Taking a break

I am having to take a break from my blog. My family needs more of me right now and this is something that I like to do, but can easily step away from for a while.

The Birthday Party

Prior to having kids, Rawlo and I decided that some events were worth celebrating and making a big deal about. Birthdays are definitely something that we celebrate big in our house. Family parties are great, but we get others involved. With PA, you don't know how many birthdays there will be, so make the most of the ones Talli has.

Talli wanted a Frankenstein cake, it seemed beyond me, so I asked a friend to make it for her.







She was dying for a Chuck E Cheese party, so we gave in on that one. I had previously provided games or crafts for the kids to do with goodie bags to boot and Chuck E Cheese ended up being cheaper than last year's crafting party.













There was one girl who did not come because she is afraid of Chuck E. That isn't a problem with my kids who think that Chuck E is real, sleeps in the back room, and sneaks cheese from the kitchen. My kids are character groupies! The staff at our restaurant know Talli well and when there is no one there, Chuck E will play games with Talli and give her tokens as well. I know some are grossed out by places like Chuck E Cheese, but ours is very clean. We tend to go first thing in the morning when no one else is there and the staff is disinfecting the games and play equipment.

Wasteful Wednesday- bills and bills

I received another billing statement from the genetics labs for amino acids. They listed our insurance and Talli's Medicaid on the statement AND we were just in clinic, so I know they have the information. So I called. This was a brief call only lasting 5 minutes. It could have been longer as they have a voice prompt system and I rarely can get my kids to be quiet during business hours to not be picked up, but they were quiet.

The billing person took a while to find the claim I was calling about. She said it was billed to Medicaid the same day the statement was sent out. So, I guess this is why I get a bill every month-- they are billing me at the same time they are billing Medicaid. It seems as though their time would be saved as well as mine if they waited even 10 days to send these out. However, I am guessing some percentage of people will pay the claim because they got a bill with statements implying that action would be taken if you do not pay within 30 days of the claim.

Happy Birthday Talli

Happy Birthday to Talli!!

10 years ago Talli was born. Happy Birthday to you!

We finally meet.

Applied Nutrition has a birthday club. Talli got a $5 off her next order of $25 or more coupon with her birthday card from Maddy’s. We have already used it, since she has been eating 1-1.5 Energy Option Candy bars per day.

Applied Nutrition also has a new low protein cookbook available. Homestyle Cooking: Recipes the Whole Family Will Enjoy is available for FREE thru 12/31/2011 with promotional code COOKBOOK11. I have not tried the cookbook, but will be soon.

Wasteful Wednesday- she is not smelly

This post is on another DME shipping mistake, which happened a few years ago. Propimex-2 is the formula that Talli uses to provide her with essential protein without the offending amino acids (the ones she can't break down). We get 9 cans each month and they take up a bit of space in the shipping boxes.

I opened a large box, although not large enough to contain the formula and other loose supplies, and there was no Propimex-2, just 9 sticks of deodorant. The DME provider asked that we ship those back to them, they must have been costly generic deodorant.

I do wonder what insurance plan is covering deodorant for their subscribers.

Talli may smell like a fish (a common side-effect of taking non-IV Carnitine), occasionally ketones, and sometimes the unique smell of PA, but at age 5, she definitely didn't need deodorant.

School staffing meetings

The staff at Talli's school has a meeting each week to discuss how things are going with her, any problems, and any coordination that needs to happen. The meeting lasts 30-60 minutes and is lead by the Resource teacher. Here are those typically in attendance:

Resource Teacher

Classroom Teacher

School Nurse

1:1 Nurse

Speech Therapist

Occupational Therapist

School Social Worker

Sometimes the principal or district staff will attend as well.

If there is a major concern they ask me to come and meet with them, although I am welcome to come anytime. This afternoon is the meeting and I have been asked to come. There is no issues on their end. This does give me a chance to ask any questions that I have.

There are only 3 things that are pressing on me to discuss.

1. On a geography test on the continents and oceans, Talli got all of the continents correct, but didn't put anything down for the oceans. Did she run out of time? Did she get frustrated and give up?

2. Talli has been coming home with flashcards with her spelling words for the week, which is really helpful. This week she came home with ones she made herself. The problem is that her handwriting is so poor (hence, the reason she sees the OT) that in looking at them she couldn't tell whether a letter was a 'c' or an 'l'.

3. I feel like Talli is being asked to be more independent before she has the skills to do something herself. Currently, she has a fairly nasty yeast infection and having a wet bottom is contributing (she hasn't been on any antibiotics for a while). She usually is in a rush to goto the bathroom because she doesn't want to miss whatever is going on and she will either forget to wipe or she will get her pants wet in the process.

Wasteful Wednesday- another DME delivery mistake

The title of the post isn't very good because our DME provider very rarely gets Talli's order accurate.

We get 2 cases of Polycose each month, which is 12 cans. Polycose is pure glucose-- we go straight for the blood sugar rise! It contains no protein whatsoever and is a main component of Talli's formula. In the past, when she has been sick we can use more than a can a day.

So not too long ago, Steve, dropped off our supplies and the boxes looked a little odd (again, not unusual). Instead of polycose, we received 2 cases of Ketocal. Ketocal is a high fat, high protein formula for the use in those with uncontrolled seizures.

IF we were to mistakenly use Ketocal for Polycose Talli would be getting 22.5g of protein, 108g of fat, and 1080 Kcals instead of 0g of protein, 0g of fat, and 465Kcals. I am sure that Talli would have been vomiting long before we could have given her that much fat and protein.

The DME provider had the formula picked up and shipped out the polycose after I called them. Mistakes like this makes me nervous for those who aren't hypervigilant and those who do not question a problem. It also makes we ponder the literacy rate in this country and liability issues.

But Talli is safe from the inappropriate formula.

The next DME mix up to report on-- "No, she doesn't smell like that!"

Steve, making my life easier

There are some things that I do to make my life easier in handling the chaos that is my life. I try to have items delivered to my home instead of going out and purchasing them at a brick and mortar store. It is very painful for me to take all three of my kids with me shopping. Talli will start straightening products on the shelves at the store, there will be a lot of negotiating at the grocery store on purchasing foods not on the list, and I am just far out numbered. O is in the midst of the terrible 2's and instead of screaming he will show off his verbal skills by calling me names and if that doesn't get to me sufficiently he will just start pinching my hands that are being used to push the cart.

So if there is a free shipping offer somewhere or I can use Amazon Prime, then my life is just so much easier.

My kids think that if they want a toy that Steve, the guy in the brown truck, will bring it to them. They say it like he is Santa.

Talli thinks that all things can be acquired on amazon.com or ebay; she did hit the nail on the head on that one.

Here is a picture of what Steve brought us today with the exception of my husband's birthday present that I have already hidden away.

There is-
- Talli's monthly enteral supplies (I have not yet checked it for accuracy, but the volume is not quite right, so I am guessing that at least one case of formula is missing)
- hand soap (we go through it like water, especially when O tries to drink it)
-the expansion pack for The Settlers of Catan (for an adult game party tomorrow).

This week I have also had brought to my door:
- a pair of discontinued Saucony running shoes from Shoes.com
- socks for M, just to use a discount at Shoes.com
- a 1987 dinosaur costume sewing pattern on ebay (there was some competitive bidding on this!)
- a case of latex-free Coban from 3M for wrapping Talli's extension with
- a case of pop-up books I got off Totsy.com (they are elaborate and NOT for little kids)
- Dracula: A Classic Pop-Up Tale from Amazon.com, as it was cheaper than Totsy
-LeapPad Leap book the Lost Dinosaur from Amazon.com

Wasteful Wednesday- FINAL DEMAND

I was planning on writing today about the 3 appointments scheduled back to back on Monday (the doctor's office scheduled testing and then to see the doctor right afterwards) that lasted almost 4 hours instead of the planned 90 minutes. However, when I got home today from two more back to back appointments for Talli I saw a letter in the mail from the hospital. A couple of weeks ago I wrote about the ongoing saga of the hospital billing department.

Today, the letter stated it was a "FINAL DEMAND" (caps and bold are theirs) on a bill for 3/11/2011. "We have been unsuccessful in our attempts to reach you and discuss your balance." Hmmm, the letter is dated 9/6/2011 and the only time I have gone without a working cell phone (my home phone rings to my cell phone) is the past 2 hours when I somehow lost the back of the phone and the battery and September 7th when I my cell phone fell out of my pocket and into the toilet, however, my voicemail is working just fine.

It goes on to say how they are sending me to collection if the balance of $3,806.25 is not paid within 10 days. Wow! Isn't that two days from now!

So much for the head of billing who is actually a hospital employee rather than a contractor fixing everything for me.

I will be calling the patient advocate office again.

I sometimes wonder when I get to parent vs. running around in circles.

Wasteful Wednesday- Food (a day late)

Sorry, I am a day late on this one.

One of the big parts of PA is the lack of interest in food and for us food jags.

Talli will go for weeks with only eating a few bites of food a day. She does always have a lunch packed for school and there is at least one dish she can have at dinner with the family. A couple of times a month, she will also choose what we are eating as a family. However, she will have food jags that are more like binges and want to eat a particular food.

It could be a whole box of Betty Crocker Fruit Snacks in one day (.8g protein and 800 kcals). That is easy to accommodate, since I can just run to the store and if she loses interest I can give them to the boys as a treat. When it is specialty low-protein foods; it can get expensive and a lot of food can be tossed if I overestimate the length of the food jag.

She has had food jags with Ener-g pretzels (~ $2.00 for a 2.65oz bag or about 8 times the cost of Rold Gold pretzels) and I overbought, several bags went bad. Also, with Energy Options candy bars where she was eating more than a bar per day ($2.94 for a 50g bar, the size of a Hershey bar) I ordered enough for 2 weeks and reorganized the pantry and misplaced them, although, it didn’t matter because she stopped eating them. I don’t think the Energy Options bars will be tossed in the future as my boys think they are great treats when they snatch some (blehhhhh!!).

It would be nice to have a local network of families to buy or swap with. OR IF food was covered we could go "shopping" at clinic and take what we need instead of trying to plan ahead and wait for it to ship. I guess insurance would need to recognize that medical foods are just as needed as formulas-- oh, wait! some don't even see the need for formula.

Wasteful Wednesday- AAAAAAHHHH! My credit report

Talli goes to the hospital every 4 weeks for IVIG. IVIG is extremely expensive, around $3,500 for one dose for a 71lb child. That price is not for the room, other medications she takes, nor labs. She has been getting it since 2005 and the number of hospitalizations for illness has significantly dropped.

Over a year ago, the hospital she goes to outsourced their billing. Now, at least once a month we get a statement saying we owe between $4,000 and $24,000. We call them and they usually say that they do not have her Medicaid information. This is pretty annoying because I verify when she registers each month that they have the information and they do.

Well, last month, we got another statement. This one indicated that we need to pay approximately $24,000. Rawlo called them with the Medicaid information on July 26^th. While we were on vacation July 30-August 14 I kept getting calls from an 800 number, but it would hang up prior leaving a message. While we were sitting in the car August 4th, I called the number, and it was the hospital billing department. Remember, this is the outsourced company. I spent about 15 minutes on the phone with Allysa. She said we needed to pay the entire amount or be sent to collections. She said that the immunologist’s office had an internal form called “IVIG” that needed to be filled out each month in order for the hospital to bill the insurance company. She said she would put the account on hold for 14 days and then it would be sent to collections.

I mentioned this to Rawlo and he freaked out a little bit about our credit rating and the problem going to collections causes. He didn’t realize that “being sent to collections” threat is told to me about every other month from billing departments (If you have Medicaid and they are a Medicaid provider they cannot bill you nor send you to collections.) So I called again and got Warren. Warren indicated that Talli had 9 different billing accounts and that the Medicaid information was not listed on all of them, he said he would take care of it.

The day after we got home, I stopped into the doctor’s office and verified that they did not need a form filled out. Ya, there is no form.

After we were home, we got 2 letters from the hospital indicating that we needed to pay $4,000+ and $12,000+. There was no person listed on the letter, date of service, nor services received on the letter. It was dated August 18^th. I also received a letter from Blue Cross to send them information on our other health insurance policy, so that they can coordinate benefits. This is usually sent out when a provider sends in billing information and indicates that the patient has another insurance plan. This is needed when a person has two insurance plans, typically when both parents have policies that cover their children, so the insurance companies can decide who pays for what. Care coordination is not needed when the second insurance is Medicaid. Medicaid is a payer of last resort, meaning they pay out benefits after insurance and any other funds are applied to the bill. As a result of this, insurance companies do not consider Medicaid another insurance policy.

I called and spoke to Warren again. He indicated that Talli’s account was under review, so no letters should have been sent out to us. He also said that the $4,000+ bill was for me, but the balance was only $356.26. I told him that I had sent in a payment for $356.26. He checked and they had received my check, but applied it to Talli’s account. I told him to correct that part and he said he would. He said that the rest of the balance was waiting on me filling out the Care Coordination form. I got the dates of service for the $12,000+ bill and he gave me a list. I looked through our EOBs and our insurance had paid on all but 1 of the dates of service. I spent 45 minutes on the phone with Warren.

Then I called Blue Cross and straightened things out about the care coordination. The rep also said that they would not be paying for IVIG until Talli went off of it for 12 months and it was reviewed again. That is not going to happen. She indicated she would send a letter to the hospital listing the payments they had sent and copies of the checks that the hospital had electronically deposited. I spent 35 minutes on the phone with her.

I was pretty miffed after all of these calls because it was a pain. I was planning on running and missed my run because I was on the phone.

So….. I called the hospital patient advocate and gave her a 5 minute rendition of what was going on. She said that she was hearing this a lot since the billing was outsourced and would talk to the head of the department. The next morning, I got a call from the Billing Department head, she said that the insurance was waiting on medical information from Talli’s doctor before they would pay out on the IVIG. I told her that it was the first I was hearing about that and that I had spoken with Blue Cross the day before and they indicated they were not going to pay until Talli took a break from IVIG. She said she would take care of the calls and bills.

It has been a week now and no one has called or sent me any nasty grams in the mail. I spent at least 2 hours on the phone trying to straighten this all out and more time shifting through EOBs. Like most other metabolic mamas we have inches of paper that makes up the EOB stack for this calendar year and finding anything is a pain. I did discover that the hospital billed Blue Cross twice for the same hospital stay in April and Blue Cross paid them twice, differing amounts each time. So of course the irony that is my life, the hospital sends me a bill when they have already been paid twice.

When I have a spare minute I will let Blue Cross know.

Wasteful Wednesday- pump bags or basins

This is my first post for Wasteful Wednesday, posts to highlight how with a child with a metabolic disorder so much of my time, money, and patience are "wasted" on the silliest of things. Also, the insurance company and the government spend a lot of their money (which then translates to the rest of us) on the mistakes and bad policies.

We get our supplies from a very large national supply company. We are pretty stuck with them because we can't get an Infinity pump and Propimex from other suppliers. We regularly get the wrong order. Last month, I placed our usual order, Polycose usually ships in its own case as does the feeding pump bags, and the rest of the supplies are put into larger shipping boxes. After Steve, our UPS guy, left, I realized that one box was not the regular size and shape of what we regularly receive and my pump bags were missing. When I checked the label, I saw that it was a case of 50 of those pink hospital basins, you know the ones you use for sponge baths and puke buckets. The supply company didn't want them back because it wasn't cost effective to return them.

So, if anyone needs 50 pink basins they are at Goodwill.

It does baffle me how a case of Zevex Infinity pump bags could be confused with a case of basins.

IEPs

Today we had an IEP meeting for Talli. In the end, we got pretty much what we wanted. There is new administrative staff at the school this year and the special ed and health staff from the district has changed. For things that we previously had push back on, some staff were asking for. One thing in particular, is that in the Health Plan within the IEP there will be a listing of the knowledge/skills that a staff member and her nurse need to have prior to being responsible for.

Typically, Talli's IEP is in May right at the end of the school year. We had this one today because we filed a complaint with the State Board of Education, this is different from Due Process in that the State can rule and have things changed without a hearing. It is also quick, they rule within 60 days of the complaint. In May 2010, the school did not give us 10 days notice for the IEP meeting. They also removed the Health Plan from the IEP and months later said it was a 504 plan. They also removed nursing as a support service in her IEP, so no nursing minutes were listed, only consult minutes from the school nurse. The State Board ruled that they had violated our rights (really Talli's) and that since she has an IEP because of the result of her medical conditions, the health plan and the nursing minutes need to be included as part of the IEP. So they had 6 weeks to get to the state 1. a meeting notice that was appropriate and 2. an IEP with the Health Plan included and the nursing minutes stated. Since neither of those things occurred in May 2011 when we met, they needed to hold a new meeting.

Tomorrow, I am going to start a line of posts called "Wasteful Wednesday". It will list the occurrences that happen that waste resources- it could be our time, money, or other people's money. Most are so frustrating, they are comical.

Our version of Home schooling

Although, Talli does go to ESY I supplement a hodge-podge of different bits and pieces that I have pulled from several places. All combined, we spend no more than an hour on "homework", excluding reading.


Handwriting
Spelling
Math
Geography
Reading
Science


Handwriting- A former OT of Talli's introduced us to Handwriting with Tears. Talli's writing is horrible, although, it has much improved. Occassionally, she reverses her letters, the letters are large, and she has difficulty with spacing. This summer we will work in the Printing Power book, each day she writes in 1-2 pages. On some days, she will write on the lined paper spelling words or items she has composed.


Spelling- We have added spelling goals to her IEP. Each year, there is a list of words that the kids are expected to know, many of the words are repeated to keep them fresh. There are about 100 "no excuse" words for the 3rd and 100 for the 4th grade. Her goal is to have a certain proficiency for both lists.


I make flash cards to help her practice the words. She has a very good long term memory, so once we can get the words in there, she tends to keep them. Since laminating can get expensive and I hate working with the home laminator I purchased a few years ago I do a quick and cheap version- trim them up and tape them to index cards with clear packing tape.

Since the tape doesn't cover the entire card, I have writing space on the back to make notes. I run through the words to make sure she can first read them. There were only 2 words in the 3rd grade list she couldn't read the first time through. Then we work on spelling, if she can spell it out loud (picture a spelling bee), then it is passed off with a note on the back and we don't bother with it for a couple of weeks. We work on about 6 words at a time.


Each day she tries to spell the word I read aloud. Once a week, I have her write them. We also use spellingcity.com to practice the words with the games. Her favorites are Hang Mouse and the word scramble.


Each year's worth of cards fit very nicely in a box for Energy Options candy bars.


Math- Talli is working on basic addition and subtraction, telling time, and counting money. At school, she uses Touch Math. She no longer needs the dots on the numbers or coins, but counts as if they were there.


Each day, I have her do 2 worksheets from the books listed below. Once a week, she gets her allowance of $3.50, which she has to count out and put 1/10 towards tithing and 1/10 towards savings. Then there is a discussion about how much she is going to save for a special event or toy and she has me put away a certain amount for that. Currently, she is saving to pay for her ticket to Disney Live! Three Classic Fairy Tales, which will be here in Illinois in March 2012.


The materials we use are:
Horizons K Math Package (I purchased from Son Light with the flashcards and manipulatives)

Time, Money, & Factions 1-2 (An I Know It Book)





Science- For science we are using
Magic School Bus books and videos
The Human Body, Super Science Activities
Facinating FActs, The Human Body

We talk about the systems of the body and she will do a worksheet out of one of the latter two books.

Geography- We started covering the Great Lakes Region, then the Prarie states, and then the West and Southwest (Florida was discussed almost daily because... That is where Disney World is!).
We used the following materials-
The 50 States Book and Magnetic Puzzle Map
Leap Tag Pen and Map
A cardboard puzzle of the states
A two week trip driving to California

Extended School Year

Today was the last day of the regular school year. On Monday, Talli starts Extended School Year (ESY) services. ESY services are for those who risk loosing skills over the summer break or who have an emerging skill that could be lost over the summer break. Those with Propionic Acidemia qualify for ESY as a metabolic crisis or stroke can cause them to loose skills.

In our district ESY is held M-Th in the mornings for 6 weeks. It is held at one elementary school in the district, so she will be bussed there each day. The classrooms are either multi-needs or instructional. Talli is in an instructional classroom. It tends to build her self-confidence as some in her class are a little behind her and some a little bit ahead.

The benefits for Talli are significant- rather than loose about 1 month of skills that the typical student looses over the summer, she tends to gain skills. I do work with her extensively over the summer as well, in my next post I will go over some of the things that we do during the summer and extended breaks from school.

What is average and what does it mean?

I was met with frustration again this week when I was discussing something with a medical provider and she did not seem to understand some basic math terms that are used all of the time in the medical field. The specific point was the "median" life expectancy for those with Propionic Acidemia. Nothing has changed in the past 9.5 years and the median life expectancy remains at 3.5 years.

Median is the middle number when you are looking at a series. So in the series 1, 3, 5, 8, 9, 15, 17, 23, 49-- 9 is the median as it is the middle number. So to get 3.5 years as the median life expectancy in PA there are an equal number of affected individuals dying under age 3.5 years as those older than 3.5 years. Median is useful in describing a set of data or series where the numbers are in a far reaching range.

Mean is what people usually think of when they talk about averages, it is when you take a set of numbers and add them and then divide by how many numbers in the series. So looking at the same numbers above- 1, 3, 5, 8, 9, 15, 17, 23, 49-- Add them 1+3+5+8+9+15+17+23+49=130. Then divide 130 by 9 as there were 9 numbers in the series- 130/9=14.44

So with the same set of numbers the median and mean can be very different.

I was upset because this medical provider was telling me that propionic acidemia was not life threatening, when it is even when you are past the median life expectancy. She was essentially telling me that since she is older we don't have anything to worry about-- no, we do. We have to continue to be careful and cherish everyday because it is not known how long she could have. So shame on her for passing on misinformation from a person who should know these basic math concepts.

Pounding the Pavement for PA

On October 16th, I will be joined by several other parents and friends of those affected by Propionic Acidemia in Columbus, OH. We will be running in the Columbus Nationwide Half Marathon. Our goal is to raise $13,100 for the Propionic Acidemia (PA) Foundation, that is $1,000 for each mile of the race. My personal goal is to raise $4,000. I will donate $1 to the PA Foundation for each mile I run in training and in events. I will also be running in the Hot Chocolate 15K with my husband, Rawlo, on November 5th in Chicago.


HOT CHOCOLATE 5K 2010
Ryan, Jill's son on the left, I am in the center, and Jill, President of the PA Foundation is on the right

The PA Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. I have been on the board of directors for the past 5 years and we try very hard to make sure we get the most out of the funds donated.

PA is a tough disorder. Talli has faired well compared to most others that we know of, but we do not know how her life will play out or for low long. PA can cause seizures, low muscle tone, developmental delays, cardiomyopathy (enlarged, weakened heart), Long QT Syndrome, low blood cell counts, osteoporosis, stroke, suppressed immune function, optic and auditory nerve atropy, pancreatitis, and very early death.

Please make a donation to the PA Foundation. You can do so through the Paypal link at http://www.pafoundation.com/, through my Firstgiving page at www.firstgiving.com/fundraiser/brittany-smith-2/poundingthepavementforpa, or send a check payable to Propionic Acidemia Foundation at 1963 McCraren Rd., Highland Park, IL 60035.

You can follow the progress of my training on the Firstgiving link above.


Talli October 2010



Talli October 2001, her first "crisis"

Low Protein Foods on Amazon.com

Talli gets into food jags. I few months ago she was eating a LOT of french fries, so much that we had to limit how much she was eating per meal. Then it was Energy Options Candy Bars. Now it is Ener-g Gourmet Crackers. The problem is that I never know what food she is going to take to and for how long. It is easy with fries, since everyone else will eat them and they are readily available.

I only ordered 1 box of the Ener-g crackers when I ordered some low protein/allergy-free foods last week. Well, yesterday she ate 5 of the crackers and would have eaten more if there were more. The box only has 18. I called and visited several local stores and even though Target, Meijer, Jewel, Whole Foods, Fruitful Yield and Dominicks all have a gluten-free sections, none have the crackers. So in looking on-line this morning, I found that Amazon has Ener-g products in their Substribe & Save section. They ended up being only $2.43/box + free shipping, while Ener-g.com has them for $4.18/box +shipping.

So she will have to wait until Tuesday afternoon to get more crackers- I how she will still want them by then.

What Not to Say to a Mom with a Seriously or Terminally Ill Child

I came across this article today by Rachel Carpenter http://www.associatedcontent.com/article/1645757/what_not_to_say_to_a_mom_with_a_seriously_pg3.html?cat=25 and it is so true. These are things you should not say to a mom of a seriously ill child.
#1 "No matters what happens. it's God's will. [sic]"
#2 "I just know he/she will get better."
#3 "Are you needing help?"
#4 "I know exactly how you feel. My baby was in the hospital with RSV last year."
#5 "I had a friend go through this too. It was really tough for them, and now the child has lifelong disabilities."
#6 "I just don't know how you do it."
#7 "You need to relax. You need to be strong for your other children."

I definately get #6 a lot. I don't know how I do it either. Many days I want to stay in bed and pull the covers over my head, but I can't. There are feedings to do, appointments to make and go to, and kids to feed. If I looked pulled together it is because I rely on Diet Dr. Pepper and try really hard not to cry in front of my kids.

Occasionally, I get #3, and as the article points out, it is difficult to say 'yes' to the phrasing of that particular question. YES! YES! I always need help. It is horrible dragging 3 kids to an appointment, especially to offices that aren't kid friendly (most), have small rooms (many), it is an appointment where I actually need to hear what the doctor is saying (typically), or they run a couple of hours behind schedule (much more than one). I could definately use someone to cook us a meal that is low lactose (O), kiwi-free (M), peanut, egg, nut-free, etc. (Talli), low protein & low fat (Talli), and high protein & low carb (me). Meal planning is enough to want to crawl under the covers as mentioned above. ;).

A reminder to always check...

I know that everything should be checked with Talli: verify medicatins are correct, the right formula is given, packages of food are checked for allergens, IV fluids are correct, etc., etc.,

A couple of years ago, she was in the hospital and TPN had been ordered. It was a non-modified amino acid version, the kind anyone else would get. Some visitors were leaving when the IV bag was hung and as I walked them to the door, I checked the bag. The protein count on the bag wasn't what I had expected, so I alerted a nurse. The pharmacist had made a mistake and 24 hours worth of protein was in a bag to run for 4 hours. I am sure that no long term damage would have been done, but it likely would have prolonged her stay. Everyone was very nice and apologetic over the mistake and a new bag was sent up within the hour.

Yesterday, Talli got her delivery of some Energy Options candy bars. She has been eating a lot lately and we had run out of the mint and while chocolate versions. Energy Options candies are made to be completely protein free and are peanut and tree-nut free. To foster her indepenence, we usually have the bars in a designated place for her. Instread of having the imprint of "Energy Options" on the bar, it said "PhenylAde". Appled Nutrition makes both Energy Options candy and a bar called PhenylAde that is an amino acid modified food to replace formula for someone with PKU. The bar contains 10g protein equivalant, lacking only phenylalanine. So if Talli ate one, she would be getting 100% of her protein for the day.

The bars are getting sent back to the manufacturer, so they can verify where the problem lies. Is this actually a PhenylAde bare that got into an Energy Options package and box or an Energy Options bar with the wrong imprint. It was a reminder that everything does needs to be checked before it goes into Talli to keep her as well as she is.

I did check all of the mint ones by pressing through the wrapper to read the imprint on the bar.

Education Resources

I came across this information and just needed to share!

Baxter makes a couple of formulations of IVIG. Talli was going to start on one of them, but we found out they contain glycine. Talli's glycine level is already very elevated, which is a complication of PA. Baxter provides the following at no charge at www.mygardian.com/gardian/living-with-pi/resources.html

The blue bear, named IGI V, is included in the Therapeutic Play Kit. It contains the bear, medical supplies to give the bear and IV and remove it. There is a notebook for the child to record how the infusion went, a guide to theraputic play for parents, and a story book for kids. Even if the child just goes into the hospital occasionally and doesn't receive IVIG, this would be an excellent tool kit in helping them to cope.

We used IGI V during Talli's last hospitalization. She put an IV into the bear, including talking about how it was important not to get it too close to thumb for video game playing.

IGI V's Medical Records is included in the Theraputic Play Kit or you can order it separately.

The ABC's of Kids Like Me is an ABC picture book and some of the pages are medical related. For example, 'D' is for Doctor. The second half of the book is blank so you can create your own personalized ABC book.

This is My IVIG Book is a children's story book about getting IVIG. It includes a blank book (you could easily customize the cover by covering up IVIG with hospital or doctor), paper and stickers.

The last thing is for parents. There are 2 Notebooks in the Wellness Kit with divider pocket folders and blank pages to keep track of medical information, bills, etc. You could also customize for your metabolic child with the Care Notebook that the Propionic Acidemia Foundation put together. It is available under 'sites of interest' at http://www.pafoundation.com/. It is available in English and Spanish.

PA Consensus Conference

Tomorrow, I fly out to Washington, DC for a PA Concensus Conference sponsored by Children's National Medical Center. There will be a small group of metabolic doctors attending, as well as liver transplant experts, a neurologist, and representatives of parent groups. I will be representing the Propionic Acidemia Foundation, along with my dear friend, Jill Chertow Franks.

We hope to make great progress in creating documents with recommendations on screenings and monitoring. It is expected that the information gathered and discussed will be published.