Here is an example of a 40 minute daily meltdown from J-Bean, condensed into 3:15 minutes. There is a lot of screaming and hair-pulling, so be prepared. It can be hard to watch – I did this to seek answers for these daily episodes, usually after waking from a nap. This particular day was not as bad as most, as she is usually a bit more destructive and aggressive toward herself (she has starting biting her own toes). http://youtu.be/LOqp4Ny9Bxw
I am waiting to hear from our pediatrician about testing her cortisol levels, as well as her adrenal and pituitary levels. The meltdowns DO stem from being tired because they happen if she naps or not – either it happens when she wakes up from a nap OR later at night if she HASN’T HAD a nap. I know this type of behavior can happen with preschool aged kids, but it seems to me that it goes too far and then J-Bean can’t reign it in. She just loses control. In researching the idea of the cortisol levels (thanks to another Chromosome 8p mom), it seems there is something biologically going on with her rather than her just having a temper tantrum. Hoping to hear something soon because my ears are ringin’…
As adorable as Josephine may look in the first picture (God, I LOVE that smile), I hate looking at it. Her hair was finally back and beautiful and we CHOSE to get her haircuts, both around Easter and in early July. But, once again, I was forced to make a decision I didn’t want to make – same as last year at this SAME time – to cut off most of Josephine’s hair because of TRICH.
I wanted to cry while explaining the the hairdresser what I wanted (or didn’t want is maybe the better way to say it), but I held it back and pressed on. Inside, though, I wanted to shout at anyone to help us with this disorder and get my girl to stop pulling.
So, as we head into her 3rd birthday, part of me is saddened to know that her birthday pictures, while filled with joy, love, friends and presents, will also hold the horrible mark of Trichotillomania, a balding head with bits of peach fuzz sprouting all around.
Contrary to the title of this post, Josephine’s Trichotillomania has reared its ugly head. Ironically, it is exactly ONE year ago since her first major pull. Why now? Josephine is a happy and funny little girl with a love for fish, paper and her brother. So what is it about August?
My guess is as good as any, but think it’s certainly a path to consider…
Late July of 2010, Josephine started crawling on her own. New words started emerging. Progress was everywhere. Early August of 2010, Josephine started pulling her hair. She was overwhelmed by what was happening and found comfort in her own hair (and later, mine).
The hair pulling never completely went away, but certainly subsided enough so we could start brushing, styling and cutting Josephine’s hair.
Now we are in August of 2011 and again, we are seeing major progress with her skills – standing independently, cruising and walking independently (when the mood strikes her), improvement on a cognitive level – a lot for a 3 year old to process in a relatively short amount of time (I say relative because everything happens on “Josephine time”, not “the rest of the world time”).
However, while we are seeing great strides, Josephine again is having difficulty processing all these strides and takes it out the best way she knows … hair pulling (Trichotillomania) and hair eating (Trichophagia).
I am very bothered, both in my heart and in my head, that the Trich as come back. I have been told it may never go away, but I have also been told that Josephine is so young, so there is little data available to accurately give a prognosis.
I know another child with Tet 8p that also pulled hair, but that symptom seems to have disappeared for her.
So, is this a new symptom for Tet 8p that needs to be explored? Would she have had this disorder regardless of her chromosome triplication? Who knows and I suppose it’s best not to go there because I have to deal with the here and now and not the what ifs. What ifs will cause ME to pull out MY hair and Lord knows, we don’t need another girl in this house that’s going bald!
My heart hurts because there is nothing worse than watching your baby hurt herself to soothe herself. We try all we can to control her emotions and keep her calm, but when you are in the car on Route 80 in Pennsylvania or on the Garden State Parkway and a major meltdown occurs, little can be done to calm her down. We stop the car, relax Josephine a bit, start driving again and the whole thing happens over and over again.
Do I wish Josephine could control herself and her Trich? Absolutely. Do I wish I could let Josephine’s hair grow long enough to make adorable pony tails? Absolutely.
Do I think hair is what defines her? Absolutely not. Josephine is who she is, hair or no hair. Just trying to ride out this next wave and keep hope that we can find a cure or treatment to help our little girl and this thing called Trich.
Carrie Underwood’s song has been in my heart since Mother’s Day 2008. I was on my way back from visiting my best friends, Janine and Jeffrey, in Massachusetts. They burned Underwood’s album, Carnival Ride, saying I would love it. That was an understatement.
I popped in the disc and headed back to NJ, with Little Sheldon in the back, sleeping from a long weekend with his best friend, Miranda.
Neither my hubby or I wanted to find out if the Bean-To-Be was a boy or girl. And I hadn’t really been clear with which one the baby could be. Until this song came on…
I heard the song, my heart was filled with butterflies, tears filled my eyes and I knew…I didn’t know, but my heart knew.
Fast forward 3 years later (almost to the day actually)…
I was driving up to MEDEK in New Milford and was in the mood for Little Miss Carrie. Popped in the disc and relaxed into the 30 minute drive.
All-American Girl came on. But now things were very different from 3 years before.
My mind started racing about Josephine’s future. Would she marry the high school football star? Would she have a daughter of her own?
Tears welled up in my eyes, as they did in May 2008. But these were not tears of joy. These were tears of fears, tears of the unknown. Tears of tomorrow’s possibilities.
Then I caught myself.
STOP!
Stop with the predictions. Stop with the unknowns.
I looked at the little girl in my back seat of the 2008 Saturn Vue and relaxed knowing my girl is who she is…An All-American Girl. Perfect in her own way. Perfect as God made her.
Enjoy the song and think of Josephine while you listen. It’s an amazing experience.
Yes, the word any parent, whose child suffers from Trichotillomania, loves to hear…HAIRCUT. Not because Josephine’s hair needs to be trimmed up after pulling episode. Because Josephine hasn’t pulled any hair OUT in some time. Granted, we are keeping her hair short, so she can’t pull any out (she is still grabbing her hair when frustrated, but can’t get ahold of any). However, the idea that I CHOSE to take her to get a haircut makes all the difference in my heart.
Josephine’s 1st time (of many, I am sure) at Disney World was truly magical and full of happiness.
The Senek Family joined The Randles/Holland/Stephens/Burns Families to celebrate my dad’s 70th birthday (Happy Birthday, Grampy!). One full week of rides, food, characters, sun, food, walking, food, fireworks, parades…Oh, did I mention the food??!
Reasonably, I imagined chaos and meltdowns while on vacation. I am proud to say no chaos ensued and only 1 meltdown, to the horror of another mom, on the monorail (get over it, Lady!).
There is so much to write about, but I will be concise (I know that’s rare for me) and focus on the highlights.
PLANE TRIP
Josephine could not have been a better flyer. A real pro. No crying, no meltdowns, no fidgeting or squirming. A surprise for all of us.
DISNEY
We chilled at the Animal Kingdom Lodge and even took a swim before heading out to dinner and then EPCOT.
Josephine did well in the water, but I was very aware of how long she should be in the pool, particularly since the pool was NOT heated. I saw the blue undertones beginning to surface, which was my cue to hang out and watch The Sheldons poolside.
After dinner at Kouzzina (scrumptious Greek cuisine) on The Boardwalk, it was off to EPCOT.
So, I had heard about this “GAC” card and how wonderful it was and went to Guest Relations to get one for Josephine.
Let me tell you this GUEST ASSISTANCE CARD is the BEST THING EVER!!!!!! This magical card is what made our trip what it was.
All I had to do was tell them why Josephine needed this card and it was issued. No doctor note needed, no blood work needed, no diagnosis needed. Just your honesty.
Because of this card, we only had to wait a maximum of 20 minutes for any ride, but the average wait time was 5 minutes. If the wait time was 110 minutes, we waited maybe 10 minutes. All access pass to any ride, either using the handicapped entrance or the Fast Pass entrance.
The Guest Assistance Card is a MUST for anyone with a disabled child and I made to sure to share the wealth with everyone I met. Why not help other families have a wonderful vacation too?!
The characters were a real surprise also – Josephine loved all of them. Well, all except Eeyore. And Josephine wasn’t freaked out by him. She just pulled away, which said, “Uh, nah. Maybe not.”
Josephine was able to ride many of the rides. The coolest part about some of the rides is she could go on them IN her stroller!
Two rides in particular that go above and beyond – Toy Story Mania and Buzz Lightyear’s Space Ranger Spin.
Both rides converted the existing car into a car “built” for Josephine. The car was disassembled and reassembled to accommodate her stroller. This was perfect because it allowed Josephine to be independent from us and enjoy the ride on her own. And, of course, it allowed Sheldon Daddy and I to enjoy ourselves, while enjoying Josephine’s independence. Even Sheldon 3 got a kick out of watching Josephine.
Check out this video of J-Bean on her FAVORITE ride of all, It’s a Small World (it’s dark in the beginning, but be patient…it get brighter around :10).
There were a few other rides like this one where J-Bean could ride independently without the need to convert the car. The cast member would “order” a wheelchair boat or car, which required us to wait about 5 minutes, but it was worth the wait.
Another ride that comes to mind is Living with the Land at The Land in Epcot’s Future World. Same idea as the It’s a Small World boat.
All the other rides that were appropriate for her were very accommodating by allowing us access through the handicapped entrance. Most of those rides allowed us to wheel the stroller all the way up to the loading of the ride. The rides I can recall are (in no particular order or location) Pirates of the Caribbean, Journey into Imagination, The Haunted Mansion, Spaceship Earth and Finding Nemo.
As for the performances, stationary attractions and 3D movies, again, we used the handicapped entrances. The shows that stands out the most for exceptional service were Finding Nemo: The Musical and Talk Time with Crush. Cast members went above and beyond to make Josephine feel comfortable and also seated us in the best spot to see the show.
Here’s a video of Josephine enjoying her front row seat at the street show, Disney Channel Rocks!, at Hollywood Studios…Man, I love this girl!
DINING
There were some glitches with our dining reservations and handicapped seating, particularly the Hoop De Doo Musical Revue.
We were very inconvenienced because our reserved tables were in the balcony and there was no elevator to get to that level. Keep in mind we made it clear when making the reservation that Josephine needed her stroller (code word: wheelchair) to eat. So, not only did we have to carry the stroller up a large flight of steps, our tables were high and our seats were bar stools. This made it very unpleasant for Josephine because she couldn’t be part of the group and couldn’t see the revue at all, unless someone held her. It was at this point that Josephine started to melt down and when I started to melt down. After all, I knew why she was upset and no one gets my baby girl angry!
Needless to say, the manager was very patient and understanding. She immediately offered us 10 passes to return, at no charge, to the revue, within the next 5 years. At $75 a ticket, that’s a decent compensation. Although not having to deal with the issue at would have been better!
FRIENDS ALONG THE WAY
On our last day, the whole family had many snacks and even some meals left on the our dining plan. As we did the on trip before, we agreed to “pay it forward” to other guests. I waited in line and when a guest was paying cash, I offered to pay with my dining plan and the guest got a free meal or snack.
I did that for a thankful, but not needy, travel agent and felt moderately satisfied.
But it wasn’t until I met Esmeralda and her parents that I felt complete.
I was waiting at the cash register and saw this beautiful family waiting to pay. I could see right away that their daughter had some diagnosis, but obviously couldn’t figure out which one (who can?). Immediately, I knew this was a great day. I offered to pay for all 3 of their meals. They were gracious and understandably surprised. I said it warmed my heart to know, as a parent of a special needs child, that I was able to help another family with a similar child. And I went skipping on my merry way…OK, so I walked casually back to our patio table and excitedly shared the news with The Sheldons.
We then realized we still had 14 snacks we had to use before we left for the airport in 45 minutes. I went back to find Esmeralda and her family!
I found the family and spoke briefly about our children: Esmeralda has a disorder called Cri Du Chat Syndrome or 5p Minus (www.fivepminus.org). Interestingly enough, I had never heard of this disorder and they had never heard of Tetrasomy 8p Mosaicism. How amazing it is to have found a family with the same struggles and successes when handling a child with a rare chromosome disorder! I was sorry we weren’t able to stay with them longer – it would have been nice to hang with them and learn more about each others lives (which reminds me, I need to send them a follow up email!).
PLANE TRIP to NEW JERSEY
The trip home was a bit rougher than the first leg (even MY ears were popping like crazy!). But that’s not what stuck in my mind…
Once again, fate struck us positively, as we were seated next to a woman and her mom, also sitting in the handicapped row.
It turns out the young woman, who was my age, had CP because of the doctor’s negligence at birth. Jennie was very pretty, with long red hair and a very energetic spirit. The entire plane trip was spent talking with both Jennie and her mom. We shared stories about the diagnoses, the therapies, the successes and the failures. One theme, however, kept creeping up: Never underestimate the power of strength, faith and love. Don’t worry about what the doctor’s prognosis. Don’t focus on the diagnosis. Focus on what matters most – our daughter. After all, if Jennie’s mom had listened to all the doctors in her life, Jennie would not be a funny, caring, giving and spirited woman with an 11-year old son and a full time job!
DISNEY in a NUTSHELL (I know, FINALLY!)
What can I say? It was wonderful to get away and spend a week with no schedules, no therapies, no appointments, no school, no Weight Watchers, no restrictions.
But what I will always remember is this: We are NOT the only family living with a rare diagnosis. We are NOT the only family proving everyone wrong about our little princess. We are NOT alone in this fight to give our daughter the best life she can have.
We are part of a small and wonderful world with wonderful kids celebrating the wonderful gift God has given us.
The gift to share Josephine with the rest of the world.
Ah. Where do I begin this? I guess just blurting this out is the best way to get the info out.
Josephine has been diagnosed with Trichotillomania. Yup. Trichotillomania – a genetically linked chronic hair pulling disorder. Want to know more? Check out www.trich.org. It is the best web site available and will give the most detailed information.
How do I feel about this? What does this mean for Josephine, for us as parents, for us as a family?
I am happy to finally have an answer for WHY Josephine was pulling out her hair. It’s nothing we could have known about and nothing we could have done to stop her. From the studies I’ve read (call me the Trich expert of West Orange, NJ!), there is a genetic link, so she was pre-disposed to this disorder, just like her Tet 8p. Josephine just needed some event or emotion to trigger the pulling. Her trigger is her frustration and anger.
When I look back, I recognize she has been pulling her hair for at least 6 months. But it wasn’t until we were in Ohio in August that it all came to a head and she pulled out 5 clumps of hair in one day.
And when I go back even further, I realize Josephine has been obsessed with hair for at least 1 year. It was a motivator during therapy and a comfort when she was in pain or just needed something to hold.
Now it’s an every day or every other day occurrence and something I have to watch closely. Josephine pulls when she’s tired and won’t sleep. Josephine pulls when I leave the room for a very short period of time. Josephine pulls when she is casually playing on the floor and in a good mood. It just happens.
I don’t know what to feel or more importantly, I don’t know HOW to explain how I feel.
It sucks. Flat out. I feel helpless. I want to cry. I want to scream. But I keep that inside because I want what’s best for my little girl and I redirect that pain and frustration and anger into finding how to help her.
I sit here typing this and feel the emotions stirring up inside and can’t get them out.
We are scheduled to see a therapist who specializes in children with Trich, but that’s not for a couple of weeks. What are we supposed to do until then?
We try to re-direct her hands when she starts to pull and rub her head to give her the sensation she is seeking by pulling. But we can’t always catch her.
The other fear that overcomes me is Josephine is EATING her hair, as well as hair of others, including the dog. This is called trichophagia.
I am nervous about leaving Josephine alone for a split second because it could lead to her finding a piece of hair on the floor, in her crib, on the rug and putting it in her mouth. By doing this, Josephine could develop a hair ball in her stomach, which could cause additional issues.
We are waiting for results from an X-ray to see if the hair ball is present. If so, it needs to be removed with scoping or surgery. But I won’t think about that yet.
I just want Josephine to be a happy and life-loving little girl. I know she is happy. I know we are lucky.
I just wish I didn’t feel so alone today. I know therapy and talking with other parents of kids with Trich will help.
