Having a special needs Child
Hi my name is Lisa and I would like to share some information with you. I am not an expert in the medical field but I am a mother who has spent the last 9 years caring for my Daughter Angel who has a condition called Vater Syndrome. This condition goes by several names Vater syndrome is one another is sacreal agenisis and the other is caudal regression. Vater is actually an acronym. This is the actual meaning: The initials in V.A.T.E.R. syndrome refer to five different areas in which a child may have abnormalities: Vertebrae, Anus, Trachea, Esophagus, and Renal (kidneys). There may also be cardiac and limb conditions, which changes the acronym to V.A.C.T.E.R.L. . Angel was born with the V- she had a tethered spinal cord which was released when she was 1 and she is meeting with the Nuerosurgeon this week to explore if it is tethered again. This means that the bottom of her spinal cord was like a big ball of yarn that is all tangled. This is very serious and could result in paralysis if not treated properly. If treated properly this is very manageable.
Angel was also born with the A and the R and the Added C
She had an impreforated Anus which caused her to have to have surgery when she was 2 days old to have a colostomy. This was eventually reconstructed and reversed when she was about 4 years old.
She has the C which is Cardiac. She has a condition called WPW or Wolfe Parkinson White which is a heart condition that affects the electrical system in the heart and she also has a more common ailment of a heart murmur. WPW is usually not much of a problem until the child reaches puberty and then we have to be careful. With this condition it is very important to not be really scared or upset as this could set off the electrical impulses and put her heart into an irregular beat that will just go faster and faster until it is medically stopped and slowed back down. So roller coasters are not in her horizon but other than that we have not had problems from her heart. Thank God!!!
Angel also has the R which is by far the most detailed of her sickness as the Renal Failure has caused her to be on dialysis for the last 5 years. She has to be on dietary and fluid restrictions and has to come to dialysis 3 times a week for 4 hour treatments. Dialysis is like an artificial kidney and it is wonderful that someone figured this out as there are so many people in kidney failure that would not survive without dialysis. Many people are treated for kidney disease and transplant is an option. Transplant is another treatment plan for ESRD patients(end stage renal disease) My daughter had a failed transplant back in 2009 and we have been waiting on her to grow some more before she would become activated on the list again so now we wait.
This is just an overview of her basic condition.
My daughter AngelRaye
Caring for a special needs child
When you or someone you know is on dialysis life changes. There are so many things to learn about and so much fear and anxiety that no one can really understand it unless they are involved in it some way. You can never decide ok today I am tired I don't feel like getting up and going or I want to go away for a week. Every treatment is mandatory if you want to survive. That might be easy to say but is not easy to live. As a parent I have other children beside Angel and I have a part time job about 30 hours a week and a household to run so my life can be really hectic sometimes. There are some days that I don't know what direction I am going. In addition to Angels dialysis treatments she also does bowel management treatments every evening which takes about 45 minutes on to a usual bath and settle down time.
Caring for my daughter comes naturally to me and my family as we fell in love with Angels huge spirit and tiny body once she came into this world with so much uncertainty. We were told so many things that turned out differently. We were told she may never sit up or walk. That she might not ever eat by mouth and that she would probably be slow to learn.
Angel has Rickets which is a bone disease that basically weakens the bones and makes them more brittle and like to break or even shatter. Even with bone pain she rarely uses her wheelchair. Back to the subject, She sits, stands, jumps and climbs just like any other kid except she has her big brother Jake to stay right next to her and make sure she does not fall. She eats regularly and gets supplemental feeds through her feeding tube at night just to keep her nutrition up. And if you ask Ms. Pam her teacher she will tell you that Angel is Amazing. She has gone from not know who to write her abc's and barely recognizing pre kindergarten reading to being on a end of first grade beginning of second grade level in just 1 school year. She is taught while on dialysis which is a challenge in it self as sometimes she gets terrible headaches and sometimes she just gets drained out. So even when you are told something might not go as planned it never hurts to keep trying as Angel keeps on and she is doing most of what she was told she would never do.
Caring for Angel can sometime be a challenge as she has many medicines to take each day. She must take one medicine each time she eats and in between her blood pressure must be monitored and she needs to do her treatment each night. Our days can kind of blur together sometimes. The good thing is Angel has family her Dad(Ray) and her big sister Jeana are very helpful in caring for her. When I am at work I don't have to worry did Angel get her shot or her treatment or miss any medicines.I am very thankful for this as some families do not have the support that I have. I also have the support from the hospital staff they are a wonderful group of people and they try very hard to make sure that all the patients have everything they need.
Every parent goes through worries for their children and concerns for the health and well being. Parents of special needs children just go through it a little more. Taking care of my daughter has opened my eyes to things I would have never known anything about, I have met children and families in the hospital that have truly amazed me and taught me things beyond my imagination. I see children that have no ability to speak and can barely push the button on a wheelchair to position them selves tell a joke on an ipad that has speech recognition and I have seen children that look like they are doing fine pass away before our eyes. This is what reminds me and keeps me focused that some things are totally out of my control and all I can do is follow the lead of my doctors and nurses and most importantly keep my faith in God.
Which do you think is better?
How would you get your dialysis treament?
Choice of Treatment options.
There are a few different ways that dialysis is done. Usually for pediatric patients they have a dialysis catheter which is a line with two ports inserted into the chest in your main arteries. This must stay clean and dry. With this option the patient just gets hooked up to the lines and does not have to endure any pain while getting hooked up to the dialysis machine.
The drawbacks to a catheter is that it must stay dry so hair washing and bathing are very difficult and swimming is not an option. The benefits are that you do not have to get stuck with needles every dialysis treatment
A fistula is an opening or connection between any two parts of the body that are usually separate—for example, a hole in the tissue that normally separates the bladder from the bowel. While most kinds of fistula are a problem, an AV fistula is useful because it causes the vein to grow larger and stronger for easy access to the blood system. The AV fistula is considered the best long-term vascular access for hemodialysis because it provides adequate blood flow, lasts a long time, and has a lower complication rate than other types of access. If an AV fistula cannot be created, an AV graft or venous catheter may be needed.
This is the option that most people select. The only drawbacks seem to be a big bulge under the skin. Most people don't seem to mind but young teenagers usually don't want this as then it will draw attention to them and then they have to start explaining it to people.
And then the last access I know of is arteriovenous graft
If you have small veins that won’t develop properly into a fistula, you can get a vascular access that connects an artery to a vein using a synthetic tube, or graft, implanted under the skin in your arm. The graft becomes an artificial vein that can be used repeatedly for needle placement and blood access during hemodialysis. A graft doesn’t need to develop as a fistula does, so it can be used sooner after placement, often within 2 or 3 weeks.
When a patient has a graft or a fistula they have to get stuck each treament.
When a child is under 9-10 years old they don't even offer anything other than the catheter as their veins are too small for the other options and they usually wont be to comfortable getting stuck each treament.
Kidney Action Day
It is very important to follow doctors orders
Do not miss treatments
Do no miss doses of medicines
Watch your diet and fluids
plenty of rest is very important also
In order to promote good positive health for my daughter and any special needs child would simply be put as this learn learn learn.... Everything my daughter has been through has taught our family more and more how to care for her. When she was a baby and needed a colostomy bag we all learned how to put it on her in case it loosened or needed to be changed. My daughter Jeana who was 9 or 10 at the time had little hands and she was able to cut the bags to the right sizes as her little hands fit right in the hole where you needed to cut. We have all spent a lot of time reading the internet and asking the doctors and nurses questions. I have learned so much from reading certain websites that were direct links to hospitals and doctors offices that have treated children with my daughters condition. When she was born many doctors came to see her and most wanted to refer her to different doctors in different states. This was so scary for us as we don't have much money and we had no idea how she would get the care she needed. Thankfully her Kidney Doctor. Dr. C as we call him real name is Dr. Campos. was there and told us get her through everything in this hospital come see me in my office and we will help you. Well he has helped get us referred to all the correct specialist and it was all done in our home town. We have seen our daughter through so many surgeries that I have lost count and I believe that each of them has taught her how to care for her.
When it comes to ESRD diet and fluids are a huge part of maintaining proper health. Diet must be low in sodium,low in phosphorus and low in potassium. This is really hard to figure out what to eat when everything has these ingredients. Anything that is good for us to eat is basically bad for them to eat. Having a good nutritionist in the hospital helps as they have tips and ideas but I will set up some links to some websites I have found to be helpful .
Also fluid restriction is a must.We are always told to drink at least 8 8 ounces of water a day. This would kill a dialysis patient unless they still had the ability to urinate which most don't. Angel is restricted to about 20 ounces a day. This does not always come easy especially if she is treated to something higher in sodium like her favorite Tacos.We make them at home to reduce the sodium but it still has a lot and she still gets thirsty. Angel is a true miracle as she learns to adjust to everything life has given her.
Dialysis patients tend to have skin problems also as the fluids are manually taken and given during treatments so their skin usually gets very dry and so does the hair. We have to make sure we use really good lotion so her skin does not get all bumpy.
Kidney Action Day
How I understand it
How I understand it is simple my daughter came very complicated into this world. We found wonderful doctors and nurses who understood and learned about her condition. We learned that diet and fluid restriction are paramount to healthy living.We also learned that all children are a blessing and should be cared for that way.
Thank you for reading about my daughters condition I hope you have learned something from me today.
Some organizations I find helpful
- Provider Profile - Faculty - USF Health - Tampa, Florida
- Home Page - National Kidney and Urologic Diseases Information Clearinghouse
- Home Page - National Kidney and Urologic Diseases Information Clearinghouse
- Welcome FistulaFirst.org
- IHI Home Page
- Kidney School™
Kidney School™ is an interactive, web-based learning program designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible. Kidn
- The American Association of Kidney Patients - Home
The American Association of Kidney Patients (AAKP) is a national organization that reaches one million people yearly affected by kidney disease, including patients (chronic kidney disease, end-stage renal disease, dialysis (hemodialysis/peritoneal) a
- The National Kidney Foundation, Inc.