Welcome to my new blog!

Monday, April 18, 2016

Fighting Misconceptions, and New Revelations

Happy New Year (a quarter of the year in hah)! I haven't posted since December because... well... with two littles so close together my hands are FULL!! Also, honestly I have started this post at least 10 times and just can't seem to get my thoughts put together... so here I go giving it a try.

Just a fad?? First of all, I want to address a notion which has been floating around the internet that lip/tongue ties are just a 'trend', and are not a 'big deal'. Some people are claiming this all started when pediatric dentists and ENTs decided to diagnose every child they run into with a tie, and that ultimately that are aiming to make a profit by attempting to perform surgery on any child whose parents are willing to give surgery a try... um, that's LUDICROUS!!!  For a full rebuttal from one of the most well-known specialists on the topic, read the blog post below from Dr. Ghaheri. Actually if you want to learn everything you could possibly want to know about ties, spend some time on his FB page. This man has tirelessly gone to bat for parents like my husband and I, and I'm so grateful for his heart to vouch for us and help so many kiddos!!

Clarification: Yes, on the spectrum of ties there are kiddos that if on the mild end, do not ever experience complications. I hope and pray that most kids fall on that end. However, my child was not one of them. Later in this post you will see where we are now, but suffice it to say things still haven't gotten significantly easier. Not to mention that I realized as of July we will have been to 100+ doctor/therapy appointments, all tie related, in a years time. OVER 100!!!!!!!!! I'm not bragging and I don't want anyone's sympathy, I am just mentally exhausted... and when my husband pointed this out I finally realized why. A third of those appointments were when I was pregnant, and the rest have been after I had Julia.  I've been toting a newborn around for every single one of her brother's appointments since she was 4 weeks old... If someone tells me that ties are just a trend, and kids 'grow out of them' I would like for them to come walk a week in my shoes. No, my son doesn't have a chronic disease process, but the side effects from his ties that weren't addressed early on have been significant. Our day in and day out is more complicated than the average normal toddler's life, and it's ok I wouldn't have it any other way... but when people undermine the struggle by questioning the impact this has, it's beyond frustrating. Also, there are mothers out there who have gone to battle with physicians over why their child can't eat, and are sitting in a hospital room right now with a child on a tube feeding because no one could identify they were simply suffering from very restrictive ties. Try and tell those mothers it's just a trend! Anyways, I digress... Thankfully that is not our situation, but the lack of education out there is just mind numbing, and it only adds to the frustration families who are dealing with these issues feel. Rant over.

A Revelation: Something else I find interesting is, that I started this blog to promote healthy families,  and chronicle what it's like to actually raise healthy children in the obesogenic society we live in. From Noah's birth, I have relentlessly tried to raise up a child who is healthy and loves to eat a variety of healthy foods including vegetables. My goals have been to help prevent obesity (which runs in my family), decrease the risk of chronic diseases, and promote a good quality of life for him. I realize now most of this blog has transitioned to being mainly about my kiddo's issues with their ties. However what I recently discovered is, this blog actually chronicles the struggles us families deal with when trying to parent a child with ties. It has been an interesting, and exhausting journey and I have literally tried every single thing I could imagine to help him. There are many days it would have definitely been easier to result to Pediasure exclusively, but I absolutely refused to let it happen that way. If you look back I was working around all sorts of issues with texture, food pocketing, stuffing, reflux, gagging, and overall food rejection that unknowingly was caused by ... STUPID ties. WOW, hindsight, sure is 20/20. Anyways, to get caught up on the lip/tongue tie journey without having to start from the beginning, go back to the October Archive & start here: http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html

A Must Read: Moving on, I've been reading a REALLY phenomenal book that our speech therapist gave us, and it has changed our life. This book is absolutely amazing. I plan to write a separate blog about some of the amazing tips they have for picky eaters, but I'll leave that for another time. This book was written by lots of very qualified people, and it is legit. It is very well written, easy to read, and just over all extremely informative and helpful. Definitely worth purchasing for most parents whether you have kiddos with ties or not.

Our Newest Discovery... Sensory Processing WHAT??? After reading through this book I stumbled across a  concept I had never heard of before. Anyone ever heard of 'Sensory Processing Disorder (SPD)'? Apparently it isn't a new concept, and most people even adults deal with sensory processing issues on some level actually, however in some individuals it is more pronounced. This is more present in kiddos with certain learning disabilities,  and yep you guessed it...ties. The good news is that this isn't something that will plague you for the rest of your life, but it can definitely impact how a person interacts with the world day to day. See the pictures below for a better explanation than I could ever give.

You may be thinking... hmmm the average 2 year old might have some of these issues in general on most days. However with kiddos who are truly dealing with SPD, it is a constant problem, and affects a significant amount of their daily functioning. 

Note the picture below. According to the book it is necessary that a baby master suck>swallow>breathe very soon in their little life. This is actually one of the first fundamental developmental milestones a baby must master if they are going to progress to other milestones appropriately. If suck>swallow>breathe is never conquered, then a negative developmental chain reaction could occur, see the 'end products'.  This is where the sensory processing issues are born.

Now when I read about SPD I started putting the puzzle pieces together and had an epiphany. Most people who meet Noah look at him, and see a fairly normal 2 year old. However, as a mother I was really starting to see some changes in his personality that I took note of. A few things out of the normal for him were the following: he was starting to have a hard time transitioning into any situation familiar or new, he was pulling away from his friends at times, he was very very frustrated especially since his speech was so delayed and his tantrums were long and frequent, at times he was incapable of calming down and getting emotionally grounded for hours, his speech therapist was also spending a lot of her time trying to work with him on things that weren't speech related to get him to a place where they could finally focus on speech. To quote frenectomytoday.wordpress.com "others might develope a speech impediment that could affect not only the normal development of their personality and self-esteem, but also their education and their whole life." This was my baby boy... he was beginning to slowly lose his joy, and the daily frustration was infiltrating every aspect of his life. Luckily when I discovered SPD, it appears I finally had an ANSWER!

I brought up this concept to our speech therapist (since she gave us the book) and she confirmed she believed he might be dealing with this on some level. So within a week we were in Occupational Therapy and started down a path to help him with suspected sensory processing issues. From how I understand it, I suspect this is the flow of how things got jumbled for Noah.

1.) Couldn't master suck>swallow>breathe for many months after birth. 
2.) Led to poor breast feeding, daily on-going reflux, poor weight gain, tough transition to formula bottle feeding, and ultimately early breast feeding weaning. He was also underweight for first 4 months of his life.
3.) On-going significant reflux, then poor transition to solids.
4.) Stuffing and pocketing even as a baby which led to under developed cheek muscles. I even have a blog post video that documented his 'stuffing' which is still a problem today!
5.) Choking/chewing swallowing problems from early on, and aversion to normal textured foods. 
6.) Significant language delay.
7.) On-going daily frustration with every task and strain on relationships.
8.) Eventually pulling away from friends, and groups of people. 
9.)Daily frustration with normal tasks, communication, and difficulty learning new things. 
10.)Difficulty focusing enough to benefit from weekly speech therapy. 

Which Leads Us to Today: After an evaluation and confirmation that he is significantly behind in many gross motor areas, he is currently in occupational therapy, and speech therapy twice weekly. The combination of the two have really been impactful, and thankfully the Lord provided 2 amazing therapists that Noah connects beautifully with. These 2 women are advocates for us, and are fighting to help him. I'm so unbelievably grateful for people who actually UNDERSTAND what is going on with him. Gosh, it felt like I was speaking a foreign language to so many people for so long... Thankfully we are finally on a path towards getting him the help he needs, and I'm very confident he will be caught up before he even starts kindergarten. Some days are better than others, but when we have good days and I can keep his sensory stuff at bay, his joyful sweet little personality overflows and we are all so happy. I'm very excited about his future also, and being able to tell him what a little fighter he was. I know the Lord couldn't have possibly let this all happen for no reason... 

If you have a kiddo who you think is suffering from a tie, please consider contacting Dr. Julie Martinez in the Woodlands. She is compassionate, patient, and will be your advocate. She won't talk you into anything, and will listen to your story and help you develop a plan that your family can live with. Here is her contact info. 

Dr. Julie Martinez
9006 Forest Crossing Dr, The Woodlands, TX 77381

Hope this helps someone out there, and above all things the parents who are struggling with this issue know they aren't alone. 

P.S. I have great news about Julia's tie journey, which I will cover that in my next blog. 

Love and Blessings,
The Veggie Momma

No comments:

Post a Comment