Here is a sample of Ty's PHHI Management:

Schedule:

9:00 AM - Disconnect from feeding tube, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, ½ Prevacid crushed & dissolved in 2.5 mls water, 1 ml Aquadeks; give 1 shot 0.1 Octreotide (must draw); feed 5 ozs formula & cereal with fruit (approx. 1 oz of formula in cereal) – tube feed remaining formula that is not taken by mouth
 
12:00 Noon - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, feed 5 ozs formula, fruit & vegetable – tube feed remaining formula that is not taken by mouth
 
3:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water; give 1 shot 0.1 Octreotide (must draw); feed 5 ozs formula – tube feed remaining formula that is not taken by mouth
 
6:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, 1/2 Prevacid crushed & dissolved in 2.5 mls water, feed 5 ozs formula, fruit & vegetable or formula & cereal with fruit (approx. 1 oz of formula in cereal) – tube feed remaining formula that is not taken by mouth
 
9:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, feed 5 ozs formula – tube feed what is not taken by mouth; connect to feeding tube w/D10
 
*If Blood Sugar Level (BSL) is below 60 (mild hypoglycemia) - bolus 12 mls D10 solution through G Tube & feed 2 ozs formula, recheck 15 minutes after eating
 
*If Blood Sugar Level (BSL) is below 50 (severe hypoglycemia) & Ty is unresponsive or is having a seizure - give 0.5 mg Glucagon sub-q in muscle & go to emergency room; if responsive and not having seizure - follow procedure for BSL below 50, recheck 15 minutes after eating
                                     __________________________________
Octreotide shots - give in fatty part of arms, legs, stomach or butt; hold needle in site for 10 seconds after all medicine has been injected
 
D 10 Solution - 30 grams glucose sugar (located on top of refrigerator in vacuum sealed container) in mixing container with water up to 300 ml mark

 

Ty's Diaper Bag Contents:

Regular Diaper Bag        

Diapers
Wipes
Change of clothes
Light blanket
Disposable diaper bags
1-2 Extra wubanubs
Burp rag
Bib
2 Bottles of water
2-4 oz bottles
Formula caddy with 2 scoops of formula in each compartment
    

Emergency Diaper Bag

Glucagon Shot
Simethicone Drops
Alcohol wipes
Cotton balls
1 Large Zip Lock bag
Flush container
D-10 container
1 Extension tube
1 Large syringe
Extra Mickey
Viokase – 1 for every 3 hours
Prevacid – depending on time of day
Octreotide shot – depending on time of day
Red tips
Syringes for g-tube meds
Glucometer
Calendar with BSL Log
Emergency Contact Info & Condition Info
Zvex Pump in backpack with feeding bag if needed

 

Emergency List:  (In case you have to call 911)     

Should you find this letter in your hands while one or both the parents of Ty Hammons are unresponsive, please immediately contact:

Rhonda – Grandmother                                                   Tricia - Aunt 

 

Dr. Paul Thornton – Endocrinologist

#########

 

Dr. Alice Phillips – Pediatrician

########

 

Cook Children’s Hospital
682-885-4000

 

It is very important that you let whom ever know about your child's condition as this is a very rare disease and not to many people are aware of congenital Hyperinsulinism

 

Ty has a rare condition called Hyperinsulinism. He is under constant care with the blood sugar checks every 3 hours. If his blood sugar drops below 50 it is imperative that he seek immediate medical attention. Please take him to the nearest emergency room – preferably Cook Children’s Medical Center in Fort Worth.

 

 Parents advice to other parents of HI Kids

Always keep spare prescription medication     
in case of  spills or loses If Parent is away longer then expected.
Octreotide, diazoxide or insulin may have to be packed in ice in a place where meds can be kept cold..

 

Always keep your glucagon injection kit     
To increase BSL'sjust in case  of an emergency.

A glucose testing kit     
Should contain plenty of supplies and your BSL chart with a pen so you will be able to record BSL's

Tissues/Kleenex /cotton balls /alcohol  
For wiping before and after BSL testing.

Two or Three spare syringes to administer medicines.

Ice pack    
To keep meds cold

Cornflour    
in small  jar In case one needs to raise BSl's and other options aren't available

Spare insulin pen and needles    
The insulin pen does not have to be  cold.

Spare digestive enzymes (If it applies to your child).

A container, spoon and food.

Special instructions for children on Octreotide
always have several spare pump supplies and injection needles.    

Special instructions for children on diazoxide
Diuretics.(If it applies to the child)

  

Mom and Dad ALWAYS  carry a written copy of the pump’s program.

If the child has an octreotide pump, child might want to record on the pump covered with transparent tape, that the pump contains octreotide, NOT insulin.(This Is Very important)

Always keep  extra batteries for the pump and all other parts that may needed.

Special instructions  for tube fed children
ALways keep spare replacement G-tube   (In case the one in place is pulled out)

NG-tube and supplies    
 always Include: tape, scissors, lubricant, litmus paper, small syringe

Talk with your doctor about  how to install an NG-tube in case the G-tube is pulled out and can not be replaced immediately.

Most Important always have Spare feeding syringe and food :)

 

 

Medical Id Tags

Medic Alert Symbol : In My Jammies

http://www.cafepress.com/inmyjammies/3105766

 

MedicAlert® Watch

http://www.medicalert.org/Watch/

 

Medical Alert Bracelets

http://911medalert.com/?gclid=CI-zqfy-0poCFRJexwodkQMTFg

 

 

School Plan

 

Starting school with Congenital Hyperinsulinism (HI)

For many all that is required is that the school staff understand the risk of hypoglycaemia, how to identify it, and what to do in an emergency situation.
Remember that all children are entitled to attend mainstream school

Parents need to be persistent and follow up with the school on all aspects of the child’s care.(let the staff know it is OKAY to call you even on the little things)


Before starting school
Approach the school for an interview with relevant staff (school nurse /Teacher/ principal)
Provide all paperwork  and discuss in detail your child’s daily management. Make sure  the school understands what you require them to do.

Schools will  provide details of who your child’s teacher will be before they start(this would be a good time to ask for an email) and set up an interview  so the teacher can meet you and your child to discuss the management plan.

It is important to ask questions about how teachers and staff can work with the management plan for your child. Teachers may not agree to be held responsible for taking blood sugar tests and your child may require only the school nurse to take the blood sugar test. (Always best to set up a meeting with teacher/nurse/principal).

 

Documents: the 504 Plan

http://specialneedseducation.suite101.com/article.cfm/504plan

 

BSL Testing

Many families find it useful to keep a Glucagon injection kit at school, make sure the staff knows it should be kept in the school fridge.(Place your childs name and number on the injection kit)

A nurse or school staff whom is appointed to hand out medication will be authorized to do BSL.
If testing is done on a regular basis. at school you might think about having  two Glucometers  in case there is a problem with one.


Education of Staff

It is important to ensure that where non-medically trained staff are required to take your child’s BSL they are trained to do so, understand how to use the glucometer and to identify the signs of a hypo. Not all children show the same signs of a hypo, if at all, so ensure these details are included in the information provided to the school and you discuss this with the child’s teachers.

Check with the school to establish whether they have procedures in place to ensure ALL STAFF are aware of your child’s issues, and that any casual or replacement teachers for your child’s class are briefed prior to taking the class.

Questions can often arise from other children about your child’s condition, and you may wish to discuss with the teacher the possibility of providing the class with the basic information on your child’s condition and why they have to have BSL tests, eat during class time or have a carer. This can help demystify the whole process and may save your child from having to constantly answer questions about their situation.

It is important to make sure that non medical trained staff are trained to take your childs BSL.
Make sure you let the staff know that not all children show the same signs of Hypo and some children may not show any signs of Hypo.

It is important to  these details are included in the information provided to the school and you discuss this with the child’s teachers

Make sure that the school will  have procedures in place to ensure ALL staff are aware of your child’s issues.
Make sure that replacement teachers for your child’s class are informed about your child's condition.

If your child must travel in the school bus , Please make sure  the bus driver is aware of your child’s condition, especially if he/she is the only adult on the bus.

 

Pregnancy(HI)

If you are pregnant and have questions Please click on the link below

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=71057

 

More information about HI (CHOP)

http://www.chop.edu/consumer/jsp/search/results.jsp?page_number=1&max_results=50&search_text=congenital+hi 

 

Symptoms of Low Blood Sugar.

 

Hypoglycemia (Low Blood Sugar)

 

http://www.emedicinehealth.com/low_blood_sugar_hypoglycemia/article_em.htm

http://diabetes.webmd.com/tc/hypoglycemia-low-blood-sugar-symptoms

 

http://www.emedicinehealth.com/low_blood_sugar_hypoglycemia/page3_em.htm