Additional Side Effect

I completely forgot one of the worst side effects – Nerve Pain or Zingers!  I can’t believe that I remembered this side effect now, when my daughter is no longer getting zingers.  I have no clue what made it pop into my twisted mind now.  She suffered from the zingers somewhere around month 2 and they stuck around until about month 5 or 6 then slowly went away.

Sometimes the nerve pain would get so bad that I could see her body actually jump from the pain.  It would wake her from a deep sleep when it was really bad.  Different things helped.  Motrin did help a little but it really just took the edge off, which she was grateful for.  Heating pads are great.  That was the most help, plus she was always freezing at that point so it also warmed her up.      Luckily they are gone now which is another sign of her body learning to regulate itself.

Advertisements
Posted in Additional Side Effects, History | 3 Comments

TSW Month 7

Month 7 has brought my daughter a lot more energy.  She has been on the trampoline almost daily.  By the middle of month 7 she was jumping several times a day for over a half hour each time.  This of course causes more sweat (which sucks) but it is worth it to see her enjoying herself so much.

Flip

Bath time still sucks!  She screams so we still run around the house closing the windows until she is done.  It stings like crazy for the first 5 – 10 minutes and then it gets better.  Then the itch starts and she goes crazy until she is out of the tub.  GOOD TIMES!!!!!

Her skin really hasn’t showed a lot of improvement but every little bit counts.  It looks a little better but not much.  Her feet are still a disaster.

Foot 9-6-13

Her hands are still pretty raw at times.

Hand 8-31-13 2Hand 9-7-13

Her face is still bad. Nose and Chin 9-8-13

HOWEVER, I do see more clear skin surrounding all of the scabby, scaly, crusty areas.  I also see more clear areas on her arms and her thighs.

Leg 9-6-13

Her shoulders, chest and arms look better than the rest of her body but her stomach still gets pretty red.

Stomach 8-31-13

Every tiny area of clear skin is so encouraging.

School started at the end of month 7 which caused some issues but nothing terrible.  She was worried and scared but excited about seeing all her friends.  Typical stress that all kids experience.  She did great and was so happy to see everyone but boy was she tired.  By the 3rd day of school she was used to it.

Onto month 8!

Posted in History, TSW Month 7 | Tagged , , , , | Leave a comment

Shedding and Oozing and Sweating – Oh My!

We need to talk about the three things that are driving us the craziest right now: shedding, oozing and sweating.  We have been in a constant battle with the shedding from pretty early on.  The oozing started a little later but seems to want to hang on for dear life at certain spots.  The sweating is fairly new and is just plain annoying.

SHEDDING: Shedding, flaking, peeling or molting are our nemesis.  Since the beginning of Topical Steroid Withdrawal my poor daughter has been losing so much skin that we have to vacuum constantly.  The shedding has gotten a little better but I still have to vacuum daily.  We can not seem to stop the shedding with any oils, ointments, creams, etc. so these are the things that I do to manage the excessive amounts of skin that are all over my house.

CLOTHES – Never, and I mean NEVER wear black out of the house.  All black (or dark) clothes are only to be worn when you know you will not leave the house and no one is coming over.   We try to stick to light colors so that you can not see all the dead skin that has come off.  Also, I shake all her clothes out the window before putting them in the laundry.  It makes it so much easier to keep my washing machine free from all that debris.

BEDDING- I change my daughters sheets daily.  I shake the sheets out the window too.  I figure the more skin I get out of the house, the better.  I keep 3 sets of sheets on her bed.  It streamlines the process.  Her bed is like a layer cake.  1 mattress protector, 1 fitted sheet, 1 flat sheet,  1 mattress protector, 1 fitted sheet, 1 flat sheet, 1 big towel (I only had 2 mattress protectors), 1 fitted sheet, 1 flat sheet.  So every morning after my daughter gets out of bed I pull off the top sheet, fitted sheet and mattress protector (or towel), shake them out the window and I have a fresh layer underneath.  I just put her quilt back on the bed.

COUCH- My daughter lives on the couch.  Since starting TSW the couch is where her little butt sits from the moment she gets up until she goes to bed.   I keep a full size fitted sheet on my couch to protect it.  We plan on replacing the couch when all this is over but for now the sheet is a huge help.  At the end of the day I pull off the sheet and shake it out the window, stick it in the hamper and put on a new fitted sheet.  Between the clothes and the sheets that we shake out the window, it looks like it has snowed only on our house.

FLOORS – At the beginning of TSW I was vacuuming several times a day to get all the skin off the floors.  At 7 months we are down to using the vacuum daily.  If I don’t get the skin up our dog licks it up off the floor, which is pretty gross and drives my daughter crazy.

OOZING: Oozing or seeping is probably one of the most disgusting parts of TSW.  It smells bad, makes your clothes and sheets smell bad, makes your whole house smell bad.  Your clothes stick to oozy spots.  The ooze beads and drips in areas that aren’t covered by clothes, like your face.  Most importantly it feels bad.  Luckily my daughter’s oozy spots are now only small spots but they still create the same problems.

STOPPING THE OOZE: There are only a couple of things we used for ooze that worked for us – Domeboro Solution (or Burrows Solution) and Desitin.  We soaked washclothes in Domeboro mixed with water and wrapped them around her bad oozy spots (feet and wrists) for 15 minutes.  For her face we used Desitin.  We only did this if she was home.  She no longer lets me do either of these things but they did seem to help at the time.

FUNKY CLOTHES: As I noted above, I shake all my daughter’s clothes out the window before they go in the hamper.  It took some trial and error (and lots of advice from others who have gone through this) but I finally found the best way to get the odor out of her clothes.  I wash her clothes twice.  First I wash them in hot water and vinegar.  I buy a giant jug of white vinegar at BJs.   I use at least 1 cup, more depending on the size of the load.  Once that is done, I wash her clothes again with free and clear detergent and at least a cup of baking soda (thanks Melissa).  This has seemed to help with the odor tremendously.

STINKY SHEETS: Her sheets don’t smell quite as bad as her clothes.  They just have a hint of the odor.  I am probably the only one who notices it because I stupidly stick my nose right in there every morning.  You would think I would learn!  I blame it on lack of sleep.  So, again I shake the sheets out the window then into the hamper.  I only wash her sheets once (this includes the sheets from the couch).  I don’t use the vinegar on the sheets because the smell isn’t so bad.  I wash them with free and clear detergent and about a half a cup of baking soda,  They come out stank free!

SMELLY HOUSE: Days when she is pretty oozy and stuck inside all day, the house gets a slight rancid smell.  To get rid of the smell we opened the windows.  Sounds simple, doesn’t it?  Well, it is tricky when your child is freezing cold and air hurts her skin.  So, we do the window shuffle.  We open her bedroom window as soon as she is out of bed and on the couch.  This stays open all day unless it is pouring rain.  When she goes to bed at night the living room, dining room and kitchen windows get opened and stay that way all night.  She rarely goes anywhere else in the house so problem solved – no odor.

SWEATING: Sweating is actually a good thing.  It means the adrenal system is healing (or at least that is what I have read and believe).  My daughter never sweat in her life so the first time she was sweating I was jumping for joy.   She was less than thrilled.  Unfortunately with sweat comes stinging, itching, wet clothes and sheets.

SWEAT STING: When the sweat touches my daughter’s skin, it really stings.  The only thing that seems to help is ice.  It isn’t a miracle cure but it does help a little.  Sometimes if it is really bad she will ask for something for the pain.  I give her Tylenol or Motrin.

THE SWEATY ITCH: From what I am told this itch is different from the deep, to the bone, itch.  My daughter says that this is more annoying and the deep itch really drives you crazy.  Again we use ice.  There really isn’t anything else we can do.  Baths help others but she says the bath makes her itchier.

WET CLOTHES AND SHEETS: Change your clothes frequently and wash sheets regularly.  There really isn’t any good advice for me to give on this.

So that is all I have to say about the 3 things that torture my poor child.  My advice is more about managing the home since I can’t seem to do a whole lot to make her feel any better.  One day this will all be a distant memory for her but I think it will stay with me longer, like post traumatic stress syndrome.

Posted in History, Shedding and Oozing and Sweating - Oh My! | Tagged , , , , , | 7 Comments

TSW Month 6

So, we completed month 6 and not much has changed with my daughter since month 5.  That is a little frustrating but we knew this was going to be a long slow process.

THOSE DAMN FEET! – Every other area of my daughter’s body has shown a little improvement but her feet just do not seem to want to heal.  I have no idea what to try or if I should just leave it alone.  They are so damn red and raw.  It makes me want to scream.  Can you believe these are the feet of a young girl?  I know it sounds crazy but I look at those tiny patches of white and it gives me hope.

 Foot 7-21-13Foot 7-23-13    

EYEBROWS:  The eyebrows seem to be coming in a little bit.  In Months 4 and 5 she had no eyebrows at all and now there is some hair growth.  That is very encouraging to me.  I understand that she could lose them again but for now I am holding onto the hope that they will continue to get thicker.

No Eyebrows 6-9-134 Months  Forehead 7-27-136 Months

FACE – There has been improvement to my daughter’s face.  The first few months her entire face was bright red and flaky.  It was so dry that it was cracking.  There are some smooth areas now and it isn’t quite as red.  When I look at the 6 month picture below and realize that I consider it good I know that my standards are way too low.Nose and Mouth 4-30-13Month 3

Nose and Mouth 7-26-13Month 6

SLEEP – Sleep has become more of an issue this month.  It was horrible the first few months because she would wake up constantly.  Then it seemed to settle down a little.  In month 6 she has been having a really hard time falling asleep and she wakes up at least once most nights.  Sometimes it is from the itch, sometimes it is because her skin hurts and sometimes she is just too uncomfortable to fall back asleep.  I have tried to teach her some relaxation techniques that sometimes work.  Other times she asks for something for the itch and then she can fall back asleep.  I hope the sleep gets better before she has to go back to school.

NEW PRODUCTS – We are still using the same products on her but have tried a couple of new ones.

Magic Mama’s Sweet Bee Magic – liked the feel of it but she still prefers coconut oil and white petroleum jelly on her feet and hands.

Florasone Cream – This helped a little with the itch but it stings open areas.  The tube is really small so it isn’t something you can use all over the body throughout the day.

100% Raw Manuka Honey – Didn’t give this a fair try.  I put it on a small spot to test it and my daughter said that she didn’t like the smell.  We will try it again.

Bring on Month 7!  The more months we complete, the closer we get to healing.

Posted in History, TSW Month 6 | Tagged , , , , , , , , | 2 Comments

These blogs have helped me to understand Topical Steroid Addiction, Red Skin Syndrome and Topical Steroid Withdrawal.  I will keep updating this but right now my brain is shot from lack of sleep so this is all I can remember. Some are packed with information, some are packed with facts and figures, some make me feel good and others just keep me laughing.  They all offer something helpful.

The Mother of all things related to Topical Steroid Addiction and Withdrawal    http://www.itsan.org/

http://klinestopicalsteroidhell.blogspot.com/

http://misskittydefeatseczema.blogspot.com/

http://redskinsyndrome.squarespace.com/

http://theboythegreekfireandme.blogspot.com/

http://antisteroid.wordpress.com/

http://scratchymonster.blogspot.com/

http://curingredskinsyndrome.blogspot.com/

http://skinofrose.blogspot.com/

http://www.stoppingtopicalsteroids.blogspot.com/

http://byebyesteroids.blogspot.com

http://warriorgirlbeatstopicalsteroid.blogspot.ca

http://mytswjourney.blogspot.com/

http://amysitchyjourney.blogspot.co.uk/

 

Link | Posted on by | Leave a comment

In month 5 of Topical Steroid Withdrawal, things started to change a tiny bit for the better.  I will not fool you by saying that things were great, or even good.  Things sucked!  However, they sucked a little less than the first 3 months.

The beginning of the 5th month was awful.  My daughter only made it to school 3 days of the last 2 weeks of school because she was so tired. It was terrible but once school ended we were able to manage things a little better.  She was happier when she could stay up late at night and sleep late the next day.   I no longer had any time to myself at night but it was worth it.  I would cuddle on the couch with her and watch movies or whatever silly show she wanted to watch.  She also started to get a little energy back.  She started going on the trampoline a few times a week and was able to do a little more than in the earlier months.

Her skin started to become less red.  It was more pink now with large areas of super dry irritated areas.  Most people flare and have periods of some calm in between.  It wasn’t like that for my daughter.  She was in a constant flare for about 4 months.  Even after that she never really had a break from the flares but the flaring wasn’t all over her entire body anymore.  The flares were covering about 80% of her body by month 5.  It sounds horrible (and it was) but it was better than 100% of her body flaring, like before.   You can see the difference in the color of her skin in the pictures below.  Arm 3-30-13Month 2  Arm and Wrist 6-21-13Month 5

Back of Knees 3-19-13Month 2  Back of Knees 7-6-13Month 5

Unfortunately my daughter was feeling sadder than when she was still in school.  Her skin now burned when water touched it, which meant no swimming or surfing.  She was already sad about taking a break from gymnastics and ice skating.  It was just too much for her.  She cried when she thought about the beach or the pool.  It broke my heart and made me want to kick someone’s ass.  I’m not sure whose ass though.  I guess the doctors who kept prescribing this garbage even after we kept telling them that we didn’t think the topical steroids were working anymore.

Her hands started to really hurt her in month 4 and at the beginning of month 5 she still had to keep gloves on most of the time.  Before this she wore the gloves occasionally, now she couldn’t stand to take them off.  She even wore fingerless gloves to school a few times.    Hand 6-19-13

Her feet and ankles have been the worst area on her body and it continued to give her problems in the 5th month.  She oozes on the top of her feet, her ankles and the lower part of her leg.  The oozing areas are small but there are tons of them.  Then it dries out and cracks.                                                                                                                    Foot 7-1-13

Somewhere in the 5th month bath time became unbearable!  What gave her some comfort in the earlier months now was torture.  We had to run around the house closing all the windows before telling her that she had to take a bath for fear that someone would call Child Protection Services.  She literally screamed and cried that she was scared and that it was going to hurt.  Then when she got in the tub the screams got even worse.  It sounded like we were beating her.  It was awful!  After 5 minutes or so she settled down but within 10 minutes she was begging me to let her come out.  Baking soda is the only thing that helps the sting at all.  We have tried apple cider vinegar, epsom salt (which I still use but only 1/4 cup now), several different natural oils and oats.  2 cups of baking soda seem to help a little but it is still a horror show.

The only products that we were using in Month 5 were Extra Virgin Organic Cold Pressed Coconut Oil, Organic Extra Virgin Olive Oil (occasionally), White Petroleum Jelly, David Hoskings Hypoallergenic Face and Body Balm http://www.hoskingspharmacy.com/baby-infant-face-rashes.htm and Miss Kitty Fantastico’s Goo  http://misskittydefeatseczema.blogspot.com/2013/04/make-goo-not-war-homemade-moisturiser.html .  We use the Face and Body Balm on my daughter’s face in the morning and in the evening.  The coconut oil is used on any open areas to help fight infection.  We use the petroleum jelly over the coconut oil on the feet and hands when they are really dry and cracked.  Kitty’s Goo is used on any areas that aren’t cut open.  Sometimes we use olive oil also.  I keep a small spray bottle of olive oil in my bag so that I always have something with me.

So, that is about it for Month 5.  Onto Month 6!

Link | Posted on by | Tagged , , , , , | 1 Comment

TSW Months 1 through 4 Side Effects

I am going to be honest with you, the first few months of topical steroid withdrawal are rough – really rough.  No matter how prepared you think you are it just beats the hell out of you.  You don’t know what to expect day-to-day.  I was constantly asking questions to the itsan.org support groups.  They probably wanted to block me so I would stop asking the same stupid questions, but they patiently answered me and were my lifeline.  I don’t know what I would have done without them.

The side effects come at you fast and unexpectedly.

EXTREME COLD – On day 5 my daughter went to her ice skating lesson.   She normally skates for hours after her lesson is done.  She wanted to leave right away because she was cold.  Her fingers felt like ice even with heavy mittens on.  They did not warm up for hours.  She was wrapped in a heavy blanket and just could not warm up.  I didn’t realize this had anything to do with tsw at first.  Well, she didn’t warm up for months.  She was under a heavy blanket from February until June.  She went to school with an undershirt, thermal underwear, a long sleeve shirt, heavy sweat pants or jeans and a heavy hooded sweatshirt.  The hood stayed up all day and she was still cold.  This is actually her under the blanket. Blanket 2-13

RED SKIN – On the 10th day her skin started to get red.  It got much brighter as time went on but it began on the 10th day off the steroids.  Her whole face was red except for her cute little nose which was extremely pale.  Her skin was also warm to the touch.  As she got redder it looked like she was on fire.                                           Red Arm 5-5-13 2

SWELLING – On day 10 her face also swelled up.  She was fortunate because I have seen some severe swelling.  Hers wasn’t that bad.  The bridge of her nose seemed to be wider and her eyes and cheeks were swollen.  Her feet and ankles were also a little swollen.  This only lasted for a week for her but the poor kid was so sad because she thought she looked terrible.  Little did she know that things would get worse.  We used cold wash cloths and those cold facial masks.  

EXTREME EXHAUSTION – Somewhere in the 2nd week exhaustion hit.  I am not talking about laying around and feeling tired.  She could easily sleep 15 – 20 hours in a day and wake up tired.  She slept for 10 hours, got up ate something and went right back to sleep.  This scared me more than anything else because my daughter is a ball of energy.  She is always on the move and she just couldn’t do anything.  She went from the bed to the couch and back to the bed.  She was going to school but as soon as she would come home she would do her homework and fall asleep until the following morning.  In the morning, she would sleep while I got her lubed up and dressed.  She even slept through me doing her hair.  She has a big head of curly hair, so that is really impressive!  She was such a trooper – she did not want to leave school so we let her go and kept her home on the days that she literally couldn’t keep her eyes open – and there were a lot of those!

DRY AS THE DESERT SKIN – Day 17 her skin started to flake.  This was not your normal flaking.  There were huge pieces of skin flaking off of her.  Her entire body was dry (except for the oozy patches, which I will get to) and the skin flakes were everywhere.  Her face looked like it had a crackle finish every morning.  She would wake up laying in what looked like sand.  I have always been one to vacuum a few times a week but I was using it several times a day in her room and in the living room around the couch.  We used cold pressed extra virgin organic coconut oil and extra virgin organic olive oil on her skin but it just soaked right in.  Even vaseline wouldn’t keep the skin moist.                                                                    Nose and Mouth 3-15-13

OOZING – Day 17 she also started to ooze in a few places but she did not have severe oozing like so many others.  Her neck started out oozing pretty bad but it didn’t last that long.  Domeboro is what we used and it seemed to help.  It is one of those things that just has to run it’s course.                                                                                          Neck 2-28-13

ODOR – You will notice an odor that sticks to the clothes and sheets even after you wash them.  It gets better over time but at the beginning it is horrific and shocking.  I now wash all her clothes with vinegar first.  Then I rewash them with free and clear detergent and a cup of baking soda.  That seems to help but I learned that too late and the odor is really set in some of the clothes from the beginning.  We plan on ditching everything once this is over.

SEVERE ITCH – I am not sure when this started but it is unreal.  She could not stop scratching for a second once it kicked it.  Ice seems to help a little and antihistamines (if you choose to use them).  Nothing can really get rid of the itch, which completely sucks!  If you do use antihistamines I highly recommend alternating.  So far that has really seemed to work for us.  We use Benadryl one day, Zyrtec the next and Hydroxyzine the day after that.

CRACKED SKIN – There were (and still are) areas of her skin that cracked open.  It looks horrific, just absolutely awful.  You just can’t be prepared for this.  It looks as though the skin is too tight and is tearing open.  It is horrible to see.  We used coconut oil, olive oil and vaseline.                                                                                                         Tearing skin 4-28-13 2

PURPLE SKIN The purplish skin is so strange.  After bathing her skin would get a deep purple hue.  I can’t describe it properly so I will just show you a picture.                                                                     Purple legs 3-15-13

PUSTULES My daughter started getting bumps all over her body after about a month and a half of being off all topical steroids.  We used coconut oil on them and they seemed to go away after 2 or 3 days.  Then a couple more would show up – some small, some large.  They never seem to hang around very long but some can be painful.  It isn’t easy to see with all the flaking, but you can see a side view of one on the right and 2 other smaller ones in the middle of the picture.                                                                                               Postules 3-15-13 Close Up

ELEPHANT SKIN The elephant skin is completely bizarre.  I couldn’t understand how a thin 9 year old girl could have such wrinkled skin.                                                                                               Knees 3-22-13

SWOLLEN LYMPH NODES The swollen lymph nodes started when my daughter went through tsw the first time and got worse when we started round 2.  Her lymph nodes in the groin area got extremely large.  They never seemed to bother her though.  This looks scary but from what I understand it means that your body is working properly to get rid of infection.  None of her doctors seemed to be concerned about it.  They said when her skin clears the swelling will slowly go down.

HAIR LOSS After about 2 1/2 months my daughters eyebrows started to thin.  By the 4th month they were completely gone.  I think her hair thinned also but she had such a thick head of hair that I couldn’t really be sure.  This is a really disturbing look and it made her so upset.  She was rarely looking in the mirror but once the eyebrows fell out she started avoiding the mirrors at all costs.

Forehead 2-20-13This is the beginning of TSW.

Forehead 4-8-13This is at 2 months.

Forehead 4-30-13This is at 2 1/2 months.

No eyebrows 5-10-13This is at 3 months.

No Eyebrows 6-9-13This is at 4 months.

So, that is it.  I am sure I forgot something, or many things but considering the little sleep I get I am lucky I remember to put pants on in the morning.

Posted in History, TSW Side Effects - Months 1-4 | Tagged , , , , , | 2 Comments