Not to mention nickles, dimes, and quarters.
Sunday, July 16, 2006
Thursday, July 13, 2006
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.
Wednesday, July 12, 2006
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.
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.
Tuesday, July 11, 2006
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.
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.
Monday, July 10, 2006
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.
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.
Sunday, July 09, 2006
Wednesday, July 05, 2006
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.
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.
Tuesday, July 04, 2006
Tuesday, June 27, 2006
Week 3
We went to see Dr. Kabbani this morning and we were ready to take Grace off of the ACTH, we saw a little reduction but not much in the seizures. however we left with the plan of increasing her to double the amount we started giving her to go for one more week. Kabbani has had a patient in the past that did not react to the ACTH until they got to this high of a dosage, so it may just be a dosage thing. We are also going to increase her klonopin (other seizure medication she is on). I think this is an attempt to treat the seizures as nothing is really happening so far, but the good thing is that klonopin is a muscle relaxer so it will counteract the steroid. I can't imagine Grace on only the steroid.
Tuesday, June 20, 2006
Increased Steroid Use
We went back to Dr. Kabbani after a week of being on ACTH. Unfortunately there was not a significant decrease in seizures so we will be increasing her dosage by 50% for the next week. We will know in two weeks of starting ACTH if this drug will work for Grace. We feel like it is our fault that Grace is not getting any better. Since we give her the drug and that is all we can do we feel like we are failing her. We have to increase her Prilosec to double the amount, the insurance company didn't like it at first but it is preventive so she does not develop stomach ulcers which is yet another side effect of the ACTH. Grace's blood pressure is high so we have to start her on a blood pressure medication as well.
Monday, June 19, 2006
Thursday, June 15, 2006
Injection 2
Today we (Joy) actually gave Grace the injection of ACTH, you could hear the skin tear as the needle broke her skin. No parents should ever have to give their baby a shot. We are incredibly thankful that the home health nurse took her own time to come back to our home to assist us.
Now it is kind of a waiting game to see what happens with Grace's seizures.
Now it is kind of a waiting game to see what happens with Grace's seizures.
Wednesday, June 14, 2006
Injection
This morning the Iowa Methodist Home Heath came out to deliver Grace's ACTH and all of the supplies we will need to give her the drug. ACTH has to be given by injection and we will have to give it to her. Dr. Kabani said this agency would come out for a week to give/assist with injections but we found out that they only come out once. The nurse that delivered the supplies and gave Grace her first injection apparently saw the fear in our eyes and volunteered to come back tomorrow before going to work to assist us with our first injection.
We went to our pediatrician today for Grace's 4 month checkup, one would think with all of the recent visits to doctors this would have just been taken care of already. We will not be able to give grace her 4 month immunizations until after she is completely off of the ACTH which could take up to 6 months.
We went to our pediatrician today for Grace's 4 month checkup, one would think with all of the recent visits to doctors this would have just been taken care of already. We will not be able to give grace her 4 month immunizations until after she is completely off of the ACTH which could take up to 6 months.
Tuesday, June 13, 2006
Treatment
We met today with Dr. Kabani and we will be starting Grace on a drug called ACTH which is a steroid. This drug has the most promise in treating infantile spasms and can essentially wipe out the seizure she is having. There are lots of side effects of the steroid including weight gain, irritability, and a weakened immune system. We won't be able to take Grace anywhere with her weakened immune system not grocery shopping, daycare, church, no where except to doctor appointments.
We have been told that ACTH is the same drug that pilots were given in WWII to make the more awake and agitated. And we are giving this to a baby?
Grace is already on another seizure medication that they started her on while in the hospital called Clonapin will will keep her on this for awhile as she needs some drug therapy to until the the ACTH builds up in her system.
We have been told that ACTH is the same drug that pilots were given in WWII to make the more awake and agitated. And we are giving this to a baby?
Grace is already on another seizure medication that they started her on while in the hospital called Clonapin will will keep her on this for awhile as she needs some drug therapy to until the the ACTH builds up in her system.
Email Update 6/13
(This is an email sent out after returning home and being in a hospital for the last 5 days.)
We are home! We got home last night around 11:45pm. It was great to sleep in our own bed. Grace seemed to like her crib too. Hoover is very happy that we are home, I don't think his tail has stopped wagging.
We are home! We got home last night around 11:45pm. It was great to sleep in our own bed. Grace seemed to like her crib too. Hoover is very happy that we are home, I don't think his tail has stopped wagging.
Monday, June 12, 2006
Email Update 6/12
(This is an email sent out while at Children's Hosptial.)
We have good news! Grace DOES NOT have the very rare and life threatening form of Epilepsy called Aicardi Syndrome. We just got back from the Eye Doctor and are waiting for Dr. Ritter the Pediatric Epilepsy specialist we came here to see, he is busy until 4pm so we are hoping that we will be able to see him as soon as he gets back. Hopefully he will have a diagnosis and treatment plan that we can begin.
It is sounding like we may be able to go home today. Grace has had two seizures today, she had one on the way back from the Eye Doctor, but it was much lighter than her normal ones. Not sure if this means the medicine she is on is working or what.
We will let you know more as we find things out.
We have good news! Grace DOES NOT have the very rare and life threatening form of Epilepsy called Aicardi Syndrome. We just got back from the Eye Doctor and are waiting for Dr. Ritter the Pediatric Epilepsy specialist we came here to see, he is busy until 4pm so we are hoping that we will be able to see him as soon as he gets back. Hopefully he will have a diagnosis and treatment plan that we can begin.
It is sounding like we may be able to go home today. Grace has had two seizures today, she had one on the way back from the Eye Doctor, but it was much lighter than her normal ones. Not sure if this means the medicine she is on is working or what.
We will let you know more as we find things out.
Sunday, June 11, 2006
Email Update 6/11
(This is an email sent out while at Children's Hosptial.)
We are in St. Paul right now at Children's Hospital. They have a pediatric epilepsy unit that we are in; the doctor we are working with is part of the Minnesota Epilepsy Group which is considered to be the best in the Nation if not the World.
What we know so far...Grace has Epilepsy and a rare form at that. The Neurologist in Des Moines we are working with believed that Grace could have an even more rare and life threatening branch, he has only seen 1 case and the doctor we are up here with has seen 20; the doctor that discovered it in the 60's is still practicing has only seen 140. The doctor in St. Paul believes Grace DOES NOT have this! We will know more tomorrow as we are waiting for a Pediatric Eye Doctor to come in, he will be checking for some formation/deformation. This formation/deformation will indicate that she has this rare and life threatening branch.
Grace is on some medication which seems to be helping but for the most part we are just here for observation. They will be determining what medication she will need to be on, we may be able to go home on Monday or may have to stay for more observation depending on her medication. Or we may be able to go back to Des Moines and stay at Blank while they regulate medications.
That's all we know right now. Joy and I are doing well, considering all of this. We have come to the realization that Joy has been training all of her life for this with her working with mentally/physically handicapped and her OT background. For me this is going to be another lesson in patience.
I think Joy and I are going to get away for a little while, I'm taking Joy to the Minneapolis Sculpture Garden (Big Spoon and Cherry, look it up on the web you will probably recognize it) and then we are going to get something to eat. We have to get out of the hospital every now and then just to feel normal.
We've got lot of pictures of Grace; I'll have to start up her blog again so we can show everyone what is going on.
Thank you for your prayers!
We are in St. Paul right now at Children's Hospital. They have a pediatric epilepsy unit that we are in; the doctor we are working with is part of the Minnesota Epilepsy Group which is considered to be the best in the Nation if not the World.
What we know so far...Grace has Epilepsy and a rare form at that. The Neurologist in Des Moines we are working with believed that Grace could have an even more rare and life threatening branch, he has only seen 1 case and the doctor we are up here with has seen 20; the doctor that discovered it in the 60's is still practicing has only seen 140. The doctor in St. Paul believes Grace DOES NOT have this! We will know more tomorrow as we are waiting for a Pediatric Eye Doctor to come in, he will be checking for some formation/deformation. This formation/deformation will indicate that she has this rare and life threatening branch.
Grace is on some medication which seems to be helping but for the most part we are just here for observation. They will be determining what medication she will need to be on, we may be able to go home on Monday or may have to stay for more observation depending on her medication. Or we may be able to go back to Des Moines and stay at Blank while they regulate medications.
That's all we know right now. Joy and I are doing well, considering all of this. We have come to the realization that Joy has been training all of her life for this with her working with mentally/physically handicapped and her OT background. For me this is going to be another lesson in patience.
I think Joy and I are going to get away for a little while, I'm taking Joy to the Minneapolis Sculpture Garden (Big Spoon and Cherry, look it up on the web you will probably recognize it) and then we are going to get something to eat. We have to get out of the hospital every now and then just to feel normal.
We've got lot of pictures of Grace; I'll have to start up her blog again so we can show everyone what is going on.
Thank you for your prayers!
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