You may begin to see signs of dystonia (where muscles contract uncontrollably, or twist involuntarily, causing odd repetitive movements or postures) or chorea (involuntary movements, that are very brief, abrupt and irregular).
You may also begin to see signs of additional salivation (drool) or notice your child sometimes has difficultly clearly secretions. This is a progression of the hypotonia. You may want to discuss with your nursing time about sourcing a suction machine.
If you notice that occasionally your child is having difficultly breathing (particularly when they have a cold, or have more mucus than usual) you might want to ask for a respiratory referral. A respiratory physio will work with you to build a plan to help manage. This might include daily nebulisers, chest percussion and suction. If you notice your child colour change while having a seizure, the respiratory team will also be able to help prescribe in home oxygen to help with recovery.
At this time you’ve probably settled into a therapy routine. If you are able, you might want to include additional therapies, such as hydrotherapy, hippotherapy, ABM/Movement therapy and/or CME.