Here are some things that medicaid will pay for. (Correct me if I'm wrong...sometimes it's hard to keep track because we have both private insurance and Medicaid so it's hard to know who is actually paying for things). Obviously don't take my word for it...check with medicaid. But these are things I have either gotten or continue to get.
Large DME
Safety Bed (ie: Sleep safe bed or Beds by George as examples) (Purchase)
Wheelchair or transportation chair (1 every 5 years) (Purchase)
Bath Chair (1 every 5 years) (Purchase)
Freestanding lift (not ceiling mounted) (Purchase)
Stander (1 every 5 years) (Purchase)
Carseat (1 every 5 years) (Purchase)
Vibrating vest (might take several appeals) (Purchase) (May need to be a particular brand...mine is the "In Courage" brand, but they didn't want to cover "The Vest" brand)
Light Therapy Light Box
Pulse Ox
Pulse Ox machine (sometimes a purchase, most of the time a rental)
Replacement sensors
Suction
Suction machine (usually a purchase after a few months of rental) (if it breaks they will pay for the repairs)
BBG's
suction caths
saline bullets
yanaukers
suction canisters
Suction extension tubing
Nebulizer
Nebulizer (Immediate purchase)
Neb cups
Neb meds
Neb masks
Bipap/cpap
Bi-pap/cpap machine (Usually purchase after a few months rental)
Hhumidifier chambers
Masks
Ttubing
Filters
Other
Oscillating mattress topper (Immediate purchase) (to prevent bedsores)
Diapers/Briefs/Incontinence
Diapers/Briefs (156 for medicaid and it doubles to 312 if you are on a waiver)
Doublers (inserts to absorb more in a diaper...these count against your diaper totals)
Chux (13 packages for 195 total count per month)
Lube (KY)
Gloves (boxes)
Cathing supplies
straight caths
Betadine swabs
Foley Caths (leave in caths)
sterile gloves
Sterile (small packets) KY (Lube)
Formula/G-tube supplies/GJ-tube supplies
Formula (if Dr. says it is "medically necessary") (I am not sure if they have to have a g-tube or not??? And I am not sure if they qualify if they eat by mouth??)
3 gtube extensions per month
1 peg cleaning brush per month (to clean the gtube extensions)
4 replacement gtube kits per year
Feeding pump (Rental...I have never heard of a purchase)
1 feeding pump backpack per year
Y-site extensions
60 mL syringes for feeding
A few slip tip 5 or 10 mL syringes for changing gtube...but no syringes for meds
30 feeding pump bags per month
Split qauze sofwiks (2 X 2's)
Oxygen
Oxygen tanks (You can have as many as you need and trade them out as often as you need to. You are not charged per tank)
Oxygen concentrator
Portable oxygen concentrator for traveling (You borrow it from homecare) (May need a new prescription)
Nasal canulas
O2 extension tubing
O2 swivel connectors
Water bags or canisters for humidifying O2
Small Miscellaneous
Coban
Tape
Sterile qtips
Toothettes (pink mouth swab on a stick)
Alcohol wipes
Adhesive remover
Wound care
Need RX for specific item you want/need
Glucose/Blood Sugar
Glucose monitor (Ask which kind of test strips will be covered, then get that kind of monitor. Your endocrinologist often has free monitors they can give you. Or you can call the glucose monitor companies and they will send you a free monitor)
Test strips
Lancets
Meds (I have listed ones you may not think to ask for)
1 pain med (either ibuprofen or acetaminophen...but not both) (can be liquid or pills)
Calcium (liquid or pills)
Miralax
Suppositories (but not enemas)
Multi-vitamin (only up to age 5)
AAC/Communication
AAC Communication devices (ie: switches, computer programs, dynavox, tobii, etc...)
Therapy
PT, OT, Speech
I think they may have recently started covering Autism therapy???
Nursing
In home nursing services depending on where you fall on their "acuity grid"
Dr. Visits/hospital stays
Dr. Visits (Well child and sick visits)
Hospital Stays (Inpatient)
Surgeries (Inpatient or Outpatient)
Ambulance rides
Immunizations
Glasses/Hearing Aids
I haven't done this one for a while so I'm not sure...if you know...please comment below
Hearing Aid Batteries
Dental
Dental Checkups
Cleanings
Xrays
Dental Work
Fluoride
Chiropractic
Chiropractor visits
Things I have been UNSUCCESSFUL at having Medicaid pay for...
Insulin syringes (but I haven't really tried that hard) (sometimes pharmacy will throw them in for free)
Wipes
More than 1 pain med (only ibuprofen or acetaminophen, but not both)
Vitamins after age 5
Bed bath wipes (spongy wipes)
Dry shampoo or liquid leave in shampoo
Hand sanitizer
Distilled water
syringes for meds (they will provide 60 mL)
cotton balls
med bottle adapters (sometimes pharmacy will throw them in for free) (these allow you to draw up liquid meds into a syringe more easily)
red tips that convert an oral tip syringe into a slip tip
lysol
lysol wipes
enemas
Probiotics
Tuesday, December 22, 2015
Monday, December 14, 2015
How to organize meds (medications) when you have A LOT of them
My daughter, Ellie, takes A LOT of meds. She uses a g-tube for all meds.
*I prefer pills over liquids, there are several reasons. #1) they are cheaper per mg #2) they are easier to find at pharmacies or over-the counter #3) If you need to grab a dose and bring it with you you can just grab a pill instead of having to bring the whole bottle of liquid med or drawing up the liquid med and risking it spilling #4) They don't have the sugar in them that liquids do #5) They don't have to be refrigerated #6) you can use syringes forever because you don't care if the numbers wear off the side
* I don't care if the numbers wear off the side for most of my syringes because I have chosen to crush my pills. But if you want your numbers to stay on longer, when you get new syringes, paint over the numbers with clear nail polish and allow to dry.
* Some people do not crush their pills. They draw water into a syringe, drop the pill into the water and let it sit and dissolve for about 12 hours (or more). Check with your pharmacist to make sure this will work with your meds, especially if they are time-released. I have never tried this method.
*Some people draw up a whole months worth of meds into syringes and label the syringes. I have never done this method.
Here is the method I have developed over 13 years...
#1) Label the top of each bottle with a round sticker like these. http://www.amazon.com/Round-Circle-Labels-Inkjet-Printers/dp/B00WMRH33Q/ref=sr_1_1?ie=UTF8&qid=1450110605&sr=8-1&keywords=3%2F4+inch+circle+labels The 3/4 inch ones fit on top of a medicine bottle perfectly. I would recommend NOT getting the removable ones, they fall off. I write three things on each sticker. The name of the med, the time it is given, how much to give (ie: 1/2 pill or if liquid 1 mL).
#2) Have a basket that all daily meds get thrown in to, I will call this the "Daily Med" basket. I used to try and line them up neatly in the basket, but it was a waste of time. If you follow my steps, it won't matter that they are a jumble. I set the liquid meds to the side of the basket because I don't want them to spill.
#3) Only keep 1 bottle of the med in this "Daily Med" basket. Have a different bin/box for what I call the "2nd tier" of meds. For example, you have 4 pills left in your bottle. That goes into the "Daily Med" basket. But you have already picked up your next bottle of the same med that you will start after you have given the 4 remaining pills. This new bottle will go into the box of "2nd Tier" meds.
#4) You will have a separate container of meds given occasionally. For example Ellie sometimes gets Ibuprofen, Acetaminophen, Miralax, etc...but they are not everyday. (I also have a 2nd tier box for nebulizer meds.)
#5) When it is time to give meds, pull out all of the medications. Look at the stickers on the lids and throw back any that are not given at this time. For example, if it is morning I throw back any that are only labeled PM. If they are labeled AM or is they are labeled AM/PM then I keep them out.
#6) Have a paper typed up that lists each med and the amount given. I don't really care about the actual dosage (ie: 8.8 mg per tablet) at this point, I just need to know how much to give her. If dosages change I just hand-write them onto my typed up sheet, then other people giving the meds will take notice of the changes (because of the handwriting). After awhile I will retype it. It might look something like this...
7 AM
Senna 1 pill
Calcium 1 pill
Multi-vitamin 1 pill
blah blah 10 mL
2:30 PM
Blah blah 2 pills
7 PM
blah blah 1 pill
blah blah 1/2 pill
blah blah 10 mL
#7) Go down the paper and line up each med as you read through the list. This verifies that you don't miss any, or give doubles. If they have a temporary med like an antibiotic, put a sticky note on this paper, then toss the sticky note when done with course. Speaking of antibiotics (or temporary meds) write with permanent marker the end date you will be giving the med on the actual bottle and on the sticky note.
#8) Start drawing up meds into syringes. As you toss a pill into the pill crusher, throw the medicine bottle back into the "Daily med" basket. This way, if you get distracted, you know which pills you have already done.
#9) Have some little drawers that hold your syringes and feeding tube extensions
#10) Have a bin to toss dirty syringes and feeding tube extensions into, then you only have to wash them once in a while and you can get it all done at once
#9) Have a set day that you order meds each week. Mine is Monday because if there are problems, I want a few days to figure it out before the weekend. Go down your typed up list check each bottle in your "daily med" basket. See if there is at least 8 or 9 days (because you will not be ordering for 7 more days and if you ordered it next Monday it may take 2 days or so to get a refill). If not, check your 2nd tier meds to see if you have another bottle. If you do not have 8-9 days of that med, jot it down and set that bottle aside. Once you have been through all of the meds and know what you need to order, go ahead and order. Usually there is an automated system you can call or text or do it online to reorder meds. If they give you any type of info about your reorder such as "This med will be ready today after 10 AM" or "We need to contact your Dr. for additional refills" jot that down on your paper.
You can usually get a refill at 24 -28 days after your last refill (depending on your insurance). I fill my meds as soon as they will let me, this lets me get a little tiny stock-pile of meds in case of emergency.
If your insurance will let you do a 90 day supply, this is often cheaper and you only have to reorder every 3 months. Sometimes when getting a 90 day supply, your insurance will make you do it by mail-order instead of a local pharmacy. If you want to try a 90 day supply, just ask your Dr. to write the prescription that way whenever you get a new prescription.
Here is a link to the pill crusher I love. It is pointy at the bottom which helps crush the pills more easily. I have about 5 of them, Several at home, one in her wheelchair bag, one at school, etc...
http://www.amazon.com/APEX-PILL-PULVERIZER-Size-1/dp/B000J14PR4/ref=sr_1_2?ie=UTF8&qid=1450109591&sr=8-2&keywords=apex+pill+crusher The other option is to get a mortar and pestle, I know several people who prefer this option.
Here is a link to a video I made. It is not the best, I was trying to film it myself. I would like to say I will redo it, but we all know how busy life is with a kiddo with complex medical needs. So let's just say, that is not going to happen!
How do you organize your meds? What tips and tricks can you share?
*I prefer pills over liquids, there are several reasons. #1) they are cheaper per mg #2) they are easier to find at pharmacies or over-the counter #3) If you need to grab a dose and bring it with you you can just grab a pill instead of having to bring the whole bottle of liquid med or drawing up the liquid med and risking it spilling #4) They don't have the sugar in them that liquids do #5) They don't have to be refrigerated #6) you can use syringes forever because you don't care if the numbers wear off the side
* I don't care if the numbers wear off the side for most of my syringes because I have chosen to crush my pills. But if you want your numbers to stay on longer, when you get new syringes, paint over the numbers with clear nail polish and allow to dry.
* Some people do not crush their pills. They draw water into a syringe, drop the pill into the water and let it sit and dissolve for about 12 hours (or more). Check with your pharmacist to make sure this will work with your meds, especially if they are time-released. I have never tried this method.
*Some people draw up a whole months worth of meds into syringes and label the syringes. I have never done this method.
#1) Label the top of each bottle with a round sticker like these. http://www.amazon.com/Round-Circle-Labels-Inkjet-Printers/dp/B00WMRH33Q/ref=sr_1_1?ie=UTF8&qid=1450110605&sr=8-1&keywords=3%2F4+inch+circle+labels The 3/4 inch ones fit on top of a medicine bottle perfectly. I would recommend NOT getting the removable ones, they fall off. I write three things on each sticker. The name of the med, the time it is given, how much to give (ie: 1/2 pill or if liquid 1 mL).
#2) Have a basket that all daily meds get thrown in to, I will call this the "Daily Med" basket. I used to try and line them up neatly in the basket, but it was a waste of time. If you follow my steps, it won't matter that they are a jumble. I set the liquid meds to the side of the basket because I don't want them to spill.
#3) Only keep 1 bottle of the med in this "Daily Med" basket. Have a different bin/box for what I call the "2nd tier" of meds. For example, you have 4 pills left in your bottle. That goes into the "Daily Med" basket. But you have already picked up your next bottle of the same med that you will start after you have given the 4 remaining pills. This new bottle will go into the box of "2nd Tier" meds.
#4) You will have a separate container of meds given occasionally. For example Ellie sometimes gets Ibuprofen, Acetaminophen, Miralax, etc...but they are not everyday. (I also have a 2nd tier box for nebulizer meds.)
#5) When it is time to give meds, pull out all of the medications. Look at the stickers on the lids and throw back any that are not given at this time. For example, if it is morning I throw back any that are only labeled PM. If they are labeled AM or is they are labeled AM/PM then I keep them out.
#6) Have a paper typed up that lists each med and the amount given. I don't really care about the actual dosage (ie: 8.8 mg per tablet) at this point, I just need to know how much to give her. If dosages change I just hand-write them onto my typed up sheet, then other people giving the meds will take notice of the changes (because of the handwriting). After awhile I will retype it. It might look something like this...
7 AM
Senna 1 pill
Calcium 1 pill
Multi-vitamin 1 pill
blah blah 10 mL
2:30 PM
Blah blah 2 pills
7 PM
blah blah 1 pill
blah blah 1/2 pill
blah blah 10 mL
#7) Go down the paper and line up each med as you read through the list. This verifies that you don't miss any, or give doubles. If they have a temporary med like an antibiotic, put a sticky note on this paper, then toss the sticky note when done with course. Speaking of antibiotics (or temporary meds) write with permanent marker the end date you will be giving the med on the actual bottle and on the sticky note.
#8) Start drawing up meds into syringes. As you toss a pill into the pill crusher, throw the medicine bottle back into the "Daily med" basket. This way, if you get distracted, you know which pills you have already done.
#9) Have some little drawers that hold your syringes and feeding tube extensions
#10) Have a bin to toss dirty syringes and feeding tube extensions into, then you only have to wash them once in a while and you can get it all done at once
#9) Have a set day that you order meds each week. Mine is Monday because if there are problems, I want a few days to figure it out before the weekend. Go down your typed up list check each bottle in your "daily med" basket. See if there is at least 8 or 9 days (because you will not be ordering for 7 more days and if you ordered it next Monday it may take 2 days or so to get a refill). If not, check your 2nd tier meds to see if you have another bottle. If you do not have 8-9 days of that med, jot it down and set that bottle aside. Once you have been through all of the meds and know what you need to order, go ahead and order. Usually there is an automated system you can call or text or do it online to reorder meds. If they give you any type of info about your reorder such as "This med will be ready today after 10 AM" or "We need to contact your Dr. for additional refills" jot that down on your paper.
You can usually get a refill at 24 -28 days after your last refill (depending on your insurance). I fill my meds as soon as they will let me, this lets me get a little tiny stock-pile of meds in case of emergency.
If your insurance will let you do a 90 day supply, this is often cheaper and you only have to reorder every 3 months. Sometimes when getting a 90 day supply, your insurance will make you do it by mail-order instead of a local pharmacy. If you want to try a 90 day supply, just ask your Dr. to write the prescription that way whenever you get a new prescription.
Here is a link to the pill crusher I love. It is pointy at the bottom which helps crush the pills more easily. I have about 5 of them, Several at home, one in her wheelchair bag, one at school, etc...
http://www.amazon.com/APEX-PILL-PULVERIZER-Size-1/dp/B000J14PR4/ref=sr_1_2?ie=UTF8&qid=1450109591&sr=8-2&keywords=apex+pill+crusher The other option is to get a mortar and pestle, I know several people who prefer this option.
Here is a link to a video I made. It is not the best, I was trying to film it myself. I would like to say I will redo it, but we all know how busy life is with a kiddo with complex medical needs. So let's just say, that is not going to happen!
How do you organize your meds? What tips and tricks can you share?
Friday, December 4, 2015
Shoes for kids with braces/DAFOS/AFOS
DAFO stands for Dynamic Ankle Foot Orthosis (or Orthotic). They are braces to help your child's feet grow properly or to keep them in proper alignment or to support them properly while walking. Because they are adding extra bulk to the foot, it is difficult to get shoes to fit over the top without looking like clown shoes.
Many people like converse or DC shoes (skater shoes) to fit over DAFOS.
New Balance has triple wide shoes.
Another suggestion is to cut the tongue down towards the toe so the shoes will open up more widely. You can also cut the tongue out completely.
You can also remove the insoles from inside the shoes to give you a bit more room.
You can look for wide shoes and buy them in a little larger size. Some people like Stride Rite.
It is a good idea to take your child's DAFO to the shoe stores (possibly even leave your children home) and slip the DAFO's into the shoes this way you are not trying a hundred shoes on the kids foot...the DAFO does the work for you.
They make special socks, but personally I just shop tall/crazy socks at the dollar store...I hardly ever pay more than $1 for a pair of socks for the DAFOS. If your child has problems with sweating you may want to look into knee high running socks that wick the moisture away (we do not have this problem so I don't have any advice).
Here are some other options...
Nike Flyease
https://store.nike.com/us/en_us/pw/flyease/pjp (Nike flyease have velcro and zippers to use with AFO's)
Hatchbacks Footwear
http://www.hatchbacksfootwear.com/
Keeping Pace
http://keepingpace.com/
Easy ups
https://www.easyup-shoes.com/
Pedors
http://www.pedors.com/ (very interesting slipper/stretchy type of slipper or hiking boot with a hard sole)
SoftStar shoes
http://www.softstarshoes.com/ (moccasin type shoes and soft soled shoes. You can even design your own)
Plae
https://www.plae.co/pages/adaptive-orthotics
Do you have any comments or tips on buying shoes to fit over DAFO'S? Please share below!
Many people like converse or DC shoes (skater shoes) to fit over DAFOS.
New Balance has triple wide shoes.
Another suggestion is to cut the tongue down towards the toe so the shoes will open up more widely. You can also cut the tongue out completely.
You can also remove the insoles from inside the shoes to give you a bit more room.
You can look for wide shoes and buy them in a little larger size. Some people like Stride Rite.
It is a good idea to take your child's DAFO to the shoe stores (possibly even leave your children home) and slip the DAFO's into the shoes this way you are not trying a hundred shoes on the kids foot...the DAFO does the work for you.
They make special socks, but personally I just shop tall/crazy socks at the dollar store...I hardly ever pay more than $1 for a pair of socks for the DAFOS. If your child has problems with sweating you may want to look into knee high running socks that wick the moisture away (we do not have this problem so I don't have any advice).
Here are some other options...
Nike Flyease
https://store.nike.com/us/en_us/pw/flyease/pjp (Nike flyease have velcro and zippers to use with AFO's)
Hatchbacks Footwear
http://www.hatchbacksfootwear.com/
Keeping Pace
http://keepingpace.com/
Easy ups
https://www.easyup-shoes.com/
Pedors
http://www.pedors.com/ (very interesting slipper/stretchy type of slipper or hiking boot with a hard sole)
SoftStar shoes
http://www.softstarshoes.com/ (moccasin type shoes and soft soled shoes. You can even design your own)
Plae
https://www.plae.co/pages/adaptive-orthotics
Do you have any comments or tips on buying shoes to fit over DAFO'S? Please share below!
Wednesday, October 28, 2015
Growth Hormones to keep child small
Giving your child meds or having surgery to keep them small, also known as growth attenuation.
This can be a controversial topic, please don't bash our decisions. We have always had our daughters best interests in mind throughout the process. So here goes.
I first heard about the concept of keeping a child smalI when I read about Ashley in Oregon also known as the "pillow angel". Her parents fought for and succeeded at having their daughter have a complete hysteroctomy and breast buds removed. There were several reasons for this: they wanted to keep her small to continue caring for her and she had an extensive family history of cancer along with other reasons. You can read more about Ashley here http://www.pillowangel.org/
I did not know what the options were in regards to keeping a child small, but I knew that it was going to get harder both for me and her in the future, so I decided to start meeting with Dr.'s. I met with a developmental pediatrician who referred me to a pediatric OB (obstestrician) who referred me to a pediatric endocrinologist. Ellie was about 7 and a half when we started meeting with these Dr.'s.
During these Dr. appointments I had only ever heard of Ashley having surgery to achieve the desired outcome, I did not know there were any other option, They warned me that these surgeries were controversial for a child and if we wanted surgery we would have to go before a hospital ethics committee to argue our case and prove why we wanted the procedure done. I think the main thing everyone was concerned about was the safety and well-being of our daughter. We were also told that insurance may not cover it and if they didn't approve the procedures we may have to travel out of state to have the surgeries done and pay out of pocket.
We were not sure we wanted to do the procedure, but we wanted to find out what our options were and what the repercussions were.
Endocrinology presented a different option. She said we could give her hormones. It was estrogen, basically a low dose birth control pill. By giving her hormones it tricks the body into thinking it is going through puberty. When you go through puberty your growth plates fuse and you don't get any larger. So to paraphrase, we would be sending her into puberty early so that her growth plates would fuse so that she wouldn't get any larger. Girls growth plates normally fuse around age 14. Boys are later than that.
We were told that she might develop breasts, but they would may be elongated instead of round and full. She had pubic hair since she was about 4 years old. (Kids with disabilities and on lots of meds often do).
With the estrogen she would also probably start having periods. She may be able to stop the estrogen after her growth plates were fused, but she might also need to continue it to keep her estrogen levels if she didn't start manufacturing estrogen on her own. We might also need to start her on another med, progesterone. You know how a month supply of birth control pills has 3 weeks of 1 color pill and 1 week of a different color? The 3 weeks is estrogen and the 1 week is progesterone. The progesterone is when you have your period. The endocrinologist said if she started spotting that we would need to start her on progesterone to make her have a period. It is dangerous for it to continue to build up without sloughing off occasionally.
With the estrogen there would not be any hospital ethics committee and no problems with insurance paying for it. The endocrinologist had only done this with 1 or 2 other people before. She said she really wasn't sure what the long-term medical/social/emotional effects of doing this were.
Because of all the media hype regarding Ashley the endocrinologist made it very clear from the start that this was controversial and if the press approached her she would tell them that it was COMPLETELY our choice as parents and she did not sway us one way or the other. She said this several times. She was willing to help us, but she it was not choosing it, we were as her parents.
We thought about it for about a year, and then decided that starting the estrogen was in the best interest of Ellie and our family. We wanted to go ahead with the estrogen only and not do any surgeries. We started it when she was about 9 and a half. It took a little over a year for her growth plates to fully fuse.
We personally decided against having any surgeries for several reasons: one of the results of having a hysterectomy is a lowered bone density (think about menopausal women). People who are immobile already have a lowered bone density and people who are on a lot of meds also have a lowered bone density. (I have a friend with a child with disabilities and the caregiver lifted their leg to change a diaper and their leg bone snapped in half.) We also didn't see the need to put her through a major surgery. Although we were not looking forward to her starting periods we came to the realization that she already wore diapers. It wasn't like we would need to be changing pads and tampons and having bloody underwear.
Before starting the estrogen her endocrinologist had us do a bone scan. It is 1 x-ray of her left hand laying flat. It allows the Dr. to get a starting point on how her growth plates look. She would order another bone scan (of her hand) about every 6 months to see how her growth plates were fusing.
The estrogen (estrace) is a once a day pill that we crush and give through her g-tube.
She did start a period, so we did start her on the progesterone (Provera). We started off giving it for 10 days once a month, then every other month, then every third month etc. Extended up to 5 or 6 months (no more than that). As long as she isn't spotting in between giving the provera we could continue to extend it.
Her breasts developed a little bit, but not a ton. Think...training bra.
The periods are really not that bad since she already wears a diaper. You are already taking care of every other bodily fluid, what's one more? It is uncomfortable for my hubby to change her diapers with her period. He will do it, but he doesn't like it. I (the mom) try to do most of the diaper changes when I am available because we feel like it is more appropriate (since she is a teenager), but he will do it when I can't.
Looking back...I personally think 45 pounds is when it starts getting harder to lift and care for your child. (This is not when we did the hormones). But if you are thinking about it, I would start talking to Dr.'s about 40 pounds or maybe age 7. I wish Ellie was a bit smaller that she is. She is 63 pounds.
I get the feeling that our endocrinologist wouldn't want to do it before age 7 or 8. Maybe a different endocrinologist would.
Some things to think about if you are considering starting estrogen for your child. There may be other things, but these are the things which happened with Ellie:
Reasons I think growth attenuation is controversial:
I personally think the surgery is controversial, but the estrogen is not. I may be wrong.
Reasons I think using hormones to fuse growth plates is a good idea (in no particular order)
1. The child is going to get bigger and you are going to get older and weaker
2. If you want to be able to take care of the child at home, without putting them in a facility
3. Putting the child in a facility would cost more money
4. To save your back from lifting/bathing
5. The child becomes less mobile as they get bigger. When Ellie was little I could move her from place to place and put her in different positions easily. As she got bigger I tend to reposition her and move her much less because it is difficult. Remaining in one position is not good medically or socially or emotionally for the child. It is bad for breathing, digestion, bones, muscles, skin (bed sores), etc.
If you are thinking about looking in to hormones to "stunt" growth, here are the steps I would take:
1. Meet with a pediatric endocrinologist
2. (Optional) Meet with a pediatric OB, just so you can know what all of your options are. If you know you don't want surgery, then I would skip this step.
3. Think about it, pray about it
4. Go for it...do the xray and start the med. For us at least, it has not been a big deal like I thought it would be.
One other thing I want to mention before I end...if your child has scoliosis and will need rods/spine fusion...this will also stop them from growing larger to some extent because the spine will be fused. Ellie actually had both the spine fusion/rods and the hormones. But it may have worked to only do the spine fusion. Who knows?
Let me know if you have any further questions. We see Mary Murray (in Utah) at Primary Children's Hospital in Pediatric Endocrinology for these issues.
This can be a controversial topic, please don't bash our decisions. We have always had our daughters best interests in mind throughout the process. So here goes.
I first heard about the concept of keeping a child smalI when I read about Ashley in Oregon also known as the "pillow angel". Her parents fought for and succeeded at having their daughter have a complete hysteroctomy and breast buds removed. There were several reasons for this: they wanted to keep her small to continue caring for her and she had an extensive family history of cancer along with other reasons. You can read more about Ashley here http://www.pillowangel.org/
I did not know what the options were in regards to keeping a child small, but I knew that it was going to get harder both for me and her in the future, so I decided to start meeting with Dr.'s. I met with a developmental pediatrician who referred me to a pediatric OB (obstestrician) who referred me to a pediatric endocrinologist. Ellie was about 7 and a half when we started meeting with these Dr.'s.
During these Dr. appointments I had only ever heard of Ashley having surgery to achieve the desired outcome, I did not know there were any other option, They warned me that these surgeries were controversial for a child and if we wanted surgery we would have to go before a hospital ethics committee to argue our case and prove why we wanted the procedure done. I think the main thing everyone was concerned about was the safety and well-being of our daughter. We were also told that insurance may not cover it and if they didn't approve the procedures we may have to travel out of state to have the surgeries done and pay out of pocket.
We were not sure we wanted to do the procedure, but we wanted to find out what our options were and what the repercussions were.
Endocrinology presented a different option. She said we could give her hormones. It was estrogen, basically a low dose birth control pill. By giving her hormones it tricks the body into thinking it is going through puberty. When you go through puberty your growth plates fuse and you don't get any larger. So to paraphrase, we would be sending her into puberty early so that her growth plates would fuse so that she wouldn't get any larger. Girls growth plates normally fuse around age 14. Boys are later than that.
We were told that she might develop breasts, but they would may be elongated instead of round and full. She had pubic hair since she was about 4 years old. (Kids with disabilities and on lots of meds often do).
With the estrogen she would also probably start having periods. She may be able to stop the estrogen after her growth plates were fused, but she might also need to continue it to keep her estrogen levels if she didn't start manufacturing estrogen on her own. We might also need to start her on another med, progesterone. You know how a month supply of birth control pills has 3 weeks of 1 color pill and 1 week of a different color? The 3 weeks is estrogen and the 1 week is progesterone. The progesterone is when you have your period. The endocrinologist said if she started spotting that we would need to start her on progesterone to make her have a period. It is dangerous for it to continue to build up without sloughing off occasionally.
With the estrogen there would not be any hospital ethics committee and no problems with insurance paying for it. The endocrinologist had only done this with 1 or 2 other people before. She said she really wasn't sure what the long-term medical/social/emotional effects of doing this were.
Because of all the media hype regarding Ashley the endocrinologist made it very clear from the start that this was controversial and if the press approached her she would tell them that it was COMPLETELY our choice as parents and she did not sway us one way or the other. She said this several times. She was willing to help us, but she it was not choosing it, we were as her parents.
We thought about it for about a year, and then decided that starting the estrogen was in the best interest of Ellie and our family. We wanted to go ahead with the estrogen only and not do any surgeries. We started it when she was about 9 and a half. It took a little over a year for her growth plates to fully fuse.
We personally decided against having any surgeries for several reasons: one of the results of having a hysterectomy is a lowered bone density (think about menopausal women). People who are immobile already have a lowered bone density and people who are on a lot of meds also have a lowered bone density. (I have a friend with a child with disabilities and the caregiver lifted their leg to change a diaper and their leg bone snapped in half.) We also didn't see the need to put her through a major surgery. Although we were not looking forward to her starting periods we came to the realization that she already wore diapers. It wasn't like we would need to be changing pads and tampons and having bloody underwear.
Before starting the estrogen her endocrinologist had us do a bone scan. It is 1 x-ray of her left hand laying flat. It allows the Dr. to get a starting point on how her growth plates look. She would order another bone scan (of her hand) about every 6 months to see how her growth plates were fusing.
The estrogen (estrace) is a once a day pill that we crush and give through her g-tube.
She did start a period, so we did start her on the progesterone (Provera). We started off giving it for 10 days once a month, then every other month, then every third month etc. Extended up to 5 or 6 months (no more than that). As long as she isn't spotting in between giving the provera we could continue to extend it.
Her breasts developed a little bit, but not a ton. Think...training bra.
The periods are really not that bad since she already wears a diaper. You are already taking care of every other bodily fluid, what's one more? It is uncomfortable for my hubby to change her diapers with her period. He will do it, but he doesn't like it. I (the mom) try to do most of the diaper changes when I am available because we feel like it is more appropriate (since she is a teenager), but he will do it when I can't.
Looking back...I personally think 45 pounds is when it starts getting harder to lift and care for your child. (This is not when we did the hormones). But if you are thinking about it, I would start talking to Dr.'s about 40 pounds or maybe age 7. I wish Ellie was a bit smaller that she is. She is 63 pounds.
I get the feeling that our endocrinologist wouldn't want to do it before age 7 or 8. Maybe a different endocrinologist would.
Some things to think about if you are considering starting estrogen for your child. There may be other things, but these are the things which happened with Ellie:
- They go through a growth spurt when you start the hormones (you are sending them in to puberty).
- They may start their period
- They may develop breasts after starting the hormones.
- During puberty (which is what you are sending them in to) seizures can get worse
- During puberty bone density can get worse
- During puberty contractures can get worse (when you have a growth spurt your bones can grow faster than your muscles can stretch and they get almost an instant contracture).
- During puberty scoliosis can get worse.
- Lungs and ribcage haven't grown to their adult size, possibly making breathing more difficult in the future
Reasons I think growth attenuation is controversial:
- "Elective" surgery on your child (if you chose to go the surgery route)
- People don't understand how difficult it is to lift and take care of a fully-dependant person
- It would be uncomfortable for people to see a small person...ie: a 20 year old the size of a 3 year old
- Lungs and ribcage etc haven't grown to their adult size, possibly making breathing more difficult in the future
- Media hype
- I am not sure?!?!?!?!
I personally think the surgery is controversial, but the estrogen is not. I may be wrong.
Reasons I think using hormones to fuse growth plates is a good idea (in no particular order)
1. The child is going to get bigger and you are going to get older and weaker
2. If you want to be able to take care of the child at home, without putting them in a facility
3. Putting the child in a facility would cost more money
4. To save your back from lifting/bathing
5. The child becomes less mobile as they get bigger. When Ellie was little I could move her from place to place and put her in different positions easily. As she got bigger I tend to reposition her and move her much less because it is difficult. Remaining in one position is not good medically or socially or emotionally for the child. It is bad for breathing, digestion, bones, muscles, skin (bed sores), etc.
If you are thinking about looking in to hormones to "stunt" growth, here are the steps I would take:
1. Meet with a pediatric endocrinologist
2. (Optional) Meet with a pediatric OB, just so you can know what all of your options are. If you know you don't want surgery, then I would skip this step.
3. Think about it, pray about it
4. Go for it...do the xray and start the med. For us at least, it has not been a big deal like I thought it would be.
One other thing I want to mention before I end...if your child has scoliosis and will need rods/spine fusion...this will also stop them from growing larger to some extent because the spine will be fused. Ellie actually had both the spine fusion/rods and the hormones. But it may have worked to only do the spine fusion. Who knows?
Let me know if you have any further questions. We see Mary Murray (in Utah) at Primary Children's Hospital in Pediatric Endocrinology for these issues.
Monday, October 26, 2015
Sharing instead of sheltering
This is an article written by a high school friend about his friend's older brother with Autism. It is beautiful.
http://oneshetwoshe.com/2015/10/change-of-heart.html
This is my response I sent to the author (my friend)...
Thank you Dan. You brought me to tears. It touched me particularly because of my daughter, Ellie, who has disabilities. I often feel so out of place and that people just don't understand what I am going through. So I tend to distance myself from people because I can't bear to be hurt by their unintentional words and actions.
Your writing helped me remember that by sharing instead of sheltering Ellie she (and I) can be an influence for good.
I am grateful to good men and women like you who are able to work through their awkwardness and see and purposefully interact with people with disabilities. This is how I always view the Savior. He would leave the 90 and 9 to search out the 1 with disabilities. I see this theme throughout the scriptures. He will be talking with a group of people and stop everything to go talk to or help a person with disabilities. This is a rare quality. The people that have forever found a place in my heart are those who will stop what they are doing mid-sentence and come to say hello to my non-verbal daughter. They get nothing out of it, but I do and Ellie does. They are true disciples of Christ.
Do you ever feel like you are sheltering your child instead of sharing them? Have you ever had someone step out of their way to come say hello to your child?
http://oneshetwoshe.com/2015/10/change-of-heart.html
This is my response I sent to the author (my friend)...
Thank you Dan. You brought me to tears. It touched me particularly because of my daughter, Ellie, who has disabilities. I often feel so out of place and that people just don't understand what I am going through. So I tend to distance myself from people because I can't bear to be hurt by their unintentional words and actions.
Your writing helped me remember that by sharing instead of sheltering Ellie she (and I) can be an influence for good.
I am grateful to good men and women like you who are able to work through their awkwardness and see and purposefully interact with people with disabilities. This is how I always view the Savior. He would leave the 90 and 9 to search out the 1 with disabilities. I see this theme throughout the scriptures. He will be talking with a group of people and stop everything to go talk to or help a person with disabilities. This is a rare quality. The people that have forever found a place in my heart are those who will stop what they are doing mid-sentence and come to say hello to my non-verbal daughter. They get nothing out of it, but I do and Ellie does. They are true disciples of Christ.
Do you ever feel like you are sheltering your child instead of sharing them? Have you ever had someone step out of their way to come say hello to your child?
Tuesday, September 8, 2015
Medicaid will pay for diapers AKA what to do when your child outgrows size 6 diapers
I live in Utah, so I don't know how it works other places...but here is the low down in Utah.
Typically Regular (Private) insurance will not pay for diapers/pull ups/briefs/etc... You can always call your insurance and ask if it is a covered item on your plan.
However, Medicaid will pay for diapers/pull ups/briefs/etc...
So if you have Medicaid, here are the steps you need to take to get diapers for your child...
#1) The child needs to be over 3 years old
#2) Call Medicaid and ask which homecare companies they will pay for.
#3) Call the homecare company and ask for their fax number for incontinence supplies
#3) Call the homecare company and ask for their fax number for incontinence supplies
#4) Ask your child's pediatrician/family Dr. for a prescription. This can be as a letter, or on a prescription paper. Make sure they include the following...(you can even write suggestions down for the Dr. and they will copy it over onto their own letter/prescription).
A) a diagnosis
B) their birthdate
B) their birthdate
C) a reason for needing the diapers (ie: due to Joey's Cerebral Palsy he will have ongoing incontinence that will require the use of diapers).
D) If you want/need a certain type or brand of diaper/pull up/brief have them include that also. For example if you want Pampers size 7, have the Dr. write that. If you need pull-ups, have the Dr. write that. If you don't know...then ignore this suggestion.
#5) Ask the Dr. to fax the prescription or letter to the homecare company and provide the Dr. with the fax number. Alternatively you can fax it/mail it yourself...but why not put the Dr. and the nurses to work?
#6) If the Dr. did not fax it while you were there, then ask them to contact you when it has been done.
#7) Measure your child's waist, homecare will want to know when you call them
#8) Once you know the prescription has been faxed to the homecare company, call the homecare company to ask if they have received it. If you have already received homecare supplies or DME from them before, they will have most of your information, if not, they will need additional information from you.
#9) If you don't know know what size/type you want, sometimes the homecare company can send you out samples for you to try. It can't hurt to ask.
Medicaid will only pay for 156 diapers (or pullups or briefs) per month. However, if you are on a medicaid waiver (such as DSPD, Travis C, Medically Complex Waiver) you can get double the amount of diapers (312) per month. Chux are counted into the total the same as a diaper.
Additional things to ask for...Medicaid will also pay for Chux (the disposable bed liners) which are great for changing diapers on and protecting bedding. The Dr. can write for them on the same prescription that he wrote for the diapers/pullups and you also get these from homecare.
So your options when your child outgrows size six diapers are as follows...
Pampers has a size 7
Pullups and overnights come in slightly larger sizes
Move up to adult diapers (called briefs). They are not as good as the commercial diapers you are used to. But you will adapt eventually.
Different homecare companies carry different brands of briefs, so if you hate 1 brand, you could theoretically switch. You can also ask homecare if they carry anything else you could try.
I like IHC homecare. Here is the way you order, you call in your order every month (you just have to say" I need a shipment of briefs") and they ship them to you out of Denver. They arrive 1-2 days later...super fast.
The brand we like is called Prevail, they are not as good as Huggies or Pampers, but they are pretty good.
If you do not have medicaid and your child still needs diapers, more than likely you qualify for the medically complex waiver and need to apply immediately.
#5) Ask the Dr. to fax the prescription or letter to the homecare company and provide the Dr. with the fax number. Alternatively you can fax it/mail it yourself...but why not put the Dr. and the nurses to work?
#6) If the Dr. did not fax it while you were there, then ask them to contact you when it has been done.
#7) Measure your child's waist, homecare will want to know when you call them
#8) Once you know the prescription has been faxed to the homecare company, call the homecare company to ask if they have received it. If you have already received homecare supplies or DME from them before, they will have most of your information, if not, they will need additional information from you.
#9) If you don't know know what size/type you want, sometimes the homecare company can send you out samples for you to try. It can't hurt to ask.
Medicaid will only pay for 156 diapers (or pullups or briefs) per month. However, if you are on a medicaid waiver (such as DSPD, Travis C, Medically Complex Waiver) you can get double the amount of diapers (312) per month. Chux are counted into the total the same as a diaper.
Additional things to ask for...Medicaid will also pay for Chux (the disposable bed liners) which are great for changing diapers on and protecting bedding. The Dr. can write for them on the same prescription that he wrote for the diapers/pullups and you also get these from homecare.
So your options when your child outgrows size six diapers are as follows...
Pampers has a size 7
Pullups and overnights come in slightly larger sizes
Move up to adult diapers (called briefs). They are not as good as the commercial diapers you are used to. But you will adapt eventually.
Different homecare companies carry different brands of briefs, so if you hate 1 brand, you could theoretically switch. You can also ask homecare if they carry anything else you could try.
I like IHC homecare. Here is the way you order, you call in your order every month (you just have to say" I need a shipment of briefs") and they ship them to you out of Denver. They arrive 1-2 days later...super fast.
The brand we like is called Prevail, they are not as good as Huggies or Pampers, but they are pretty good.
If you do not have medicaid and your child still needs diapers, more than likely you qualify for the medically complex waiver and need to apply immediately.
What to do if your syringes are stuck/hard to push
Have you ever had a syringe (particularly a large one like a 60 mL/2 oz.) that is stuck or really hard to push/pull. Mine get more difficult in the winter months, I am guessing because the air is even drier than normal.
I learned a little trick from a home health nurse many years ago.
Just put a little "Lube" (KY Jelly) on the black plunger, and will will slip and slide like...well...like a slip in slide.
Wah-lah...The KY is safe and will not harm your little one as far as I know.
Friday, August 21, 2015
Sleep Safe Bed
Several years ago we asked for and received a "sleep safe bed" from insurance. We have both private insurance and Medicaid (for Ellie only). These are beds that you can raise the height overall, raise the head or feet or both, and have safety rails on the sides to keep the children from rolling out of bed.
This allows us to care for her more easily. With the raised height we can lift her into and out of bed without bending over. We can get her dressed and change her briefs more easily. With capability to raise the head and feet we can position her more comfortably and change her position easily to prevent bedsores. We can raise the head of her bed to facilitate cathing her and improve reflux. The side rails keep her in bed in case of seizures. We really love having her Sleep Safe Bed.
There are 2 main Safety Beds that I know of, Beds by George and Sleep Safe.
I truly just took what my homecare company recommended and didn't research safety beds before asking insurance. I didn't really know I had options.
I do love Ellie's Sleep Safe, but there are things I would change about it. I haven't looked into Beds by George a ton, but some of the things I don't like about the sleep safe, I know that Beds by George has solved those problems. So, if I was going to do it again, I would look at them both and depending on what I found, I might choose Beds by George. I can't say for certain because I haven't done the research. But I will spell out for you the things I DON'T like about her Sleep Safe.
The Sleep Safe (at least the one we got) is veneer, not real wood. It scratches and you would never be able to refinish it. It is difficult to scratch, but I love real wood and dislike veneers for all furniture in general. Beds by George do not use any veneer, there are all real solid wood.
The height of the bed even at it's lowest and even with the side rail down is difficult for me (the Mom) to climb into. It is also difficult for siblings to climb in to. I like my kids to snuggle into bed with her just to snuggle, or watch the ipad, or read. It is good for both of them. I like to lay down by her too. I am 5'5"...I can do it, but it is hard.
With her sleep safe bed, it takes 2 hands to lower the side rails because there are 2 latches (one on each side). I supposed you could do it with one hand, but it would be a multi-step process. Beds by George are a one handed latch to lower the side rails.
Our Sleep Safe is hydrolic (Electric). I like having it electric because I can start cathing her and then with 1 hand I reach for the remote and raise the head of her bed to get more pee out. But there are problems with it being electric. If the power goes out I have NO way to change the height or position. There should be a manual override for emergencies, but there is not.
Because it is hydrolic there is a large column under the bed that sits directly on the ground. So although there are wheels it is virtually impossible to move the bed from place to place easily.
Being hydrolic also makes it VERY heavy.
Sleep safe does make a manual only bed (no electricity at all), but I'm not sure I would choose that either.
The latches for the side rails on the sleep safe bed pop out easily and scratch the bedposts when the rails oare lowered. It is not a safety issue, they don't pop out while the side rails are up...but when you lower them down if you have not carefully secured them, they will easily scratch the bed. I did it on the first day we got the bed...it made me sad and mad.
They should have people that know how to disassemble and assemble them. Homecare will come set it up for you the first time. But after that if you move rooms or houses, you are on your own...and it is tricky!
Once again, I love the sleep safe bed, but there are things I would change.
Here are the steps to getting a safety bed:
#1) Research beds a bit and decide which things are important in a bed
#2) Make a list of reasons your child needs a safety bed. Make sure to include safety issues such as: my child has seizures and could fall out of bed at night.
#3) Call your insurance to see which homecare (durable medical equipment suppliers) companies are approved by them. (Optional) If desired, you can also ask if they approve safety beds, and what their requirements are. (Are they certain diagnosis, etc...?)
#4) Call the approved homecare company and make an appointment. Tell them what you are trying to get. Often it will be the same company you get your child's wheelchair from. (Here in Utah I use IHC Wheelchair shop in SLC and love them!)
#5) Ask the homecare company for their fax number
#6) You will need a prescription or letter written by your pediatrician or other Dr. It will need a diagnosis on it.
#7) Give the Dr. the fax number for the homecare company and have him fax his letter. Ask him to call you when he has completed the letter and fax. Follow up with Dr. if they don't call you within a reasonable amount of time.
#8) (optional) Once the Dr. calls you to tell you it's done, call homecare to make sure they got the faxed prescription.
#9) Go to the homecare appointment, bring your lists of reasons you need a bed with you and which things are important in a bed.
#10) Homecare will write a letter to insurance. Here is a sample letter. http://sleepsafebed.com/about-insurance/sample-letters/
and
http://bedsbygeorge.com/safety/insurance/sample_letters.php
#11) Homecare will order the bed
#12) Homecare will call you when they have heard from insurance. If you don't hear from them within a reasonable amount of time, call them to follow up.
#13) If you are denied, appeal. Go through all the levels of appeal. ALWAYS APPEAL!!! Sometimes they just deny everything on the first try to see who is really serious about wanting the item. You can have additional Dr.'s write notes, get hospital records/Dr. records, etc if desired (not required...but possible).
How did it work? Did you follow the steps above and get a bed? Which safety bed does your child use? How do you like it? What do you or don't you like about it? Did you have a good experience with a particular homecare company ordering a bed? Please comment below.
This allows us to care for her more easily. With the raised height we can lift her into and out of bed without bending over. We can get her dressed and change her briefs more easily. With capability to raise the head and feet we can position her more comfortably and change her position easily to prevent bedsores. We can raise the head of her bed to facilitate cathing her and improve reflux. The side rails keep her in bed in case of seizures. We really love having her Sleep Safe Bed.
There are 2 main Safety Beds that I know of, Beds by George and Sleep Safe.
I truly just took what my homecare company recommended and didn't research safety beds before asking insurance. I didn't really know I had options.
I do love Ellie's Sleep Safe, but there are things I would change about it. I haven't looked into Beds by George a ton, but some of the things I don't like about the sleep safe, I know that Beds by George has solved those problems. So, if I was going to do it again, I would look at them both and depending on what I found, I might choose Beds by George. I can't say for certain because I haven't done the research. But I will spell out for you the things I DON'T like about her Sleep Safe.
The Sleep Safe (at least the one we got) is veneer, not real wood. It scratches and you would never be able to refinish it. It is difficult to scratch, but I love real wood and dislike veneers for all furniture in general. Beds by George do not use any veneer, there are all real solid wood.
The height of the bed even at it's lowest and even with the side rail down is difficult for me (the Mom) to climb into. It is also difficult for siblings to climb in to. I like my kids to snuggle into bed with her just to snuggle, or watch the ipad, or read. It is good for both of them. I like to lay down by her too. I am 5'5"...I can do it, but it is hard.
With her sleep safe bed, it takes 2 hands to lower the side rails because there are 2 latches (one on each side). I supposed you could do it with one hand, but it would be a multi-step process. Beds by George are a one handed latch to lower the side rails.
Our Sleep Safe is hydrolic (Electric). I like having it electric because I can start cathing her and then with 1 hand I reach for the remote and raise the head of her bed to get more pee out. But there are problems with it being electric. If the power goes out I have NO way to change the height or position. There should be a manual override for emergencies, but there is not.
Because it is hydrolic there is a large column under the bed that sits directly on the ground. So although there are wheels it is virtually impossible to move the bed from place to place easily.
Being hydrolic also makes it VERY heavy.
Sleep safe does make a manual only bed (no electricity at all), but I'm not sure I would choose that either.
The latches for the side rails on the sleep safe bed pop out easily and scratch the bedposts when the rails oare lowered. It is not a safety issue, they don't pop out while the side rails are up...but when you lower them down if you have not carefully secured them, they will easily scratch the bed. I did it on the first day we got the bed...it made me sad and mad.
They should have people that know how to disassemble and assemble them. Homecare will come set it up for you the first time. But after that if you move rooms or houses, you are on your own...and it is tricky!
Once again, I love the sleep safe bed, but there are things I would change.
Here are the steps to getting a safety bed:
#1) Research beds a bit and decide which things are important in a bed
#2) Make a list of reasons your child needs a safety bed. Make sure to include safety issues such as: my child has seizures and could fall out of bed at night.
#3) Call your insurance to see which homecare (durable medical equipment suppliers) companies are approved by them. (Optional) If desired, you can also ask if they approve safety beds, and what their requirements are. (Are they certain diagnosis, etc...?)
#4) Call the approved homecare company and make an appointment. Tell them what you are trying to get. Often it will be the same company you get your child's wheelchair from. (Here in Utah I use IHC Wheelchair shop in SLC and love them!)
#5) Ask the homecare company for their fax number
#6) You will need a prescription or letter written by your pediatrician or other Dr. It will need a diagnosis on it.
#7) Give the Dr. the fax number for the homecare company and have him fax his letter. Ask him to call you when he has completed the letter and fax. Follow up with Dr. if they don't call you within a reasonable amount of time.
#8) (optional) Once the Dr. calls you to tell you it's done, call homecare to make sure they got the faxed prescription.
#9) Go to the homecare appointment, bring your lists of reasons you need a bed with you and which things are important in a bed.
#10) Homecare will write a letter to insurance. Here is a sample letter. http://sleepsafebed.com/about-insurance/sample-letters/
and
http://bedsbygeorge.com/safety/insurance/sample_letters.php
#11) Homecare will order the bed
#12) Homecare will call you when they have heard from insurance. If you don't hear from them within a reasonable amount of time, call them to follow up.
#13) If you are denied, appeal. Go through all the levels of appeal. ALWAYS APPEAL!!! Sometimes they just deny everything on the first try to see who is really serious about wanting the item. You can have additional Dr.'s write notes, get hospital records/Dr. records, etc if desired (not required...but possible).
How did it work? Did you follow the steps above and get a bed? Which safety bed does your child use? How do you like it? What do you or don't you like about it? Did you have a good experience with a particular homecare company ordering a bed? Please comment below.
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