Mastocytosis

My son was diagnosed with a rare disorder called Mastocytosis when he was three months old.

Wyatt's Story

When Wyatt was born he was giant. Eight pounds 15 ounces and 21 inches long to be exact.



He also was born with a few spots on his body, particularly his face. We would ask the doctors about them, we were told that they were baby acne, stork bites, bruises from labor. Whatever they were, they were nothing to worry about.

As weeks passed, spots slowly started accumulating. But it didn't seem too worrisome to the doctors so we ignored it.

Two months


We were assured that the spots would get better but they just kept getting worse.

Two and a half months


Three months


I was convinced that this wasn't baby acne or stork bites so I made an apointment for him to see his doctor. She agreed that this was something else, but she didn't know what. She didn't recognize the rash at all, so she called in her attending to take a look. That doctor had no idea what it was. So they referred him to a dermatologist.



Skin biopsy & baby's first stitch

A skin biopsy confirmed what the dermatologist suspected, Wyatt had Mastocytosis and his spots were mastocytomas. He referred us to a pediatric oncologist to find out if he has any internal mastocytomas.






Pediatric Oncology Clinic


He was seen by two different doctors and a medical student. They were the first set of doctors Wyatt has seen that seemed to have a good general knowledge of Mastocytosis. They examined all of his spots and asked if he had any problems with itching and I said I don't think so but it is hard to be sure when he can't express himself well. He scratches the spots on his head, but not very often. They palpated his abdomen and said nothing felt enlarged. They asked about his stomach and I informed them that Wyatt had some vomiting issues a month or so ago, but that seems to have dissipated. The doctors said that internal complications with Mastocytosis are rare, but it is still important to get some blood work done to make sure that mastocytomas are not growing on his internal organs.


The first set of blood work results came back, which was more about his general welfare and it looked really good! The doctor was pleased with the results. We now have to wait until the second set of blood work results come back and that should take about a week. Those results will be more specific to his Mastocytosis. The doctor was really optimistic and we will be back at the pediatric oncology clinic again in three weeks for another exam. We were also referred to another dermatologist and an immunologist at the Children's Hospital of Georgia as well. So we will be seeing all of them very soon.  

Four Months

Blister
We have noticed that heat is a big trigger for Wyatt. When he gets too hot and sweats, he breaks out in hives. This happens about once a day. We saw the new dermatologist who told us that topical Benadryl should not be used by those who have Mastocytosis. She instead wrote us a prescription for Hydrocortisone Ointment 2.5%.

Flare up
We recently took a plane trip and ended up on a flight whose air conditioning was broken. (Don't get me started on that.) He of course reacted to the heat, but his skin did something new this time. One of his larger spots on his back bubbled up into a blister. The blister stuck around for a couple of days before it deflated, scabbed and then fell off. Luckily the blister wasn't very large, but I am sure we will see them again in the future. We were recommended to allow it to breathe by just lightly placing gauze over it. And to just keep an eye on it to make sure it didn't get infected. Poor little guy was not happy about his blister and I don't blame him!
Angry spots caused by
an unknown trigger

For some unknown reason he had a bad flare up and he couldn't sleep all day because of it. He was so miserable. I wish I knew what the trigger was. The only known trigger right now is heat, but he didn't feel hot like he normally does when he has a reaction. I am hoping to figure out what this trigger was so that I can avoid him having to go through this again.

The pediatric oncologist told us that we can give him over the counter children's benadryl for when his spots get angry. So we will be trying that for the next flare up. Hopefully that will allow him to get some much needed rest.



Five Months

Wyatt saw the immunologist for the first time and we had quite the productive visit!

Starting Solids

A diet that avoids histamine releasing food is a must! Since he is five months old, we decided fruits and vegetables were a good place to start. She recommended apples and pears to be the first foods as they do not cause problems for people with histamine issues. Once he is six months old we can add in protein! So I finally get to start him on solids! He has been showing signs of readiness for a couple weeks now. He sits well in a high chair, he shows interest in our food, he doesn't spit out his teething tables and actually chews them! I can not wait to let him try his first taste of real food! All of his food has to be made at home that way we know exactly what he is ingesting. If he were to have a reaction we have to be able to know what caused it. Jarred baby food tends to have a lot of ingredients and it would be difficult to decipher which ingredient was the issue. I am pretty excited about making all of his food myself. I know it will be a challenge, but this way he will be receiving the best of the best homemade chow!

Medication 

 The immunologist decided to put him on daily medication as he is reacting quite a bit, a few times a week. She started him on Ranitidine (Zantac) twice daily along with Benadryl. We were giving him Benadryl as needed when he got blisters, but the doctor feels it would be better to be proactive and try to prevent reactions. Hopefully by pre-medicating him his reactions will decrease and he will feel better. I just hope that the Benadryl doesn't make him too loopy.

Immunizations 

Wyatt received his two month immunizations before we knew about his condition. When his four month shots came around his general practitioner decided to delay them until we could get a second opinion on how to go about them. Immunizations cause an increase of histamine in the blood and therefore could cause Wyatt to have a serious reaction. We decided the best way for him to go about his immunizations would be to get them one at a time, spaced a week a part. This way, his body will not be overloaded and will be less likely to react to the shot. The downside is that he has to get shots spaced out and that will not be fun for him. But my little guy is a trouper and I know he will do well with them! 

Six Months


Like normal, Wyatt got a reaction blister on his back Sunday evening. He gets one to two blisters a week. Over the next few days the blister grew a little until Wednesday evening I noticed it had turned a red blood color. I called the immunology clinic and asked if this was normal, they decided to have him come in to be evaluated. After a thorough examination the doctor felt that the blister must have received some sort of trauma and that it should heal normally. I was glad to hear good news! While I was there I explained to her that Wyatt has been on his daily medications now for three weeks and I have not seen a change in the amount of reactions that he has on a regular basis. So instead of receiving Benadryl in the morning Wyatt will now be taking a dose of Zyrtec along with his dose of Zantac, while receiving Benadryl at night and as needed. Zyrtec lasts 24 hours while Benadryl which only lasts four to six hours. Hopefully this will help reduce the amount of reactions that he has on a regular basis.


What is Mastocytosis? (We asked the same thing!)

Everyone has mast cells inside their body. Mast cells are apart of the immune system and alert the body to injury, illness and allergens. When someone has Mastocytosis their body produces too many of these cells.

Mastocytoma

There are so many mast cells they can often be seen gathering on the body into what are called mastocytomas. Mastocytomas are mast cell tumors and are almost always benign. A person with Mastocytosis can have one mastocytoma, many mastocytomas or none at all. They can be external or internal.

Triggers not allergies

The mast cells in a person with Mastocytosis are easily triggered by a variety of things that the person comes in contact with. Things such as extreme heat or cold, sweat or pressure can cause an allergic reaction. Consumables with high histamine levels also pose a problem like alcohol, chocolate, cheese and that yummy leftover Hamburger Helper in the fridge. This also includes certain medications. Each person with Mastocytosis reacts different and those with this disorder need to know what their body is triggered by. While some people may react with hives, flushing, or blisters there is always a chance of anaphylaxis, so it is very important to avoid triggers whenever possible. A person with Mastocytosis cannot be tested for triggers like a person can be tested for allergies. Carrying an EpiPen is highly encouraged in case of an emergency.

To learn more about Mastocytosis and other Mast Cell Disorders visit The Mastocytosis Society
Those with Mastocytosis should have a copy of the Emergency Room Protocol printed for emergency situations.

3 comments:

  1. thank you for this! My son was diagnosed when he was 1 (he is now 3:). We've seen pediatric specialists at the best hospital in our state. In the last few months my son has experienced more and more trigger reactions causing spontaneous vomiting and blisters on his lesions. We have another appointment tomorrow to discuss the new developments. He also has a history of several GI issues such as constipation, bloating and nausea. Many of these seem to get worse as he gets older. Most recently he had a stool with a lot of blood in it so that is on the top of my list of questions. I tried joining Mastomoms Facebook page but have been accepted yet. I don't know anyone with this disease and would love someone to compare notes with "virtually". Not sure if this is an active blog or not but I thought I would give it a shot:) thanks!

    Sarah

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  2. Hello fellow masto momma! Feel free to email me anytime. :)
    Elizabeth.a.greenlee@gmail.com

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    1. Thank you! I sure will:) We meet with his pediatrician tomorrow to see if they are going to send us back to U of M pediatric dermatology or to a hematologist. I'm just afraid of what I don't know about this disease and although he can tell me when he feels uncomfortable, other symptoms I'm afraid he's just "dealing with" because they're normal for him:( My email is nacandsac@sbcglobal.net. I'm not sure how old your little guy is now but I'd be curious to know how he is developing with symptoms, triggers etc. Oh and I'm on Facebook Sarah Costello if you want to friend me. Thanks again!

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