AHC Episode vs. an AHC Attack, what is the difference?
AHC is characterized by intermittent EPISODES of hemiplegia and dystonia on one side or the other or both sides simultaneously. AHC ATTACKS are mini-episodes relieved by a short period of rest or de-stimulation. AHC attacks allow the baseline activities to continue after relief. AHC attacks turn into episodes when they are not relieved by short-term care.
*AHC Episodes are not seizures. If your child is having a seizure, seek emergency care immediately.
The vertical line is hemiplegia, and the horizontal line is paraplegia, not our disease.
It is an AHC episode; now what?
Mediation such as valium can rescue or “break” an episode. Not all patients are receptive to rescue medications. In those receptive to rescue medications, it does not recover 100% of the time. Drugs such as Valium, Ativan, Diazepam, Melatonin, Clonazepam, and Midazolam among others, have also shown effective rescue of episodes.
When a rescue medication is ineffective at “resetting” your child, you may be in for a prolonged episode. Sleep and rest are the most important treatments for your child. After a nap or overnight sleep, your child will return to baseline activity. This return after sleep is characteristic of Alternating Hemiplegia of Childhood. Some children can be paralyzed for hours and regain motor function after as little as 5 seconds of sleep; rubbing their eyes, body adjustments, yawning, etc.
Upon waking, your child may maintain their baseline, and the episode is over. However, if the child declines back into the episodic state as pre-sleep within minutes or hours, you have not fully completed the episode. This cycle can repeat for hours or days until the body resets itself. Therefore, it is essential to maintain your child’s hydration and nutrition during this cycle. Having drinks close to your waking location is key to taking advantage of the brief returns to baseline after sleep. After some liquids, some nutrition is the second priority. Many patients use squeeze packets of apple sauce or baby food, even fortified drinks like Ensure or Boost, to add nutrition before the episode returns and the cycle continues.
Input is Great. Output is Bad.
When the episode returns and it is not time for sleep, care for your child by creating a comfortable environment. Dimmer light, quieter space, and mental stimulation are essential factors in your child’s care. When your child is in an episode, they are awake and alert. When the episode does not include painful dystonia, many families use the waking time for reading, inclusion into activities that are easily observed, and even walks outside and rides in cars. Be mindful that the “input” still works; the “output” is compromised. Speak with your child. Speak around your child as you usually would. They can hear everything.
Alarming Symptoms that Aren’t
Episodes and Attacks can include painful muscle contractions called Dystonia (LINK WORD TO GLOSSARY?). Usually, this dystonia is temporary and can be soothed with medications such as those rescue meds referenced. Full-body contractions can be present in episodic patients and are painful. These are hard to endure for the child and the caregiver. This is a primary reason a rescue medication plan should be in place. The rescue medication often doesn’t break the entire episode but relieves the dystonia. Caregivers should discuss other medications recommended by their physician for longer-term dystonia on a case-by-case basis.
Short-term, localized dystonia in a limb can often be soothed by massaging the opposite side of the contraction. For example, you can relax a clenched hand by massaging the forearm and top of the hand. Likewise, a clenched arm can be relieved by massaging the triceps and stretching the limb out. Caregivers would use these remedies anytime the dystonia returns.
Abnormal ocular movements, also known as “ocular motor abnormalities,” are often the first symptom observed in patients with AHC. They are generally seen within the first three months of infancy. The abnormal movements may include nystagmus, esotropia, and/or exotropia. These eye movements are relieved with the completion of the episode. While they are alarming, they are not hurting your child. When the episode is over, things will come back into focus. A visit to an ophthalmologist may be a good idea during baseline times to establish an eye health history.
Prolonged episodes involved many waking hours of paralysis. Whether it is a one-sided or whole-body episode, it is a lot of work. Care should be taken when moving your child around. Transferring your child from one place to another requires the support of the head (think newborn baby) and neck. Feeding your child can still happen but should be done with your assessment of their strength to chew and swallow. All aspects of your child’s life will need assistance until the paralysis subsides. It will subside. Be patient.
Don’t Forget the Caregiver
As your child gains weight and size, you should take additional care to protect the caregiver during paralysis care. Awkward lifting and shifting of weight can cause injury to the caregiver, especially their back. Seek out videos that describe good patient transitioning techniques. Good exercise and stretching regimens between episodes are vital to maintaining a body ready to provide for your AHC child. Seek out nutrition and exercise guides that fit your lifestyle, and remain prepared for the next episode in the cycle.
Caring for a child in an AHC Episode is a complex effort. The AHC Foundation is here to support you. You are always welcome to call or email us. Our parent-led support group on Facebook is also a wealth of knowledge and support. Please join our group!