Showing posts with label children's health. Show all posts
Showing posts with label children's health. Show all posts

Wednesday, October 5, 2011

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.

Thursday, September 22, 2011

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.

Wednesday, September 21, 2011

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!"

Wednesday, September 14, 2011

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.

Wednesday, August 31, 2011

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 26th. 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 18th. 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.

Tuesday, April 19, 2011

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.

Wednesday, March 16, 2011

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
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.

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Talli October 2010


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Talli October 2001, her first "crisis"

Tuesday, February 15, 2011

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. ;).

Wednesday, February 9, 2011

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.

Thursday, January 27, 2011

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.

Wednesday, December 29, 2010

Mucinex mini-melts for Kids! not compatible with feeding tube

Talli has a pretty nasty cough. Her pallative care nurse suggested Robitussin DM, however, the pharmacy only had adult Robitussin DM, so the pharmacist suggested using Mucinex mini melts. She indicated that it is like Prevacid Solutabs, so would fit into her feeding tube.

We did try it last night. Unfortunately, Mucinex completely clogged up her tube AND her button. Changing a button is anxiety provoking to Talli, so I try to avoid it as much as possible. After cleaning out the extension set while not attached to her, I realized that her button was indeed clogged. I found a bamboo skewer and gently used the tip to unclog the button. The one way valve on the button was already shot, so I didn't have to worry about breaking it.

So Mucinex mini-melt for Kids! doesn't work with a feeding tube, so stick to the liquid version. Prevacid Solutabs and Tylenol meltaways DO work in a feeding tube.

Monday, November 22, 2010

Hospital Beds

Hospital beds, what can be done to get a good night's sleep in one? I don't mean the electronic beds that raise and lower, fold, and weigh patients. I mean the ones that the parent or significant other sleeps in to be near the patient.

The hospital that Talli usually stays at has 3 different types of beds, the worse being a hide-a-bed type, that folds out from a chair with a thin, likely spring mattress. The better ones in my opinion are more like day-beds that a couches and may have removable pillows or pull out slightly from the wall. My dorm bed in college was this latter type.

Over the weekend, I spent the night with Talli in the hospital. For the past 3 years, my husband has taken the honors on almost every night (40+ nights), however, he was sick when Talli was admitted, so I stayed with her. Unfortunately, she was put in a small room that will only accommodate the worst of the parent beds. I tried a couple of things to help make my attempt at some sound sleep-
1. sleep with your head at the foot of the bed. While initially, it felt an though I was laying downhill, a couple of pillows remedied that. The mattress was less worn at the foot.

2. layer a couple of blankets. I folded 2 blankets in half under the sheet. This gave more support and evened out the feel of the springs, so one wasn't poking me in the knee or some other random place.

3. Sleep in the parent room or "quiet room". I didn't do it this time, but I have in the past. The beds seem to the newer and more comfortable in there. Even in our hospital with about 15 peds beds, there is a lounge-type room with an extra bed in it. At larger facilities, we have used their parent suite that had several beds and a full bath with sitting area.

4. Trade beds. Talli loves to sleep in the pull outs, so often she and my husband switch (with the nurse's ok). When O had surgery a few weeks ago, the nurse gave me the option of just having a hospital bed in the room to sleep together, instead of a crib for him. However, with that option, I would have needed to stay with him ALL of the time and I knew at some point I would need a crib to just use the bathroom.
When Talli was younger she also liked to sleep in the wagon they had in the unit, so that freed up her bed. When she had pneumonia once, she would only use the oxygen if she could sleep in the wagon.

Please post a comment if you have other ideas on how to get a good night's sleep in the hospital.

Saturday, November 13, 2010

Update

I hope to be back to posting more regularly. We have been having a pretty busy couple of months. We did close on our new house in June and then I promptly left to spend a month at my parents' place with the kids. Once home, we had a protracted battle with our school and Talli ended up missing most of the first 6 weeks of school (so I was her teacher). O ended up having some surgery.

We have had weeks with 4-6 medical appointments. I try very hard not to have more than one in a week, but we lost 3 medical providers over the summer because of the physicians leaving their practices. It took several meet and greets and appointments until we could find the right fit for us. We are still looking for a pediatric GI specialist, but that is not something incredibly urgent for us.

In all of this our beloved babysitter moved away. We are on the search for other helpers.

Restocking the Emergency Box

I like to be prepared for situations that may not come up a lot, but would be pretty darn inconvient or unsafe if I wasn't prepared. An important part of this for me is having supplies for Talli to get through an emergency. Say if we had to evacuate or we had a fire, flood, or tornado, all unlikely situations, but they could come up. So I keep a couple days worth of supplies with a friend who lives about am hour away.

Today, I met up with my friend Jill. Her son also has Propionic Acidemia, but is on a different brand of medication and he only uses 2 of the 4 formulas that Talli uses. So last night we were chatting and e-mailing about what was in the last box we left at each others houses. Everything had expired or was no longer usable (i.e. diapers that were too small).

In the couple of years that we have been doing this, Jill has not had to use her supplies that were at my place. However, we have had to use what she had stored for us. We are regularly near Jill's place for religious services. Three years ago, I was coming back from Michigan from visiting with some friends and was to meet up with my husband, Talli, and M, so Rawlo could attend a religious service near Jill's house. I arrived a little late and Rawlo had already left (some friends were watching our kids), Talli's feeding had been forgotten at home. I thought that she would be ok with some sugar water in her feeding tube.

Unfortunately, Talli was sick with something and when Talli gets sick, she get sick quickly. Within about an hour, she fell asleep (a sign things are pretty bad) and wouldn't wake up. As I packed up our things to head home, she started to vomit. I made a quick call to Jill who made up a batch of no-protein formula and a friend carried Talli to my car. She continued to throw up on the quick trip to the car. We made it to Jill's house in about 15 minutes and got her some formula and cleaned her up. Thankfully, by the time we arrived back to our house she had perked up and could be roused. NOTE TO SELF: put some extra clothes in the box at Jill's place.

So, while we have only used the supplies once, that one time did save Talli from a likely hospitalization.

For those with similar disorders or any chronic medical condition that requires medication, any kind of emergency like I previously mentioned could impact the health of the individual as emergency responders (i.e. Red Cross) are usually not set up to provide for chronic medical needs. It is best to be prepared, so that you are not dependent upon others in these types of situations. For us, it typically takes at least 3 days to get formula from our supplier.

Ready.gov has information in being prepared for those with disabilities and medical conditions. This page has the most information: http://www.ready.gov/america/getakit/disabled.html

Saturday, August 21, 2010

Kids Clothes

I am very much a clothes snob. I admit it. I like certain clothes and brands and I stick to the ones I really like. For my kids, they primarily wear Hanna Andersson. With Talli, I had lots of problems with her getting rashes from different fabrics or exposed elastic. When she potty-trained, I had problems finding underwear without exposed elastic. Then there is the body shape issues- she is short and puggy. I also dress my kids modestly, Talli doesn't wear short-shorts or tank tops. She can't fasten waistband snaps or buttons. For the most part, Hanna was the solution, I can get cropped or capri pants that then fit like regular-sized ones. The elastics are usually covered. Many of the girl clothes have elastic waists.

I rarely even goto a Hanna store anymore, since I can call up an outlet store tell the employee what size and sex clothes I am looking for and she will look through the store for me and ship, usually the same day. But Hannas can be pricey. I buy some on ebay, however, finding larger sizes (120cm+) can be difficult. Do get on their e-mail list as you will be alerted when sales are occuring, especially at the outlets. I recently purchased some new girl tops for $2.50-4/each.

I just same across the website for Soft clothing for all children. I am so excited! They have jeans with an elastic waistband and they are cute!! Their focus is clothing for sensory-affected kids, but since their clothes do not have buttons they are also good for those with fine motor delays.

They are have a back to school giveaway on their website here: www.softlanding.net/products/sale where you can enter to win some T's, socks, a LandsEnd backpakc, and a bunch of school supplies and sensory toys.

Thursday, April 15, 2010

Cherrybrook Kitchen

I am so excited! Today I received in the mail 3 coupons for free Cherrybrook Kitchen products. Cherrybrook Kitchen is an allergy friendly and also low protein food company. They sell cookies, brownies, baking mixes, frostings, and they have a gluten-free line as well. They are sold on-line, but also at health food stores, Target, and locally for us, Jewel-Osco/Albertson's.

They have a rewards program called "CBK Rewards" where you send in the bottoms of the boxes with the UPC code for cool stuff.

A Cup-a-cake cupcake holder is 4 box bottoms
A free coupon is 8 box bottoms
An iPod Nano (8GB) is 125 box bottoms
There are more, this is just a sampling.

We really love the mixes. When Talli couldn't have wheat we would use the wheat-free mixes and everyone in the family ate them.

Wednesday, April 14, 2010

Needless IV lines & Oral Med Syringes

Multiple brands of needleless IV systems can accomidate oral med syringes into their hubs. With increasing use of needleless IV lines there is risk of mistakes in using oral med syringes in those lines. Here is an older article listing the problem: www.ismp.org/hazardalerts/inject.asp

Baxa Corp has several new oral med syringes that are incompatable with needleless IV lines. They also have syringes that are orange and purple to differentiate them from IV syringes.

Be aware in a hospital setting that oral med syringes (non-sterile) are not used in your child's IV line. You are their biggest advocate.

Saturday, March 27, 2010

What my other child needs to see a specialist?!

Baby O had his 12 month check-up this past week. It was a bit delayed because M had an appointment the day we were suppose to go. He has always been on the smaller side, but he has fallen off the growth chart in length, weight, and the very critical head size. His pediatrician wanted him to see an endocrinologist. Since Talli sees one, I scheduled an appointment with him.

The endocrinologist has already told me that work is his life-- he has office hours 6 days a week at various Chicagoland locations. We started seeing him when he was on staff at Loyola University. We were able to get in this morning.

We are changing up his diet a bit-- more fat and we will be adding extra calories to his bottle. He suggested 22 calories/oz and after discussion he said to go up to 30cals/oz if he tolerates it. Since we have polycose & prophree around and we can do the math in our heads, we will add that in to the formula. Since his growth was poor, the pediatrician said to not take him off formula. He had a bunch of labs drawn and we will see what comes up.

I think after Talli something like this comes up and we just shrug our shoulders and go on. Food is always an issue in the house, so my big hope is that celiac disease is not the problem, but that is so easily managed. If he needs ongoing follow-up, we can easily schedule Talli's & O's appointments for the same time. The doctor brought up finances at the appointment and I told him if it was a problem I would let him know, $50 co-pays stink, but we do plan for them.

Monday, March 8, 2010

Psychological & Neuropsychological Testing

In November I attended PKU Illinois' annual meeting. During the meeting, Dr. Susan Waisbren made a presentation regarding psychological & neuropsychological testing in those with PKU. I did ask her if it applied to other disorders like Propionic Acidemia and she said it did.

My daughter has her first appoinement with a child psychiatrist to discuss learning issues and her anxiety around medical procedures. We also have a domain meeting in school next week as she is having her 3 year review.

The Genetics and Metabolism Psychology Network (GMPN) www.gmpsych.org lists reference articles and applicable testing in those with metabolic disorders. I found the information very helpful.