A Momentary Lapse of Reason

We're stumped. We've been battling Oliver's screaming/crying/miserable fits for too long now and we are just clueless on how to solve them. Despite all of our best efforts he still cries and screams for hours every day. We have a list of items that might be causing this distress and we're slowing trying to address them one by one in order to get him to a better place. In the meantime he is just an irritable, irrational and miserable little baby who looks absolutely adorable with his lower lip hanging out and a tear rolling out of his eye.

Teeth: Oliver only has 8 teeth and is a bit behind on teething for his age. Likely because he can't hold objects and put them in his mouth and doesn't spend much time chewing. I've started taking a rubber fingertip toothbrush and letting him gnaw on my finger after meals.

Gas: As always, Oliver suffers from intense/extreme gas pain. He was like this from birth to about 4-5 months of age but then did wonderfully until we started the diet. GI doc thinks it's motility issues and wants to put him on a motility med. We want to wait until Oliver is off the seizure drugs to see if he improves. He will also be starting a carnitine supplement as his carnitine levels are low. This helps the body process fats and we hope it will help his tummy feel better.

Reflux: Since starting the high fat diet, Oliver seems to have developed reflux. We don't see any outward signs of it other than his irritability and he's now started this squirming thing whenever we put him in his high chair and start feeding him. He is on Zantac but we're going to try Prevacid to see if it helps. In the meantime I'm setting up a 2nd opinion as our GI doc first told us Oliver had lots of room to increase the Zantac dose and is now saying he doesn't. Either way, he's miserable and we don't see why trying other reflux meds wouldn't be a good option since he's on a reflux med anyway...before introducing the motility med.

Drug Withdrawals: Oliver finished his last daily dose of Clonazepam about 2 weeks ago. It's a tough drug to wean and he's had increasing irritability since we dropped that last little dose. We hope he will be better in a few weeks but we also just started weaning Vigabatrin this past weekend and I'm sure the withdrawal from that is not easy either. If things go well, we will be off the Vigabatrin in 3 months. It's going to be a long 3 months if the wean is hard on him, but we hope once he's off all the seizure meds and just on the diet/supplements that we'll get to see Oliver's true personality. It's been such a long time since he started the meds I am both nervous and excited to see him off the meds.

Please think good thoughts for us as we really want to take him off the Vigabatrin but will not be able to do so if he has a ton of seizures crop up during the wean.

Oliver's ear tube surgery is scheduled for Monday, we have to call on Friday to confirm he has been cleared by neurology and hematology and get our surgery time. We are nervous and excited for this as well. No parent likes to see their child put to sleep and we hope there will be no complications during the surgery but it's supposed to be a simple/easy task and he's been under anesthesia before so we don't anticipate a problem there. Hopefully Oliver will be more comfortable , on antibiotics less often and maybe will be able to hear better.

We had an amazing feeding evaluation with a feeding therapist on Saturday. She and I spoke for about 45 minutes coming up with items on the keto diet that Oliver can try eating that will expand his ability to chew, swallow and strengthen his jaw and tongue. She said the motor planning part is there (yay!) but he's just weak (since he has extreme low tone, we knew that). At the end of the meeting Oliver woke up in a happy mood and hungry (rare for him on both counts) and we practiced chewing. He ate little bits of avocado, some cheese, and some cheerios. Then I quickly followed it up with a keto bottle to get his ratio right. The therapist was so pleased with how well he did and Oliver was pleased with himself too...at the next meal he refused the puree but when I put little bites of food in his mouth he happily chewed and swallowed. We just have to work on his endurance as he can only do a few small bites at a time and then often forgets to swallow it. The therapist has offered to take Oliver on rather than referring to someone else and we're very excited because she was great (and she will go to daycare to work with Oliver's teachers!).

We had a developmental evaluation, and ENT and a neuro appt last week so we're very sick of doctor visits for the moment!