Left Side, Right Side

Grace started using her right arm and reaching out towards a hanging object while in her swing today. She is batting at objects with both arms! She was just starting to do this before all of this started. Part of the loss of this skill was most likely do to a set back from the seizures and the other from the medication she is on. Now if she would only smile.

Decrease Medication

Today we drop Grace's ACTH down to .25ml the original dosage we started her at. We are also going to decrease the clonzapam, as her head and body control are getting significantly worse, the clonzapam is a muscle relaxer so we are hoping that this help.

Back to the Pediatrician

We went back to the pediatrician's office today, this time to meet with our regular pediatrician. We seemed to get things worked out and more of a straight answer as to what was going on with the diagnosis of Grace having thrush and then not having thrush. It was a relief to speak to Dr. Fornoff; we tried to assure him that we were not trying to be difficult it's just really tough when two doctors are angry at each other and we are getting thrown around between them. We just want the best care for her and we can't seem to do that when ego's get in the way. It's not like we enjoy spending half of our awake time in various doctor offices or hospitals.

OT Visit

Today we had Grace's Occupational Therapy. We are trying to develop the use of her right side, she greatly prefers her left side. We are working on things like rolling over and gripping objects. Grace was starting to grasp objects before all of this started but she has lost the ability. Right now at almost six months she she around the development of a two and a half month old. We have been working on things for the past few weeks. We started to see some significant changes in the last couple days she is starting to tract objects much better and grabbing a hold of light objects. She even rolled over today to her back, granted she was a little annoyed to be on her front so that probably helped.

We tried to feed Grace some rice cereal with a spoon, she did really well for our first attempt. We need to get her eating by a spoon because if the drug Keppra she is on does not work we will be switching to Topamax which comes in little sprinkles that we will need to feed her on top of applesauce or rice cereal.

Eating with a Spoon

Night Out

Nancy came to watch Grace tonight for a couple hours so Joy and I could get away. Nancy took care of grace at daycare before all of this started.

Worth Every Penny

Not to mention nickles, dimes, and quarters.

Doctors

Grace may or may not have thrush. The substitute pediatrician prescribed a medication on Monday to treat it, today we have a new prescription to prevent it and he doesn't know where the idea ever came from that she has thrush. We basically are not listening to him anymore and going to go by what our Neurologist says as he has more experience with ACTH and its side effects and is very concerned with any side effects.

Grandmas & Food

Grandma Deb arrived today. Haven't mentioned anything about the Grandmas...lately they have been taking turns taking care of Grace from Wednesday through Friday. This has been a huge help and it has saved us from taking time off of work to take care of Grace. Plus it is really good for the both of us be at work just to maintain our sanity.

People are bringing us meals now this another huge help. Our church is organizing meals three nights a week. We were eating lots of take out and junk food and it was getting the best of us.

The Tapering Plan

Went to see Dr. Kabbani today we will be decreasing Grace's ACTH, it will take 4 weeks to taper her off of it. If we go to fast her body could go into shock. After that it will take Grace 2 to 4 weeks for her immune system to come back. Kabbani is concerned with the thrush and how it is progressing and wants us to see out pediatrician once again and see if we can get some medication to treat the large amount of eczema on her forehead. Kabbani can not prescribe this as he is just our neurologist (I think it is a conspiracy) but her would call and professionally advise the substitute pediatrician that something else needs to be done and offer recommendations. We like our neurologist!

Grace's blood pressure was very high we are going to double her blood pressure medication.

We are also starting Grace on Keppra another seizure medication it will take three days and half dosages before we can giver her a full dosage.

Old Mc Grace had a Farm

Down with ACTH

I took Grace back to the pediatrician and saw the the same doctor we saw last week, our primary is on vacation for the week. He felt that we were making a mountain out a mole hill and that Grace's case of thrush was nothing to be concerned about and we should continue treating her with ACTH. We did start her on a medication to treat the thrush.

All of this was contrary to what Dr. Kabbani has been telling us and we trust our neurologist by far more that the substitute pediatrician. Joy called the pediatricians office to speak with the substitute pediatrician to ask additional questions and address her concerns of having thrush with a weakened immune system. Everything we have been reading indicates that this is really bad. He called us back and was rather short and argumentative. Perhaps it's time we think about switching pediatricians.

We contacted Dr. Kabbani's nurse and advised her that Grace's seizures have not decreased in the past week, that she has thrush, and the issues we are having with the pediatrician's office. We wanted to know if we could decrease Grace's ACTH the next day. Granted we had an appointment the next day but we wanted to start tapering now versus later if at all possible, even if it is only one day. We are ready to have a normal baby back. Dr. Kabbani's nurse called us back and we are to back off 25% of the ACTH and we will put together a full plan the next day.

lalalalalala

One More Week

We met with Dr. Kabbani today, Grace's seizures decreased to two each day for the past week except for one day she had three. We don't know whether it was the ACTH or the klonapin that caused the reduction in seizures or a combination of the two. We thought this was really good news but apparently this is the max dosage we can really give Grace and since there was a decrease in seizures it would make sense to continue for one more week to see what the results are. Grace should be seeing zero seizures a week with ACTH, maybe one.

Kabbani thinks Grace may have a little Thrush starting, she already has some diaper rash and a yeast infection. If she has thrush we will need to start reducing the ACTH as her body simply can not fight off an infection at this time. We went to see our pediatrician but he was out for the day so we saw another doctor in the group he did say she a mild case of thrush but said it was nothing to be concerned about and that continuing on the ACTH treatment was the best course of action, he should know after all he has had another patient on ACTH in the past.

Fireworks

Grace didn't like the fireworks on the 4th, they woke her up and she was mad.