When I read all of the research from the two doctors that support this condition I was certain that this is something we were dealing with. I found out about this about an hour after I had put my children to bed. An hour after I had slathered my child with this dangerous drug! That was on October 10th 2013. That was the last day I used topical steroids. I completely sure if this is what Bubba Fett would experience. I was completely devastated that this is something he could go through. I cried a lot. I became overly stressed and worried about my little boy. How could something that was suppose to help him be making him worse.
There are some factors that may contribute to a body becoming addicted to topical steroids. They are...(this is from the Itsan.org website.)
- You have uncontrollable, spreading eczema.
- You used topical steroids regularly for a period of time (weeks, months, or years).
- Topical steroids stopped working on your eczema. You need stronger topical steroids to get the same result as the first prescription.
- When you stop using topical steroid medication, your skin experiences one or more of the following symptoms: redness, burning, itching, skin is hot to the touch, swelling, and/or oozing.
- After many allergy/irritant tests, your physician still cannot uncover what is causing the problem.
- You did a skin biopsy and the results showed spongiotic dermatitis or nothing noteworthy.
The things that happen to your body when you go through topical steroid withdrawal are so devastating and debilitating. How could I deal with my two year old going through this, a 4 and a half year old AND a NEWBORN baby? I wasn't sure how I would handle it but I knew that I needed to do something for my son because something had to change. The course we were heading was not the answer!
Speaking of the symptoms of withdrawal let me fill you in on some of them...
First, there is the ITCH. The uncontrollable, insatiable itch! It is so bad that Bubba Fett cannot stay asleep. He wakes up multiple times a night for an itch fest and BEGS me to itch him. He has to wear socks DUCT TAPED to his hands at night and sometimes throughout the day because he will dig at his skin, breaking it open and causing his skin to be worse. He wears footed pjs under his normal clothes so that he cannot lift up his pant leg or shirt and hit the crap out of himself. There have been a few times that I have walked into the living room and he has unzipped his pjs and began digging at his skin. Or I went to check on him while he was sleeping and he has taken his pjs off completely, as well as ripping his diaper off of himself. The thing is from what I heard is that it is not just an itch...it's a burn.
Second, there is the spreading red skin. Bubba Fett is not at this point yet but from what I have seen and read from other people is that their skin becomes red all the way down to the palms but stops abruptly at the wrist. This is caused by the blood vessels opening back up. Because the topical steroids close the blood vessels to prevent the eczema from flaring (that is what I understand anyway)
Third, there is an ooze that happens. This is also due to the blood vessels opening back up. This can smell,. and become sticky and dry. This has also not happened to Bubba Fett. I hope that it doesn't actually I hope that all of this doesn't happen to him! But there isn't much I can do about that!
Forth, extremely dry, flaky skin or "snow" as some refer to it as. After a flare the skin will flake off. Almost as if a snake is shedding its skin. I guess that is really what is happening. Your skin has been through a major healing and now it wants to get rid of the dead and gross skin.
Fifth, insomnia. This is probably caused by your body trying to regulate itself. Also because you are unable to have a full nights sleep because you cannot stop itching.
Sixth, your body temperature can become weird. Bubba Fett has been complaining that he is cold. This started even a few days after we stopped the topical steroids. Your skin is what helps you to keep your body temp. So if your skin is having some serious SERIOUS issues then it stands to reason that this would be an issue.
I will leave it at that, for now. These are enough to make anyone squirm. But a two year old? Plan cruel. Some or all of these is something that he has to go through? I cannot fathom why doctors will not research or listen to why these topical steroids are so bad.
Many people who are experiencing TSA/W have talked to doctors that brush them off and say that this is not possible. Some have even threatened to call CPS or child welfare on the parents who are trying to heal their children from this horrific addiction. These parents are just trying to do what they feel is best for their children!!! Just because they are not putting on topical steroids does not mean they are being neglectful. It is the total opposite! They are trying to help their children in the best way they know how. I am a strong believer in mothers intuition!
Second, there is the spreading red skin. Bubba Fett is not at this point yet but from what I have seen and read from other people is that their skin becomes red all the way down to the palms but stops abruptly at the wrist. This is caused by the blood vessels opening back up. Because the topical steroids close the blood vessels to prevent the eczema from flaring (that is what I understand anyway)
Third, there is an ooze that happens. This is also due to the blood vessels opening back up. This can smell,. and become sticky and dry. This has also not happened to Bubba Fett. I hope that it doesn't actually I hope that all of this doesn't happen to him! But there isn't much I can do about that!
Forth, extremely dry, flaky skin or "snow" as some refer to it as. After a flare the skin will flake off. Almost as if a snake is shedding its skin. I guess that is really what is happening. Your skin has been through a major healing and now it wants to get rid of the dead and gross skin.
Fifth, insomnia. This is probably caused by your body trying to regulate itself. Also because you are unable to have a full nights sleep because you cannot stop itching.
Sixth, your body temperature can become weird. Bubba Fett has been complaining that he is cold. This started even a few days after we stopped the topical steroids. Your skin is what helps you to keep your body temp. So if your skin is having some serious SERIOUS issues then it stands to reason that this would be an issue.
I will leave it at that, for now. These are enough to make anyone squirm. But a two year old? Plan cruel. Some or all of these is something that he has to go through? I cannot fathom why doctors will not research or listen to why these topical steroids are so bad.
Many people who are experiencing TSA/W have talked to doctors that brush them off and say that this is not possible. Some have even threatened to call CPS or child welfare on the parents who are trying to heal their children from this horrific addiction. These parents are just trying to do what they feel is best for their children!!! Just because they are not putting on topical steroids does not mean they are being neglectful. It is the total opposite! They are trying to help their children in the best way they know how. I am a strong believer in mothers intuition!
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