Tips for your next doctor's appointment:
1. Write your questions down so you won't forget them.
2. Stay focused on what you want ask, be clear and stay on track.
3. Make sure that your questions are of medical nature, keep your feelings separate.
4. If you have a lot of questions make a special appointment so the doctor can allow for enough time to answer
all of your questions.
5. Educate yourself about you or your loved ones condition.
6. Try and learn more about you or your loved ones doctor's office,medical center or hospital so you can feel more
confident about going there.
7. Learn about your health plan this will help you to be more prepared and confident as well.
1. Write your questions down so you won't forget them.
2. Stay focused on what you want ask, be clear and stay on track.
3. Make sure that your questions are of medical nature, keep your feelings separate.
4. If you have a lot of questions make a special appointment so the doctor can allow for enough time to answer
all of your questions.
5. Educate yourself about you or your loved ones condition.
6. Try and learn more about you or your loved ones doctor's office,medical center or hospital so you can feel more
confident about going there.
7. Learn about your health plan this will help you to be more prepared and confident as well.
A lighter load to bare
This is a tip for anyone on TPN, Total parenteral Nutrition. The home care Pharmacy
had given my son a huge back pack to use while he was hooked up. He is just 6 years
old and couldn't carry the big pack especially with the nutrients and pump inside. We
ride quads and looking through a catalog I saw a Hydration pack. And thought that
might work and it would be very light weight. I purchased the pack and it worked great.
These packs are high quality and light weight. Their design allows you to adjust the fit
to your shape. Not only are these packs designed to distribute the weight evenly is it
very comfortable to wear.
This particular pack is called the "Lobo". It is made by a company called Camelbak.
These packs are well worth every penny you may invest for one. If you have any
questions feel free to send us a note in our questions form. You can also visit
Camelbak at wwwcamelbakcom.
My son uses the CADD portable pump. The first thing I do is prepare the bag of
nutrients. Then I put the nutrients into the big pocket (where the water reservoir was),
each pack has a small whole at the bottom of the pocket. I fit the portion of the bag
where the line connects through the whole at the bottom of the pocket. I then draw the
line. When that is done I attach the pump and I tape the line to the back of the pump
(this is to ensure that the line won't get kinked). Then I put the pump UPSIDE DOWN
into the small pocket in the front of the pack. These packs have many adjustments you
just tighten where needed.
Specs for the "Lobo" pack by Camelbak
Capacity: 70 oz (2.0 L) (This is the water reservoir)
Dimensions: 17 in x 8.5 in x 4 in (432 mm x 216 mm x 101 mm) Volume: Cargo – 63 cu
in (1.03 L) Total Volume – 180 cu in (2.94 L) Weight: Empty Reservoir – 1.33 lbs (0.60
kg) Filled Reservoir – 5.71 lbs (2.59 kg)
Camelbak has packs designed to fit kids ages 5-10. The pack that Dylan has on in the
picture is an adult pack. When I purchased this pack for my son our dealer didn't have a
child's pack on hand. So you can imagine how much lighter these packs are. I hope
this helps. Alecia, Dylan's Mom
had given my son a huge back pack to use while he was hooked up. He is just 6 years
old and couldn't carry the big pack especially with the nutrients and pump inside. We
ride quads and looking through a catalog I saw a Hydration pack. And thought that
might work and it would be very light weight. I purchased the pack and it worked great.
These packs are high quality and light weight. Their design allows you to adjust the fit
to your shape. Not only are these packs designed to distribute the weight evenly is it
very comfortable to wear.
This particular pack is called the "Lobo". It is made by a company called Camelbak.
These packs are well worth every penny you may invest for one. If you have any
questions feel free to send us a note in our questions form. You can also visit
Camelbak at wwwcamelbakcom.
My son uses the CADD portable pump. The first thing I do is prepare the bag of
nutrients. Then I put the nutrients into the big pocket (where the water reservoir was),
each pack has a small whole at the bottom of the pocket. I fit the portion of the bag
where the line connects through the whole at the bottom of the pocket. I then draw the
line. When that is done I attach the pump and I tape the line to the back of the pump
(this is to ensure that the line won't get kinked). Then I put the pump UPSIDE DOWN
into the small pocket in the front of the pack. These packs have many adjustments you
just tighten where needed.
Specs for the "Lobo" pack by Camelbak
Capacity: 70 oz (2.0 L) (This is the water reservoir)
Dimensions: 17 in x 8.5 in x 4 in (432 mm x 216 mm x 101 mm) Volume: Cargo – 63 cu
in (1.03 L) Total Volume – 180 cu in (2.94 L) Weight: Empty Reservoir – 1.33 lbs (0.60
kg) Filled Reservoir – 5.71 lbs (2.59 kg)
Camelbak has packs designed to fit kids ages 5-10. The pack that Dylan has on in the
picture is an adult pack. When I purchased this pack for my son our dealer didn't have a
child's pack on hand. So you can imagine how much lighter these packs are. I hope
this helps. Alecia, Dylan's Mom
Medical Pack Camelbak Pack
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Little Leakers
Medical Tips From Parents And Or Care Givers
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IVIG - Reactions
My Dylan has had is share of reactions to IVIG. His first reaction was feeling cold and then chills, fever, and headache. These are classic
reactions. They first lower the rate of infusion and or stop infusion. Next infusion is prior to premeds. They now give Dylan a steroid and
benadryl prior to the infusion. At one point he would come home and the next day come down with the fever. Because he has a central line
they would admit him into the hospital. This happened 3 times before I got them to realize that is was a reaction to the IVIG, a reaction after
the premeds wore off. I would have to give him Aleve around the clock for 2 days to ward off the fever. Dylan now receives only Gammunex
IG with premeds. He no longer has reactions after the premeds ware off.
I did ask Dylan's doctor if we could possibly do sub que IG at home. He said that it wouldn't be possible for Dylan because he looses fluids
at an unstable rate. The sub que IG is given per dose once a week. Dylan's losses change from week to week. So we are to continue our
clinic visits, not that I am complaining. Dylan is stable and I am happy for that.
The main thing is that the patient is watched closely. If you or your child gets IVIG take note. If you or your child feels cold that is the first
sign. Good Luck! IVIG is a blessing.
My Dylan has had is share of reactions to IVIG. His first reaction was feeling cold and then chills, fever, and headache. These are classic
reactions. They first lower the rate of infusion and or stop infusion. Next infusion is prior to premeds. They now give Dylan a steroid and
benadryl prior to the infusion. At one point he would come home and the next day come down with the fever. Because he has a central line
they would admit him into the hospital. This happened 3 times before I got them to realize that is was a reaction to the IVIG, a reaction after
the premeds wore off. I would have to give him Aleve around the clock for 2 days to ward off the fever. Dylan now receives only Gammunex
IG with premeds. He no longer has reactions after the premeds ware off.
I did ask Dylan's doctor if we could possibly do sub que IG at home. He said that it wouldn't be possible for Dylan because he looses fluids
at an unstable rate. The sub que IG is given per dose once a week. Dylan's losses change from week to week. So we are to continue our
clinic visits, not that I am complaining. Dylan is stable and I am happy for that.
The main thing is that the patient is watched closely. If you or your child gets IVIG take note. If you or your child feels cold that is the first
sign. Good Luck! IVIG is a blessing.
Bactrim or SULFAMETHOXAZOLE / TRIMETHOPRIM - ORAL
This medication is used to prevent and treat a certain type of pneumonia (pneumocystis-type). This is the reason why the doctor had my
Dylan on this med. as a precaution.
Dylan had a nose bleed on and off for 21/2 days due to the dry weather. At the same time, we were unaware, he picked up a virus. He
started feeling bad and I took him to clinic. He had lost blood from the nose bleeds but due to him taking the Bactrim his body wasn't
reproducing the blood cells that were missing. Dylan needed 11/2 pints of blood. So be very careful when having your child on Bactrim as
this can happen. It can suspend the body's ability to reproduce the cells. I am sorry I can't be more detailed, I'm going off memory.
This medication is used to prevent and treat a certain type of pneumonia (pneumocystis-type). This is the reason why the doctor had my
Dylan on this med. as a precaution.
Dylan had a nose bleed on and off for 21/2 days due to the dry weather. At the same time, we were unaware, he picked up a virus. He
started feeling bad and I took him to clinic. He had lost blood from the nose bleeds but due to him taking the Bactrim his body wasn't
reproducing the blood cells that were missing. Dylan needed 11/2 pints of blood. So be very careful when having your child on Bactrim as
this can happen. It can suspend the body's ability to reproduce the cells. I am sorry I can't be more detailed, I'm going off memory.
It's always smart to research any meds or advice given to you. I am always learning that I'm NOT asking
enough questions or researching enough.
I had no idea about the long term use of Bactrim and I did ask. I also didn't know that Albumin had trace
amounts of aluminum. And that they have a blood test that can check the aluminum level. The point is
"How would I know" and "How would you". That's why it's important to pass on information. I hope this
helps someone out there.
enough questions or researching enough.
I had no idea about the long term use of Bactrim and I did ask. I also didn't know that Albumin had trace
amounts of aluminum. And that they have a blood test that can check the aluminum level. The point is
"How would I know" and "How would you". That's why it's important to pass on information. I hope this
helps someone out there.