Month 6 TSW

This have been a very hard month for Owen.  We started to see some improvements last month and his legs looked like they were going to heal and then his skin has taken a turn for the worse and we just can’t seem to get out of this flare.  The backs of his legs started to weep and this time even the fronts did too.  This is an area that hasn’t bothered him for 6 months and now he just can’t seem to stop the itching, weeping cycle.  His hands and fingers also started to itch again and are now all scabbed.  His neck has started to flare again as well.  This has probably been the most discouraging month that we have gone through. As anyone going through TSW understands, he is just so tired of feeling tired and itchy and miserable.

He had really made some progress in previous months but this flare really knocked him out.  He has been more discouraged than I have seen him.  He is usually so positive but the past two weeks he tells us constantly that he is so tired of having itchy skin and asks when this will be over.  I don’t blame him as he is so miserable.   Its just so heartbreaking to not be able to help fix this for him.  I also feel guilty when I get frustrated with his situation.  He requires so much more care than a healthy 4 year old.  I have to dress him completely instead of just helping him as he can’t be by himself without clothes on or he will just tear his skin apart.  Sometimes I even  have to feed him when his hands are sore and we are often up with him several times a night.  On days that his legs hurt really bad I carry him to the car and up the stairs.  I feel terrible that I get annoyed because he is the one who is suffering.  The ITSAN.org parents forum is so helpful for me to see that our struggles are similar to others and that my feelings and Owen’s are normal.   This past few days I feel like we might be starting to move out of this flare. I’ll keep my fingers crossed though as any healing can be ruined in a 10 minute scratching fit.

Its always so hard to figure out what triggers these flares or if there really is a cause.  We had gone to visit some family for spring break and tried to watch his food closely but its hard when traveling.  Owen eats a clean, whole foods diet which consists of meat, vegetables and fruits.  Our family that we stayed with had a dog and I’m not sure if that set off an allergic reaction that led into this flare.  Another possible trigger is that our functional medicine dr. suggested that we try to stop taking one of our B vitamins.  His flare started a week after we stopped this vitamin.  A few months back he went into a terrible flare after we ran out of his B vitamins.  As the B vitamins are needed for removal of toxins and cell regeneration it makes sense that his body really needs them.  This is all such a guessing game and his flare could have started from either of these situations or from neither of them.

I keep trying to remind myself that this will pass and we will get through this but when you are in the middle of it, it just doesn’t feel like there is an end in sight.  When I had each of my babies, I remember thinking that those first few weeks with a newborn were so difficult and I was so tired that I just didn’t know if I could make it through.  Now I look back and think, it was only bad for the first few months.  I am hoping that this situation will be like that.  When he’s 15 we will think about how he had a hard go of it for a while when he was a little boy but it will just be a blip in his otherwise healthy life.

Owen turns 4 next month and we are hoping for some healing this next month so that he can at least enjoy some fun activities for his birthday.  He love animals and we are planning on a trip to a zoo.  We did get to a zoo in Dallas this month on vacation and Owen was beyond excited to get to see his favorite animal, the cheetah!

Here are some photos of this past month.

Red, scratched hands.  Practicing some letters.

Red, scratched hands. Practicing some letters.

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Fronts of his knees. The first time these have gotten so red and weepy

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Backs of his legs, red and weeping

Owen and his brother in front of the Cheetahs. We couldn't get one in the picture.

Owen and his brother in front of the Cheetahs. We couldn’t get one in the picture.

Month 5

Month 5 has been extremely up and down for Owen’s skin. I hardly know where to begin.  His legs continued to heal but now the backs of his knees almost look like they could flare again.  His back and shoulders and armpit went into a very bad flare as did his forearms and tops of his hands.  His neck seems to change on a daily basis.   As we are only 5 months into this I know that any time something heals, it is probably just a break from a flare but I want so badly for it to be fully healed that its so disappointing when I see his skin take a turn for the worse again.   We did have some positive moments this month.  We went swimming and it didn’t sting Owen’s skin, in fact, he looked so much better the next day that I wish I could take him more often.  Owen also got to wear shorts when we went to play at a gym.  He has wanted to wear shorts since last fall but I wouldn’t let him because his legs looked so bad.  I did notice too that when his neck flared this month that it wasn’t as severe as last month.

Owen has asked more and more this month, when will the itching stop.  That just breaks my heart because I have no answers and can’t do anything to lighten his load.  From the book written on the ITSAN website, The Scratchy Monster, we call his” itchies” the scratchy monster.  On bad days we yell at the monster to leave Owen alone.  I don’t know if this helps but for a short time at least we have someone to yell at.

I have been able to put Vaseline on Owen a little bit here and there.  I only use it on areas that are healed but just dry and that seems to help him a lot as he isn’t scratching on those spots anymore.  I know that there isn’t any magic potion out there but I find that I can’t stop buying new oils, creams, etc in hopes that something might work for him.

Here are some pictures during the month

Legs starting to look really good.

Legs starting to look really good.

Arms heading into a flare
Arms heading into a flare

Arm, mid-month 5

Arm, mid-month 5

Back and armpit weeping

Back and armpit weeping
Back in flare

Back in flare

TSW – Month 4

Month 4 started out really bad for Owen with one of the worst flares I have seen on his knees and his neck but as the month went on they both healed more than they have since we stopped steroids.  I was getting so discouraged as I have read that some people get a small break from flaring skin and Owen seemed to be in a constant flare but we finally got a break toward the end of month 4.  His knees flaked skin like crazy and then  they began to heal.  I know we are not out of the woods yet but this is an encouraging step in the right direction.  His neck improved so much too for about a week but is now back into another flare, although this time there isn’t any oozing so I guess that’s a good thing.

Here is a picture of his knees. Its just so much better than it was a few weeks ago even,

Knees on Feb 10, finally showing some healing

Knees on Feb 10, finally showing some healing

Some other improvements we are noticing this month are that he just seems to feel a little better.  He is still more tired than I think a 3 year old should be but is excited to go to preschool each morning and wants to play during the day again instead of just lying on the couch.  He is still cold though and needs extra layers during the day.  His hands are freezing to the touch.

I know we are really looking at a full year of healing but we are encouraged to see some big improvements over the course of month 4.

Month 4 craziness

I am finally caught up to date with the blog so can write real time with what is going on with Owen.  We had some good news last week at our functional doctor appointment.  In November, Owen’s stool test showed occult blood.  Our doctor was pretty certain that it was from the intense inflammation in his intestines.  We had it retested in January and just got out results which were negative.  This was a huge relief for many reasons the first one just being that it shows that our action plan of  supplements that Owen takes and his clean diet are helping to heal him.  The second being that it isn’t something more serious and we won’t have to see a GI specialist which would involve invasive testing.

We have had a crazy week with his skin.  His knees were so bad that I was almost scared but then they healed up a little so I took that as a positive.  The cycles of healing are so up and down and literally change from day to day.  Here are some pictures of his knees that are the worst that I have seen so far.  They already look better but he won’t let me take pictures today.

Knees at the beginning of month 4

Knees at the beginning of month 4

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Yesterday Owen woke up and immediately told me his bed was really “skinny.”  When I looked, it was literally covered in small skin flakes and so were his clothes.  His neck was dryer than I have ever seen his skin or anyone’s for that matter.  I was thinking how could he go to preschool looking like this. We decided to try a shower to see if it would just help get some of the loose skin off.  That seemed to help him a lot.  We rubbed some calendula oil on his neck, which also helped.  I think it helps when he takes a bath every night but he fights us so hard on this that we only do one a couple times a week.  He still remembers it hurting terribly a couple of months ago.  It doesn’t seem to bother him now though as each time he says, oh it doesn’t hurt anymore.  Here are pictures of his neck yesterday morning.

Neck month 4. First thing in the morning.  See all the skin flakes on his pj's

Neck month 4. First thing in the morning. See all the skin flakes on his pj’s

Super dry neck and back

Super dry neck and back

Right after shower.  Dryness gone but it was so itchy he scratched it all up

Right after shower. Dryness gone but it was so itchy he scratched it all up

As we were getting ready for preschool he said he didn’t feel good and wanted to stay home.  I have such a hard time with this as I know there are days that he really doesn’t feel good but it is hard to sort from the days that he is just being an ornery three year old.  He soon threw a big fit about wearing his crocks to school instead of snow boots so I decided it was just him being 3.  When I picked him up a couple hours later he was playing outside with his class in the snow (good thing he decided on the boots) and told me he had a great day and didn’t itch at school at all.

His neck looked great as the day went on and the skin was smooth underneath so I was hopefully that maybe it was healing but today it is red and dry again so it looks like we are back into the up and down cycle again. I am so thankful to have found others’ blogs through the http://www.itsan.org website or events like yesterday would have caused a huge amount of distress. I have seen so many similar pictures so I usually know what is coming but its so crazy to see what you can get used to.

Another bit of hope we have this month is that the back of his left arm seems to be healing. I noticed that the skin is soft and smooth.  It was was so sore for the first couple of months and then dry and stiff but the last few days we noticed it was soft.  We are so encouraged as we know that each little steps gets us closer to recovery.

Left arm healing.  Soft and not red compared to his back

Left arm healing. Soft and not red compared to his back

Through out all of this, Owen keeps amazing us by being so strong and for the most part is just a fun loving three year old.  I know I would be complaining like crazy if I were going through this.  Here he is just being his sweet self.  His fingers, feet, face, ears and the back of his left arm are healed now from where he was in October. Small victories!

My sweet Owen

My sweet Owen

TSW – Month 3

During our 3rd month off of steroids things began to change in Owen’s skin and not in a good way.  I found several blogs about children going through steroid withdrawal from www.itsan.org and realized without a doubt that this is what is going on with Owen.  His skin matched all the pictures of these kids and he really started to get all of the other symptoms as well.  The skin behind Owen’s knees began oozing during month 3.  They had been really red for a month or so but now they were so wet that he was soaking through his pants.  The strange odor that everyone talks about came on as well. The smell is so strong when his skin is actually oozing.  His neck has gotten really bad with the cycle of oozing, then complete dryness, then flaking off all of his skin.  Then it starts over. I was hoping that he might get a break between cycles but it seems to just restart every couple days.  The inside of his elbows are also running through the same cycles.  His arms and back are so dry and itchy that Owen is just tearing them apart.  I know that everyone has a different theory on whether or not to use any type of moisturizer.  We have only been using a blend of calendula and olive oil on him as a natural antibacterial.  The oil doesn’t seem to do much for moisturizing his skin. We have tried vaseline and found it seems to make him itchier.  I have also tried a beeswax/olive oil mixture but he said that it stung so I stopped using it as well. We have found the most success with the calendula oil and use it on his neck and behind his knees.  If we don’t put anything on his neck, he can’t seem to turn his head as it gets so stiff with dryness.

I can tell his body temperature is thrown off now as he is just freezing cold all day now.  His hands are so cold to touch.  He wears a hooded sweat shirt everyday so he can put his hood up if he needs too.  The only good thing about going through this in the winter is that its ok to be completely covered and he isn’t missing out on playing at the park or swimming.  I need to remind myself of some positive things each day or this just gets too overwhelming.

For about a week this month he started complaining about his knees hurting.  The backs of his knees look swollen and I wonder if its the joints or the skin hurting.  I guess it could be both and but as he is only 3 its really hard to figure out specially what’s hurting him on certain days.  I just worry about infections so much as they seem to come on so quickly.  He has a couple days a week where I can tell he is just worn down and just wants to lie on the couch and watch tv so I just let him. I think resting is the most important thing he can do.

This whole process is so up and down. He will look just terrible one morning but seem to have a lot of energy and the next day I think his skin looks better but he is just wiped out.  I hate watching him suffer like this.  Some days he seems so much older than 3 when he says things like , “I am just so frustrated with all this itching and I want it to stop”  Or he will tell me that he is just so itchy and wants to stop scratching but he just doesn’t know how.  My 6 year old said that he should ask Santa for new skin for Christmas.  Talk about breaking your heart.  We try to focus on scratching gently as I don’t want to tell him to stop scratching as he was hiding from us before as he thought he would get into trouble.  Now we focus on gentle scratches so we try not to break the skin but we don’t want him to feel like he is doing something wrong when he is scratching.  This is such a nightmare. Month 3 was really hard for us as the few glimmers of hope that he had during month 2 when he started the supplements are gone.  I need to remember that only two months ago, his hands, feet and face were also flared and those areas seem to be fine for now.  The improvements will come, they will just come slowly.  Here are some pictures of month 3:

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Behind the knees. The start of a flare cycle

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Swollen knees staring to flare

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Right arm. This arm seems to be giving us the most trouble

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Right arm

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Neck starting to ooze

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Back and right arm driving him crazy

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Back and right arm

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Right knee a few days after the pictures above

TSW -Month 2

Month 2 continued much the same as month 1 with some improvements after we started taking the supplements that I wrote about here.  He was still so itchy, but it didn’t seem to be as quite as intense as before.  This is all relative though because if you saw his skin during this time period you would know something was clearly wrong it was just slightly better than the previous month.  Although he was able to go to preschool most days and we didn’t have to be with him around the clock, he still had serious scratching episodes that caused havoc on our day to day life.  My family was all at my sisters house for brunch before my nieces’ baptism and one of the cousins came and told me that Owen was scratching.  By the time we found him, his legs and pants were so bloody, my husband had to take him home to clean him up and change him before we could go to church.

During month two we also developed the beginning of cellulitis again.  This time though I knew the signs of the swollen, hot, skin and immediately got him into the doctor.  I was very hesitant to go to the doctor as I knew they would be scared of the condition of his skin.  Plus our regular doctor was out that day so we saw a doctor that we had never seen before.  She did not listen or believe any of my ideas of healing his body from the inside and just stressed that we put creams on him to fix this.  She prescribed antibiotics,  Elidel cream and the antihistamine Atarax.  The FDA’s website says this about Elidel,

It is not known if ELIDEL Cream is safe to use for a long period of time. A very small number of people who have used ELIDEL Cream have gotten cancer for example, skin cancer or lymphoma

I didn’t want to use the Ellidel on Owen as I felt that was just asking for more trouble.  We did find that the Atarax was a huge help at night in decreasing some of the itching so he could sleep. We tried to use the philosophy that if we could get one good thing out of an appointment it was a positive.  The Atarax turned out to be a lifesaver for us and the antibiotics stopped the cellulitis from spreading.  I feel like I need to add that we are absolutely not against doctors but just really feel let down by the whole process of just trying to treat the symptoms of patients.  It can be scary to go against conventional medicine and base all of our decisions regarding Owen’s health on our own research.  We are now working very closely with our functional medicine doctor and our chiropractor and are very confident we are making the right choices for our son.

Around this time I had found some blogs that led me to the topical steroid withdrawal support group, www.itsan.org.  I was pretty sure at this point that this was a major cause of Owen’s crazy skin but not all of his symptoms seemed to match up. He didn’t have the oozing skin other than when he damaged his fingers and he didn’t have the all over dryness that I was reading about. However, as I continued to read so many family’s stories they seemed to match ours in a lot of ways with the food allergies and the uncontrollable eczema. It seems that time is the only means of getting through this.

Here are some pictures of month 2:

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Owen’s Functional Medicine Test results

In mid-November we got the results of our Spectracell test and his stool analysis.  This was the test to determine his nutrient and/ or mineral deficiencies.  When we initially went to this doctor, I thought that of the 3 tests that this was probably the least important.  However after hearing the results and seeing how he responded to the supplements I actually think this one gave us the most important picture of his health.  Please only use this information as anecdotal as I am clearly not a doctor and not trying to give advice rather just documenting our process of healing our son.

Vitamin B deficiencies, specifically related to B12, B6 and B5.  B vitamins are crucial for the following reasons:

”Methylation is a key biochemical process that is essential for the proper function of almost all of your body’s systems. It occurs billions of times every second; it helps repair your DNA on a daily basis; it controls homocysteine (an unhealthy compound that can damage blood vessels); it helps recycle molecules needed for detoxification; and it helps maintain mood and keep inflammation in check”

This is from an article written by Dr. Mark Hyman.  For Owen, I believe that his body couldn’t flush out any toxins that were already in his system. Our doctor prescribed very high levels of Vitamin B.

Extremely low Glutamine levels.  In fact our doctor told us that he really hadn’t seen levels that low before.  L-Glutamine is a vital amino acid that is required by every muscle in the body, and is one of the most important building blocks in forming the proteins that maintain cellular health and tissue repair.  Our doctor explained that this is a marker for “leaky gut.”  Leaky gut basically occurs when the intestinal wall becomes permeable and large protein molecules escape into the bloodstream. Since these proteins don’t belong outside of the gut, the body mounts an immune response and attacks them. This can show up in the form of food allergies.  We always suspected that this was the cause of Owen’s food allergies but no we had an actually test backing up our theory.  There is a mountain of information on leaky gut online but here is a little video from our doctor explaining it.  http://drzacwatkins.com/what-is-leaky-gut.  L-Glutamine is a supplement that people may have heard of related to weight lifting.  This is the same one that Owen is now taking but also helps the cell lining of intestines.

Low Cysteine and Glutathione levels.  We had never heard of these antioxidants before this testing.  Here is a really good article that explains them, http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html.  Essentially they are needed by the body to get rid of toxins and help the immune system fight off infections. Owen was prescribed Cysteine to help supplement his low levels of these antioxidants.

The stool test results showed that he does not have enough of the “good” bacteria in his intestines which are needed to digest proteins and carbohydrates and propagate anti-tumor and anti-inflammatory factors.  Owen is already taking a high level probiotic so we are just continuing with that supplement.   I was certain that he had a yeast infection or some sort of bad bacteria that was causing all this inflammation in his body, however he didn’t which is great.  He did however, have occult blood in his stool.  This is usually results from gastrointestinal bleeding from the upper small intestines.  Our doctor thought that this was probably from the intense inflammation in his intestines but we had this retested in January and are awaiting the results to rule out anything more serious.

Within a week or so of taking the supplements, Owen’s fingers and feet began to heal.  They went from a bloody mess to completely smooth.  He also had cuts and sores right behind his ears and those healed up immediately.  I have read so much information on leaky gut and and know that there are no quick fixes but it was just amazing to see how quickly he responded in certain areas of his body.  His legs, arms and torso were still not healing but we still saw this as a small step forward.  We know that this will be a long process.  We are hoping that he is in better shape by his birthday, (May) but my long term goal is that he can be functioning pretty normal before he starts kindergarten in a year and a half.  Its so hard to think about this taking several years to heal him but in the terms of his whole life, its really just such a small amount of time.