process. There is much to work through, so dig deep and give yourself time. Parent’s who have been through this road before have recommended that you.
First of all, you need to know that the word kernicterus can send shockwaves. Once the diagnosis is listed on medical records, many families immediately receive forms from their insurance companies inquiring as to whether their is a legal claim for liability.
Request medical records from everyone that managed your child’s care during their first weeks. This will be helpful to have later. If you feel that your child’s jaundice was mismanaged you may want to ask an attorney to investigate your child’s care. This is usually done free of charge and can help you determine what went wrong, and how your child developed kernicterus.
If your child was cared for in a hospital in the US, You can also contact JCAHO and make sure that the event of your child’s kernicterus has been reported.
There is currently NO surveillance or reporting system for KSD in the United States. Believe us, THIS IS HARD TO HEAR, and this is something that we are working to change!
Be sure to check in at http://www.facebook.com/newbornjaundice or http://www.yahoogroups.com/newbornjaundice Let us know what happened, whether you are in the US, or not.
TESTS TO BE PERFORMED SOONER THAN LATER
- An important test to measure the brains response to sound and discover whether the child has Auditory Neuropathy / ANSD (KSD can cause this)
- This test can often be performed on infants in natural sleep, but as a child ages, sedation is usually used
- The basal ganglia and the globes pallidus, in particular, need to be looked at closely to determine whether there is staining on the brain.
- Bilirubin can literally stain this area of the brain yellow.
- For some children this damage is more clear when the image is obtained closer to the injury
- For other children the damage is more apparent later on
- This is also VERY helpful in establishing whether your child has kernicterus, although in some cases, kernicterus can be present without being visible on the MRI
Taking care of your child
There is an unknown and often difficult road ahead, so it’s best to take it one day at a time. There are several categories your child may fall under:
Given that there is no magic number in terms of bilirubin levels (many factors determine how potent it can be in your child’s brain) the severity becomes more apparent with time. This is not because the brain injury becomes worse. In fact, it is static. Kernicterus is not a progressive disease. In normal development a child is expected to meet certain milestones, and with KSD it becomes more apparent as these milestones are missed. A child with milder KSD may still meet some or all of these milestones, but they may just be delayed in reaching them. Getting early intervention therapies and seeing specialists that can help treat the many secondary diagnoses will be key in helping your child optimize their potential.
Depending on to what extent your child is affected you may need to ask your pediatrician for referrals to a few or almost all of the following specialists who advise and treat these conditions:
- Neurologist – specialty deals with the brain and includes care for seizures, movement disorders, sleep etc
- GI (Gastroenterologist) – digestive issues, reflux etc
- Developmental Pediatrician – specializing in special needs
- Physiatrist – (Dr. of Physical Medicine and Rehabilitation) specializing in brain injuries
- Audiologist – an ABR needs to be performed to determine whether Auditory Neuropathy (ANSD) has also come with the kernicterus)
- ENT – hearing loss, swallowing issues, reflux etc
- Ophthalmologist – eye disorders such as nystagmus, strabismus, and/or cortical visual impairment
- Pulmonologist – if breathing issues are present
- Geneticist – if their was a genetic factor such as G6PD, Crigler Najar etc.
- NeuroOpthamologist – if symptoms of CVI are present
- Orthopedist – hip problems and other orthopedic issues are more common in children with movement disorders and it’s best if they are closely monitored by an orthopedist
- As baby teeth arise, you may find that the teeth have yellow spots and seem to crumble, or have indentions where the enamel seems to be missing
- Dental enamel hypoplasia and dysplasia (enamel not forming properly on baby teeth) are often mistaken for poor dental care
- You’ll need a dentist that is more familiar with pediatric special needs.
- Although many of our families have definitive confirmation of when the brain injury occurred and we know that the injury happened after birth, it seems that most dentists are of the school of thought that damage to the enamel on baby teeth must occur in utero.
- There is a need for more studies on this matter, and there are researchers that want to pursue this, but it is a matter of finding the funds to study it. Studying the baby teeth of children with KSD may lead the dental community to a deeper understanding of dental development, as the timing of the injury to the teeth is specifically known.
When dealing with this many specialists, it is often best to go to a university and/or children’s hospital where care can be coordinated and they have more special needs experience.
- Speech Therapy for feeding and speech issues
- Play Therapy (if younger than 3 years old)
- Occupational Therapy for fine motor skills, like grasping, reaching etc.
- Physical Therapy for gross motor skills like walking, crawling, sitting etc
If in the United States, many of these therapies are offered by state infant toddler programs at no cost by your state government agency. An evaluation will initially be given to determine need.
Many infants with KSD cry A LOT and need to be held very often. When laid down they will often fling their arms out as if they are falling. This is because their vestibular stability (the part of their brain that establishes where they are in space) is all awry, and they can additionally have myoclonic jerks that keep waking them from sleep and/or seizures. This can make car travel and sleep VERY difficult.
As they get older, medications can help and are often discussed in our facebook group:
This is a LOT of information to take in…and all of it may not apply to your child. Take in what you can, when you can. Love your child. Count the gifts. There will be many lessons that you would never learn in more easy circumstances that will give you deeper and more rich highs and lows. Seek help when you need it, and especially don’t be afraid to reach out to those who have walked in your footsteps. The grief of KSD is very isolating and it very much helps to talk to others who have dealt with it all, and know more specifically what treatments and specific issues pertain to your child.
10 thoughts on “Newly Diagnosed”
Please help. My great nephew has been diagnosed with Kernicterus and niece needs support. Who can we contact for help.
Hi Darlene, We, as kernicterus parents, would highly recommend that they join our parent group on facebook. We all learn much along the way and help one another with troubleshooting and share info about specialists, treatments, meds, equipment etc.
Very sorry to hear that yet another child has had this happen to them!!!
Miriam, mother to Blue (age 9 with kernicterus) and 2 younger sisters.
Thank you for your reply. I have given this information to my niece. Darlene Lewis
my grandchild was born june the 1st, has jaundice, he had his levels up to 40, they told us he has brain damage but they have not told us yhat he has Kernicterus, how many days do they have to wait to make him the MRI and other test?
I would ask for the MRI before they even leave the hospital. It doesn’t usually require as much sedation in as an infant and they should certainly perform an ABR at a university hospital while an infant as well.
So sorry to hear that your grandchilds jaundice was mismanaged!!!
My son had a similar experience and had a bili in the 40’s too.
Thank you Miriam for your information
How is your child Miriam? how old is he?
My son is a super happy amazing 10-year-old. He sees the world from a different angle and I am glad for that. Kernicterus has left him with many many challenges (physically he functions much like someone with spastic quadriplegia). This doesn’t stop him from being a straight A student and a very popular one at that.
I´m so glad to here that, they are very special, ANGELS ¿how old was he when he was diagnose with Kernicterus?
I cannot over emphasize the importance of good nurtician, and neurological stimulation. Due to the Kernicterus we do not know our child’s potential so must stimulate their brains at every opportunity to establish neuropathways.
Also exercise the baby by wiggling arms, legs, rolling over etc.Obviously not vigorously but kindly and gently.
Most of our babies have poor head control for a long time, years in some cases so the head must have adiquate support either side.
Constipation can also be a problem and I found that banana or banana bread and custard helped enormously