So I get asked often, "what exactly is wrong with Kate?". I may decide to pull all of this information down at some point. I'm not sure what is too much for a blog. To answer this question, I am posting excerpts from some of the info I've pulled together for all the specialist appointments. My hope is that this gives you a little insight into Kate. My prayer is that someone will read this and will have gone through something similar and will be able to advise us as to what to do next. Far fetched, I know.
1. Kate has had horrible, chronic diaper rash. She has gets a bright red, painful (to the point of vomiting) rash that has blisters at times, swollen areas, and often includes open sores. It is very raw and bleeds a lot. It happens every 2-3 weeks, if not more frequently and lasts anywhere from a day to several weeks. It is usually not associated with any other symptoms (ie. Diarrhea). We do not let her drink juice and have watched closely for foods that might be causing this but there doesn’t seem to be a common denominator. Her bottom can go from being totally clear to horrible burns with just one diaper. We are VERY cautious about changing her immediately after she has defecated. She has always been prone to diaper rashes, but the sores and extent of it have gotten worse the older she gets.
2. Kate had a labial adhesion a couple of times when she was younger. (5 months old)
3. Her umbilical cord had to be burned off because it still hadn’t made progress after 1 month. She also had a reaction to the silver nitrate that caused severe burns around her naval. This may have been caused by a Band-Aid the doctor placed over it to protect her clothing.
4. She was in physical therapy through ECI for being very pigeon-toed, bow legged, standing on the tops of her feet, funny gait, etc. She has outgrown most of this with age and walking, but still has some signs of it.
5. She has had several times where a large lump shows up on the side of her head. The first time it looked like someone had placed a golf ball under her scalp. She is allergic to mosquito bites and the doctor thought that she was just getting bit in very vascular areas, causing severe swelling. It is usually hard as a rock, but doesn’t hurt to push on it, nor does it turn blue like a bump would. It has always gone away within a week. (first time at 13 months old)
6. Her blood counts seem to be odd often. She’s had a LOT of labs drawn and I don’t know if there have been many, if ANY, times they did not show a “virus”.
7. She had a bad “virus” that caused a temperature of 104+ for a weekend. Her labs showed she was neutropenic (ANC 900). When her temp came down, it ran around 97 for a few weeks. It took quite a while for her labs and temp to come back up. (11 months old)
8. She has had goopy eyes and pink eye often. (earliest 3 weeks old)
9. She has had sinus infections (or at least lots of really nasty, green drainage) since before babies are supposed to have sinuses.
10. She has had MANY “viruses” (stomach, respiratory and skin).
11. The doctor was fairly certain she had RSV, although the test never showed positive, despite 3 different test dates. (5 ½ months old)
12. She was a very wheezy, rattle-y baby. Her reflux was not the classic projectile, but rather came out of her nose 90% of the time. She would also choke and hold her breath to the point of turning blue, often. (as early as 2 days old)
13. She has been diagnosed with a heart murmur and we are planning to see a cardiologist for further evaluation. (first noticed 18 months)
14. She has a lesion on her right humerus that has shown in some of her chest x-rays. We had an arm x-ray done to rule out anything bad and it came back showing it was just a spot that grew funny.
15. She had an upper GI when she was 1 month old that showed severe reflux.
16. She’s had many chest x-rays because the doctors constantly think she has pneumonia, but she has yet to be diagnosed as having pneumonia. Every time the x-ray comes back showing something “viral”. I am not sure if she has had a “clear” x-ray to date.
17. Her illnesses do not seem seasonal. She was just as sick in the spring and summer as she is in the fall and winter.
18. Her labs show anemia (RDW-CV always high), but the doctor is just now treating this with iron.
19. Most doctors feel that Kate, “looks way too good to be so sick”.
20. There are many times that Kate sounds horrible and her O2 saturation is in the high 90’s. Other times she does not sound as bad, but will have O2 levels in the low 90’s.
21. Kate's hands have looked like this (see below picture) for the last 3 to 4 weeks. At first we assumed they were dry from the cooler weather and running the heater. Then we thought it might be a reaction to her medicine changes. They look like a one day old baby or a very elderly persons hands. Then skin is very fragile and sensitive. It's almost painful for her when we touch it. I was able to take this picture to the pediatrician yesterday and she diagnosed her as having eczema. So now she is on a steroid cream.
2. Kate had a labial adhesion a couple of times when she was younger. (5 months old)
3. Her umbilical cord had to be burned off because it still hadn’t made progress after 1 month. She also had a reaction to the silver nitrate that caused severe burns around her naval. This may have been caused by a Band-Aid the doctor placed over it to protect her clothing.
4. She was in physical therapy through ECI for being very pigeon-toed, bow legged, standing on the tops of her feet, funny gait, etc. She has outgrown most of this with age and walking, but still has some signs of it.
5. She has had several times where a large lump shows up on the side of her head. The first time it looked like someone had placed a golf ball under her scalp. She is allergic to mosquito bites and the doctor thought that she was just getting bit in very vascular areas, causing severe swelling. It is usually hard as a rock, but doesn’t hurt to push on it, nor does it turn blue like a bump would. It has always gone away within a week. (first time at 13 months old)
6. Her blood counts seem to be odd often. She’s had a LOT of labs drawn and I don’t know if there have been many, if ANY, times they did not show a “virus”.
7. She had a bad “virus” that caused a temperature of 104+ for a weekend. Her labs showed she was neutropenic (ANC 900). When her temp came down, it ran around 97 for a few weeks. It took quite a while for her labs and temp to come back up. (11 months old)
8. She has had goopy eyes and pink eye often. (earliest 3 weeks old)
9. She has had sinus infections (or at least lots of really nasty, green drainage) since before babies are supposed to have sinuses.
10. She has had MANY “viruses” (stomach, respiratory and skin).
11. The doctor was fairly certain she had RSV, although the test never showed positive, despite 3 different test dates. (5 ½ months old)
12. She was a very wheezy, rattle-y baby. Her reflux was not the classic projectile, but rather came out of her nose 90% of the time. She would also choke and hold her breath to the point of turning blue, often. (as early as 2 days old)
13. She has been diagnosed with a heart murmur and we are planning to see a cardiologist for further evaluation. (first noticed 18 months)
14. She has a lesion on her right humerus that has shown in some of her chest x-rays. We had an arm x-ray done to rule out anything bad and it came back showing it was just a spot that grew funny.
15. She had an upper GI when she was 1 month old that showed severe reflux.
16. She’s had many chest x-rays because the doctors constantly think she has pneumonia, but she has yet to be diagnosed as having pneumonia. Every time the x-ray comes back showing something “viral”. I am not sure if she has had a “clear” x-ray to date.
17. Her illnesses do not seem seasonal. She was just as sick in the spring and summer as she is in the fall and winter.
18. Her labs show anemia (RDW-CV always high), but the doctor is just now treating this with iron.
19. Most doctors feel that Kate, “looks way too good to be so sick”.
20. There are many times that Kate sounds horrible and her O2 saturation is in the high 90’s. Other times she does not sound as bad, but will have O2 levels in the low 90’s.
21. Kate's hands have looked like this (see below picture) for the last 3 to 4 weeks. At first we assumed they were dry from the cooler weather and running the heater. Then we thought it might be a reaction to her medicine changes. They look like a one day old baby or a very elderly persons hands. Then skin is very fragile and sensitive. It's almost painful for her when we touch it. I was able to take this picture to the pediatrician yesterday and she diagnosed her as having eczema. So now she is on a steroid cream.
Here's a little history on Kate.
1. Kate was born via c-section at 38 weeks and had no complications before birth.
2. She had no problems at birth and was 6 pounds, 15 ounces and 20 inches long.
3. Kate was breastfed only until she was 15 months old.
4. She started table food by the time she was 6 months old.
5. She has been “ahead of the curve” on all of her milestones. At 18 months she can jump, hop across the room, hold a pencil correctly and uses silverware properly. She has always had amazing fine motor skills.
6. At 18 months, she speaks in sentences often and asks many questions (where’s my…, what are you doing, why, who is that, etc.).
7. Kate does not attend any type of childcare. She has always stayed home. She does not even go to Bible class or the nursery during activities. She has one sister, who until September did not attend childcare or school either. Her father and I both work from home. She has never played on a public playground, other than a handful of outdoor parks. She has had very minimal germ exposure and has what would appear to be very minimal germs carried into the household.
2. She had no problems at birth and was 6 pounds, 15 ounces and 20 inches long.
3. Kate was breastfed only until she was 15 months old.
4. She started table food by the time she was 6 months old.
5. She has been “ahead of the curve” on all of her milestones. At 18 months she can jump, hop across the room, hold a pencil correctly and uses silverware properly. She has always had amazing fine motor skills.
6. At 18 months, she speaks in sentences often and asks many questions (where’s my…, what are you doing, why, who is that, etc.).
7. Kate does not attend any type of childcare. She has always stayed home. She does not even go to Bible class or the nursery during activities. She has one sister, who until September did not attend childcare or school either. Her father and I both work from home. She has never played on a public playground, other than a handful of outdoor parks. She has had very minimal germ exposure and has what would appear to be very minimal germs carried into the household.
So who really knows what IS wrong with her.
5 comments:
Wow...my heart goes out to you guys. I will be praying for healing for Kate, perseverance for you, and wisdom for the doctors to find out what is causing all of this!
My word!! I am praying for you guys and that is a long list but maybe it is something as simple as an allergy - not to food but to laytex, alcohol in baby wipes, alcohol in soaps, alcohol in the hand sanitizer, soaps in general. The reason why I bring this up is because my mom is highly allergic to those things and where it does not present itself immediately, the more she is exposed overtime the reaction gets worse and worse. My mom cannot even use regular soaps, forget perfumes and forget hand sanitizer because her hands look just like little Kate's. She even had an episode with shampoo where her ears broke out.
Now I am not a doctor but there could be some correlation between soaps and Kate and it would some what make sense why her hands were breaking out and same thing with her poor little bottom. Maybe try switching to cloth diapers and use a warm wet cloth to wipe her and see if that helps.
Keep us posted. Love you guys!
i am so sorry to read about sweet little kate. it breaks my heart! although i'm CERTAINLY not a pro.. i have a question... what type of diaper is she using. if it's pampers, i STRONGLY encourage you to switch to organic diapers... the toxicity levels in papmers are sky high and are known to cause serious diaper rashes and infections... just a thought.
Hi There,
Just wondering if you had ever thought of vaccinations as the culprit?
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