Carson Bowman Menkes Disease Story: July 2009

Wednesday, July 29, 2009

update 7-29

OK so we have had some interesting few days lately.

Last Thursday July, 23, we took Carson to the Urgent Care at Children's Mercy. He woke up with a 103 degree fever, very green mucus and was having difficulties breathing. They took blood and ran many tests on it, they did a chest x-ray on him and all they were able to conclude was that his white blood cell count was high. The chest x-ray showed viral with out pneumonia, so they diagnosed him with a lower respiratory infection. They gave him a 20 minute IV of Rocephin (very high antibiotic) and sent us home with Amoxicillin. Both of course these gave Carson really bad diarrhea. His poor tush was really red, we seem to have it under control now, we used Aquaphor by Eucerin. With all the extra congestion, Carson's pediatrian and Nuero wanted to start him on Robinul. Jeff and I are skeptical of this drug, we also tried this drug in early Dec, which we think helped send us into a large asthma attack and started the hospital stay and the NG tube. But we are going to try it again, we know he will not get dehydrated this time because of the Mickey button.

Friday July, 24, we took him to the pediatrician for a follow up. His white blood cell count had decreased by half! This right there told us it was not viral. The rest of Friday, Saturday, Sunday and Monday were uneventful. We gave him more Probiotics to help with the diarrhea and made two of his bottle with Pedialyte instead of water, to prevent dehydration. We decreased the Robinul because he was coughing with a lot of crud, but nothing was coming out.

Tuesday July, 28, Carson woke up cruddy and was wheezing again. We stayed home and did what we could here. We started the Orapred (asthma steroid) and gave him extra breathing treatments. Diarrhea is finally getting better.

Wednesday July, 29, he is still cruddy and wheezy, but the steroid is starting to help. Carson has been coughing a lot out on his own! The Robinul getting out of his system might also be helping.

We are hanging in there...

Wednesday, July 22, 2009

July 22 update

This is Mom updating. We have had some good times and some not so good times. Carson is always getting loved by someone. (I think sometimes, he just wants to say enough, get away. He is such a good sport.) We have really been giving Carson a lot of textures to feel and play with lately. We got some real fur samples (Alaskan Fur donated them, THANK YOU!!) I do not have a picture of it yet, but he really likes how soft they are. I have also bought him fishing worms, they are bright green! Miss Kim, Carson's vision teacher, was playing with him with the worms and Carson would not let go! He was playing tug of war with Kim...it was hilarious. I will work on getting pictures of these this week.

Last friday, Carson had an asthma attack, we got his breathing under control with an extra breathing treatment and a few hours of oxygen. He spent the rest of the night coughing up flemn every 5 minutes. Carson has also been having more seizures. They have been waking him up at night, making him cry as he can feel them come on. We have also been seeing grande mal seizures, his limbs shake and he holds his breath threw them. Talking with the Dr today, we have decided to increase his Keppra.

The Dr said that Carson's Keppra levels are low compared to how much he is taking. He is wondering if Carson's body is just not absorbing it or if we need to increase his doses. So we are going to try the later. We are very hopeful that this will work so we do not have to add a 5th seizure med.

Carson is still growing like a weed!!! He is so close to 29 pounds. He grew 8.5 ounces in just 2 weeks! We are looking forward to him growing taller in the next month! He is currently in 2T clothes and we are looking at 3T clothes this late fall and winter. He is also in size 5 diapers...what a big boy!!!