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We’ve been trying Reliv shakes a couple of months ago to see if they would help with James’ seizures, but his seizures seem to have gotten worse, and not better. On Tuesday he had the last of the shakes. He has a neurology appointment next month so we’ll see if his seizures improve by then.
In addition to the increased seizures, James seems to get a bit upset during his noon feed lately. We really have no idea why it is that feed that gets him upset. He seems fine with the rest of the feeds throughout the day. And when he gets upset, he also kicks up a bunch of secretions. Stacy calls him “Mr. Cranky Juicy Pants”. One of Stacy’s friends recommended that we talk to the pulmonologist about taking Benadryl to help with the secretions. Benadryl? Isn’t that an allergy med? It is, and apparently one of the side effects is that it can dry out secretions on mucous membranes. The pulmonologist gave us the okay to try it if we wanted to. Stacy has been a little wary about giving James Benadryl because when she takes it, it knocks her out. We’re still debating if we want to try it or not.
Because epilepsy seems to be the biggest of James’ issues lately, Stacy has joined a couple of epilepsy and infantile spasm groups on Facebook. She has also been doing some of her own research. There has to be something we haven’t tried yet, right? He can’t be the only kid with uncontrollable seizures, can he? She came across an article earlier this week titled “Risk of Febrile Seizures and Epilepsy After Vaccination With Diphtheria, Tetanus, Acellular Pertussis, Inactivated Poliovirus, and Haemophilus Influenzae Type b”. I have linked to the article if you want to read it. It is in one of those medical journals so it is a bit hard to read with some of the medical terminology, but still very interesting. I should point out that the study was done in Denmark, and I am not sure if the vaccines used over there are the same as the ones administered in the United States, or if there are some variations. Anyway, it is an interesting read and since James has had all of those vaccines, it makes us wonder. Could there have been something in one of the vaccines that caused his epilepsy? I am going to lean toward no. They believe James had a seizure in the NICU, before he had any vaccine. And because he had a stroke in utero, his brain is just messed up. Sorry, I don’t know how else to put it.
Unfortunately, I am going to end this weekly post on a sad note. I mentioned earlier that Stacy is in a couple of infantile spasm and epilepsy/seizure groups on Facebook. The child of one of the parents in one of those groups passed away this weekend. They believe he had a seizure in his sleep. Since I am not going to name any names for privacy reasons, you won’t be able to pray for this family, but what you can do is pray for anybody that you know that is battling every day with epilepsy. Pray for their families. Pray for their parents. And make sure you tell your loves ones that you love them every chance you get. You just never know when you will no longer have the chance to tell them.
