Two cuties who are ready for spring and riding the tractor with daddy.
Wednesday, February 8, 2012
Friday, February 3, 2012
Mastocytosis
Ok so I thought I should finally talk about what all that research lead me to believe what these spots are. Mastocytosis is a rare skin disease. Rare like most specialist haven't seen it rare. You maybe asking...what is it and why do you think this is what Max has. First I should say I hope this is not what Max has, but it isn't looking good for the home team.
Mastocytosis is a skin disorder that effects your skins Mast cell. If you want the details see this link or these links. Basically you have spots that are clusters of mast cells that when they get inflamed you have hives and an allergic reaction. Mast cell can be found all over your body. They can be found in you skin, liver, spleen, stomach, bone, and other places. The ones listed above are the most commonly effected. We are hoping that only Max's skin is effected and that it is only minimally effected. A mastocytosis reaction can be as bad as itchy skin to swelling of lips, eyes and airway. We will have to have an epi pen with us at all times just in case. We will also have to be very careful when he starts foods to see if he has a reaction. Heat, friction, and stress can also cause reactions. We just won't know what he reacts to until it happens and then we will have to adjust accordingly. There is no cure for Mastocytosis. There are medications that can help cope with daily life, but no cure. About 50% of cases go away by puberty, but the other cases usually have more systemic involvement. We are obviously hoping for the case that goes away by puberty.
More to come. I have had some divine intervention since coming up with this diagnosis.
Mastocytosis is a skin disorder that effects your skins Mast cell. If you want the details see this link or these links. Basically you have spots that are clusters of mast cells that when they get inflamed you have hives and an allergic reaction. Mast cell can be found all over your body. They can be found in you skin, liver, spleen, stomach, bone, and other places. The ones listed above are the most commonly effected. We are hoping that only Max's skin is effected and that it is only minimally effected. A mastocytosis reaction can be as bad as itchy skin to swelling of lips, eyes and airway. We will have to have an epi pen with us at all times just in case. We will also have to be very careful when he starts foods to see if he has a reaction. Heat, friction, and stress can also cause reactions. We just won't know what he reacts to until it happens and then we will have to adjust accordingly. There is no cure for Mastocytosis. There are medications that can help cope with daily life, but no cure. About 50% of cases go away by puberty, but the other cases usually have more systemic involvement. We are obviously hoping for the case that goes away by puberty.
More to come. I have had some divine intervention since coming up with this diagnosis.
Monday, January 30, 2012
More Research
Well I have done more research. I have looked up more skin conditions than I can think of. In every article they would name conditions and I would click on that and then look up the images to see if that is what Max had. Image after image, article after article and nothing. I couldn't find anything that looked like Max's spots. How could I not be able to find anything that looked like it? Then it happened I found a spot that looked like Max's. I didn't want this spot to look like Max's. I read and read and nothing sounded good about these spots. These spots came with a rare disease that could send my precious baby boy into anaphylaxis at anytime. I really don't want these to be Max's spots. The more I read the more I believed that these are Max's spots, but I don't want to believe. I took pictures of Max's spots and post it on a forum that I found in hopes that they would say no way this is it. That didn't happen. I got responses like welcome, that looks like it, and instructions on what to do. I scratched a spot and immediately it turned into a hive which is a classic sign of this condition. I am in shock. I don't know what to say or do. My world is spinning out of control and I don't know how to make it stop. I am going to the doctor tomorrow with him to hand over the research I found and see what the pediatrician says. Then he has an appointment with an allergist for April 30th. I can't wait that long, but I have to wait until tomorrow to go into that. I don't want to say what it is until I go to the appointment tomorrow. Just know that it could change our life, but especially his.
I am having a hard time right now wondering how my beautiful little boy will be able to do everything in life. You know those things that you dream of doing as a family. Ours include playing outside, riding bikes, riding four wheelers, camping, snowboarding, swimming, just everything that families do. Now I am not sure that it is going to be possible. I still have hope, but it has been hard.
More to come.........
I am having a hard time right now wondering how my beautiful little boy will be able to do everything in life. You know those things that you dream of doing as a family. Ours include playing outside, riding bikes, riding four wheelers, camping, snowboarding, swimming, just everything that families do. Now I am not sure that it is going to be possible. I still have hope, but it has been hard.
More to come.........
Research
Well you know the saying if it is to good to be true it probably is. I wish this wasn't the case especially since we are talking about my beautiful sweet little boy. I went home and diligently researched Pustular Melanosis hoping that I was going to get to call YaYa and tell her they were right.
Pustular Melanosis happens at birth or it happens while pregnant. You notice it at birth. The spots will be pustular and very fragile or broken spots with a brown mark in the middle. They break very easy and so you may never see a pustule, because they break during delivery. When the spots break they may have a white circle of skin with a brown dot in the middle. It kinda of looks like a freckle. These spots slowly fade. You should see improvement in 3 weeks and they will be gone in 3 months. So basically you have to live with it for 3 months and then it is gone. Not a bad thing right? Sounds pretty good huh?
Well here is the problem with this diagnosis. Max had only one or two spots at birth. If this is supposed to have all the spots at birth than this is problem one. Max does have pustules, but pustules have been there for at least 2 weeks. The above mentioned pustules are suppose to be delicate and should pop upon contact. Max's are on his neck and I have touched the on purpose and by accident and they are still there. That is problem two. The spots should have started with a white skin circle around them and not just brown spots. Max has never had white skin circles. That is problem three. These should all be spots. You know spots that are round. Max has round spots and more oval like spots that has no defined edges. That is problem four. The last issue is these spots are suppose to be benign. If you scratch one of Max's spots it turns red like a hive and then turns it into a blister. This is problem five.
I don't know how this could be even close. With five issues with this diagnosis I am going to go ahead and rule it out. I would have been the best diagnosis I could have hoped for, but alas it was not to be. I am sad for my boy. The one who is having to live with these spots.
Pustular Melanosis happens at birth or it happens while pregnant. You notice it at birth. The spots will be pustular and very fragile or broken spots with a brown mark in the middle. They break very easy and so you may never see a pustule, because they break during delivery. When the spots break they may have a white circle of skin with a brown dot in the middle. It kinda of looks like a freckle. These spots slowly fade. You should see improvement in 3 weeks and they will be gone in 3 months. So basically you have to live with it for 3 months and then it is gone. Not a bad thing right? Sounds pretty good huh?
Well here is the problem with this diagnosis. Max had only one or two spots at birth. If this is supposed to have all the spots at birth than this is problem one. Max does have pustules, but pustules have been there for at least 2 weeks. The above mentioned pustules are suppose to be delicate and should pop upon contact. Max's are on his neck and I have touched the on purpose and by accident and they are still there. That is problem two. The spots should have started with a white skin circle around them and not just brown spots. Max has never had white skin circles. That is problem three. These should all be spots. You know spots that are round. Max has round spots and more oval like spots that has no defined edges. That is problem four. The last issue is these spots are suppose to be benign. If you scratch one of Max's spots it turns red like a hive and then turns it into a blister. This is problem five.
I don't know how this could be even close. With five issues with this diagnosis I am going to go ahead and rule it out. I would have been the best diagnosis I could have hoped for, but alas it was not to be. I am sad for my boy. The one who is having to live with these spots.
Pustular Melanosis
Well we had our doctors appointment and I got a great diagnosis. They said it was Pustular Melanosis. Barb Matthews looked at him and said I have no clue and went to get Dr. Lopez. Dr. Lopez said that he has studied Pustular Melanosis and thinks it is that. He went to go look at some books and they came back to say yep it was it. Then Dr. Smith came in. He had seen this rare skin condition before and in a flash he confirmed. While it sounds bad Pustular Melanosis is a benign skin condition that will go away in about 3 months. It will fade in as little as 3 weeks and requires no care or follow up. I guess it is a rare skin condition and in the 20 plus years Barb has been practicing medicine she has never seen it. I hopping this is it, but my mom and I have this feeling like things are matching up. I can't say for sure until I get home and research it. I would love it to be this. This would be the best outcome I could have imagined.
Stay Tuned for the research.............
Stay Tuned for the research.............
Thursday, January 26, 2012
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Spots
Max has spots. Well this isn't a new thing. He has had some spots on his face and neck for awhile. His spots are increasing. They are on his front, back, and legs. They have been slowing increasing and now they are growing in size. The size and increase in number has made me worried. I thought I could wait til his 2 month physical on Tuesday. Well I did what I should have not done and googled the spots. The internet can bring out the crazy mother in me I guess and it has. Nothing I found about the spots were good. I went to the peeps yesterday and Baba freaked me out even more. She looked at the spots and said he needs to see a doctor. Really freaked me out. She said she had never seen anything like that. Great now everything is running through my mind. Have I missed something. Why wasn't I worried before? Have I put my son in jeopardy? I called this morning and we have an appointment at 1:30 today. We have to start at the pediatrician, but I have a feeling we will be making an appointment with a dermatologist. Needless to say I hope I can get on her later and tell you that I was over reacting and the spots are nothing. He will just need some cream and they will go away.
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