MPS and ML Forums - Blogs http://mpsforum.com/forums/blog.php Support for MPS and ML Families en Fri, 18 May 2012 09:59:38 GMT vBulletin 60 http://mpsforum.com/forums/images/misc/rss.jpg MPS and ML Forums - Blogs http://mpsforum.com/forums/blog.php Isaiah and Christian http://mpsforum.com/forums/blog.php?b=27 Tue, 25 Oct 2011 01:59:31 GMT I haven't been on for some time. Taking care of the boys is a full time job. I not only care for them, but take care of all the household chores. I started caring for the boys in 2008. I love them so very much. They have been through so much in this past year. Many visits to the doctors. Christian has stopped saying words, but remains a sweet happy child. He runs around the house with his little hands up in the air chattering. He no longer plays with toys. He love music and watching DVD's. He sure keeps things interesting in the house. Isaiah has slowed down a lot. He has trouble sleeping and eating at times and won't walk when he doesn't want to. Just recently he has been having small seizures. He is being admitted to the hospital tonight. He is so precious and loving. He loves to be held and rocked.
I ask for prayers :prayingfor my precious little ones and for their father, Ron, who loves them so much and is having a hard time dealing with the MPS. ]]> Gerrie http://mpsforum.com/forums/blog.php?b=27 The Caregiver Blog - 5. Wages and Compensation http://mpsforum.com/forums/blog.php?b=26 Fri, 08 Jul 2011 22:54:07 GMT Caregiver compensation varies depending on a number of factors, but is determined primarily by certifications and experience. A childcare worker...
Caregiver compensation varies depending on a number of factors, but is determined primarily by certifications and experience. A childcare worker with no certifications and little experience may work for a little over minimum wage, whereas a CNA with years of experience can earn $15-$20 per hour and more, depending on the market and the demands of the job. Typical home care CNAs will work for $10 to $12 per hour. If you hire a live-in caregiver you can expect to pay a slightly lower hourly wage in exchange for room and board.

There are a few easy ways to find out what caregivers make in your area. One is to check the classified ads to see what others are offering. Hospitals and nursing homes in your area may have job listings for CNAs that may also give you an idea about the going wage. The best live-out caregivers will make the same amount or more. As you start to meet and interview caregivers you can easily ask what they have been paid at previous jobs as a way to get a feel for what is customary in your area.

If you are working through your state agency they will typically have a set rate that they will either pay the caregiver directly or that they will reimburse at, and this varies from state to state. Many families find that to get a good caregiver they need to supplement this reimbursement themselves, but find that the peace of mind of getting a more qualified aide makes up for the expense.

If you will be paying the caregiver yourself you need to find out about your federal and state tax obligations. Federal requirements can be found at http://www.irs.gov/taxtopics/tc756.html. Almost any tax preparation accountant can advise you on the requirements of your situation and help you with the necessary paperwork.

Next: Finding and Hiring a Caregiver ]]> gwingatetx http://mpsforum.com/forums/blog.php?b=26 The Caregiver Blog - 4. Working with Agencies http://mpsforum.com/forums/blog.php?b=25 Tue, 07 Jun 2011 23:47:21 GMT Caregivers looking for home care opportunities will often work through a home healthcare agency. Working through an agency makes it easier for...
Caregivers looking for home care opportunities will often work through a home healthcare agency. Working through an agency makes it easier for caregivers to find new places to work after a patient engagement is concluded. These agencies also conduct the background and reference checks that are absolutely necessary for the safety of the patient and their families.

Agencies make it easier for an MPS family to quickly find a caregiver who is qualified and safe. If a particular caregiver does not work out, an agency can send over another qualified caregiver quickly. An agency can also help you manage the caregiver and is their direct employer. This can make it easier to make tough decisions about replacing a caregiver, especially knowing that the agency generally has a replacement available.

An agency has a management fee that is added to the caregiver’s hourly rate, so you can expect to pay a little more than the going rate for a ‘free agent’ caregiver. In some cases, the caregiver may find they are making a little less, too. With some agencies you may find it more difficult to retain good caregivers due to their high employee turnover.

It is important to check an agency's credentials and standing with your state's department of health services before you start. Part of every state's licensing requirements include criminal background checks on all healthcare providers, proof of liability insurance, and a management plan as to how healthcare providers will be supervised. Many agencies are Medicare/Medicaid certified and can sometimes help you find financial resources through these programs, too.

Next Week: Wages and Compensation ]]> gwingatetx http://mpsforum.com/forums/blog.php?b=25 The Caregiver Blog - 3. Respite, Nannies, and Au Pairs http://mpsforum.com/forums/blog.php?b=24 Sat, 21 May 2011 07:08:20 GMT *_Respite Caregivers_* Most states have programs that will pay all or part of the cost of an in-home caregiver, and many states will hire and place... Respite Caregivers Most states have programs that will pay all or part of the cost of an in-home caregiver, and many states will hire and place the respite caregiver. Respite care programs are in high demand and a family can spend years waiting on the list before their turn comes up. Because respite care is funded by the state it is the best way to get affordable care for an MPS child.

If your state does the hiring of the caregivers you have much less choice as to who is placed. It can be difficult to find and retain someone who is a good fit for your child and home. Some states will provide funding for the family to hire their own respite care person instead, or to pay a friend or family member to help out, but sometimes families have to supplement the funding out of their own pockets in order to attract and retain the best workers. Respite care will be covered in more detail later.

Nannies If your child with MPS has few medical needs then you may do well with a nanny or other in-home childcare specialist. At a minimum, a nanny, like any childcare worker should have First Aid and CPR training and certification, and ideally some training in child development. There are few other certifications for these workers and like all caregivers experience is the best training.

Nannies specialize in helping with children and come from a variety of backgrounds. Most will prove to be adaptable to the special physical, developmental, and behavioral needs that may be involved with your child but not all are suited to work with a child with special needs.

Au Pairs Some MPS families have had good luck with au pairs, although they are not an option for everyone. An au pair is a typically female student who comes to the US from a foreign country to work for a family and study for a year. The host family provides a private bedroom and all meals, plus a weekly salary that is tied to the minimum wage. With a steep program fee, education fee, and other expenses this can be a costly option, but au pairs tend to be reliable for that year and can work very flexible hours.

Next: Working with Agencies ]]> gwingatetx http://mpsforum.com/forums/blog.php?b=24 The Caregiver Blog - 2. Who Are They? http://mpsforum.com/forums/blog.php?b=23 Fri, 13 May 2011 23:30:31 GMT The best caregivers get into the profession because they genuinely like taking care of people. They can become very attached to the person they are... The best caregivers get into the profession because they genuinely like taking care of people. They can become very attached to the person they are caring for and get a great deal of reward in giving them a better life. These are the people you are seeking out, and many are looking for the opportunity to care in your home for your child.

Your challenge is to find these roses among the thorns. You may get lucky and find one in the first person you interview, but likely you will meet 6 to 10 prospects or more before you identify the caregiver that is right for you and your child.

For the most stable employees, an MPS parent should seek out a professional caregiver for their child. Although many people will become caregivers while in school or during a transition between other jobs or life stages, a professional caregiver intends to do this as their primary career. They are looking for long-term jobs that are both challenging and varied, and in a pleasant environment.

CNAs If your child needs a person experienced in medical issues you should try to find someone with formal training. To make themselves more employable many professional caregivers will get training and become certified as healthcare aides. These are usually known as Certified Nursing Assistants, or CNAs, but may be called Patient Care Assistants, State Tested Nurse Aids, or some other name in your area. The important thing is that a state or other public healthcare entity has certified that they have basic nursing skills.

CNA training is available through community colleges and the Red Cross, and can sometimes be acquired through on-the-job training. Certification requires about 75 hours of learning and includes training in such areas as basic nursing skills, assisting with the activities of daily living, moving patients safely, care of cognitively impaired patients, safety and emergency procedures, infection control, and interpersonal skills. Experienced CNAs will have worked with gastrostomy feeding, clearing mucous, shunts, and other issues that often accompany the MPS diseases.

Caring for an MPS child in a home environment is one of the most desirable jobs for a CNA. The most numerous job opportunities for CNAs are institutional, such as in nursing homes and as hospital orderlies. These are fast paced environments demanding a lot of physical strength and stamina. They also do not allow the caregiver to spend time one-on-one with their patients. Home care for an MPS child is a great opportunity in comparison.

Next Week: Nannies and Au Pairs ]]> gwingatetx http://mpsforum.com/forums/blog.php?b=23 The Caregiver Blog - 1. What this blog is about http://mpsforum.com/forums/blog.php?b=22 Fri, 06 May 2011 23:30:17 GMT Who has hired caregivers for their MPS child? Where did you find a good candidate for the job? How much did you pay? Did you pay out of pocket... Who has hired caregivers for their MPS child? Where did you find a good candidate for the job? How much did you pay? Did you pay out of pocket or use state programs or another source of financial aid? Was your caregiver heaven sent? Or did you end up with one with more evil origins?

If you have experiences to share or questions to ask, I need your help. I have volunteered to research and write an information guide for the National MPS Society about how to find, hire, and manage a caregiver for an MPS child. I am all too familiar with this topic since I was a single father for a wonderful, sweet girl with MPSIIIA. I relied on caregivers a lot because I had to work and I had to provide a comfortable, safe, and happy life for my Jenny.

Over the course of 9 years, I employed 7 different caregivers, mostly Monday through Friday for 12 hour shifts. Some lasted just days, and others for many years. I hired from agencies, from friends of friends, and from ads. I had live-out, live-in, full-time, part-time, and PRN (medical terminology for 'as needed'), licensed and unlicensed, citizens and, um, visitors to our country. I had great experiences and I had horrible experiences, and other ones in between. My goal is to share my experiences and yours with other families so that they do not have to go through the same (painful!) learning curve.

When my Jenny passed away in March of 2009, I ran for election to the board of directors of the National MPS Society. I have been a board member for just over a year now and serve on both the Family Support and the Education/Publicity committees.

The Society supported this effort to write an information booklet on caregivers to publish as a resource to the membership. As I have been organizing my experiences, I realized that adding the experiences that others have with caregivers would be much better than just using my own. That is why I came here. A blog is a perfect format for this task. This is how I will be using it.

Once every week or so I will be blogging on a different topic around the caregiver experience. The blog will essentially be the rough draft of the final booklet. Any dialog that comes from your comments and questions will go into filling in the gaps. If you think of something I left out, tell me. If you don't like it, tell me that, too. I hope you can be my research assistants and my editors.

In the end this blog will also be a valuable research tool for members of this site struggling with a caregiver problem. I suspect that in the end the blog may get more use than the booklet!

We'll kick this off next week with 'Who Are They?' It will be about the people who do this job, why they do it and especially about the ones who really find caregiving a rewarding profession. I hope you will stick around.

Thanks to all,
Gordon ]]> gwingatetx http://mpsforum.com/forums/blog.php?b=22 hip and knee surgerynopinions http://mpsforum.com/forums/blog.php?b=21 Fri, 25 Feb 2011 00:59:50 GMT I have not been here in over a year. Alana is doing very well. I need to talk with parents whose children have undergone the hip and knee surgeries... I have not been here in over a year. Alana is doing very well.
I need to talk with parents whose children have undergone the hip and knee surgeries that are recommended for MPSI.
I also would like to speak with parents whose children did not have the surgery/surgeries. Please let me know. We are considering all of our options in advance and value everyone's opinion.

Patti ]]> http://mpsforum.com/forums/blog.php?b=21 HepC http://mpsforum.com/forums/blog.php?b=20 Mon, 07 Feb 2011 13:09:26 GMT ---Quote (Originally by Stephen)--- Monday I start my HepC treatments. Been looking at potential side effects and they are unfun. But this needs to...
Quote Originally Posted by Stephen View Post
Monday I start my HepC treatments. Been looking at potential side effects and they are unfun. But this needs to be done and its alomst the last unfinished business of 2010. Its been a long battle this past year, thankfully I can see an end of it it on the far horizon. Just have to keep slogging forward and remember my motto.
Hang in there Stephen.

How long will you be doing the treatments?

-t ]]> ethansdad http://mpsforum.com/forums/blog.php?b=20 cord blood banking http://mpsforum.com/forums/blog.php?b=19 Wed, 05 Jan 2011 05:35:10 GMT --- --- ]]> ericajth http://mpsforum.com/forums/blog.php?b=19 Introducing Lysosomal Storage Research Group and YouTube Channel http://mpsforum.com/forums/blog.php?b=18 Tue, 19 Oct 2010 16:50:46 GMT :) Dear Friends , My name is Laura Moldovan, I work at The Hospital for Sick Children in Toronto, Ontario, Canada for the Lysosomal Storage... :) Dear Friends ,

My name is Laura Moldovan, I work at The Hospital for Sick Children in Toronto, Ontario, Canada for the Lysosomal Storage Research Group of Dr. J.T.R. Clarke and I'am creating educational software programs, to serve as a training resource in diagnosis and management of Lysosomal Storage Diseases.

Dr. Clarke team is a multidisciplinary team of medical specialists in various aspects of lysosomal storage diseases. For more information please visit our website:
http://www.lysosomalstorageresearch.ca/

For viewing a collage of wonderful images taken at the latest MPS Family Conference held in Ontario please visit this link.


We would also kindly like to invite you to our YouTube channel and view posted videos of interest:
LysosomalResearch


Wishing you all the best :hello


Laura ]]> Minalora http://mpsforum.com/forums/blog.php?b=18 A Year in the Life http://mpsforum.com/forums/blog.php?b=17 Sun, 15 Aug 2010 03:57:39 GMT Well, here we are...a year into our "new life" with MPS II. I cannot believe it. I thought I would feel differently. I thought I would be grateful to look back and see how far we have come. But...I am scared. I am scared that this first year is one less year we have with Timothy. Most of all I am scared that this year was not cherished as much as I would have liked for it to have been. I can honestly say that this past year has been one doctor/specialist visit after another. I would like to purpose this next year to be one remembered with family laughs and joyful times spent together creating memories, not sitting in doctors' offices waiting for another year to pass. ]]> timmysmommom http://mpsforum.com/forums/blog.php?b=17 testing http://mpsforum.com/forums/blog.php?b=16 Wed, 11 Aug 2010 21:17:40 GMT Trying to see if I can attach a signature Trying to see if I can attach a signature ]]> Gerrie http://mpsforum.com/forums/blog.php?b=16 MPS II case in Lima-Peru. They need our help. information is highly appreciated it !! http://mpsforum.com/forums/blog.php?b=15 Tue, 13 Jul 2010 18:32:04 GMT Hi everyone !
My name is Fabiola Forste and I'm helping my friend Giovanni with this particular case. They live in Lima-Peru (South America). 2 years ago his sons (Gabriel & Joaquin) were diagnosed with MPS II. Unfortunately there are not drs. with MPS background in Lima due to there are not too many cases, and of course there is no medicine and treatment for it.
(Gabriel & Joaquin are 3 & 6 years old).



A group of friends and I are trying to contact Researchers, Doctors, anybody that can help our friend telling us a little bit more about MPS and what kind of cares they need to do.

We have a lot of questions about MPS II, if there is someone there that can help us we'll really appreciate it.
In particular, we want to know about MRI. The kids are going to have their first one and their parents are very worried about sedation, infusion, risks, side effects,etc.. please let me know if there is any information you can share with us.


Thanks in advance for your help.!!!
my email address in case you want to contact me directly is:
fabiola_forste@yahoo.com
phone # 703-8970560

God Bless you all and your families !
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]]> Fabiola Forste http://mpsforum.com/forums/blog.php?b=15 <![CDATA[Landon's Story]]> http://mpsforum.com/forums/blog.php?b=14 Thu, 27 May 2010 16:05:51 GMT We have known since the time that Landon was about 18 months that something wasn't right. Right after he turned 1 he would say "ball" and "baby"but that was about it. He didn't seem to interact with his peers the same way as other kids his age. He had recurrent ear infections as a baby and has 2 sets of tubes placed. We took him to doctors constantly for the first 2 years and they could never come up with anything. I got responses like "all kids are different" "he'll talk when he's ready" and everything else under the sun. When he turned 3 in July and still had no language, we decided to enroll him in our local special education program to see if they could help. He has been in special education since. In April, the physical therapist from school came to us with concerns of MPS. Another child in our area had recently been diagnosed with brainstem cancer and MPS and she thought that Landon fit the description. Since then we have been to appointments non stop and it has been determined that Landon does in fact have MPS III but doctors are still determining wether it is ABC or D. They are quite certain he has type A but only time will tell. Dr. Whitley has told us that if it is A, Landon will qualify for the natural history study they are conducting which is wonderful. This diagnoses has shattered the dreams I have for my angel, but I am remaining hopefully and doing everything I can to get him through this. He is a blissfully happy child who has an ear to ear grin that would melt even the coldest heart. We also have a 7 month old son, Blake, who Dr. Whitley also believes has an MPS disorder, but we haven't gotten his test results back at this time. We are praying for a negative result. I had never heard of MPS before this diagnosis came back and it is heartbreaking that families are going through this. I feel like I go through the stages of grief 14 times a day. Sometimes I can accept it and be positive, and other times I cannot control the anger I feel that something so horrible would touch my beautiful, innocent children. I see people at the park with their "normal" kids and hate that I feel resentful, but knowing that my chidlren will not have the life I envisioned for them is sometimes unbearable. I pray that God will answer the prayers of all the families here on this site and all the families who don't have support that he will help us find answers on this journey that we are facing. ]]> ashriggs http://mpsforum.com/forums/blog.php?b=14 Christian decides to eat night light. http://mpsforum.com/forums/blog.php?b=13 Wed, 26 May 2010 18:00:57 GMT Hello, We haven't been on for a while. Yesterday Christian comes down the stairs with a night light in his hand chopping away on the bulb. :help It was quite a shock and instant " Oh, what do I do?" I managed to get my finger in his mouth and pull out the big pieces and then took a wet washcloth and washed his mouth out with it. I took and put him over the kitchen sink and turned on the spray hose and let the water wash out his mouth. He looked at me and Vitoria as if what is the big deal?:roll:
We spent the rest of the afternoon at the ER at the hospital for Xrays. He was a little trooper through it all. His brother Isaiah of course had to go through the ordeal with him, but he is a little sweetie and was good the whole time.
The Dr. said that I did not necessarily have to bring him in, but I sure did not want any complications happen for him. The nurse on call told me to get him in ASAP.
Christian is doing fine today. He surprisingly did not have any cuts in his mouth. I thank the Lord that all is well. You think you have everything put away and find out you forgot something. :frown: ]]> Gerrie http://mpsforum.com/forums/blog.php?b=13