|"I got Brady's Doctor to write a letter which we carry with us all the time. It outlines Lymphangiectasia and it's consequences and how it's
affecting Brady and what treatment is being undertaken. It has come in very handy when we've had to go to the emergency dept (especially if it's
not at the Children's Hospital) we just hand the letter over and it gives the triage nurses and doctors a better idea of what they're dealing with. It
is also useful if we have had to go to the local Doctor for a minor ailment they feel more comfortable after reading the letter and are not so likely
to send us on to Emergency. It also came in handy when Brady started Childcare, and we sent it to our insurance company when we were
trying to get Travel Insurance.
It is also worth keeping an eye on the childrens teeth. Brady's have de mineralised due to the extra loss of calcium in the early stages before he
was treated. He now sees a dentist every six months and we apply a Recaldent (tooth Mousse) Daily which has improved the look of his teeth.
Hope some of this helps. Helen (Brady's Mum)
|My though is "take charge". Be involved with the health care of your child or yourself. Learn as much as you can and try to work closely with your
doctors. Never assume anything. Listen to your inter voice, if it doesn't feel write, it's usually not. And never think "this is the way it will be", time
goes by and things change. You are not alone. Don't be afraid to reach out to someone. They may be able to give you what you need. Even if
you don't know you need it.
My son used to complain of his legs hurting and he wouldn't run. We also couldn't get him to walk far distances. When he fell ill we were told
that he was malnourished. We were told that when the body isn't receiving the protein it needs it will start to break down its own proteins. It will
start with the muscles. As a parent you would think you would be able to see if this was happening. You see your child everyday and this
change is so subtle. If your child tells you something is different take the time to investigate what and why. Even the littlest detail is worth the
time and effort. Even if someone tells you they don't know. Don't dismiss it. Find an answer. I didn't. At the same time remember we can only
accomplish that what is in our means. Alecia, Dylan's Mom
Tips From Parents and Caregivers
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.
A lighter load to bare - TPN
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
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
Alecia, Dylan's Mom
|Dylan is holding the
Medical Pack. In the
pictures above that
show the Medical
pack, the pack is
without nutrients and
Camelbak pack in
the pictures above
are shown with the
nutrients and pump.
Medical Pack Camelbak Pack
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.
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.
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.
My son was is the ER with a 105 or 40.5 fever. I was told by the ER doctor that if it is a low grade fever to give Tylenol. Do the same with a high
fever but after the first 30 minutes give Motrin. With a lasting medium to high grade fever you want to make sure that you are giving both Tylenol
every 4 hours and Motrin every 6 hours over lapping the doses. This keeps the fever away.
Please ask your doctor before you give your child any medications.
If you have any helpful tips, please let us know. We would love to share them. You
never know who you might be able to help.
I found out from Dylan's doctor that Albumin has trace amounts of aluminum in it. This happens during the processing therefore they can't
measure the amount. So if a person is on albumin for a long time the aluminum can build up in the body. Your medical caregivers can check
the aluminum level by a simple blood test.