Follow Up

We saw the GI again today and Ellie is now at 45 1/2 lbs!! So happy for good weight gain. Not as fast as the dr wanted to see with moving to the GJ, but she is thrilled with steady gain. We talked about the Neocate issues and she is concerned about Ellie having constipation issues once again now that we are on the new label Neocate and wants us to try Elecare. We are to try the transition slowly to make sure she is not reacting to it.

She is thrilled though that she is getting more color in her face and her skin coloring is closer to normal. That was the first thing she noticed. She can't wait until her coloring is better and the dark rings under her eyes are decreased even more.

We also talked about our upcoming appointment with the Genetics dr, she is glad this is coming. This is to rule out several things to include possible mito and Elhers Danlos Syndrome. Just “maybe” for the first time she may be actually classified instead of remaining on the idiopathic realm. However, whatever the Lord has in store for the amazing princess is what we will handle in stride and continue to work with her dr’s with.

All in all things finally seem to be moving in a positive direction for Ellie for the first time a very long time. 

Neocate Formula Users PLEASE Read and pass on!!

This has some very IMPORTANT information that needs to have many sets of eyes and ears out for. I am taking this from other posts and some of this has my words and some of this the words of others. PLEASE take this information seriously, take note, and pass this on.

This is very important that ALL of you keep your eyes and ears open. If you see people posting about their GI kid suddenly getting worse, ask about them being on Neocate. I know this this may sound crazy and more crazy to assume that their child/ren are on Neocate. At this point, I believe the efforts of all informed will SAVE lives. There are already children that are sick and even if the mom knows there was something wrong with the formula, the docs won't believe it until they see enough. By then, too many children have suffered.

This is IMPORTANT for those parents experiencing issues with the new Neocate label switch, please call 1-800-365-7354 press option 2 then press option 2 again and that will get you though to the Nutrition center.

Ask for Christine ONLY. It appears these new cans have prebiotics in them by mistake and that is why our children are having RED and RAW butts along with itching, etc.

She will ask for:

• the Lot Number, EXP date, MFD date and the time stamp.
• want to know the time frame in which the issues first occurred.
• In some cases the reactions are within the first 24 hrs, others are delayed.
• It is of utmost importance to remain calm and be supportive of how much Neocate UNFLAVORED W/O PREBIOTICS has helped your child.
• PLEASE CALL AS SOON AS POSSIBLE
• Again: Ask for Christine ONLY and keep record of everything you discussed.

Thanks so much. Let us HOPE that Neocate has made a mistake (far better) then for our children to suffer with no other alternatives.

• For most children on Neocate, Neocate is our last hope.

Further dates update and information:
Parents have spoken with their local complaint department for the FDA. The refreshing side is that with a formula (infant or child) they quote "immediately respond to complaints because in training they are told that their most important job is to protect the babies from (situations like this)."

Follow the link you to a page that you may use to call ONLY if you have already exhausted Neocate and given them your information FIRST. 

The FACT that this is a medical formula means that cross-contamination and possible "trace" amounts in their can HAVE to be labeled. Christine has stated (to other parents) that they (Neocate) DO NOT treat the rice/inulin/fos as for example the way you would treat peanut allergies in a plant made is upsetting other parents. Neocate HAS to know as parents of children with SEVERE food allergies, Eosinophilic reactions, severe GI issues, or their specific medical reason for Neocate that this is NOT ACCEPTABLE!

When you contact Neocate or the FDA, PLEASE have this information on hand:

• all of your contact information
• the cans in question with the label
• be ready to talk about your child's medical condition
• be ready to talk about the timeline in detail up to the hour if you can as to how you came to this conclusion
• be ready to talk in detail about how Neocate has responded. (so far they have been nothing but positive and respectful with everyone!)

Please for those of us with children who could be hospitalized from this mess do NOT share your lot numbers or dates/timestamp with others at this point. Eventually if there is a recall...they WILL announce it!

http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

Young Friends Arguments and using “I Feel” Statements when Talking

Tonight while the kids had friends over our youngest started to have arguments with one of her best friends. Well the first time I spoke with her friend and let her know what was going on. The second time I spoke with Ellie. We talked about words and how words make each of us feel including her friends. The third time her friend came complaining, this time I had both girls come in.

Reflecting back to a poster that was in the elementary school room for one of the teachers in CO I spoke with both girls about how their words may mean one thing to them and something else to another person.  The next thing we did was to use “I Feel” sentences with both kids.

First off, I had Ellie use her friends name and tell her how she felt when the two girls were acting like they were. Next, her friend used Ellie’s name first and let her know that she felt upset by Ellie using her name over and over. The argument was over Ellie trying to get her attention for something and her friend telling her sister something.

After both girls told each other what they disliked about what happened, I next had them both tell each other why liked being friends with each other. Within seconds instead of arguing they suddenly ran off giggling in search of whatever toy was so important to play with outside. After having both girls talk to each other using the “I Feel” statements they continued to play for another hour and a half without any further issues.

So why do these statements work so well to stop and prevent further arguments especially in children? Both children have the opportunity to discuss how they feel about what has happened. They talk about what and why they do not like the action. Using “I Feel” statements helps the children to focus on what happened not what their friend or sibling did or did not do. These work because each child involved takes turns talking and listening to each other. Because those involved are actively talking and listening the conflict is more likely to be resolved in a calm and peaceful manner.

Other communication skills that children can practice learning involve the difference between using a soft voice and style, loud voice and style, or thinking and sharing.

For example if children are arguing over crayons or markers while making and coloring pictures, the soft mannered child would not say a word. He or she would either get up and walk away leaving the project alone. The loud mannered child may throw a fit about the arguing and fighting, grab all the project supplies and either shove them aside or put everything away finished or not. The thinking and sharing child would try talking to the other kids or get an adult for help so they can finish the project.

While none of these basic conflict resolution styles is wrong or correct, each approach will produce different results and possibly different consequences. As children are learning they can be asked with different attempts to fix and resolve problems, they can be asked question to help them reflect and share.

What happened?

Do you know what style you used? Soft, Loud, or Thinking and Sharing

After you tried the ___style, what happened?

Were you able to fix or help fix the problem?

As these styles are practiced, children will better recognize what style they are using, and what style will be best in different situations. In addition, they may soon see that one style is not always the right choice to fix every conflict they will encounter.

In the situation of the girls, the soft style of simply walking away was not enough. The loud style was escalating the arguments, and the girls needed help to think and share using “I Feel” statements. One they thought, shared, listened, and found out what was really going on the “conflict” they felt was getting so bad, suddenly was defused and they were once again best friends and laughing, giggling, sharing, and playing.

Things we say that would leave others stumped…

This is in response to another feeding tube blog I follow and the their post about comments that we as feeding tube parents say that we either hope others do not hear, or know if they are heard wonder what they are thinking. On the Feeding Raya blog (http://agirlandhertube.blogspot.com )  she lists some of these comments. Her list made me giggle. Ok well some of the comments I laughed more than just giggled over because yes we have been there too.

Some of our comments are:

“Chantelle why are you unplugged again?”

“Chantelle, get over here NOW so we can get your pump running!”

“Mom, just dump it in my bag, that milk is icky!”

“Oh yay!! Now I am so full, stuffed like a turkey” (she says as her feeding pump bag is full and the pump is running again)

Big sister: “Ellie, turn off the alarm on your pump!”

Ellie: “No! it says I am hungry and need milk”

Big sister: “Well, just turn it off until you get milk in there please’

Ellie: “I can’t my hands are busy and my j-tube is screaming for more milk’

Big sister: “UGH, just make it shut up already”

Ellie: “Then give me more milk, I am drawing.”

(A recent argument between Ellie and her big sister as I was in the kitchen making milk trying not to laugh at them)

“Mom! Ellie is leaking again”

“Ellie’s tubes are puking all over again!”

“Mom she’s puking in her bag again”

“Mom! She exploded again!”

“Ellie do you have your IV pole tied to you again?” (She does this she can walk around without pulling it)

 “Ellie that is an IV pole NOT a skateboard”

“hey mom look my IV pole scooter is making me oh so faster than my brothers now!”

“Ellie’s Mom, her pump threw up all over the bus again and got me so gross” (her best friend said when her extension port popped open  on the bus ride home)

“Just breath and blow on my face so we can push this button into your tummy. 1-2-3, blow, all done!! Yay!! Awesome job you did it!

“oh please do not puke!”

“Will one of you bigger kids vent her tummy now so she does not puke again?”

Food Challenges...

For an interesting thought process and how our children with severe food allergies respond to "passing" or "failing" the food challenges please read this post http://theallergistmom.com/2012/09/25/the-food-challenge-challenge/ and how this mother and her child have experienced going through food challenges.

Food challenges for a child truly are not pass or fail, but whether or not child's body can handle the foods yet or not. This mind set makes a huge difference in the kids attitudes

Ellie had a weight check yesterday and she is now up to 45lbs. This is the MOST weight gain she has had in a LONG time (longer than I can remember) in a short period of time and not induced by being on prednisone.

We are very thankful not only for this but also for her increasing energy levels. On Saturday she had 2 hours of dance, came home got a birthday present ready for a friend, attended the Scout Spaghetti Dinner activity, then right after that we went to a birthday party at Chuck E Cheese for one her friends here.

Granted she was EXHAUSTED! We did not even make it out of the parking lot to the light before she was out. She was so soundly asleep that when she was taken out of the truck, put in bed and gotten ready for bed she did not wake up at all.

Sunday morning she woke up long enough for her meds, grab some breakfast, and let us know that she was not feeling well at all. (We expected this) then went back to sleep. She did not wake up until nearly 1pm.

Today she had enough energy and was so excited to go school. This is not only a new thing for her but exciting to see her be able to do. We will see how tired she is when she gets home from school tonight.

What has your day been like?

Today has been a crazy, exhausting, long, yet very productive day.

My day started at 5:45 when my day started. Unfortunately I was unable to get Celidah to seminary in time. However, I was able to make sure everyone else was awake, showered, fed and off to school in time.

Once the older kids were off to school I loaded the younger 3 into the truck, took them to school. Showed the school nurse how to work with the MacGyver'ed feeding tube set up for Ellie (until we have the extensions we need).

With the school nurse as comfortable as she was going to get with the setup, shown how to flush the the j-tube, give meds in the g-tube, arrange the time to drop off the forgotten meds, I headed out. I was then off to Pennsylvania to get the needed money order to finish the application process Mini Buddy needs for our Nonprofit status. After getting lost, finding a gas station, putting the address in again I was getting ready to get back on my way.

Well as I was about to get back on my way our insurance case manager called to let me know the status with our DME and helping us find a new one. (She found a new one YAY!!!)

***We have to switch DME companies because the one the insurance "approved" is actually out of network, and if they realize this we may be responsible for out of pocket expenses, copays, back copays, and other back expenses.*** Yeah... So we are switching before our insurance company realizes this...

So with a new DME found she was letting me know about that. Well at the same time I was letting her know about the frustration we were having with getting the correct extensions for the new G-J et button that Ellie has and how 3 (or 4) times now we have given the item part numbers and 3 times now we have been delivered the WRONG extensions!!!! Not to mention the fact that we still did not have what she needed. Part of the issue is the warehouse is located in New Jersey and they are backed up with orders and deliveries due to the hurricane. But still getting the wrong items several times in a row is frustrating.

Finally, I got the money order, talked to our case manager 3 more times while traveling back home. Got home with enough time to finish some needed paperwork for the bank and email it in. Gather the needed meds for the school nurse. (Find my training doll the kids put in a bag in my office *yet had NO idea where it was (sigh)**). With this gathered I got what I needed for the PTA meeting today, and headed back to the school to give the meds to the school nurse and get the PTA meeting.

On my out the door I discovered we had a delivery at the door, grabbed that and placed it in the truck. Then while heading to the school I called our cookie dough fundraising person to get some questions answered. Then as I was arriving to the PTA meeting I peeked in the box to discover I had NO idea what the extension in the box were for... the J-tube or the G-tube??? So I called and left a message for our insurance case manager and asked for help.

Well during the PTA meeting I spoke with our case manager two more times (sigh), got the number for AMT, our local rep (He is amazing) and the 1-800 number. I was given the home health nurses number to get help with the extension issue and we were given authorization for more visits to make sure we get the right supplies. (I felt bad taking up part of the PTA meeting dealing with this issue but it needing clearing up).

Left the meeting (a lot was accomplished there too), we have an AWESOME PTA board! Once I got home I started dinner, called AMT found out what extensions I got (yes something was actually right!!!), found out what else I needed. Called Pharmaquip to get the rest of what I needed. )

Talked to our new DME, (they called while I was on the phone with the other DME,  found out we needed to let Pharmaquip let the new company know they can talk to each other (sigh)...hung up with them) Talked to Pharmaquip again... Told Pharmaquip why we "have" to change... h and our case manager called again...

By the time I finally got this posted and dinner done I had spent over an hour trying to post about my crazy day. As soon as the kids are done eating we are off to the church for scouts and church activities....

So what has your day been like?