Okay it looks like we may be getting into a system and routine. In some ways I am already seeing little improvments in other ways not so much. He is doing really good with his meds even the yucky ones. He has done better the last few days and seems to be getting more energy. His seizures have been MUCH better the last few days so for that we are VERY thankful.
Thanks to some friends and family we were able to get a blender type thing that was recommended by the doctor called a Vita Mix it mixes things so super fine and you can make all kinds of things in it. We can now hide lots of things in smoothies easier. I was shocked by all it could do. So blessed we were able to get it and thankful for the help from family and friends.
This will be week 2 of the new meds and schedule and I am beginning to see it leveling out and becoming more of routine and see him adjusting well too.
Monday, May 25, 2009
Thursday, May 21, 2009
typical schedule
Brae hasn't got sick again so for that we are very thankful. We believe he chewed a pill that was suppose to be a swallow pill and it just entered his system to quickly.
To give everyone a better understanding here is a typical schedule for Brae.
AM - takes 2 liquid medicines that are so horrible tasting
takes 14 swallow pills
Noon - takes 1 liquid medicine
takes 10 swallow pills
PM - takes 1 liquid medicine
takes 16 swallow pills
Before Bed - 2 pills
Each day he has to do certain excercises that are to help the body release things, such as a mini trampoline, etc. He has 30 minutes of those a day, he has to drink 80 ounces of water, he has to take certain baths that is another way to draw out the copper he hates hates these he does them every day we even set up the portable dvd player in the bathroom for him.
Anyway that is just a sample some days he has a few more things.
The diet is going well. We had to get a vitamix mixer to make fruit smoothies etc so that he would get more nutrients than using a blender, etc. So playing with that and dehydrating lots of fruit for him to have as well. The trick with that is measuring the glycemic index.
He broke my heart yesterday telling his sister how lucky she was that she wasn't sick her whole life like he is. She felt guilty she cleaned his room for him...knowing Brae that may have been the plan :)
His attitude has faltered here and there and who could blame him but for the most part he is just handling it all wonderfully.
To give everyone a better understanding here is a typical schedule for Brae.
AM - takes 2 liquid medicines that are so horrible tasting
takes 14 swallow pills
Noon - takes 1 liquid medicine
takes 10 swallow pills
PM - takes 1 liquid medicine
takes 16 swallow pills
Before Bed - 2 pills
Each day he has to do certain excercises that are to help the body release things, such as a mini trampoline, etc. He has 30 minutes of those a day, he has to drink 80 ounces of water, he has to take certain baths that is another way to draw out the copper he hates hates these he does them every day we even set up the portable dvd player in the bathroom for him.
Anyway that is just a sample some days he has a few more things.
The diet is going well. We had to get a vitamix mixer to make fruit smoothies etc so that he would get more nutrients than using a blender, etc. So playing with that and dehydrating lots of fruit for him to have as well. The trick with that is measuring the glycemic index.
He broke my heart yesterday telling his sister how lucky she was that she wasn't sick her whole life like he is. She felt guilty she cleaned his room for him...knowing Brae that may have been the plan :)
His attitude has faltered here and there and who could blame him but for the most part he is just handling it all wonderfully.
Tuesday, May 19, 2009
Not off to the greatest of starts
We started our new meds and things today. It started out hard because of the taste of some of the new meds. It has gotten worse as he started vomiting this afternoon. He says he hates the new meds. The docs have assured me it will get better as he gets adjusted to it all.
Monday, May 18, 2009
Home
We are back from Texas.
Still trying to wrap my head around everything and get everything implemented. It is very overwhelming at times.
Brae still has his amazing attitude for which I am forever grateful. His number of pills he has to take is astronomical yet he does it, not that he doesn't groan now and then but basically he does it without a fuss.
Anyway we are home and will start stuff tomorrow. The main fear is something contradicting because he has so many different issues they are treating for.
Still trying to wrap my head around everything and get everything implemented. It is very overwhelming at times.
Brae still has his amazing attitude for which I am forever grateful. His number of pills he has to take is astronomical yet he does it, not that he doesn't groan now and then but basically he does it without a fuss.
Anyway we are home and will start stuff tomorrow. The main fear is something contradicting because he has so many different issues they are treating for.
Wednesday, May 13, 2009
Planning it all out
Today was lots of talking with the docs planning out what will have to be done the next 6 weeks. It can get very overwhelming. Brae is holding together so well. He had a seizure yesterday afternoon and I know it was stress. Today he got dizzy but I think this time was heat. We are learning how so many things are working against each other in his body. The real trick is to make all his treatments work without counteracting with another treatment for a separate issue.
I am blessed to have doctors that work together. We were having a little tiff between a couple of docs and another one summed it up quite well. He said everyone wants to be right especially with Brae he said Brae is a textbook article, so of course all want to be the one that figured it all out. However the reason he is my favorite his statement was "I will gladly admit I am wrong if something they figure out works better for him than what I am doing". It made sense they way he put it all to me. However I think they are all soothed and know that we are all working together.
Tomorrow will be a much easier day for him and he is looking forward to that. We are hoping to head home sometime Sunday. We would like to be home before then but that isn't going to work so Sunday will be great. We will be coming back the last week in June basically like clock work every six weeks. Everyone teases about how organized I am but you haven't seen anything yet to make all these treatments and supplements work eek I told Braden I am going to set alarms on my cell phone and we are going to make a calendar him and I were brainstorming different ideas to help us on our way between appointments.
I am blessed to have doctors that work together. We were having a little tiff between a couple of docs and another one summed it up quite well. He said everyone wants to be right especially with Brae he said Brae is a textbook article, so of course all want to be the one that figured it all out. However the reason he is my favorite his statement was "I will gladly admit I am wrong if something they figure out works better for him than what I am doing". It made sense they way he put it all to me. However I think they are all soothed and know that we are all working together.
Tomorrow will be a much easier day for him and he is looking forward to that. We are hoping to head home sometime Sunday. We would like to be home before then but that isn't going to work so Sunday will be great. We will be coming back the last week in June basically like clock work every six weeks. Everyone teases about how organized I am but you haven't seen anything yet to make all these treatments and supplements work eek I told Braden I am going to set alarms on my cell phone and we are going to make a calendar him and I were brainstorming different ideas to help us on our way between appointments.
mind spinning
Still one more appointment to go today. My mind is overwhelmed. Brae is laying down taking a nap between appointments. He is so tired. I have to watch what I talk about in front of him he overheard me on the phone talking about costs and got really upset. So I told him it was no big deal that mom would give up her flip flop obsession if I needed to and he laughed and said I must love him a lot not to buy anymore flip flops..LOL.
Anyway I think I will have the equivalent of a phd or pharmacy degree when we get this all settled. Bless his heart the amount of medications and supplements he is on is mind boggling. I will say this over and over but it is such a blessing how well he takes pills. Not many 10 year old boys would without arguing swallow 22 pills with breakfast. So for that I am blessed.
We are overhauling everything basically. Hopefully it will work but I am always nervous when they change too much at once because if something does work you can't really tell what it was and same thing if something doesn't.
Anyway I think I will have the equivalent of a phd or pharmacy degree when we get this all settled. Bless his heart the amount of medications and supplements he is on is mind boggling. I will say this over and over but it is such a blessing how well he takes pills. Not many 10 year old boys would without arguing swallow 22 pills with breakfast. So for that I am blessed.
We are overhauling everything basically. Hopefully it will work but I am always nervous when they change too much at once because if something does work you can't really tell what it was and same thing if something doesn't.
Tuesday, May 12, 2009
Update
I will start this by saying I am frustrated and thankful all at the same time. I am thankful that they have found a reason for the cooper poisoning, I am frustrated because I hoped it would tie some of his issues together. It has not done that it has given us another issue.
We still have several more doctors appointments this week so we don’t know everything right now but here is what we do know. He has been diagnosed with Wilsons Disease. Wilson's disease is a rare inherited disorder that affects about one in 30,000 people worldwide. In Wilson's disease, the body is unable to excrete excess copper. Copper is found in most foods and most people get an excess of copper in their daily diet. Normally, the body releases copper into bile, a substance secreted by the liver, which helps in digestion and detoxification of the body.
In Wilson's disease, the copper is not released into the bile, but rather builds up in the liver. This causes progressive damage to the liver. Eventually, the copper is released into the bloodstream and deposits in other organs including the brain, kidneys and eyes (corneas). Without treatment, the disease may cause severe complications, including some that are life-threatening. The symptoms of Wilson's disease are highly variable and usually appear between the ages of 5- 35.
They did a blood test for levels of cerplasmin (copper protein) in the blood and an and an eye exam to look for Kayser-Fleischer rings. With proper diagnosis and treatment, the progress of the disease can be stopped and symptoms may improve. Drug therapy is usually continued for life. We will be using drugs called penicillamine and trientine that work by binding to copper and causing it to be excreted through the urine. They will be watching this process very closely making it necessary to travel more here. If continued damage occurs or this was not caught we would most definitely have to have a liver transplant. The doctor is hopeful they have caught it in time. Once the existing copper is removed from the body, he will be taking zinc to prevent it from reaccumulating along with a conjunction of medication therapy.
Like I said we have a lot more appointments and results to get. Specific prayer requests include Braden’s mental state as he deals with all of this, his physical state as there are still issues they don’t know why they are occurring, insurance company who is being completely unreasonable, that our travels here will be what he needs but not as often as they are currently stating it will be as I am not sure how we will be able to handle the amount of time they want us down here but know that whatever we have to do we will.
We still have several more doctors appointments this week so we don’t know everything right now but here is what we do know. He has been diagnosed with Wilsons Disease. Wilson's disease is a rare inherited disorder that affects about one in 30,000 people worldwide. In Wilson's disease, the body is unable to excrete excess copper. Copper is found in most foods and most people get an excess of copper in their daily diet. Normally, the body releases copper into bile, a substance secreted by the liver, which helps in digestion and detoxification of the body.
In Wilson's disease, the copper is not released into the bile, but rather builds up in the liver. This causes progressive damage to the liver. Eventually, the copper is released into the bloodstream and deposits in other organs including the brain, kidneys and eyes (corneas). Without treatment, the disease may cause severe complications, including some that are life-threatening. The symptoms of Wilson's disease are highly variable and usually appear between the ages of 5- 35.
They did a blood test for levels of cerplasmin (copper protein) in the blood and an and an eye exam to look for Kayser-Fleischer rings. With proper diagnosis and treatment, the progress of the disease can be stopped and symptoms may improve. Drug therapy is usually continued for life. We will be using drugs called penicillamine and trientine that work by binding to copper and causing it to be excreted through the urine. They will be watching this process very closely making it necessary to travel more here. If continued damage occurs or this was not caught we would most definitely have to have a liver transplant. The doctor is hopeful they have caught it in time. Once the existing copper is removed from the body, he will be taking zinc to prevent it from reaccumulating along with a conjunction of medication therapy.
Like I said we have a lot more appointments and results to get. Specific prayer requests include Braden’s mental state as he deals with all of this, his physical state as there are still issues they don’t know why they are occurring, insurance company who is being completely unreasonable, that our travels here will be what he needs but not as often as they are currently stating it will be as I am not sure how we will be able to handle the amount of time they want us down here but know that whatever we have to do we will.
Thursday, May 7, 2009
More doctors
We leave Monday to be in Austin on Tuesday. Brae has to see a Hepatologist for the liver issues that seem to be occcuring.
He is 10 now!
Brae is doing better the last few days. He turned 10 on Tuesday. He curled up on my lap and told me he would still cuddle with me even though he was 10. He got mad at his sister when she told him he was almost a tween he argued he was not he was a kid.
I am getting frustrated with lack of response from our doctors in regards to my questions on the metal toxicity test. I have never had a problem with this particular doctor before but I am wanting specific answers and I have a feeling some of the answers may involve the supplements he has put Brae on so I don't know if that is why he is steering away from answering me or not. I am taking the lab report to a doctor friend of mine in Fort Smith today who said he would look at it and see if he could help me understand a few things.
I am getting frustrated with lack of response from our doctors in regards to my questions on the metal toxicity test. I have never had a problem with this particular doctor before but I am wanting specific answers and I have a feeling some of the answers may involve the supplements he has put Brae on so I don't know if that is why he is steering away from answering me or not. I am taking the lab report to a doctor friend of mine in Fort Smith today who said he would look at it and see if he could help me understand a few things.
Sunday, May 3, 2009
Frustration
I feel like I am blogging the same things all the time. One day he is sick, then fine, then something we can't figure out, on and on over again.
Something is going on with him and we just can't get it figured out. So weird so random but definitely something. It is so frustrating.
He did okay with me gone for 2 nights. This rash issue is getting worse, now he is complaining of neck and back pain, before it was leg pain. The rash is still random.
Something is going on with him and we just can't get it figured out. So weird so random but definitely something. It is so frustrating.
He did okay with me gone for 2 nights. This rash issue is getting worse, now he is complaining of neck and back pain, before it was leg pain. The rash is still random.
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