FTT Journey Update: Changing Pediatricians

It has been some time since Madison was diagnosed with Failure To Thrive. This journey through discovering how to manage and overcome it has been nothing short of stressful. We have been to countless Dr's appointments, Therapy sessions and recently had a slew of tests done at the GI's office to make sure there was nothing medically preventing her from gaining weight. As a mom I want nothing but the best for my daughter. I want her to receive the best care possible, see the best OT's, and have a reasonably happy experience through all of this. This is why we have decided to switch pediatricians. When we initially started receiving care from her new pediatrician (which was only after her old Pediatrician retired and we were gifted to this one) we were so excited that this Dr seemed to know what was really going on with Madison. We thought she knew what she was talking about because she had gone through this same thing with her daughter and had personal experience. To us, personal experience is great because it meant we had someone who knew what we were dealing with, going through and could offer a slew of help to progress us towards overcoming the diagnosis. After some time with this doctor however, I have become uneasy with her. She has threatened to take my daughter and place her in a hospital countless times, she told us to force food and drinks down Madison's throat any way possible and is not taking into account Madison's sensory disorder issues. She scolded me like a child at the last appointment after I told Madison (who was just playing on the floor a moment earlier) to not put her hands in her mouth. This is how she easily gets sick as her immune system is not very strong. Her Pediatrician told me to let her put her hands and whatever else she wants in her mouth as we don't want to deter her from the hand to mouth movements. Whereas I understand her thinking in this advice, I don't agree with it at all. I have two children to care for and if we are to stay healthy, I cannot have Madison getting sick because she touched everything yucky and decided to suck it off her fingers.

I have come to a point where I am aggravated and exasperated with her Pediatrician. I completely understand the concerns her Dr has for her weight gain but it seems her Dr has taken her concern to want immediate results. I have discussed the situation with Madison's OT's, a family counselor, and other mama's who are going through the same things we are. We have all come to the same conclusion; we need a new pediatrician. 
       You cannot force a child to drink or eat anything. Especially when they have a sensory disorder. Forcing the child or threatening to use a syringe (as the Dr told us to do- we are not proud to say we have tried this multiple times before realizing we were doing more harm than good) to pour her drinks down her throat, just makes the child shut down, have epic meltdowns and makes them scared of the item in question. Her Dr seems to want immediate results with each appointment. She isn't happy with just one pound gained, she wants multiple pounds. Even after expressing to her the stress, tears, and misery we go through each and every day just to get her to eat and drink her required calories, she is still unsatisfied. I am very understanding that my daughter needs to gain weight. I understand that a full year of no weight gain is not a good thing and that she has a lot of catching up to do. I also understand the struggles we are going to have to go through for many more years to get her to where she needs to be. What I don't understand is why her Dr cannot understand how much past the limit of stress and struggle we really are. Her Dr thinks that Pediasure is our saving grace and is the only thing that will put meat on Maddie's bones, but Maddie has come to dislike the one drink that she was being forced to drink multiple times a day. Honestly, I don't blame her. I have done many hours of research on high calorie/fat products that will help Madison gain weight and believe that we finally have a few products that will help.

        Now, I don't mean to bash her pediatrician or run her good name through the mud. I am just frustrated with how she is handling our situation. She is a great Dr and I am appreciative of the help that she has given us in diagnosing Madison, referring us to OT's and GI's and for helping us realize some important things. She has a wonderful staff and a nurse who we absolutely love. Sadly though, I don't think she has the qualifications to handle our situation at this time.

        We are currently waiting for the insurance to approve a new Pediatrician and I pray that this Dr actually listens to us and can offer the help and support that we need. I will be posting later how Madison's therapy sessions are affecting/not affecting Madison's progress. Thank you to everyone who follows along with our journey. Your support means so much to us as this is not an easy thing to handle every day. We love you all!

A Major Milestone!!

We have some great news!! Although this may not seem like the biggest news to many of you, to us it's a major milestone! February, as you know, started out with horrible news. Our family was threatened with hospitalization for Madison if she didn't start gaining weight soon. Since that day we have been doing our best to achieve a minimum 1000 calories a day. Some days we attain these calories easily and others seem to be an uphill battle. The second week of February was a sick week. Both of the kiddos came down with colds and it took all we had in us to survive the week. Finally the girls seemed better but Madison still had a cough so it was back to the Dr's office for us. Our Dr must be tired of seeing us because we were in the Dr's office once a week for the whole month of February due to sickness. While there though, we learned that Madison had gained a full pound!!!! This is amazing as Maddie hadn't gained any weight for 8 months prior. We were so excited and felt that all of our hard work was paying off. This was short lived though. Madison was put on an antibiotic for her cough that wouldn't go away and that's when things started going south. Somewhat.

The first night we gave Maddie the medicine she had reached her 1000+ calories. Less than a minute after taking her medicine she threw up most of the days food. This happened again the next night. Within 4 days she had lost .6 ounces of the 1lb that she gained. While this was disheartening, it was also not as bad because she had still retained some of the weight she gained. The days that followed her sickness she didn't reach her 1000 calories. While this saddened me (because I stress if we don't reach our goals) I knew she would eventually get back to her normal calorie intake. Her Dr changed the deadline for which she needed to gain weight before hospitalization as well. She was excited that Maddie was showing progress and even stated that Maddie was looking much better in the face.

Now, I know we have a long ways to go and I know that God is working in our little girl to help her overcome her sensory issues and picky eating. I know this because I can already see the changes. Madison recently started mimicking everything we do. She saw daddy eating a bowl of cereal and decided that she wanted some. So, we gave her her own bowl with milk and cereal and to our surprise she ate it all! She even asked for seconds! She has since eaten a slice of pizza at daycare, a slice for us at home and is even eating foods that she wouldn't touch for a while!! She is even requesting her tooth brush during the day so she can brush her teeth while she watches her Mickey Mouse Club House shows. Yay!! I am so excited and I know that this is the start of even more great things to come.

New threats to our FTT Journey

I wanted to update everyone on our Failure to Thrive journey. We have had some very interesting past few months. In my last blog post I reported on our meeting with the Occupational Therapist. Since seeing her we have started Maddie on the new eating rules, chewy tubes, and have begun to really pay attention to her calorie intake. We have had some great days and some pretty stressful days but are still pushing forward. February 1st we had a Dr's appointment for my youngest. The girls' Dr was shocked and scared at how Maddie was looking. Maddie, at the time, had red all around her eyes from not getting a nap all day and the veins in her forehead were more prominent than usual. Maddie looked pretty sick at that moment which freaked out her Dr. She Dr gave us some suggestions and a major warning. She said that if Maddie didn't gain any weight in one month then she was going to hospitalize Maddie. She would settle for even one pound. Her (almost) exact words were "You need to crack the whip and get her to drink 3-4 Pediasures a day. She needs to start gaining weight or I am putting her in a hospital by the first of next month." This is something we did not want to hear.

This mama cried her eyes out all night. I held my little girl close and prayed for her, squeezed her and tried overcoming my personal feelings so we could focus on the task at hand. At that moment I felt like such a failure. I failed my daughter. I failed to get her to eat, gain weight and now we were being threatened with Maddie being forced away from us and hospitalized for 10-14 days. All I could think about was her being alone and scared in that hospital. I pictured the Dr's forcing food and drinks down her throat till they were satisfied. I pictured her crying for her mommy and daddy and so alone and scared wondering what she did to deserve this treatment. My mind probably went a little crazy and over exaggerated the extent of treatment that Maddie would be getting but it did send me into a worry frenzy. I decided to do what I normally do when presented with a problem that I needed answers to; I worry researched.

I was researching ways to increase her calories till 2 am! I reached out to other moms on a  hunch and it paid off! I found this new calorie increasing supplement called Benecalories. It is a 1.5 oz container which is a whopping total of 330 calories and 50% fat. The contents look like coffee creamer and are tasteless. They just change the texture of drinks a little by making them a little thicker. These things are a godsend! Expensive but very much worth it. I can make one of Maddie's Pediasures go from 240 calories to 620 with the help of the Benecalories and some Hershey's syrup for flavoring. This makes reaching our 1000 calorie goal much more attainable and less stressful.  Maddie at first didn't care for the Benecalories but has seemed to have gotten used to it. We have been able to reach 1000 most days with the help of these little things and yes we have been cracking the whip. I hate the pressure and stress this puts on us all but for the moment it is working.

Our Family's FTT Journey: Meeting the OT

It has been some time since I last posted about our Failure To Thrive journey, so I thought I’d give you an update. In the last blog post I listed the new rules for our little monkey to follow for eating. My new rules were based off of what I read in the book “Helping Your Child with EPE (Extreme Picky Eating)”.  We have since seen an Occupational Therapist (OT) and have had a few more trips to the Dr.’s office. 

To say that our OT gave us some hope is an understatement. We were very happy with how our appointment went and with the new techniques that the OT wanted us to start using. She loved the new rules I presented her and even added a few herself. We discussed Madison’s eating habits, foods aversions, sensory issues, and oral motor issues. She noticed that Maddie had an issue rotating her jaw when chewing and preferred biting her fingers to biting food.  After examining and discussing Madision, our OT implemented a these new rules:

• Madison is to use a chewy tube when she wants to bite down on something. This will save her fingers and help with her oral motor issues.
• She will use a good bye bowl to dispose of food that she doesn’t want to eat. She has to kiss, lick, blow or tap the food to her teeth before disposing of it into the bowl.  What goes in the bowl does not come out.
•  No liquids one hour before a meal. Pediasure is given after she is done eating. Solids are always given first
•  Let her know she doesn’t have to eat it
•  Talk about the properties of foods: texture, color, and so on.

Since obtaining these new rules and having my list approved, we have tried to implement them all to the best of our ability.  It isn’t easy to stay on a routine, especially when having to be out and about running errands or attending Dr.’s appointments.  Sadly, since starting these new routines, Madison’s eating has gotten worse.  She refuses her Pediasure often, she suddenly doesn’t like her ‘safe’ foods, and will only eat unhealthy foods. She refuses to drink shakes or smoothies now, and hasn’t gained any weight.

Our stress levels have gone through the roof. Some people tell us not to worry because it is just a phase, while others scare us with thoughts of having the need of a GI feeding tube placed. We are trying to avoid the hospital and GI tube as best we can. These treatments are worst case scenario and I pray we are not headed there.  We are taking things one day at a time and we shall see where we go from here.

Overcoming Toddlers Failure to Thrive Part 4

          Today is a new day! So my kiddos have just come back from a week at the grandparents. The little break was quite nice I do have to say, but I missed them terribly. I’d be lying if I said that I didn’t enjoy my time without them (if you can overlook the many tests I’ve had done at the Dr.’s office while they were gone) but truly I did miss them. I was able to clean my van for the first time in several months, do some touch ups with paint throughout the house, organize, and clean the things I don’t have time for or am unable to do while I’m watching kiddos. This time alone has also let me do some serious thinking. We were finally able to lock down a date to see an Occupational Therapist to help our little monkey and I was able to get a list of things down that needed to change in our household. Many of them are to help our baby girl overcome her eating issues and get our family on an actual schedule.

            One thing the book I read (you may remember: “Helping Your Child with Extreme Picky Eating” by Katja Rowell, MD and Jenny McGlothlin, MS, SL) is that every child needs a strict routine. So, a routine I have created. I have also made some new house rules for how we are going to help turn our daughters eating around. I know these rules probably wont apply to other households and may not make sense to you (unless you read the book!) But here goes:

1. No pressure- Not even positive pressure. No “Please eat” or “good girl you ate…” or “if you eat this I’ll give you this”, no “just try it you’ll like it”
2.  Monkey sits at the table with us at eye level (not in a high chair away from us)
3. No putting food on her plate without her permission. She gets to say what and how much goes on her plate from what is on the table
4. Food will be served “family style” in the center of the table
5.  Breakfast, lunch and dinner will be eaten together as a family. If we expect her to eat then we need to lead by example and eat as well.  This helps take the pressure of her being expected to eat and yet we aren’t, off of her.
6.  Routine! Routine! Routine! We are to follow a strict routine for mealtime, snack time, nap time and bed time.
7. There will be no “grazing”. Food is to be given at meal times and snack times only. This will help her obtain an appetite and help her body recognize routine (when she’s hungry)
8.  Playtime or cleanup right before lunch or diner- sing cleanup song- this helps her body recognize when its time to eat
9.  Brush teeth 2x’s a day- roof of mouth and tongue- to wake up the senses
10. More sensory toy time play
11. No sneaking foods into meals for nutrients- child will learn to distrust you if she figures it out
12. Pediasure or supplements will be offered at meal time only as not to spoil appetite during meals
13. Have her help make meals
14. Make more meals using children cookbooks
15. Take kiddos to farms to have them pick their own food and learn where it comes from

As you can see from my long list, we have a lot to work on. This doesn’t include the page long list I made for our daily routine! My hope is that in a short time after implementing these rules, we will notice changes in Monkeys eating habits. This will of course be changed or improved upon if her

therapist doesn’t agree with these rules (all rules on my list are taken from reading the above mentioned book). Let me know what you think of our new rules and what rules you have implemented in your home. Have they helped you and do you see any improvement? As always I would love your feedback!

Overcoming Toddlers Failure to Thrive Part 3

So recently I purchased a book to help us gain more insight on our daughters extreme picky eating and how we can help her overcome her failure to thrive classification. Remember the “Helping Your Child with Extreme Picky Eating” by Katja Rowell, MD and Jenny McGlothlin, MS, SL. Well…. I got the book! Yay! I had to find time to read it, which I somehow managed. I guess waiting for doctors, insomnia and my parents watching my kiddos makes for great reading time.  This book gave me such great insight into the different aspects of kids with picky eating. I always thought it was just kids being picky. Did you know that picky eating can be related to kids with sensitivities to foods and textures?! They could also have problems with their oral motor functions meaning they never learned how to fully chew their food.  Factors of pressures to eat (which is bad), not knowing their own bodies (or knowing that they are even hungry), and lack of

routine play a part in picky eating as well.

            After reading this book I am more aware of the pressures our children are faced with when learning and growing. I mean, when you normally think of kids you think they have it so easy. They don’t have bills to pay and responsibilities to worry about, but in reality they do. They have growing responsibilities and that can put a lot of pressure on them.  This book describes the many different reasons why our children are so picky with their food and how to help them overcome them. They describe the different sensitivity levels and how to stop pressuring the child to eat. I didn’t realize this was such an issue with children until I started poking around on the internet and talking to other people. Oddly there are a ton of kids out there with sensitivity issues. Our cable guy overhead my husband and I talking about our daughter and the book and told us his son has sensitivity issues.

       

  I don’t wish other parents or children to have to deal with this but I am glad we aren’t alone. There are blogs and many people out there who can help.  I guess I am writing all of this and telling you our story to help others. Maybe it will help you gain insight where your doctor has failed to diagnose your child correctly with an eating problem. Maybe you know your child has an eating issue and think you’re alone in your struggle to help your child. Trust me there are many people going through this. I hope the story of our journey in overcoming our child’s picky eating and sensitivities will help you. I would love to hear your stories as well! Please feel free to message me and share your success stories or current journey.

Overcoming Toddlers Failure to Thrive Part 2

Our perfect little whirlwind was recently told she was failure to thrive.  No parent likes to be told that there is something wrong with their child. Every parent fears and prays that their child wont get some incurable disease or have some thing wrong with them that puts their health at risk.  When I was pregnant with each of my children I prayed every night that my kids would grow healthy, whole and happy. It breaks my heart seeing children with diseases that kill or hurt their small bodies.  I would wonder if I would have the strength to watch my child go through the pain and suffering that many children go through on a daily basis. I really don’t know how their parents keep it all together. I would be a major wreck! To all you parents going through this battle, I am praying for you and your babies. Where was I? Oh yeah, praying for my kiddos. When my babies were born with a clean bill of health I was so thankful, and still am. But when a doctor tells you that your child is failure to thrive you begin to question everything. What did I as a parent do wrong? When did I first screw up? Will we ever be able to fix our daughters situation? What the heck?!

    

  

Our little world was thrown for a loop. I immediately began to worry and stress. It’s what I do. When a problem presents itself, I stress. I took to the internet, Pinterest and books to find a solution. Yes I said Pinterest. You would be surprised at what you can find there. Seriously! I have found many health tips on that site!  After ready many different blogs, websites and forums, I found some answers. First off, I read that it’s not my fault that my daughter has these issues. I know you are probably thinking that it doesn’t really matter whose fault it is but as parents we tend to beat ourselves up over these things.  Secondly, I found a blog run by an Occupational Therapist who posted about children labeled failure to thrive. She described my daughters eating and other habits to a tee. Her solution? Read a book. No seriously. She suggest parents read “Helping Your Child with Extreme Picky Eating” by Katja Rowell, MD and Jenny McGlothlin, MS, SLP. It’s a step-by-step guide for overcoming selective eating, food aversion, and feeding disorders.

      

      This book was highly recommended and after doing some research, saw that it had helped many families. So I thought I’d purchase it and see what it had to say. Our doctor also recommended we see a specialist. Hey I’m willing to try whatever it takes (within reason) to help my child overcome her issues. So now we are going to be seeing an Occupational Therapist in the hopes that he or she can shed some light on what we are doing wrong or need to improve upon. I wish I could just do the I dream of Jeanie nod and make my child eat everything I put in front of her. Until then we are going to keep presenting her with different foods and try to keep her calorie count up. So far Pediasure and juice are the main go to sources for some easy calories. Sometimes she will eat fries and chicken nuggets. As always I'd love to hear your feedback! Tell me your success stories or how you are faring on your journey with FTT!