Tuesday, July 28, 2015

Move To Iowa

In May 2015 our family moved from Houston, Texas to Iowa.  The move has been a very positive one for our family in so many ways!

Candice has been able to play outside more than at any other time in her life!  Since the humidity has increased this past month (July) she has more inside time lately, but overall since moving to Iowa she has had more outside time than ever before!  She has been able to learn to ride a bike, go for walks,  go fishing, and play out in the back yard on her swing set with her sister and friends.

She did attend school for one month prior to being out for summer vacation.  The school is very accommodating to her needs.  For this we are truly thankful!  She fits right in with her classmates and has made friends easily.  She even ate school cafeteria lunch for the first time ever!  This made her feel like one of the rest of the students.  Simple things.

On Thursday, July 30, 2015 we will have our first pediatric allergist appt. at The University of Iowa Children's Hospital.  We are looking forward to meeting with her new doctor and her team.

I'll update asap



Riding her bike

Wednesday, August 20, 2014

"Magic Masto Lotion" Recipes

“Magic Masto Lotion”

The name of this lotion does not do it justice — it’s better than magic. And if you're looking for information on “Magic Masto Lotion” (MML), you've come to the right place!
Nancy Gould, of New Zealand, developed a recipe for a lotion to apply to the skin which helps the “itchies” go away. Nancy is a nurse, originally from the US, who has systemic mastocytosis. She was hoping to find a way to increase the level of cromolyn in her system by applying it to the skin, and made this happy discovery instead. Thank you, Nancy, for sharing!
The Original Recipe for “Magic Masto Lotion”
  • 1 tsp glycerin
  • ¹⁄4 cup of Vanicream¹ (ordered from the pharmacist, approximately US$15 for a 1-lb. tub)
  • 5 ampules (tubes) of Gastrocrom or 500 mg of cromolyn powder²
¹ Vanicream can be ordered from the pharmacist. It costs about $15 for a 1-lb. tub. Other thick lotions may also work. Suggestions people have shared for other lotions are:
  • Trader Joe’s has a moisturizing cream that is thick and does not have mineral oil or lanolin, runs approximately $3.99
  • Desert Essence daily essential face moisturizer is a face cream that might also be a good option due to the thickness. It has no colors or synthetic perfumes, detergents, animal fat, animal ingredients or testing, runs approximately $4.
  • Aqueous Cream can also be gotten from your pharmacist. There is a thick base that is used for mixing preparations of water-based or water soluble medicines. It is definitely no-frills, with no perfume or color. If you mix it with Gastrocrom, it should turn into a somewhat manageable lotion.
² Gastrocrom (Cromolyn Sodium) is a prescription that will have to be written by your doctor. It comes 96 plastic vials, or ampules, to a box. If your pharmacist can get the powdered form of cromolyn (Nalcrom), it makes a more manageable cream.
If you cannot get Gastrocrom, here are two recipes for making MML lotion — one using NasalCrom, which is available in the United States over the counter (OTC), and another using Nalcrom, a powdered form of Gastrocrom that is available outside the US:
Recipe for “Magic Masto Lotion” using OTC NasalCrom®
NasalCrom® is an over-the-counter nasal spray that contains cromolyn.
  • 2 tsp glycerin
  • 1/2 cup of Vanicream or other thick lotion
  • 1 whole bottle (0.44 fl. oz. size – 13 ml.) of NasalCrom®
Recipe for “MML” using Nalcrom powdered cromolyn
Nalcrom powdered cromolyn is available by prescription.
  • 1 ½ ounces (just less than ¼ cup) Vanicream, or other mild skin cream
  • 1 teaspoon Glycerin
  • Five 100mg capsules of Nalcrom
  • Mix, allow to sit 20 minutes, and mix again.
For More Information Please Visit MastoKids MML

Common Mast Cell Degranulation Triggers


While there is a large variability factor concerning things that cause the mast cells to degranulate in patients with pediatric mastocytosis, many triggers have been found to have a commonality among the general mastocytosis community and as such, it is wise to avoid these factors or to carefully monitor a child when such triggers cannot be avoided.
  • Factors with a High Probability of Mast Cell Degranulation
Factors in this group should be avoided. If medications are deemed to be essential, medical supervision must be provided and emergency interventions immediately available.
  • Anything the individual has previously reacted to
  • Venom, coming from snakes and insects such as bees, wasps, and fire ants
  • Biologic compounds released by intestinal worms, jellyfish (on contact), ingested crayfish, and lobster
  • Dextran: used in some IV solutions and eye drops
  • Compound 48/80---not commonly used, but with a high degranulation ability, all patients should stay aware
  • Iodine-containing radiographic dyes
  • Non-steroidal anti-inflammatory drugs (NSAIDs), including aspirin and ibuprofen
  • Scopolamine: used in pre-operative procedures and in some eye drops
  • Papaverine: found in some heart medications
  • Dipyridamole: used as an anticoagulant
  • Thiamine (vitamin B6):  found in vitamin supplements
  • Trimethaphan: anticoagulant used in surgical procedures
  • Narcotics: codeine, morphine, meperidine (pethidine, Demerol), and all derivatives
  • Neuromuscular blocking agents:
       D-tubocurarine
       decamethonium
       gallamine
       metocurine
       pancuronium.
  • Sympathomimetics: isoproterenol, amphetamine, ephedrine, phenylephrine
II.  Factors with a Common Probability of Mast Cell Degranulation
Factors in this group should be approached carefully, under close supervision by a medically trained person, parent or caregiver who is prepared to administer emergency treatment if necessary. Reactions to these triggers may vary in degree of severity, so caution and supervision are consistently required.
  • Extreme temperatures, heat or cold
  • Sudden changes in temperature, such as entering a hot car, jumping into cold water, etc.
  • Exercise and exertion
  • Friction
  • Alcohol: includes alcohol taken internally through food and medication and applied topically, such as hand sanitizer or wipe cleaners
  • Polymyxin B: such as is found in many antibiotic ointments and some vaccines
  • Dextromethorphan: found in cough suppressant medications
  • Amphotericin B: commonly found in antifungal treatments
  • Quinine: found in certain medications and in some tonic waters
  • Local anesthetics: including lidocaine, tetracaine, procaine, methylparaben preservative
III. Factors with a Moderate Potential for Mast Cell Degranulation
Factors in this group should be approached carefully, using only a small amount at first, administered by a parent or caregiver who is prepared to administer treatment if needed.
  • Overly warm bath water
  • Hot foods
  • Spicy foods
  • Preservatives and additives such as alcohols, MSG, sodium benzoate, and artificial colors.
IV. Factors that May Increase Mast Cell Activity
  • Emotional stress and anxiety
  • Sleep deprivation
  • Pain
  • Some bacterial and viral infections, including upper respiratory and urinary tract infections, bronchitis, pneumonia, and others
  • Vaccinations-*Please note that Mastokids does not discourage or dissuade against routine and mandated vaccinations for children with mastocytosis. Mastokids suggests discussing with your health care provider the usefulness of antihistamine treatment before and/or after vaccinations are given.
For More Information Please Visit MastoKids/Degranular

References:
Castells, M., Metcalfe, D., & Escribano, L. (2011). Diagnosis and Treatment of                             Cutaneous Mastocytosis in Children. American Journal of Clinical Dermatology 12 (4), 259-270.
Greenblatt, M.K., & Chen, L. (1990). Urticaria Pigmentosa: An Anesthetic Challenge.      J Clin Anesth 2, 108-115.
Hannaford, R. & Rogers, M. (2001). Presentation of Cutaneous Mastocytosis in 173 Children.Australasian Journal of Dermatology 42, 15-21.
Longley, J., Duffy, T.P., & Kohn, S. ( 1995) The mast cell and mast cell disease. Journal of the American Academy of Dermatology 32 (4), 545-561.
Marone, G., Spadar, G., Granata, F., & Triggiani, M. (2001) Treatment of mastocytosis: pharmacologic basis and current concepts. Leukemia Research 25, 583-594.

Emergency Medical Information


Because Pediatric Mastocytosis is a very rare disease, caregivers and patients have found it useful to carry medical information relating to their condition on their person at all times. Many parents of children with mastocytosis have opted to order Medic Alert bracelets for our children. Others have put together kits that they keep on them at all times when traveling.
Below you will find a list of helpful items to carry with you when you are traveling, or for everyday use, as well as information that many of us have included on our children’s MedicAlert bracelets.
 Travel Bags  
  • Any medication your child is currently taking.
  • A dosage chart for your child’s medications.
  • A list of contraindicated medications and activities for your child.
  • Your child’s MedicAlert card, if he or she has one.
  • Names and phone numbers of emergency contact people authorized to make medical decisions on behalf of your child.
  • Names and phone numbers of your child’s health care provider and any specialists he/she may see for mastocytosis.
  • Photocopy of both sides of your child’s medical insurance card.
  • A copy of the anesthesia protocol for mastocytosis patients.
  • A copy of Pediatric Mastocytosis article(s).
  • An Epi-Pen Jr., if one has been prescribed for your child.
  • Age, height, weight and blood type of your child.  

MedicAlert Bracelet Information
  • Diagnosis: Mastocytosis.
  • Subject to Anaphylaxis.
  • Treat with EpiPen.
  • Contraindicated medications.
  • Parent contact information.
  • Pediatrician contact information, as well as any specialists your child sees for mastocytosis.
  • Names and phone numbers for you and anyone else responsible for making healthcare decisions for your child.
  • All medical insurance information.
  • Cell phone numbers.
  • Any medication your child is currently taking.
If you live in the United States, visit MedicAlert online to find out about their products and services.  
If you live in Europe, here is a link for MedicAlert which provides medical bracelet services in the UK and Europe. 

For more information please visit MastoKids/ Emergency Medical Binder

Getting Ready For School

At TX Children's Hospital going to see her allergist for her mastocytosis check up and updated school forms.  

Wednesday, August 6, 2014

Mastocytosis Awareness




Our youngest daughter was born with this rare orphan disease.  Please help spread awareness of mastocytosis and mast cell diseases!  In Hope Of A Cure!

Monday, August 4, 2014

EPI PEN INFORMATION


EPI PEN

Life happens. Be prepared.


Anaphylaxis is unpredictable. When it comes to potentially life-threatening allergic reactions (anaphylaxis), you need to have a plan. Your plan should include avoiding known allergens, recognizing the signs and symptoms of anaphylaxis, having access to two epinephrine auto-injectors at all times and seeking immediate emergency medical care should anaphylaxis occur.

EPI PEN $0 Copay offer!!!