We are once again on the road to Philadelphia. Landon has now been on the ketogenic diet ad had C diff for 5 weeks today. We took another stool sample to the lab before leaving town this morning. I'm almost positive it is going to come back positive. So the next step is sending him to an IBD specialist. (Landon just ended a 10 day treatment of vencomyocin, and before that was 10 days of flagyl). It may be taking us to yet another hospital stay for IV treatment. He also developed a rash on the back of his thighs, back of his arms, and on his back? They thought it may be an allergic reaction, but it seems that he has eczema. I really don't get why things always happen to him?? Ugh! Thankfully it's not really serious! Although it can be itchy. He doesn't seem bothered, so we are trying aquaphor first. If that doesn't work we will try a steroid cream.
He still had the NG tube, which means they will be sending us to a GI specialist after this appointment. I don't see him drinking anytime soon. I hate the tube...especially because it has come out 3 times in the last week! It's akward and makes most people nervous(including me!). Seizures are off and on like normal. Okay, maybe a little better than normal. Unfortunatley we are still seeing some. And he is doing some odd things where he shakes his legs and fists...not sure if he is doing it or we are seeing a new seizure type? Hopefully not! We are still hopeful once the c diff is cleared up we will see the miracle of the diet! We don't think the last 5 weeks even shows the benefit due to the infection! Not to mention he's on antibiotics that can cause some to people to had increased seizure activity.
On a happy note, Landon seems to still be doing well with progress. He got a stander at therapy this week, and seemed to tolerate it well! He has a special sparkle in his eyes that is so hopeful! Next week he has surgery to open his teat duct and for his skin biopsy. I will be glad to have it over with!
Hope all is well with everyone! Prayers always!
Xoxo,
Heather
Dawson had eczema when he was a baby. I found that the Aveeno Baby oatmeal bath and the Aveeno Baby Soothing Relief moisture cream for eczema worked great for him. Might be worth a shot to try that. We still use it some and at times have to use some 1% hydrocortisone lotion on him. Prayers that he overcomes these obstacles and that the seizures will cease!!
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