Daughter’s vitiligo – she’s now 10!

My daughter got vitiligo at 4 years of age. IT had spread extremely slowly up until 2020. Every spring she’d get some new small spots, knees and elbow and ankles mostly. They’d grow for a few weeks and often some would shrink or fill in by the end of summer.

In 2020, they just kept growing! In Nov 2021 we learned that she was hypothyroid. To be honest, we were getting her checked out for stomach issues, which I now think were thyroid related. After treating her thyroid her spots started to pigment and she had islands of pigment in all of her big white areas (elbows, knees and shins). However, the dermatologist suggested we try methotrexate to help with the vitiligo. During the 3 months she was on it, she became more hypothyroid (tsh went from 2.9 to 10). So we’ve stopped methotrexate, and are trying to get her thyroid back under control because her spots started losing colour again during those 3 months.

Also, if you do ever go on methotrexate, make sure you double up on the Folic Acid in the beginning. My daughter had sore teeth, sensitive eyes and did not feel well when she first started this medication. We found increasing her folic acid helped to minimize her symptoms.

Youngest daughter might have Alopecia

My sister noticed my youngest daughter’s eyebrow was thinning (she’ll be 4 next month). This is causing me to panic as my middle daughter has vitiligo and the likelihood that this hairloss is autoimmune related goes up drastically.

I could not sleep last night. I’m looking at photos of her and her sweet, blond, beachy curls and thinking about her starting kindergarten in September, possibly with bald patches! It breaks my heart. I know once it starts to happen I’ll be strong and tell her to embrace her uniqueness, but there is a period of mourning and adjustment for me.

My middle daughter will be 8 in November and got Vitiligo at 4.5 years old. She has it on her elbows, ankles, knees, hands and face. It’s actually pretty mild still but she’s young. She at least has the chance to grow into it. Her friends accept her and she doesn’t mind at all yet. It’s less than 10% of her body and not super noticeable. Spots come in spring and some fill in over the course of the summer. Then they may come back the following spring and we repeat.

I got Graves disease after my first daughter. I think the antibodies triggered the disease in my subsequent daughters.  They are the most amazing, incredible little humans and I’m so glad I have them, but this was an unexpected emotional challenge and side-effect I was not prepared for.

Come on science, give me a breakthrough!

Update: It grew back in!!!  I think she might have shaved it but given the autoimmune diseases in my family, I had a heart attack that lasted 6 months to noticeably fill in!

Antifungals!

So I had a major breakthrough.  I took an antifungal (on a whim) and it cleared up all of my symptoms (temporarily). I think I maybe got some weird systemic fungal infection from a cystic zit in my back (and maybe my hormones and thyroid contributed to it being able to take over my body). It feels like it’s in the connective tissues and fascia of my muscles in my back mostly and moves up my neck and some on my right side of my body).

The antifungal temporarily made everything better (although I was really puffy for a while as it worked). The problem was it didn’t completely clear up and so things gradually returned but I think I have enough info now to go to my doctor and ask for a more comprehensive antifungal treatment.

Crossing my fingers this is it!!!!!

Gas in gallbladder area, hepatic flexure?!

Just read about this and holy crap, does it ever sound like it could be my issue!

http://www.wisegeek.org/what-is-hepatic-flexure.htm#didyouknowout

Hepatic flexure syndrome is a relatively common medical issue and can cause gas pains and abdominal discomfort. This pain is typically felt in the upper right portion of the abdomen and is thought to be caused by an abnormal accumulation of gas in the area. This syndrome is fairly easy to confuse with other abdominal disorders, so proper testing and medical intervention is important.

Liver function tests are among the medical testing generally ordered when this condition is suspected. If the results are normal, yet the painful episodes are persistent, this syndrome is the most common culprit. There have been instances in which the gallbladder has been removed in the hopes of obtaining pain relief for the patient, but if the problem is due to this particular issue, the surgery will not relieve the pain and discomfort.

Dietary changes are often enough to reduce the painful symptoms of hepatic flexure syndrome. Patient are often told to avoid foods such as beans, milk, and carbonated beverages. In extreme cases, surgical intervention may be required.

 

Update on digestion. Not celiac, but still can’t eat it without a major reaction

So after two upper GI scopes and blood tests, I don’t have celiac disease. I suspected this because despite being gluten free for 2+ years, I still had symptoms. However, once I found out I for sure wasn’t celiac, I tried eating Raman noodle salad (with coleslaw) and had terrible bloating and diarrhea.

So, right now it feels like a balloon inflates on the right side, under my ribs.  I think it’s gas. I take an SNRI (anti-anxiety) med, Cymbalta, and I can feel that area relax and then all of the pressure seems to move into my lower digestive area.  The problem, taking Cymbalta makes me tired and sweaty. I am currently taking 1 pill every 4 days and it helps.

Gluten isn’t the only issue, but I just can’t eliminate everything. I know that meat and pure vegetables don’t seem to give me issues. Starches and dairy can bug me. Sugar doesn’t really bother me.  So, do I have mid life food allergies? Why does gas or pressure originate under my right ribs? I also get hives and itchy skin (mostly arms and legs and around my rib cage).

4 year old daughter has vitiligo

This is a tough post for me to write.  I had Graves disease when I was pregnant with her.  In early June she went on a field trip to the zoo and came back with a halo nevis mole (mole on her neck that was pure white around the edges), and white spots around her right eye and her entire right eyelid was white. She had a faint white patch on her forehead.  I waited a week and then called the dr. for a referral to a dermatologist. I knew it was vitiligo. We’ve been on Protopic since early July (1 month after the 1st spot appeared).  Since then her face seems stable. I had noticed two faint spots on her chin that don’t seem worse and pinpoint specks on her knee, elbow and 3 toes.  They don’t seem to be growing, but just their appearance makes me worried.

At this stage, it’s not very noticeable. Her bangs cover most of it. However, it’s her future that I’m concerned about. Even though I know she will be supported and loved, standing up to teases will be the more difficult task.  Of course I’m grateful it’s not a disease that affects her physical health, but sometimes the mental health issue is more concerning.

 

My biggest hope is to document her treatment protocol and timeline so other parents will have something to refer to.

• First spots: around June 2, 2016
• Protopic started July 2, 2016
• As of July 24, no improvement…yet.

She’s had bowel issues her whole life (as have I, and her older sister who gets bad eczema on her hands, usually in the winter).  We’re on vitamins right now (kids gummy multivitamin, b12 gummies, lots of sunlight right now, and eating lots of peaches, watermelons and cantaloupe for beta-carotene, and peas and orange for folic acid and vitamin C.

Wish us luck on this journey!

UPDATE Aug 13, 2016

After about 6 weeks of putting on Protopic and about 4 weeks of Ginko Biloba (she’s stopped taking it now), my  daughter is getting some repigmentation in her spots! So exciting.

Update Aug 27, 2016

Depigmentation continues. I would love to know if anyone else has had similar results? I’d of course love to know what her future with the disease looks like. Her digestion issues continue, and I’m worried this will be a trigger for her in the future, although, as she get’s ready to go to Senior kindergarten, I am just relieved her condition is pretty much unnoticeable at this point.

I will post a picture soon to show it’s progress! The spot by her eye is filled in (a little darker), the spot on her cheek is almost gone. Her forehead spot has filled in and her left eye (not pictured), is slowly blending into normal but still the entire eyelid.

UPDATE: Oct 2016

Almost all of the spots completely disappeared, except now the newly pigmented skin looks a little lighter, like it’s trying to come back. It’s still smaller than this image above, though. However, it’s a sign that her body is still fighting itself.  The good news is that the Protopic cream is working.

Update Dec 2017

It came back this spring with more and bigger spots on the inside of her wrist and in the middle of her back and on her ankle, and sides of her mouth. Fortunately they have all cleared up again (still faint on her wrist and back and mouth) but gone everywhere else. I’m at least relieved that they go away.

Update April 2018

So we went away for vacation and the sun triggered her biggest outbreak yet. Her knees, foot, wrists, hands and chin.  Not big but noticeable.  I have to say my heart sank a little only because it felt manageable before but not I feel a little scared that I can’t control this. My goals is not to make my daughter feel like anything is wrong with her. Right now it doesn’t bother her at all. She’s not a fan of putting on the protopix, but she begrudgingly lets me. Every summer the sun exposure helps feel in some of the new spots that show up with the first strong sun. Fingers crossed it’s the same this year.  I’ll post new pictures when I can. Hugs to all the other parents going through this.

 

 

Systemic Candida? with pictures

For over 5 years I’ve struggled with weird health issues, from low b12, fatigue, extreme bloating, weight gain, etc..

Found out it’s not celiac or gallbladder. I think it’s systemic candidiasis.

Recently had thrush in my nipple (twice), a fungal nail infection and fungal rash. This all started after I cut out sugar and most starches from my diet. Any sugar after this point led to a reaction.

I had white stuff coming out of my skin and in my feces.

Chin

Chin

Chest Rash – Pityrosporum Folliculitis?

Feces/Stool with white specks

(There’s hair from the hairbrush in there and  yes, I need to clean my toilet)

 

Thumbnail after paronychia

 

Candida? Die-off journey

I have been suffering weird symptoms for 5+ years. It started after a miscarriage and my graves disease going into remission. After Christmas in 2010 I had sudden and severe back pain that went on to radiate through my whole left side and then became systemic. For years I was red and super bloated and had weird back pain in the gallbladder area.

In the summer of 2014 I went gluten free and and a major improvement in my symptoms, but they didn’t go away.  Recently I had a couple of fungal infections, one itchy rash on my chest and one in my nails.  Also, while the pain was in my gallbladder area, my symptoms would flare after carbs and starches.  I recently went sugar-free, starch free and noticed lots of white specks in my stool which looked like possible spores of some type. They didn’t look like mucous, they were soft and rice-shaped(ish), and didn’t look like bugs. They were totally throughout my stool.  After three weeks I was plateaued and I still couldn’t eat starches without that spot in my back flaring up. I could almost feel it bubbling inside me.

I started CandiGone 2 days ago hoping this was finally the answer to my years of sweaty, bloating, achy hell.

What am I experiencing?

• neck pain after eating
• severe dehydration and dry hands & face
• headaches
• irritability
• muscle spasms (probably from dehydration)

I had severe gas pains between my hips for 2 days when I went sugar/starch free and it was so intense I had bruising all down my thigh because it pinched the nerve/vein in my hip. It was so weird, but this is what happened 5+ years ago when my symptoms started and had a numb spot in my thigh.

I have a severe headache right now, but my baby is sleeping so I wanted to write a post for the first time in a long time to mention how this diet seems to help soooo much. I am just praying that I can enjoy carbs and sugar in the future. In the mean time, I’ve dropped a few needed pounds, especially since I’m post-partum still. I’m into my old fat clothes. I would love to drop a pant size still – 15 lbs would be super. Let’s hope this helps!

Carbohydrate Intolerance/Malabsorption?

Three and a half years ago my symptoms started with an intense tightness in my back, along with weird swelling  and sweating symptoms, inflammation (ESR, CRP), and vitamin deficiencies, severe b12 and ferrtin anemia, and low albumin. I have since been able to tie the symptoms to eating, but could never narrow it down as to what food bothered me.

After 1.5 months of elimination diet, it seems that any carb causes instant bloating in my stomach and fingers, up to my upper arms and the right side of my face.  I have anti-TPO antibodies and have issues with my thyroid. My TSH is normal (1.o) but the free T4 was at the very bottom of the normal scale 9.7 pmol/L or 0.77 ng/L.

I’d like to think that all my issues are thyroid related. I know that wikipedia says:”The thyroid hormones are essential to proper development and differentiation of all cells of the human body. These hormones also regulate protein, fat, and carbohydrate metabolism, affecting how human cells use energetic compounds. They also stimulate vitamin metabolism. ”

The question is, is it central hypothyroidism, meaning my pituitary, given that my TSH is normal? My doctor tells me I’m stressed or have fibromyalgia. I’m at the point where I’ve almost stopped eating, but am not losing much weight. The carb reduction has definitely made me less swollen and my pants are baggy. My face is red all the time and I’m used to being ghost white.  My hair is disgustingly dry and frizzled and turning grey super fast (embarrassing, I’m mid 30s).

Just looking to see if anyone else has had similar problems…any hypothyroid people with this issue?

 

Thyroid, Gluten & Dairy, oh my!

Was diagnosed with hyperthyroidism in Sept 2009.  Allergy symptoms started January 2010. January 2011 my body seemed to be reacting to everything. In fact, because the symptoms were so pervasive (I had stomach issues and was low in vitamins, iron, B12, Calcium, Magnesium, ferritin…), I had nerve issues (tingling and numbness) and swelling throughout my body, but worst in shoulder, hips and right side of face; as well as weird swelling between my shoulder blades and the right side of my face (vagus nerve issue?).  In October 2012 I realized that food was likely the culprit but couldn’t narrow it down to anything in particular, but not eating meant no sweating and better stomach.

Three weeks ago I gave up gluten and felt a little better (less gas), but still had sweating  and swelling. I think dairy is at least one of the culprits. I read this article today and am going to try the paleo diet. I do know that my salad of strawberries, romaine, almonds and sunflower seeds (sometimes apples and/or mandarins as well), usually goes down fairly well.  I am going to have to learn how to cook though, and give up corn and eggs and nightshades, which I had been consuming a lot of since going gluten free.

I have also read that once the small bowel is damaged (mine is), that other intolerances develop. So, if gluten damaged my small bowel (without villi damage)

Check out this article on milk, gluten & thyroid:

• http://www.ameerrosic.com/milk-gluten-cross-reaction-and-thyroid-problems/

I do think some of the nerve problems are related to the vagus nerve, particularly the right sided face and neck issues. Here’s an article on the vagus nerve:

• http://www.ameerrosic.com/the-vagus-nerve-what-is-it-and-why-you-should-you-care-about-it/?hvid=2OMR4h.  I may have to start humming!

Sweating and milk allergy:

• http://www.godairyfree.org/personal-stories/discovering-it-was-a-milk-allergy-after-17-years-of-symptoms
• http://www.bye-bye-excessive-armpit-sweat.com/i-stopped-drinking-milk-and-sweating-stopped-instantly.html