Q: I am looking for suggestions for our 2-year-old son with epilepsy. He currently functions at a 6 month level. He can eat by mouth (only stage 2 or 3 baby foods), but lacks a suck. He can swallow well, but we have to use a syringe to get liquid into his mouth first. I do have the Z-Vibe with the Cat and Mouse Tips, but since his mouth is so tiny, they haven’t really helped. Can you suggest any others?
I’ve also tried a ton of cups and nothing has helped. If we don’t see improvements soon, we will probably get the g-tube just for liquids. He has had one before, but we would prefer to get him to take everything by mouth. I have seen him suck on his finger and make a sound – so he is doing it at times. He will be getting Hyperbaric Oxygen Therapy in three weeks along with intensive speech therapy, and I want to make sure I have all the products that he may need. Any thoughts?
A: Dear parent,
I just met your son on his blog. He looks like he is enjoying his therapy. What a trooper and a real cutie. Love the glasses. There are a few products that I would like to recommend for him. You may already have them.
1. To work on the suck, I recommend the Preefer Tip and/or the ProPreefer. The Preefer Tip is to be used with either the Z-Vibe or the DnZ-Vibe. The ProPreefer has the same tip, but is a non-vibratory alternative. Both are used in the NICU. I have personally never been in the NICU, but other SLPs have told us that they are a great fit. Place the tip between the lips and pull it in and out to stimulate a suck. I use this technique with older babies and children. Your son is now 2, but we can still try this out. Please ask his doctor for approval in using ORAL vibration with seizures AND with the Hyperbaric Oxygen Therapy treatment. I had a little guy in the same situation who was fine with it, but it is ALWAYS best to check. You can always use the Z-Vibe in the off position without vibration.
2. Have you tried the pink Flexi Cup? If that is too big, or if you want to try it out first before buying it, just find get a small cup you can tear. Dixie cups work well. Look at the picture and tear it accordingly so that you can see what the upper lip is doing. You can squeeze it to make it smaller when you use it. Replace it as needed. Sometimes I switch to cup drinking ASAP and keep working on the suck so that the child can stay hydrated, especially if he is at risk for a g-tube. Support should be given to the chin, stretch the upper lip down (ask your SLP if she knows the Beckman stretch for this), and you may have to give some cheek support. Make sure he doesn’t tilt his head back, and a slight chin tuck may even help. You have to play around a bit, just like you have been doing! After he has a tiny bit of liquid in the mouth, you can put your pinkie under the chin and push up while you have your thumb under the pink of the lower lip. This should keep the mouth closed. Let me just mention that water and juice are considered thin liquids and CAN be difficult for him to manage. You may want to thicken it with puréed baby foods or just try let him drink a tiny bit of the puréed food.
3. Have you tried straw drinking? Our Sip-Tip and Cip-Kup both help with straw drinking. We have instructional videos for both. You use them to either pump (with the Sip-Tip) or squeeze (with the Cip-Kup) liquid into the mouth. They both come with a Select-Flow Valve, which keeps the fluid in the straw without flowing back into the cup – perfect for individuals with a weak suck. You can trim the tapered end of this valve with a pair of scissors if you want to increase the flow. The Vangi Valve is another good valve to have if you want to use thickened liquids. These products should help with straw drinking, especially since you observed him sucking on his hand. What if you put puréed food on his hand for him to suck off of? Then praise him for doing it. Will he suck off of mouthing tools?
I am sure you know this, but developmentally if he is functioning at a 6-month-old age level, then you go back to those skills that a child/infant should have at that age and build from there. I hope some of this is beneficial. Please keep me posted as to what works, what doesn’t, and his progress. I look forward to hearing from you!