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18 Things Parents Want Providers to Remember

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As a Pediatrician I often see kids (and parents of kids) who have some kind of physical or mental disability. It could be anything varying from cerebral palsy to seizures to trisomy-21 to a child with Autism Spectrum Disorder to name a few. I see them for a short time in my exam room, and I try to imagine how difficult it sometimes (or always?) must be for the families. But nobody could summarize it better nor put it in a list better than Amy Kelly, mom of Annie who was diagnosed with Autism Spectrum Disorder when she was 2 years old. What Amy has written in 18 points is so clear and conveys beautifully what a parent of a child with a disability experiences every day. Would it not be great to include a copy of this 18-item list for every new medical graduate along with their diploma?

I am posting her “18 Things Parents Want Providers to Remember”. It is an eye-opener for any healthcare provider who sees children with any form of disability as well as any family member or friend of these kids.Family_Portrait_

 

18 Things Parents Want Providers to Remember

*Written by Amy Kelly, mother to Danny, Annie and Ryan Kelly, Devereux PA Director of Family Services, LEND Fellow – Children’s Hospital of Philadelphia & Autism Speaks Autism Treatment Network National Family Advisory Co-Chair”

1. No parent wants their child to have a disability.

2. We are doing the best we can. This is really hard painful work. It is hard to see our children suffering and not able to understand the world like most people do.

3. We are experts on our children. 

4. We know them very well. Listen to us.

5. Don’t promise us things you can’t provide, or promise us that others will provide them.

6. It is hard to tell our story to the outside world. Be gentle with us.

7. We are grieving for lost hopes, dreams and ideals that haven’t or won’t be reached.

8. We are tired and sleep deprived. We are exhausted.

9. We are isolated. There aren’t many people who understand, and if they do, they are tired too.

10. Don’t ask us to tell our story in front of our children.

11. We carry a huge burden as the reporter of what is happening with our child.

12. If you say you will call us, call us. If we leave a message, call us back.

13. We will often compromise more than we should.

14. We are competent from experience.

15. Don’t finish our thoughts and sentences. Don’t assume you know what we feel. Please take the time to ask us and let us talk.

16. Don’t forget that this makes us incredibly sad. We are grieving.

17. Experiences like raising a child with a disability means we find out who our real friends and supports are. It means we often have to grieve the loss of someone who we thought was there to support us.

18. Boundaries are critical to observe.

 

Fever

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Definition:

Your child has a fever if:

– Rectal, Ear, or Temporal Artery (TA) Temperature: 100.4°F (38.0°C) or higher

– Oral or Pacifier Temperature: 100°F (37.8°C) or higher

– Under the Arm (Axillary or Armpit) Temperature: 99°F (37.2°C) or higher

– Limitation: Ear (tympanic membrane) temperatures are not reliable before 6 months of age

– Temporal artery and skin infrared temperatures may be reliable in young infants

– Use this guideline if fever is your child’s only symptom

Causes:

* Main Cause: Colds and other viral infections

* Fever may be the only symptom for the first 24 hours (ie, viral fevers). The onset of symptoms (eg, runny nose, cough, diarrhea) are often delayed. In the case of roseola, fever may be the only symptom for 2 or 3 days.

* The cause of fever usually can’t be determined until other symptoms develop. That may take 24 hours.

* Bacterial infections (eg, strep throat, urinary tract infections) also cause fever

* Teething does not cause fever

Fever and Crying:

* Fever on its own shouldn’t cause much crying

* Frequent crying in a child with fever is caused by pain until proven otherwise

* Possible causes are ear infections, urinary tract infections, and sore throats

Normal Variation of Temperature:

* Rectal: A reading of 98.6°F (37°C) is just the average rectal temperature. It normally can change from 96.8°F (36°C) in the morning to a high of 100.3°F (37.9°C) in the late afternoon

* Oral: A reading of 97.6°F (36.5°C) is just the average oral temperature. It normally can change from a low of 95.8°F (35.5°C) in the morning to a high of 99.9°F (37.7°C) in the late afternoon.

Return to School: Your child can return to child care or school after the fever is gone and your child feels well enough to participate in normal activities.

Call 911 Now (Your Child May Need an Ambulance) If:

* Not moving or very weak

* Unresponsive or difficult to awaken

* Difficulty breathing with bluish lips

* Purple or blood-colored spots or dots on skin

Call Your Doctor Now (or in Alberta, Canada call 780-408-LINK) If:

* Your child looks or acts very sick

* Not alert when awake

* Any difficulty breathing

* Great difficulty swallowing fluids or saliva

* Child is confused (delirious) or has stiff neck or bulging soft spot

* Had a seizure with the fever

* Child is younger than 12 weeks with fever above 100.4°F (38.0°C) rectally (CAUTION: Do not give your baby any fever medicine before being seen)

* Fever above 104°F (40°C) and not improved 2 hours after fever medicine

* Very irritable (eg, inconsolable crying, cries when touched or moved)

* Won’t move an arm or leg normally

* Signs of dehydration (eg, very dry mouth, no urine in more than 8 hours)

* Burning or pain with urination

* Pain suspected

* Chronic disease (eg, sickle cell disease) or medication (eg, chemotherapy) that causes decreased immunity

Call Your Doctor Within 24 Hours (Between 9:00 am and 4:00 pm) If:

* You think your child needs to be seen

* Child 3 to 6 months of age with fever

* Child 6 to 24 months of age with fever present longer than 24 hours but no other symptoms (ie, no cold, cough, diarrhea, etc)

* Fever repeatedly above 104°F (40°C) despite fever medicine

* Fever returns after gone for longer than 24 hours

* Fever present for more than 3 days

Call Your Doctor During Weekday Office Hours If:

* You have other questions or concerns

Parent Care at Home If:

* Fever with no other symptoms and you don’t think your child needs to be seen

Home Care Advice for Fever:

1. Reassurance: Presence of a fever means your child has an infection, usually caused by a virus. Most fevers are good for sick children and help the body fight infection. Use the following definitions to help put your child’s level of fever into perspective:

* 100°F to 102°F (37.8°C to 39°C): Low-Grade Fevers: Beneficial, desirable range

* 102°F to 104°F (39°C to 40°C): Average Fever: Beneficial

* Above 104°F (40°C): High Fever: Causes discomfort but harmless

* Above 106°F (41.1°C): Very High Fever: Important to bring it down

* Above 108°F (42.3°C): Dangerous Fever: Fever itself can cause brain damage

2. Treatment for All Fevers: Extra Fluids and Less Clothing:

* Give cold fluids orally in unlimited amounts (Reason: good hydration replaces sweat and improves heat loss from the skin)

* Dress in 1 layer of lightweight clothing and sleep with 1 light blanket (avoid bundling) (CAUTION: Overheated infants can’t undress themselves)

* For fevers 100°F to 102°F (37.8°C to 39°C), this is the only treatment needed (fever medicines are unnecessary)

3. Fever Medicine:

* Fevers only need to be treated with medicine if they cause discomfort. That usually means fevers above 102°F (39°C).

* Give acetaminophen (eg, Tylenol) or ibuprofen (eg, Advil)

* The goal of fever therapy is to bring the temperature down to a comfortable level. Remember, fever medicine usually lowers the fever by 2°F to 3°F (1°C to 1.5°C)

* Avoid aspirin (Reason: risk of Reye syndrome, a rare but serious brain disease)

4. Sponging:

* Note: sponging is optional for high fevers, not required

* Indication: May sponge if fever above 104°F (40°C) doesn’t come down with acetaminophen (eg, Tylenol) or ibuprofen (eg, Advil) (always give fever medicine first)

* How to Sponge: Use lukewarm water (85°F to 90°F) (29.4°C to 32.2°C). Do not use rubbing alcohol. Sponge for 20 to 30 minutes.

* If your child shivers or becomes cold, stop sponging or increase the water temperature.

5. Contagiousness: Your child can return to child care or school after the fever is gone and your child feels well enough to participate in normal activities.

6. Expected Course of Fever: Most fevers associated with viral illnesses fluctuate between 101°F and 104°F (38.4°C and 40°C) and last for 2 or 3 days.

7. Call Your Doctor If:

* Fever rises above 104°F (40°C) repeatedly

* Any fever occurs if your child is younger than 12 weeks

* Fever without a cause persists longer than 24 hours (if your child is younger than 2 years)

* Fever persists more than 3 days (72 hours)

*Your child becomes worse

Based on recommendations/advice in “My Child is Sick; Expert Advice for Managing Common Illnesses and Injuries”, 14th Edition, by Barton D. Schmitt

Vomiting without Diarrhea

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Definition:

* Vomiting is the forceful emptying (throwing up) of a large portion of the stomach’s contents through the mouth

* Nausea and abdominal discomfort usually precede each bout of vomiting

Causes:

* Main Cause: Stomach infection (gastritis) from a stomach virus (eg, rotavirus). The illness starts with vomiting but diarrhea usually follows within 12 to 24 hours.

* Food poisoning from toxins produced by bacteria growing in poorly refrigerated foods (eg, Staphylococcus toxin in egg salad, Bacillus cereus toxin in rice dishes)

* Serious Causes: If vomiting persists as an isolated symptom (without diarrhea) for more than 24 hours, more serious causes must be considered. Examples are appendicitis, kidney infection, meningitis, and head injury.

* Vomiting can also be triggered by hard coughing. This is common, especially in children with reflux.

Severity of Vomiting:

Te following is an arbitrary attempt to classify vomiting by risk for dehydration:

* Mild: 1 to 2 times a day

* Moderate: 3 to 7 times a day

* Severe: Vomits everything or nearly everything, or 8 or more times a day

* Severity relates even more to the length of time that the particular severity level has persisted. At the beginning of a vomiting illness (especially following food poisoning), it’s common for a child to vomit everything for 3 or 4 hours and then become stable with mild or moderate vomiting.

* The younger the child, the greater the risk for dehydration

Return to School: Your child can return to child care or school after vomiting and fever are gone

Call 911 Now (Your Child May Need an Ambulance) If:

* Unresponsive or difficult to awaken

* Not moving or too weak to stand

Call Your Doctor Now (or in Alberta, canada call 780-408-LINK) If:

* Your child looks or acts very sick

* Confused (delirious)

* Stiff neck or bulging soft spot

* Headache

* Signs of dehydration (very dry mouth, no tears, and no urine in more than 8 hours)

* Blood in the vomit that’s not from a nosebleed

* Bile (bright yellow or green) in the vomit

* Abdominal pain is also present (EXCEPTION: Abdominal pain or crying just before and improved by vomiting is quite common)

* Appendicitis suspected (eg, pain low on right side, won’t jump, prefers to lie still)

* Diabetes suspected (excessive drinking, frequent urination, weight loss)

* Poisoning with a plant, medicine, or other chemical suspected

* Child is younger than 12 weeks with vomiting 2 or more times (EXCEPTION: spitting up)

* Receiving Pedialyte (or clear fluids if older than 1 year) and vomits everything longer than 8 hours

* High-risk child (eg, diabetes mellitus, abdominal injury, head injury)

* Weak immune system (eg, sickle cell disease, HIV, chemotherapy, organ transplant, chronic steroids)

* Vomiting an essential medicine

* Fever above 104°F (40°C) and not improved 2 hours after fever medicine

* Child is younger than 12 weeks with fever above 100.4°F (38.0°C) rectally (CAUTION: Do NOT give your baby any fever medicine before being seen)

Call Your Doctor Within 24 Hours (Between 9:00 am and 4:00 pm) If:

* You think your child needs to be seen

* Has vomited longer than 24 hours

* Fever present for more than 3 days

* Fever returns after gone for longer than 24 hours

Call Your Doctor During Weekday Office Hours If:

* You have other questions or concerns

* Vomiting is a recurrent chronic problem

Parent Care at Home If:

* Mild to moderate vomiting (probably viral gastritis) and you don’t think your child needs to be seen

Home Care Advice for Vomiting:

1. Reassurance:

* Most vomiting is caused by a viral infection of the stomach or mild food poisoning

* Vomiting is the body’s way of protecting the lower intestinal tract

* Fortunately, vomiting illnesses are usually brief

2. For Bottle-fed Infants, Offer Oral Rehydration Solution (ORS) for 8 Hours:

* ORS (eg, Pedialyte, store brand) is a special electrolyte solution that can prevent dehydration. It’s readily available in supermarkets and drugstores.

* For vomiting once, continue regular formula

* For vomiting more than once, offer ORS for 8 hours. If ORS is not available, use formula.

* Spoon or syringe feed small amounts of ORS —1 to 2 teaspoons (5 to 10 mL) every 5 minutes.

* After 4 hours without vomiting, double the amount

* After 8 hours without vomiting, return to regular formula

* For infants older than 4 months, also return to cereal and strained bananas

* Return to normal diet in 24 to 48 hours

3. For Breastfed Infants, Reduce the Amount Per Feeding:

* If infant vomits once, nurse 1 side every 1 to 2 hours

* If infant vomits more than once, nurse for 5 minutes every 30 to 60 minutes. After 4 hours without vomiting, return to regular breastfeeding.

* If infant continues to vomit, switch to ORS (eg, Pedialyte) for 4 hours

* Spoon or syringe feed small amounts of ORS —1 to 2 teaspoons (5 to 10 mL) every 5 minutes

* After 4 hours without vomiting, return to regular breastfeeding. Start with small feedings of 5 minutes every 30 minutes and increase as tolerated.

4. For Children Older Than 1 Year, Offer Small Amounts of Clear Fluids for 8 Hours:

* Water or ice chips are best for vomiting in older children (Reason: water is directly absorbed across the stomach wall)

* ORS: If child vomits water, offer ORS (eg, Pedialyte). If child refuses ORS, use half-strength Gatorade

* Give small amounts —2 to 3 teaspoons (10 to 15 mL) every 5 minutes

* Other Options: Half-strength flat lemon-lime soda, popsicles, or ORS frozen pops

* After 4 hours without vomiting, increase the amount

* After 8 hours without vomiting, return to regular fluids

* CAUTION: If vomiting continues for more than 12 hours, switch to ORS or half-strength Gatorade

* Solids: After 8 hours without vomiting, add solids

– Limit solids to bland foods. Starchy foods are easiest to digest

– Start with saltine crackers, white bread, cereals, rice, and mashed potatoes

– Return to normal diet in 24 to 48 hours

5. Avoid Medicines:

* Discontinue all nonessential medicines for 8 hours (Reason: usually make vomiting worse)

* Fever: Fevers usually don’t need any medicine. For higher fevers, consider acetaminophen (eg, Tylenol) suppositories. Never give oral ibuprofen (eg, Advil); it is a stomach irritant

* Call your doctor if your child is vomiting an essential medicine

6. Sleep: Help your child go to sleep for a few hours (Reason: sleep often empties the stomach and relieves the need to vomit). Your child doesn’t have to drink anything if she feels very nauseated.

7. Contagiousness: Your child can return to child care or school after vomiting and fever are gone.

8. Expected Course: Vomiting from viral gastritis usually stops in 12 to 24 hours. Mild vomiting with nausea may last up to 3 days

9. Call Your Doctor If:

* Vomiting becomes severe (vomits everything) longer than 8 hours

* Vomiting persists longer than 24 hours

* Signs of dehydration

* Your child becomes worse

Based on recommendations/advice in “My Child is Sick; Expert Advice for Managing Common Illnesses and Injuries”, 14th Edition, by Barton D. Schmitt

Vomiting with diarrhea

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Definition:

* Vomiting is the forceful emptying (throwing up) of a large portion of the stomach’s contents through the mouth

* Nausea and abdominal discomfort usually precede each bout of vomiting

* Vomiting and diarrhea together is covered by this topic

Causes:

* Main Cause: Stomach and intestinal infection (gastroenteritis) from a stomach virus (eg, rotavirus). The illness starts with vomiting but diarrhea usually follows within 12 to 24 hours.

* Food poisoning from toxins produced by bacteria growing in poorly refrigerated foods (eg, Staphylococcus toxin in egg salad, Bacillus cereus toxin in rice dishes).

Severity of Vomiting:

The following is an arbitrary attempt to classify vomiting by risk for dehydration:

* Mild: 1 to 2 times a day

* Moderate: 3 to 7 times a day

* Severe: Vomits everything or nearly everything, or 8 or more times a day

* Severity relates even more to the length of time that the particular severity level has persisted. At the beginning of a vomiting illness (especially following food poisoning), it’s common for a child to vomit everything for 3 or 4 hours and then become stable with   mild or moderate vomiting.

* Watery stools in combination with vomiting carry the greatest risk for causing dehydration

* The younger the child, the greater the risk for dehydration

How to Recognize Dehydration:

* Dehydration means that the body has lost excessive fluids, usually from vomiting or diarrhea. An associated weight loss of more than 3% is required. In general, mild diarrhea, mild vomiting, or a mild decrease in fluid intake does not cause dehydration.

* Dehydration is the most important complication of diarrhea

* The following are signs of dehydration:

– Decreased urination (no urine in more than 8 hours) occurs early in the process of dehydration. So does a dark-yellow, concentrated yellow. If the urine is light straw colored, your child is not dehydrated.

– Dry tongue and inside of the mouth. Dry lips are not helpful.

– Dry eyes with decreased or absent tears

– In infants, a depressed or sunken soft spot

– Delayed capillary refill longer than 2 seconds. This refers to the return of a pink color to the thumbnail after you press it and make it pale. Ask your child’s doctor to teach you how to do this test.

– Irritable, tired out, or acting ill. If your child is alert, happy, and playful, he is not dehydrated.

– A child with severe dehydration becomes too weak to stand or very dizzy if he tries to stand.

Return to School: Your child can return to child care or school after vomiting and fever are gone

Call 911 Now (Your Child May Need an Ambulance) If:

* Unresponsive or difficult to awaken

* Not moving or too weak to stand

Call Your Doctor Now (in Alberta, Canada call 780-408-LINK) If:

* Your child looks or acts very sick

* Signs of dehydration (very dry mouth, no tears, and no urine in more than 8 hours)

* Blood in the stool

* Blood in the vomit that’s not from a nosebleed

* Bile (bright yellow or green) in the vomit

* Abdominal pain is also present (EXCEPTION: Abdominal pain  or crying just before and improved by vomiting is quite common)

* Appendicitis suspected (eg, pain low on right side, won’t jump, prefers to lie still)

* Poisoning with a plant, medicine, or other chemical suspected

* Child is younger than 12 weeks with vomiting 2 or more times (EXCEPTION: spitting up)

* Child younger than 12 months who has vomited Pedialyte (or other brand of oral rehydration solution) 3 or more times and also has watery diarrhea

* Receiving Pedialyte (or clear fluids if older than 1 year) and vomits everything longer than 8 hours

* Weak immune system (eg, sickle cell disease, HIV, chemotherapy, organ transplant, chronic steroids)

* Vomiting an essential medicine

* Fever above 104°F (40°C) and not improved 2 hours after fever medicine

* Child is younger than 12 weeks with fever above 100.4°F (38.0°C) rectally (CAUTION: Do NOT give your baby any fever medicine before being seen)

Call Your Doctor Within 24 Hours (Between 9:00 am and 4:00 pm) If:

* You think your child needs to be seen

* Has vomited longer than 24 hours

* Fever present for more than 3 days

Call Your Doctor During Weekday Office Hours If:

* You have other questions or concerns

* Vomiting is a recurrent chronic problem

Parent Care at Home If:

* Mild to moderate vomiting with diarrhea (probably viral gastroenteritis) and you don’t think your child needs to be seen

Home Care Advice for Vomiting with Diarrhea:

1. Reassurance:

* Most vomiting is caused by a viral infection of the stomach and intestines or by food poisoning

* Vomiting is the body’s way of protecting the lower intestinal tract

* When vomiting and diarrhea occur together, treat the vomiting. Don’t do anything special for the diarrhea

2. For Bottle-fed Infants, Offer Oral Rehydration Solution (ORS) for 8 Hours:

* ORS (eg, Pedialyte, store brand) is a special electrolyte solution that can prevent dehydration. It’s readily available in supermarkets and drugstores.

* For vomiting once, continue regular formula

* For vomiting more than once, offer ORS for 8 hours. If ORS is not available, use formula.

* Spoon or syringe feed small amounts of ORS —1 to 2 teaspoons (5 to 10 mL) every 5 minutes.

* After 4 hours without vomiting, double the amount

* After 8 hours without vomiting, return to regular formula

* For infants older than 4 months, also return to cereal and strained bananas

* Return to normal diet in 24 to 48 hours

3. For Breastfed Infants, Reduce the Amount Per Feeding:

* If infant vomits once, nurse 1 side every 1 to 2 hours

* If infant vomits more than once, nurse for 5 minutes every 30 to 60 minutes. After 4 hours without vomiting, return to regular breastfeeding.

* If infant continues to vomit, switch to ORS (eg, Pedialyte) for 4 hours

* Spoon or syringe feed small amounts of ORS —1 to 2 teaspoons (5 to 10 mL) every 5 minutes.

* After 4 hours without vomiting, return to regular breastfeeding. Start with small feedings of 5 minutes every 30 minutes and increase as tolerated.

4. For Older Children (Older Than 1 Year), Offer Small Amounts of Clear Fluids for 8 Hours:

* ORS: Vomiting with watery diarrhea needs ORS (eg, Pedialyte). If child refuses ORS, use half-strength Gatorade.

* Give small amounts—2 to 3 teaspoons (10 to 15 mL) every 5 minutes

* After 4 hours without vomiting, increase the amount

* After 8 hours without vomiting, return to regular fluids

* Solids: After 8 hours without vomiting, add solids

– Limit solids to bland foods. Starchy foods are easiest to digest

– Start with saltine crackers, white bread, cereals, rice, and mashed potatoes

– Return to normal diet in 24 to 48 hours.

5. Avoid Medicines:

* Discontinue all nonessential medicines for 8 hours (Reason: usually make vomiting worse)

* Fever: Fevers usually don’t need any medicine. For higher fevers, consider acetaminophen (eg, Tylenol) suppositories. Never give oral ibuprofen (eg, Advil); it is a stomach irritant

* Call your doctor if your child is vomiting an essential medicine

6. Contagiousness: Your child can return to child care or school after vomiting and fever are gone.

7. Expected Course: Moderate vomiting usually stops in 12 to 24  hours. Mild vomiting (1 to 2 times a day) with diarrhea can continue intermittently for up to a week.

8. Call Your Doctor If:

* Vomiting becomes severe (vomits everything) longer than  8 hours

* Vomiting persists longer than 24 hours

* Signs of dehydration

* Diarrhea becomes severe

* Your child becomes worse

Based on recommendations/advice in “My Child is Sick; Expert Advice for Managing Common Illnesses and Injuries”, 14th Edition, by Barton D. Schmitt