A petition to support the initiative to get Solu-cortef available through EMS.
http://www.change.org/petitions/adrenal-insufficiency-united-create-protocols-for-adrenal-insufficiency#
Also check out Adrenal Insufficiency United : http://adrenalinsufficiencyunited.org
Monday, October 24, 2011
Friday, May 27, 2011
SICK DAYS
Everyone gets sick. When kids start school or daycare it seems as if they spend the first few months continuously ill as their immune systems adjust to the new environment. For most parents, they cope with the runny noses, fevers and upset stomachs with extra rest and fluids. For parents of kids with Addison's or adrenal insufficiency, we walk the tight rope between illness and crisis. Even a small illness can be a crisis or can turn into one quickly. Here's some things I learned in a recent bout with Stomach flu in our house.
The National Endocrine and Metabolic Diseases Information Services list the symptoms of adrenal insufficiency as chronic fatigue, muscle weakness, loss of appetite, and weight loss. You could also see nausea, vomiting, diarrhea, low blood pressure, depression, irritability, salt cravings, hypoglycemia, headache, and sweating. According to the National Institutes of Health symptoms of stomach flu include nausea, vomiting, diarrhea, low blood pressure, hypoglycemia,weight loss, fever and chills. They are too similar to tell apart. If adrenal insufficiency isn't treated, it can turn into an adrenal crisis- sudden pain in the abdomen or back, severe vomiting and diarrhea, dehydration, low blood pressure and loss of consciousness. So how do you tell them apart? You can't and that is why it is always important to stress dose at the first signs of illness. Adrenal insufficiency often progresses slowly and the change in syptoms are barely noticeable. By the time you notice symptoms, it's time to stress dose.
It started out as a stomach ache in my house. My son, who would eat anything in sight- turned down another piece of pizza. The mommy alert was heightened. By evening, he was vomiting. Since I have 4 kids, we institute an immediate quarantine. It was a miserable night and following day. By the second day, I was ready for a break and it hit the second kid- my adrenal insufficient kiddo. As luck would have it- if you could call it that- we had a pre existing appointment at the pediatrician's office. I took her in and she was nice enough to vomit in the doctor's office in between passing the football with her brother down the hall of the clinic. They looked her over- probably a virus-keep stress dosing her and call if it gets worse. I triple dosed her, she didn't vomit and she was obviously feeling better by the end of the day. The next day we went back to normal dose and her sister was hit with the puke bug. I got distracted. I was sleep deprived. My littlest one was dehydrated and I was busy trying to keep her fluids down- I probably missed the signs that my adrenal insufficient(AI) kiddo wasn't 100%.Looking back, I should have continued the stress dosing, especially since the bug was still ravaging our house.
We had a day "off", no vomiting and then the AI child wakes up with a tummy ache. She didn't eat breakfast. I gave her the morning hydrocortisone and fludrocortisone- she immediately threw them up. Here we go. I spent the next 2 hours trying to get her to keep her meds down. No luck. I had leftover anti nausea meds from when she was in chemotherapy and I gave those a try. She threw that up. I tried her meds again. Threw up again. I tried the antinausea again. It stayed down longer, but still came up. She would take a plain sip of water- it would come up. We officially missed her first dose. It was lunch time. On a normal day- missing a dose of hydrocortisone is serious. I usually notice the emotional symptoms first- she gets weepy and way too emotional over small things. That is my cue that something is up. On a sick day- missing a dose can be life threatening. I page her endocrinologist who immediately tells me to give her the shot. I look at the needle and the 100mg of Hydrocortisone and wonder if it's really necessary. I look at my child, getting increasingly lethargic and vomiting bile and realize it is.
I plunged the yellow stopper, releasing the powder into the solution. It was cloudy and I swirled the container until it was mixed and clear. I attached the needle to the syringe. I peeled back the little yellow circle from the top of the vial and wipe the vial top down with an alcohol wipe. I plunge the syringe in the vial and draw back mostly air. I remove the syringe, plunge the air out and try again. It helps to pull the needle down a bit in the vial- you get less air that way. Her doctor and I decided to give her half of the shot. The shot is 2 mL, so I just measured out 1 mL. This was my first mistake. In the future, I will give the whole shot. When my daughter was in chemo, they gave her massive doses of steroids and we suffered from the roid rage fall out-I've been preconditioned to dread that. This situation was different. If I am in the situation again where she needs the shot- I will give her the whole shot. Her body needed the boost and she probably would have recovered quicker if I had given her the whole thing. Lesson learned. By the time we got to the ER, she was pretty lethargic- despite 50 mg of Hydrocortisone. They gave her 30 mg more there. She never did have a fever. Fever is a symptom of infection and that is why stress dose is required then.
Giving the actual shot wasn't as bad as I feared. I pinched a big chunk of her thigh because I didn't want to jab her in the bone. I have been reassured that the needle will not hit the bone- and after giving the shot, I will concede that. It does make a slight popping sound when it pierces the skin- which really creeped me out. I think the best way is to be quick- jab quickly, plunge, remove quickly. I can only say this, now that I have done it. I dreaded the shot. It scared the bejeezus out of me. My reccomendation is to practice. This is tricky since you cannot practice on a person. If you have an extra supply of syringes- fill one with water and jab a pear, apple or potato with it. It helps to have a dry run. If you don't have extra syringes- you can buy insulin syringes at a drug store or walmart to practice with. It's not the exact same because insulin syringes are much smaller and designed to go subcutaneously(under the skin) whereas it is important for the Hydrocortisone to go directly into the muscle- hence the big scary needle and the big thigh muscle. The important thing is if you are worried- to practice, it can set your mind at ease. It also helps to go over it with a neighbor or friend who is close by. That's what I did- so when it comes down to an emergency not only do you have support, but you have back up. The other thing you can do is practice plunging the hydrocortisone act-o-vial when the vial expires. Be sure to check the expiration date when you check your emergency kit.
I took my daughter into the ER and she was admitted for 2 days. I don't know if I could have avoided the hospital admission altogether- but if I had given her the shot earlier, it may not have gotten as bad as it did. The body needs the burst of hydrocortisone when it's sick- this is never the time to float a dose. I hadn't realized in how short a period of time she could go from bad to worse. In the morning she was just sick- by lunchtime we were diving into crisis. My doctor gave my the guideline- the oral hydrocortisone has to stay down for an hour to really "count". I was just shooting for 20 minutes. In the future- if there are multiple vomiting episodes in one hour , I will give her the shot. If she has diarrhea more than 2-3 times in an hour- she probably is not absorbing as much hydrocortisone as she needs and I will give the shot. It is important to give the shot before going to the ER or clinic- if you think they might need the shot- they need the shot. I will definitely call her endocrinologist if I am concerned and worry less about "bothering" them. That is what they are there for- had I called earlier- they might have been able to get her into the clinic for fluids and extra hydrocortisone and we might have avoided a full blown crisis and a 2 day respite in a hospital room. There are no little stomach bugs with a child who has Adrenal Insufficiency.
The National Endocrine and Metabolic Diseases Information Services list the symptoms of adrenal insufficiency as chronic fatigue, muscle weakness, loss of appetite, and weight loss. You could also see nausea, vomiting, diarrhea, low blood pressure, depression, irritability, salt cravings, hypoglycemia, headache, and sweating. According to the National Institutes of Health symptoms of stomach flu include nausea, vomiting, diarrhea, low blood pressure, hypoglycemia,weight loss, fever and chills. They are too similar to tell apart. If adrenal insufficiency isn't treated, it can turn into an adrenal crisis- sudden pain in the abdomen or back, severe vomiting and diarrhea, dehydration, low blood pressure and loss of consciousness. So how do you tell them apart? You can't and that is why it is always important to stress dose at the first signs of illness. Adrenal insufficiency often progresses slowly and the change in syptoms are barely noticeable. By the time you notice symptoms, it's time to stress dose.
It started out as a stomach ache in my house. My son, who would eat anything in sight- turned down another piece of pizza. The mommy alert was heightened. By evening, he was vomiting. Since I have 4 kids, we institute an immediate quarantine. It was a miserable night and following day. By the second day, I was ready for a break and it hit the second kid- my adrenal insufficient kiddo. As luck would have it- if you could call it that- we had a pre existing appointment at the pediatrician's office. I took her in and she was nice enough to vomit in the doctor's office in between passing the football with her brother down the hall of the clinic. They looked her over- probably a virus-keep stress dosing her and call if it gets worse. I triple dosed her, she didn't vomit and she was obviously feeling better by the end of the day. The next day we went back to normal dose and her sister was hit with the puke bug. I got distracted. I was sleep deprived. My littlest one was dehydrated and I was busy trying to keep her fluids down- I probably missed the signs that my adrenal insufficient(AI) kiddo wasn't 100%.Looking back, I should have continued the stress dosing, especially since the bug was still ravaging our house.
We had a day "off", no vomiting and then the AI child wakes up with a tummy ache. She didn't eat breakfast. I gave her the morning hydrocortisone and fludrocortisone- she immediately threw them up. Here we go. I spent the next 2 hours trying to get her to keep her meds down. No luck. I had leftover anti nausea meds from when she was in chemotherapy and I gave those a try. She threw that up. I tried her meds again. Threw up again. I tried the antinausea again. It stayed down longer, but still came up. She would take a plain sip of water- it would come up. We officially missed her first dose. It was lunch time. On a normal day- missing a dose of hydrocortisone is serious. I usually notice the emotional symptoms first- she gets weepy and way too emotional over small things. That is my cue that something is up. On a sick day- missing a dose can be life threatening. I page her endocrinologist who immediately tells me to give her the shot. I look at the needle and the 100mg of Hydrocortisone and wonder if it's really necessary. I look at my child, getting increasingly lethargic and vomiting bile and realize it is.
I plunged the yellow stopper, releasing the powder into the solution. It was cloudy and I swirled the container until it was mixed and clear. I attached the needle to the syringe. I peeled back the little yellow circle from the top of the vial and wipe the vial top down with an alcohol wipe. I plunge the syringe in the vial and draw back mostly air. I remove the syringe, plunge the air out and try again. It helps to pull the needle down a bit in the vial- you get less air that way. Her doctor and I decided to give her half of the shot. The shot is 2 mL, so I just measured out 1 mL. This was my first mistake. In the future, I will give the whole shot. When my daughter was in chemo, they gave her massive doses of steroids and we suffered from the roid rage fall out-I've been preconditioned to dread that. This situation was different. If I am in the situation again where she needs the shot- I will give her the whole shot. Her body needed the boost and she probably would have recovered quicker if I had given her the whole thing. Lesson learned. By the time we got to the ER, she was pretty lethargic- despite 50 mg of Hydrocortisone. They gave her 30 mg more there. She never did have a fever. Fever is a symptom of infection and that is why stress dose is required then.
Giving the actual shot wasn't as bad as I feared. I pinched a big chunk of her thigh because I didn't want to jab her in the bone. I have been reassured that the needle will not hit the bone- and after giving the shot, I will concede that. It does make a slight popping sound when it pierces the skin- which really creeped me out. I think the best way is to be quick- jab quickly, plunge, remove quickly. I can only say this, now that I have done it. I dreaded the shot. It scared the bejeezus out of me. My reccomendation is to practice. This is tricky since you cannot practice on a person. If you have an extra supply of syringes- fill one with water and jab a pear, apple or potato with it. It helps to have a dry run. If you don't have extra syringes- you can buy insulin syringes at a drug store or walmart to practice with. It's not the exact same because insulin syringes are much smaller and designed to go subcutaneously(under the skin) whereas it is important for the Hydrocortisone to go directly into the muscle- hence the big scary needle and the big thigh muscle. The important thing is if you are worried- to practice, it can set your mind at ease. It also helps to go over it with a neighbor or friend who is close by. That's what I did- so when it comes down to an emergency not only do you have support, but you have back up. The other thing you can do is practice plunging the hydrocortisone act-o-vial when the vial expires. Be sure to check the expiration date when you check your emergency kit.
I took my daughter into the ER and she was admitted for 2 days. I don't know if I could have avoided the hospital admission altogether- but if I had given her the shot earlier, it may not have gotten as bad as it did. The body needs the burst of hydrocortisone when it's sick- this is never the time to float a dose. I hadn't realized in how short a period of time she could go from bad to worse. In the morning she was just sick- by lunchtime we were diving into crisis. My doctor gave my the guideline- the oral hydrocortisone has to stay down for an hour to really "count". I was just shooting for 20 minutes. In the future- if there are multiple vomiting episodes in one hour , I will give her the shot. If she has diarrhea more than 2-3 times in an hour- she probably is not absorbing as much hydrocortisone as she needs and I will give the shot. It is important to give the shot before going to the ER or clinic- if you think they might need the shot- they need the shot. I will definitely call her endocrinologist if I am concerned and worry less about "bothering" them. That is what they are there for- had I called earlier- they might have been able to get her into the clinic for fluids and extra hydrocortisone and we might have avoided a full blown crisis and a 2 day respite in a hospital room. There are no little stomach bugs with a child who has Adrenal Insufficiency.
Sunday, March 27, 2011
Annie Sullivan's Memorial
Please take a moment to read about a little friend, Annie Sullivan. She and her family battled Addison's for years and her mom Jean keeps a blog of their trials. On Friday March 25, Annie became an angel and all of our hearts became a little heavier. Please keep her family in your thoughts and prayers as they remember their very special little girl.
http://annaleesullivan.blogspot.com/2011/03/annies-memorial-service.html
http://annaleesullivan.blogspot.com/2011/03/annies-memorial-service.html
Wednesday, March 9, 2011
Medical Identification Jewelry
Adrenal Insufficiency requires immediate attention in the case of an emergency. On multiple sites, it is listed as the first reason a medical identification tag is needed. Yes this is because it starts with "a", but the fact is- it's listed. Many parents reason that their child will never be unattended and therefore jewelry is not necessary. Kids wander off, accidents happen- it is necessary. When minutes make the difference between life and death, a medical alert bracelet can make sure your child gets the medicines they need. I know far too many parents who spent months and years trying to find out what was wrong with their child, only to finally be told it was adrenal insufficiency. Why would we expect emergency medical professionals to be able to diagnose it in a few minutes?
WHAT DO I GET?
Plan for the worst case scenario- your child is found unconscious and no one knows what is wrong or their history. It is most useful for them to have identification on their person. What is the first thing an emergency responder does when they check a victim? They take their pulse. This is why bracelets are so popular and useful- the wrist is used to get a pulse. The neck can also be used and is the second site generally looked at to make sure there is an open airway. A down side to necklaces is that they can be overlooked if they are long or fall down into the clothing and sometimes they get in the way of every day activities. There are watches, shoelace tags and keychains- but emergency personnel are not to trained to look for those- they are trained to look for a bracelet or necklace upon initial exam. These identifiers are useful reminders though for caregivers or less emergent cases.
I have heard that many people don't like to wear medical alert jewelry because it is an announcement of a disability as well as a painful reminder of their condition. I can appreciate that, but if they do not get timely diagnosis and aid in an emergency situation, the only reminder of their condition will be a tombstone. It may be harsh, but it is the reality. Many of the bracelets have gotten more stylish and have a variety of wristband options- anything from sportsbands to leather to silver to gold to crystal beads. I used to worry that EMS might not recognize a pretty bracelet as much as a standard issue- but if it comes down to something or nothing- something (pretty) is always better.
You want the identification to have a caduceus(serpent and staff) and cross(some have 4 arms like a t or an x and some have 6 like an *) symbol on it- that is universally recognized as the medical alert logo. It can be on a big charm or a little charm- but you want that charm to be visible and readable. You want it to be activity appropriate. If your child is not very active- a light beaded model might work. My daughter snapped off 2 stainless steel models and a sportsband model in a 6 month period. I generally go for the buy one get one free sales when I can. If nothing else, I have a spare. I did notice on the more delicate model we had, it had a raised medical symbol- that sheered right off- I would recommend getting one with the engraved medical symbol. I also noticed the sportsband got grubby and dirty and started to smell after awhile- definitely something to think about if you have a kiddo who is already sensitive to germs. I also recommend getting one right away- it took a little while for my daughter to get used to her bracelet, but now she doesn't notice it anymore.
WHAT DO I PUT ON A MEDICAL ID BRACELET?
Put yourself in the emergency situation and in the role of the emergency medical professional. What piece of information does that person need in the first minutes of an emergency to treat your child as quickly as possible? Adrenal Insufficiency. I put it first, so it will be the first thing they see, it is a rare condition, they may or may not immediately know what treatment or medication is needed. Hydrocortisone(or whatever medication your medical professional recommends for your child during an emergency.) NAME. For my child, I want them to know her name so they can address her or if she is not with me- I also want them to be able identify her and be able to contact someone who can help inform them on her condition, whether it be a neighbor or school official or coach. Phone Number. I put my cell number since I always carry it with me. Some people put a doctor's number- it should be a number to someone who knows about your child's condition and will answer! If you are uncertain what to put, your physician can be really helpful in this area. Both the Medic Alert and American Medical ID sites have recommendations. Some tags can be engraved on front and back, some only on the back- this can be a consideration if your child has mulitple conditions. This is not a time to engrave lactose intolerance or color blindness, we are looking at acute and life threatening conditions, like adrenal insufficiency.
WHERE DO I GET MEDICAL ID BRACELET?
This is the tough one. The answer depends entirely on what you want. One of the most well known retailers is Medicalert.com They offer jewelry as well as a medical database service with your child's history in it. Emergency personnel can call the 24 hour service and be alerted to the child's meds, history and needs. There is a service charge and a monthly fee for this that runs $20-$30 a month. There is a good selection of ID tags, with rounded edges. Although I prefer their jewelry, you cannot buy it without joining their service and I don't need it, so I go to americanmedical-id.com . The prices are reasonable, they too offer an optional database service and a fair selection but there are some drawbacks. One of the drawbacks is that the bracelets do not come in half sizes- this is fairly problematic with kids. Too tight- they are miserable- too loose and it is gone. I solved this problem by enlisting a few links of chain and some help from a jeweler neighbor. The edges are only more rounded in the more expensive models, which is disappointing. My daughter is very active and I worried about her scratching or gouging herself, but it hasn't been a problem. Another complaint is that the engraving is difficult to see. The manufacturer carries a warranty on this but also emphasizes that the engraving is legible when looked at directly and not casually or from a distance as to protect the person's information. I think that is a valid point. There is merit to having your information out there when necessary and transmitting it with neon lights.
If you are in the market for kid specific, sporty, prettier, custom, or unique looking jewelry- friends have reccommended two places. Lauren's Hope @ Laurenshope.com and Petite Baubles Boutique @ petitebaublesboutique.com Many jewelers carry medic alert bracelets in their stores- I have seen them at Walmart even. Some can do engraving on site and others have to mail it out. If you find a piece you really like and that works- you can always have it professionally engraved and many engravers can incorporate the medical alert symbol. The most important thing is that you find something your child will wear and that they wear it! It could save their life!
Medicalert.com
americanmedical-id.com
Laurenshope.com
petitebaublesboutique.com
Saturday, March 5, 2011
Adrenal Insufficiency from a Child's Perspective
Thousands of teens struggle each year to come up with good essays for college entrance exams. There are questions about accomplishments and overcoming obstacles. Many soon-to-be adults struggle to define or appreciate any life threatening or altering experiences they have had because they simply have not had them. Kids with adrenal insufficiency face barriers that normal kids do not. As parents we often wonder if they grasp the seriousness of their situation while at the same time wanting to encourage them to reach for their dreams and do the things they love. When 10 year old Landon was asked to write an essay about "breaking barriers", he captured the heart of what it is like to live with a disease and persevere. Sometimes you can't go through, you can't go around, you can't go under- sometimes you just have to break through and Landon is doing just that! If this doesn't win the contest, I don't know what will!
My Barrier
By Landon Adzima
...
I bet you don’t know what Addison’s Disease is. John F. Kennedy had it and so do I. It is a rare, life threatening disease.
When you have Addison’s disease, your body won’t produce Cortisol (Adrenaline). Cortisol helps your body respond to extreme stress such as; trauma, injuries, broken bones, sickness and intense physical activity. As a result, I have to take medicine three times every day to replace the Cortisol my body doesn’t produce. In addition, I have to carry a crisis kit that includes a shot of Hydrocortisone (not the cream for itching), pills of Hydrocortisone, an Epipen, and an inhaler. I also wear a Medic Alert Bracelet at all times that has my medical issues engraved on it.
One big problem I have with this disease is fatigue. If I have a lot of physical activity, I don’t eat often or don’t get enough sleep I become very fatigued. I have been hospitalized because of my disease. When I get really sick my body can’t take it very well. I have to get my medicine through an IV. It can be scary.
After telling you about my disease, you would never think I would be a wrestler. Well I am a wrestler! The one major thing that is hard about wrestling is the constant pounds I take to the mat and the complex body bending moves. I also get fatigued so easily during and after matches. For example, one time I had a rough first match and got so fatigued that I was not able to recover physically in between matches. I ended up losing my next match and was wiped out for the rest of the weekend. In order to prevent this I have to take double or triple doses of my medicines. This is called Stress Dosing.
There is no sport to compare to wrestling. It is the roughest, most strenuous sport. My teammates are phenomenal! When I am wrestling the whole team is cheering for me. When another teammate is wrestling the whole team is cheering for him. My coach says there is no sport where the team is so close and teamwork is so important. The team is not a team it is a family.
Although wrestling is a tough sport, and even tougher for me because of my disease, I still have persistence and determination. I am always determined to try my best and have fun. I also work my hardest every single practice and tournament. I am persistent to keep wrestling no matter how I feel physically. In wrestling you win some matches and you lose some matches. When I do lose, it breaks my heart. My coach and teammates always tell me to keep my head up no matter what.
Most of the people that know about my disease and the conditions I have to overcome are amazed that I am a wrestler. Thanks to my pastor, my family, my team and many other people, I have been able to overcome this tough and exhausting barrier and I am able to do what I love-Wrestle!
By Landon Adzima
...
I bet you don’t know what Addison’s Disease is. John F. Kennedy had it and so do I. It is a rare, life threatening disease.
When you have Addison’s disease, your body won’t produce Cortisol (Adrenaline). Cortisol helps your body respond to extreme stress such as; trauma, injuries, broken bones, sickness and intense physical activity. As a result, I have to take medicine three times every day to replace the Cortisol my body doesn’t produce. In addition, I have to carry a crisis kit that includes a shot of Hydrocortisone (not the cream for itching), pills of Hydrocortisone, an Epipen, and an inhaler. I also wear a Medic Alert Bracelet at all times that has my medical issues engraved on it.
One big problem I have with this disease is fatigue. If I have a lot of physical activity, I don’t eat often or don’t get enough sleep I become very fatigued. I have been hospitalized because of my disease. When I get really sick my body can’t take it very well. I have to get my medicine through an IV. It can be scary.
After telling you about my disease, you would never think I would be a wrestler. Well I am a wrestler! The one major thing that is hard about wrestling is the constant pounds I take to the mat and the complex body bending moves. I also get fatigued so easily during and after matches. For example, one time I had a rough first match and got so fatigued that I was not able to recover physically in between matches. I ended up losing my next match and was wiped out for the rest of the weekend. In order to prevent this I have to take double or triple doses of my medicines. This is called Stress Dosing.
There is no sport to compare to wrestling. It is the roughest, most strenuous sport. My teammates are phenomenal! When I am wrestling the whole team is cheering for me. When another teammate is wrestling the whole team is cheering for him. My coach says there is no sport where the team is so close and teamwork is so important. The team is not a team it is a family.
Although wrestling is a tough sport, and even tougher for me because of my disease, I still have persistence and determination. I am always determined to try my best and have fun. I also work my hardest every single practice and tournament. I am persistent to keep wrestling no matter how I feel physically. In wrestling you win some matches and you lose some matches. When I do lose, it breaks my heart. My coach and teammates always tell me to keep my head up no matter what.
Most of the people that know about my disease and the conditions I have to overcome are amazed that I am a wrestler. Thanks to my pastor, my family, my team and many other people, I have been able to overcome this tough and exhausting barrier and I am able to do what I love-Wrestle!
Thursday, March 3, 2011
That bridge fell down... (By Whitney)
Remember the bridge that June and I were going to tip toe over? The one to Mother's Morning Out? Well, it collapsed.
On Monday, I went to meet with the director of the program and one of the teachers to go over specifics of adrenal insufficiency such as what to look for, and how and when to give an injection. There were about 10 other children there that day, and they were just sitting down to lunch when June and I showed up. I brought a snack for June and sat her down at the table with the kids. As I made my way out of the room, she got up from the table to follow me and then a teacher led her back to the table. No whining, no tears (from either of us)-phew! After my meeting, I poked my head into the classroom to see how June was doing. She was fine, and I asked if I could sit in the back and watch her play for a little. It took about 5 minutes for June to even notice I was there! And that felt great! When she did see me, she ran over to me, smiled, and ran back to where the kids were playing. Then she started to laugh and spin in the middle of the carpet! I was soooo happy!!! June was so happy and just doing her thing. Big sigh...we were ready! I signed June up for Friday and the following Monday-just for a couple of hours.
Tuesday morning, June woke up with a low grade fever. It slowly crept up to the flashing 101 mark; she was weepy, weak, and just not herself. We TD that night and gave her tylenol, then checked her throughout the night. On Wednesday, we visited the pediatrician and he diagnosed her with an ear infection.
That wasn't what I was upset about. No Mother's Morning Out, he said.
It took me nearly two months to make the decision to start MMO and I was FINALLY happy with the decision to start June this month.
You know, here is the endo subtly telling me to toughen up and treat her like any other child (with extra precaution of course), and then when I try...the pediatrician is saying that she is not ready for that kind of germ/virus exposure. So then WHAT exactly?!?
(Virtual scream)
Here is my problem-both doctors are right, and then my own opinions are in the mix somewhere, too. How do I keep everything straightened out!? And here is another problem-there is no right answer...and I like answers!
So long for now Mr. Bridge. As we got closer to you, you were looking pretty good. We're going to walk away now, but we will revisit in a few months. Hang tight!
On Monday, I went to meet with the director of the program and one of the teachers to go over specifics of adrenal insufficiency such as what to look for, and how and when to give an injection. There were about 10 other children there that day, and they were just sitting down to lunch when June and I showed up. I brought a snack for June and sat her down at the table with the kids. As I made my way out of the room, she got up from the table to follow me and then a teacher led her back to the table. No whining, no tears (from either of us)-phew! After my meeting, I poked my head into the classroom to see how June was doing. She was fine, and I asked if I could sit in the back and watch her play for a little. It took about 5 minutes for June to even notice I was there! And that felt great! When she did see me, she ran over to me, smiled, and ran back to where the kids were playing. Then she started to laugh and spin in the middle of the carpet! I was soooo happy!!! June was so happy and just doing her thing. Big sigh...we were ready! I signed June up for Friday and the following Monday-just for a couple of hours.
Tuesday morning, June woke up with a low grade fever. It slowly crept up to the flashing 101 mark; she was weepy, weak, and just not herself. We TD that night and gave her tylenol, then checked her throughout the night. On Wednesday, we visited the pediatrician and he diagnosed her with an ear infection.
That wasn't what I was upset about. No Mother's Morning Out, he said.
It took me nearly two months to make the decision to start MMO and I was FINALLY happy with the decision to start June this month.
You know, here is the endo subtly telling me to toughen up and treat her like any other child (with extra precaution of course), and then when I try...the pediatrician is saying that she is not ready for that kind of germ/virus exposure. So then WHAT exactly?!?
(Virtual scream)
Here is my problem-both doctors are right, and then my own opinions are in the mix somewhere, too. How do I keep everything straightened out!? And here is another problem-there is no right answer...and I like answers!
So long for now Mr. Bridge. As we got closer to you, you were looking pretty good. We're going to walk away now, but we will revisit in a few months. Hang tight!
Monday, February 21, 2011
Adrenal Crisis
When to give the injection
- Repeated vomiting (more than once)
- Repeated episodes of diarrhea (more than 3)
- Unconsciousness (unable to arouse/wake up)
- Surgery
***IMPORTANT NOTE:
If your child becomes unconscious or dazed and mentally foggy whether from a blow to the head or after a period of illness, THIS IS AN EMERGENCY. CALL 911. GET YOUR CHILD TO A HOSPITAL IMMEDIATELY. This condition could be life threatening. Give the injection while you are waiting for help to arrive, then call the child's doctor.
Resource: Judith J. Henry, R.N., M.S.N. in conjunction with the Pediatric Endocrinology Nursing Society, 2004.
Where Will This Bridge Take Us? A mother's anxiety. (By Whitney)
I live by the saying, “Cross that bridge when you get to it.” I am much more comfortable living in the now and find myself all too often getting anxious about the future. I like knowing what to expect, and I am a creature of habit.
Having said that, it probably will not surprise you to know that our days are pretty routine. We get up, June has her pills, we watch Sesame Street, we run an errand, have lunch, June has another pill, she takes a nap, we play and dance to music, greet Daddy at 5:30, we have dinner, read books, then bath time, June takes more pills, and she goes to bed. This is our normal.
In fact, just last week my husband, Tony, came upstairs with her bedtime dose and said, “Wow, I don’t even think about it anymore. It’s just…what we do.” I smiled; my thought exactly.
The next day, I took June to observe a Mother’s Morning Out program. June loves kids and I want to encourage her social development. I also decided I was due a couple of hours to myself once in awhile. She is only a year and a half old, so this is not pre-school, just a program available for younger children to get together for a few hours on the day of my choice. So we decided to check it out before signing up. They play, they have snack, go for walks. Sounds easy enough, right?
What’s that? Oh I forgot…they also get sick! They sneeze, they develop fevers, they throw up. My friends have their children in different programs, and as much as I love hearing about their artwork and new friends, I also can’t hear enough of “all the kids at school are sick right now….he can’t get rid of this cough…he caught the stomach bug…she has a high fever.”
So this little room full of dollhouses, bikes, and building blocks suddenly turned into one huge bubble of ICK! You know in the commercials where they show you the little bubble of ‘this is what is on your kitchen counter’ and show you those little microscopic worms? Well, that dollhouse wasn’t looking so cute anymore!
I started to sweat. I began to tell the director of June’s medical condition and fought back tears. I guess it’s hard saying it out loud. You know-what it really means to be adrenal insufficient.
Other parents may shrug their shoulders when they say, “oh it’s just another cold.” But to us, it is not just a cold. To us, it is watching June like a hawk and feeling her forehead every hour to make sure there is no fever. It is staying up with her until midnight because the extra dose of medication is equivalent to me drinking three Red Bulls for dinner. It is constantly wondering, “is there something else we are missing…what if she spikes a fever in the middle of the night…what if she throws up and needs an injection…”
Oh, the ‘What If’ game! I played this game the whole weekend after visiting Mother’s Morning Out. It was exhausting. I cried, I yelled, I had to stop and catch my breath. The reality of what could happen had come up to the surface and was a little too much for me to bear.
I kept telling myself that June will get sick, and we will have to stress dose, and the hospital is 18 minutes away if we need it. But when she does get sick, my world gets turned upside down because I no longer know what the next day will bring. Our routine gets thrown out the window.
Tony and I know what we are doing (for the most part), and we know what to look for and when June needs more medication. We know what can lead to a crisis. I once could tell that June was getting sick just because she had bad breath the day before! Who else is going to know her like I do??
Like Tony said, this is what we do. It has become our normal, and I like knowing what to expect day after day. But seeing June grow up and preparing her for life outside of our home-of-hygiene sure adds a new dimension to our “normal,” and I just question whether or not I am ready for this step.
I tell myself, “cross that bridge when you get to it,” but now that first little bridge has approached and there is a part of me that would rather jump off than cross it! Well, I can’t hold June hostage forever. I guess I will have to come to terms with our new “normal,” now putting my trust in the hands of other adults, accepting the fact that June will get sick, and embrace the unknown.
I will cross that bridge, I just hope that June holds my hand the whole way!
Having said that, it probably will not surprise you to know that our days are pretty routine. We get up, June has her pills, we watch Sesame Street, we run an errand, have lunch, June has another pill, she takes a nap, we play and dance to music, greet Daddy at 5:30, we have dinner, read books, then bath time, June takes more pills, and she goes to bed. This is our normal.
In fact, just last week my husband, Tony, came upstairs with her bedtime dose and said, “Wow, I don’t even think about it anymore. It’s just…what we do.” I smiled; my thought exactly.
The next day, I took June to observe a Mother’s Morning Out program. June loves kids and I want to encourage her social development. I also decided I was due a couple of hours to myself once in awhile. She is only a year and a half old, so this is not pre-school, just a program available for younger children to get together for a few hours on the day of my choice. So we decided to check it out before signing up. They play, they have snack, go for walks. Sounds easy enough, right?
What’s that? Oh I forgot…they also get sick! They sneeze, they develop fevers, they throw up. My friends have their children in different programs, and as much as I love hearing about their artwork and new friends, I also can’t hear enough of “all the kids at school are sick right now….he can’t get rid of this cough…he caught the stomach bug…she has a high fever.”
So this little room full of dollhouses, bikes, and building blocks suddenly turned into one huge bubble of ICK! You know in the commercials where they show you the little bubble of ‘this is what is on your kitchen counter’ and show you those little microscopic worms? Well, that dollhouse wasn’t looking so cute anymore!
I started to sweat. I began to tell the director of June’s medical condition and fought back tears. I guess it’s hard saying it out loud. You know-what it really means to be adrenal insufficient.
Other parents may shrug their shoulders when they say, “oh it’s just another cold.” But to us, it is not just a cold. To us, it is watching June like a hawk and feeling her forehead every hour to make sure there is no fever. It is staying up with her until midnight because the extra dose of medication is equivalent to me drinking three Red Bulls for dinner. It is constantly wondering, “is there something else we are missing…what if she spikes a fever in the middle of the night…what if she throws up and needs an injection…”
Oh, the ‘What If’ game! I played this game the whole weekend after visiting Mother’s Morning Out. It was exhausting. I cried, I yelled, I had to stop and catch my breath. The reality of what could happen had come up to the surface and was a little too much for me to bear.
I kept telling myself that June will get sick, and we will have to stress dose, and the hospital is 18 minutes away if we need it. But when she does get sick, my world gets turned upside down because I no longer know what the next day will bring. Our routine gets thrown out the window.
Tony and I know what we are doing (for the most part), and we know what to look for and when June needs more medication. We know what can lead to a crisis. I once could tell that June was getting sick just because she had bad breath the day before! Who else is going to know her like I do??
Like Tony said, this is what we do. It has become our normal, and I like knowing what to expect day after day. But seeing June grow up and preparing her for life outside of our home-of-hygiene sure adds a new dimension to our “normal,” and I just question whether or not I am ready for this step.
I tell myself, “cross that bridge when you get to it,” but now that first little bridge has approached and there is a part of me that would rather jump off than cross it! Well, I can’t hold June hostage forever. I guess I will have to come to terms with our new “normal,” now putting my trust in the hands of other adults, accepting the fact that June will get sick, and embrace the unknown.
I will cross that bridge, I just hope that June holds my hand the whole way!
Friday, February 18, 2011
Hydrocortisone Emergency Kit
After my daughter was diagnosed with adrenal insufficiency, we had several meetings with her pediatric endocrinologist who tried to prepare us for the eventual possibility of an adrenal crisis. We were told the important signs to look for and given the Solu-Cortef injection, aka "the shot". While I searched for an appropriate container for the shot and associated paraphenalia needed for our emergency kit, my husband acted out the scene from Pulp Fiction where John Travolta's character jabs Uma Thurman's character in the chest with an adrenaline shot. As I systematically emptied drawers looking for a small Rubbermaid container- he rummaged through the desk for a purple sharpie marker. I finally found a not yet used pencil box that fit the Solu-cortef vial, into which he tossed a black sharpie mentioning that maybe we could get a purple one next time we were at Walmart. Needless to say, the sharpie was removed. It is not needed in the emergency kit. Unless you want to write, Emergency Hydrocortisone Kit on the outside of the container. I did.
Then I spent more days than I care to admit, stressing about the shot. What if I have to give it to her? How do I know when? What if I do it wrong? In my search for the answers, I felt more comfortable as I gathered supplies prepared for the situation. I packed an emergency kit, I familiarized myself with the procedure and most importantly the symptoms leading up to an adrenal crisis.
SIGNS OF ADRENAL CRISIS:
Usually there are signs before an adrenal crisis strikes. Knowing what signs to look for and having an emergency kit on hand at all times are 2 important steps to dealing with an adrenal crisis when it happens.
SYMPTOMS:
The most common symptoms of adrenal insufficiency are chronic, worsening fatigue; muscle weakness; loss of appetite; and weight loss. I watch for complaints of headache, nausea and tummy aches, diarrhea, dizziness or confusion. These are flag symptoms for me that something is not quite right. If I notice these in my daughter, I pay close attention to her and keep the emergency kit handy. A lot of times, stress dosing can help prevent adrenal crisis. But sometimes, despite precautions- sicknesses, injuries, and stress can lead to an acute adrenal crisis.
It also occurred to me that all of the symptoms that indicate adrenal crisis could also be attributed to the flu or other illnesses. How do I know? Since illnesses can exacerbate the symptoms of adrenal insufficiency, I decided my best bet was to pay close attention to my daughter's moods and physical health. It helped when her endocrinologist told me that we could not overdose with Hydrocortisone and from there I adopted a better safe than sorry attitude. Adrenal Crisis can be fatal, it helped to know that I wouldn't harm her further by giving her extra Hydrocortison if necessary. If at any time there is severe vomiting, more than two times in an hour- or a loss of consciousness, the injection should be given.
WHAT'S IN MY EMERGENCY KIT:
Hydrocortisone Pills
Solu-cortef Vial (prescribed by a physician)
Needle(sterile)
Syringe(sterile)
Hand Sanitizing Wipes
Alcohol Wipes
Gauze Pads
Bandaids
Emergency Letter from Physician- This letter has my daughter's condition, how to treat it in an emergency and her physician's contact information. It is important for travelling with the injection and security checkpoints.
I use a small pencil box, some people use a first aid kit, zipper pouch, or a tupperware container. The container is less important than the contents and it's most important that it's a size that is portable and easy to carry. I carry extra pill form Hydrocortisone(marked H, because she is also on Fludrocortisone) for days that we are out and about. I try and check my supplies every month or two as the pills and band-aids seem to get used up on a regular basis. I also double check to make sure the vial has not expired (they usually have a couple year life span) and that none of the sterile packages have been ripped open. If they have, I replace them.
Resources:
http://endocrine.niddk.nih.gov/pubs/addison/addison.htm
Adrenal Crisis as defined by the NIH
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001397
Then I spent more days than I care to admit, stressing about the shot. What if I have to give it to her? How do I know when? What if I do it wrong? In my search for the answers, I felt more comfortable as I gathered supplies prepared for the situation. I packed an emergency kit, I familiarized myself with the procedure and most importantly the symptoms leading up to an adrenal crisis.
SIGNS OF ADRENAL CRISIS:
Usually there are signs before an adrenal crisis strikes. Knowing what signs to look for and having an emergency kit on hand at all times are 2 important steps to dealing with an adrenal crisis when it happens.
SYMPTOMS:
- sudden, penetrating pain in the lower back, abdomen, or legs
- severe vomiting and diarrhea
- dehydration
- low blood pressure
- loss of consciousness
The most common symptoms of adrenal insufficiency are chronic, worsening fatigue; muscle weakness; loss of appetite; and weight loss. I watch for complaints of headache, nausea and tummy aches, diarrhea, dizziness or confusion. These are flag symptoms for me that something is not quite right. If I notice these in my daughter, I pay close attention to her and keep the emergency kit handy. A lot of times, stress dosing can help prevent adrenal crisis. But sometimes, despite precautions- sicknesses, injuries, and stress can lead to an acute adrenal crisis.
It also occurred to me that all of the symptoms that indicate adrenal crisis could also be attributed to the flu or other illnesses. How do I know? Since illnesses can exacerbate the symptoms of adrenal insufficiency, I decided my best bet was to pay close attention to my daughter's moods and physical health. It helped when her endocrinologist told me that we could not overdose with Hydrocortisone and from there I adopted a better safe than sorry attitude. Adrenal Crisis can be fatal, it helped to know that I wouldn't harm her further by giving her extra Hydrocortison if necessary. If at any time there is severe vomiting, more than two times in an hour- or a loss of consciousness, the injection should be given.
WHAT'S IN MY EMERGENCY KIT:
Hydrocortisone Pills
Solu-cortef Vial (prescribed by a physician)
Needle(sterile)
Syringe(sterile)
Hand Sanitizing Wipes
Alcohol Wipes
Gauze Pads
Bandaids
Emergency Letter from Physician- This letter has my daughter's condition, how to treat it in an emergency and her physician's contact information. It is important for travelling with the injection and security checkpoints.
I use a small pencil box, some people use a first aid kit, zipper pouch, or a tupperware container. The container is less important than the contents and it's most important that it's a size that is portable and easy to carry. I carry extra pill form Hydrocortisone(marked H, because she is also on Fludrocortisone) for days that we are out and about. I try and check my supplies every month or two as the pills and band-aids seem to get used up on a regular basis. I also double check to make sure the vial has not expired (they usually have a couple year life span) and that none of the sterile packages have been ripped open. If they have, I replace them.
Resources:
http://endocrine.niddk.nih.gov/pubs/addison/addison.htm
Adrenal Crisis as defined by the NIH
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001397
Wednesday, February 9, 2011
Adrenal Insufficiency
It's not a diagnosis any parent wants to hear. Adrenal Insufficiency. It's rare. People have no idea what it means and generally haven't heard of it. The assumption is if they haven't heard of it, it can't be too dangerous. The problem with adrenal insufficiency is that a child can go from normal to crisis in a very short amount of time. Some days are normal-ish and others yield roadblock after roadblock. This is a place to share stories, tips and information to help other parents facing similar challenges. We are not doctors, but we have seen quite a lot of them. We can't help diagnose or treat your child, but hopefully we can give you some resources that can help you find someone who can.
Adrenal Insufficiency is treatable. It can be severe. There will be emergencies, but those can be handled with the proper knowledge, awareness, and preparation. If you suspect your child has adrenal insufficiency, it is important to get medical treatment from a licensed physician.
There are support groups on various sites. There is a group on Facebook called Parents of Adrenal Insufficient Children. There are also forum sites on MDJunction (http://www.mdjunction.com/) for adrenal insufficiency and parents of adrenal insufficient children.
Adrenal Insufficiency is treatable. It can be severe. There will be emergencies, but those can be handled with the proper knowledge, awareness, and preparation. If you suspect your child has adrenal insufficiency, it is important to get medical treatment from a licensed physician.
There are support groups on various sites. There is a group on Facebook called Parents of Adrenal Insufficient Children. There are also forum sites on MDJunction (http://www.mdjunction.com/) for adrenal insufficiency and parents of adrenal insufficient children.
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