WARNING: This will be a long personal post…..
We have known that it was possible for our little guy to have this disease for a couple weeks now but I didn’t want to mention it until it was certain that this is what we’re facing and a phone call with our skin biopsy results confirmed that today.
It all started while TW and I were home with our new little guy Titan, when he was about a month old and he broke out in these tiny dots all over his body, like this.
My first step since it was so late, we live 45 minutes from a hospital, and they didn’t seem to bother him was to call the on call nurse who assured us it was probably some sort of reaction to a detergent or blanket or something. They went away soon so we stopped worrying about it.
About two weeks later little Titan would have another episode of hives all over his little body, although this time I was already in town and decided to take him into the walk in clinic, where we met the wonderful Dr. Silvey, who ordered some blood work be done.
After which we found out he was allergic to milk and we began a soy formula feeding thinking the problem was solved and we would discontinue to see hives.
Another month would pass and he would start to break out again, although this time the hives were much more pronounced. We scheduled an appointment with Dr. Campbell at Hedberg Allergy Clinic and they collected some more lab work on him.
The new lab work would reveal his Tryptase levels were very high. Normal range is 1-11 and Titan’s was 105. Apparently this triggered some concern and would reveal these reactions to not be the effect of an allergy problem.
These hives would continue to get more severe and turn into blisters…..yes liquid filled….you just wore new shoes….blisters!!! My poor baby! What is going on?
Dr. Henry our Dermatologist soon would perform a skin biopsy on our little Titan….. oh I hope he never has to suffer through that again! I had to help hold him down and they took out a chunk of skin the size of an eraser! He was crying so hard his face was purple! Poor little guy!
After the skin biopsy last week we got several medicines for him so I assumed he would start to get better…..
This is known as dermatographia.
Obviously he didn’t get better, at least not immediately following all the medicine. He’s starting to get better now with only a few blisters popping up daily.
He’s still a pretty happy camper, even while getting that first tooth!!!
We will be going to Little Rock on Monday to visit the only Pediatric Dermatologist in the state. I think we are all a little anxious to hopefully have lots of our questions hopefully answered as well as find some comfort. I will be honest and say that this has been a bit challenging for us as a family. It’s been several nights up with a crying baby that we can’t really do anything for. Emotionally too this has taken a toll on me. It’s so hard to watch him suffer through this, even if sometimes you look at his smiling little face and it seems to not phase him a bit. I’ve come to terms with the idea that I have a hard job in front of me and I have an extremely needy child. I’m sure we’ll be in and out of doctors offices most of his childhood.
At first I often questioned this situation, I wondered why we would get the needy baby when we did everything we were supposed to do……no drugs, alcohol, no STDs, and I tried very hard while I was pregnant to eat right and exercise. Our first baby was supposed to be “perfect” (and by perfect I meant that I expected the usual crying and fussiness of a baby) but instead we were given a child that needs us to soothe him continuously and constantly needs attention. One day as I was feeling sorry for us, I began to think of what Titan’s future would be like if he ended up in the home of an alcoholic or a drug addict. All too often those children do not get the attention and care they require and their lives seem to be full of unnecessary challenges. It was then that I realized I have been entrusted to care for him and love him, (yes just like any normal child) but I felt a sense of urgency in knowing I was trusted with this child that would exhaust me day after day. I don’t know really how to express to you the overwhelming feeling I experienced when this thought came over my mind. It was as if I just felt at peace with it. I knew it would be challenging but the fact that I believed I was capable, and not to forget, trusted, almost made it seem like it would be normal. And that’s what it has become……normal. At least around here it’s normal to break out in an occasional rash of hives and blisters and to get really fussy when the medicines begin to wear off. We basically just deal with it and are thankful that this little challenge is all we have to face right now.
So I’ve showed you lots of pictures but haven’t really explained much other than my kid gets blisters and hives.
Mastocytosis: specifically means “an abnormal increase in the number of mast cells,” Mast cells are something that are produced naturally in every body, necessary to assist the body in fighting possible foreign threats to the system. Individuals with mastocytosis have an abundance of mast cells and the mast cells do not work properly in reaction to a trigger, sometimes unknown.
Pediatric Mastocytosis is a rare disease characterized by the presence of too many mast cells in the skin, and possibly other tissues. Mast cells are instrumental in mediating anaphylaxis, and children with mastocytosis are at risk to develop both provoked and unprovoked episodes of anaphylaxis. (Since Titan doesn’t weigh 30lbs to qualify for an epi-pen we get to lug around vials of epinephrine and syringes!)
How do you treat it? Basically since there is no cure yet, the basic treatment is to avoid triggers, having injectable epinephrine available at all times, H1 and H2 antihistamines to control itching and gastric acid hyper secretion, and a mast cell stabilizer. Triggers may include (pretty much everything!!!)
- Iodine-containing radiographic dyes.
- Aspirin and other non-steroidal anti-inflammatory drugs (NSAIDs).
- Narcotics: codeine, morphine, meperidine (pethidine, Demerol).
- Biologic compounds released by intestinal worms, jellyfish (on contact), ingested crayfish, and lobster.
- Venoms (snake, insect stings).
- Local anesthetics: Lidocaine, tetracaine, procaine, methylparaben preservative.
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Alcohol Anesthetic agents Antibiotics Bacteria or fungi Certain foods Cold (temperature) Coloring & flavoring in foods Coloring & flavoring in medications Emotional upset Environmental toxins Exercise or excertion Fatigue Fever Friction Friction Heat (temperature) Infection with viruses, bacteria or fungi Mold MSG Narcotics Perfumes Pesticides Plasma expanders (i.e. dextran) Preservatives Room freshener sprays Smells Spices Stress Sunlight
CAN I JUST PUT HIM IN A BUBBLE………SERIOUSLY?!?!?!?!
So if you are interested in learning more I’ve gathered a few links for you to check out:
http://www.tmsforacure.org/mastocytosis.shtml
http://www.facebook.com/pages/The-Mastocytosis-Society/196895963437?ref=ts (Check out their Facebook Page!!!)
http://emedicine.medscape.com/article/1057932-overview
Enjoy!
-erika
KNWA
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