We have now added yet another specialist to the group.
Orthodontist.
"Not a big deal" you say? "Many kids need braces" you say?
It's true that, in the scope of things, this is not really a huge deal. Or, at least it wouldn't be if Paige just needed braces, or if she didn't have sensory issues or if she had a few extra pounds on her so she won't be even more dangerously thin when she looses a few pounds after all of the work that will be done in her mouth.
Prematurity has, yet again, left its mark on my precious baby. She has escaped the stained teeth and enamel hypoplasia that some preemies get. But, she has a high palate and small facial structure. She will need a palatal_expander and appliances on her lower jaw. Her teeth are coming in where ever they can. She has pressure in her mouth. What she is feeling now will pale in comparison to what she will go through when she gets her expander. I know she will not eat for days. She will cry.
Last year she had a ph probe (tube down her throat), for 24 hours, to measure her reflux. She didn't sleep. She barely ate. She cried. The worst part, according to her, was the feeling of the tube in her mouth.
How in the world will she manage with the expander in her mouth?
I've been very emotional over the past few weeks. Paige's anxiety is better, thanks to finding a med that works for her. She still has mental health issues but at least one part of it is better. Yesterday she said to me, "some days I wish I could be normal." She feels it. No matter what I do to protect her, she feels it.
Why can't I hug away the pain in her life? Isn't that what a mother is supposed to be able to do?
Orthodontist.
"Not a big deal" you say? "Many kids need braces" you say?
It's true that, in the scope of things, this is not really a huge deal. Or, at least it wouldn't be if Paige just needed braces, or if she didn't have sensory issues or if she had a few extra pounds on her so she won't be even more dangerously thin when she looses a few pounds after all of the work that will be done in her mouth.
Prematurity has, yet again, left its mark on my precious baby. She has escaped the stained teeth and enamel hypoplasia that some preemies get. But, she has a high palate and small facial structure. She will need a palatal_expander and appliances on her lower jaw. Her teeth are coming in where ever they can. She has pressure in her mouth. What she is feeling now will pale in comparison to what she will go through when she gets her expander. I know she will not eat for days. She will cry.
Last year she had a ph probe (tube down her throat), for 24 hours, to measure her reflux. She didn't sleep. She barely ate. She cried. The worst part, according to her, was the feeling of the tube in her mouth.
How in the world will she manage with the expander in her mouth?
I've been very emotional over the past few weeks. Paige's anxiety is better, thanks to finding a med that works for her. She still has mental health issues but at least one part of it is better. Yesterday she said to me, "some days I wish I could be normal." She feels it. No matter what I do to protect her, she feels it.
Why can't I hug away the pain in her life? Isn't that what a mother is supposed to be able to do?
21 comments:
Stacy,
I wore a palatal expander for 4 years while I was growing up. My palet was every narrow...so narrow that I couldn't put my tongue in the roof of my mouth. Now, my former 27 weeker has that same palet, which I'm sure wasn't helped by being vented either. I'm sure this will become an issue in a few years for my DD. Thanks for bringing up this issue.
Now, this may sound incredibly stupid. I remember thinking it was stupid advice at the time when I got my expander. The dental assistant told me to pant like a dog when the expander was bothering me. My mother had explained to her that I had issues...which weren't labeled SPD then, but now would be. It really worked for me because it forced me to take my tongue off of the expander. Hope this helps a bit for Paige. I can't claim to be an expert on this, but thought I'd share.
Jen
Just thought I would add my two cents here. I've worked in dentistry for many years, and yes panting like a dog does work. We usually suggest this to individuals who suffer from severe gag reflex (sensory issues)
If Paige had feeding issues due to her high palate than this just might work for her. She will have to have molds of her mouth taken for her expander, so practising this technique ahead of time might help her out. During the mold taking appointment have her put her head down towards her chest and pant/breath heavy through her mouth or nose.
I have worked with individuals with severe gag reflex's. some of them are so bad, they gag at someone just coming close to them. The adults are always amazed that someone never suggested this to them in the past. The parents of children are amazed that their child actually didn't vomit during a dental appointment.
Hope this works for her.
Good Luck!!
Well, my one preemie will never tolerate this so he will not be getting braces. The other has a consult tomorrow. I don’t like palate expanders and I will probably refuse to get one for my son. I know that when I had my orthodontics done, it was an option. We refused because I had/have rather fine features. So I was told. The dentist told my parents that it would give me an “Osmond” smile. Nothing against the Osmonds but when they smile all you see are their teeth.
Now, I would be inclined to do one with my son since he has a thin face and this would round it out a little. Also, Medicaid won’t pay for extractions for orthodontics so we will have to pay for that. But, I will listen to the ortho with an open mind tomorrow.
Oh. Our Medicaid HMO had refused to pay for medication management with the result that my son has not seen a psychiatrist for 7 months. I finally had a hearing before a judge today who was incredulous that it had gotten this far. Out state law ands the HMO contract is clear that we are entitled to 20 outpatient visits for medication management. So, we won!!! This is the same HMO that fired me for finding a ½ million-dollar fraud case involving one of the employee’s cousins. This employee was instrumental in getting our denial and the subsequent refusals to overturn the denial and the grievance and appeal level. However, I can’t prove it and she is one of the golden children there. But, we won anyway!!!! Loved to hear the judge say that he couldn’t understand the problem, that the law and the contract were clear. Why were we here? Especially upset that I had gone through grievance and appeal and the situation not fixed.
Don’t mess with my kids. I will f*** you up!!!!
Thanks for the suggestion Jen and Anon!! I passed the suggestion along to the preemie-child support group also.
Paige doesn't so gag as much as she just hates things in her mouth. I'm hoping the panting will help that issue too!! I think she is going to refuse to eat, which in her case, is not a good thing!
Twinsx2... you go girl!! Insurance sure is an issue that we all deal with way too much!! Sounds like a good topic to post about.. more coming soon!!
twinsx2 said, "I will f*** you up!!!! "
Classy.
HOLY cow... Ty has some MAJORE dental issues. His front teeth are Chipped and he is not even two. They just got in but I am NOT looking forward to the next little bit. I don't even know where or how to go about it.
Hi Nancy,
All of Paige's front baby teeth were/are chipped. She also has holes in her back teeth from reflux.
No fun.
Stacy
Our major preemie dental horror didn't have to do with orthodontics (thank heavens!) but filling teeth.
Ed could not be coerced or drugged into submission for procedures in the dental office, so we finally had to opt for the Children's Hospital OR and general anesthesia to examine, x-ray, and fill several teeth. We have no dental insurance.
I wanted to add... one thing that has really helped Paige over the years is the fact that my MIL is a dental assistant. Before we moved, we brought Paige in as much as possible. She even used to assist when hubby and I had easy stuff done.
I realize this is not possible for everyone but I do suggest getting in to the dentist as much as possible. The more exposure your child has, when there is not any work being done, the better.
Helen,
Two of mine need to be put under for cleanings and work. One of the 4 year olds just had 3 crowns due to his sesnory issues and not wanting to brush his teeth. He must have figured out the connection because he now brushes several times per day! Thankfully Medicaid pays for this. We have made 3 trips to the hospital for dental work, usually just cleanings and detailed exams.
Now that my twins are adults, both have no dental insurance. One of my girls has to be hospitalized under general to have a teeth cleaning/filling, repair done - do you know how hard it is to find a dentist to do this?
My other daughter had the dreaded pallete expander for a couple of years - I wonder if the narrow "preemie head" that so many of our kids end up with contributes to this obviously common problem. . I remember when my daughter first had the palette expander, I asked the dentist if this was due to her being a preemie - he said no. . this was 10 years ago, I wonder if dentists feel differently about this now. .
And yes! The panting like a dog works for gagging - try it sometime when you have to have a throat culture done - it works!
I have heard that oral intubation can cause a palatal groove, but I think the narrow palate is probably due to "preemie head."
Dear Stacy,
How often I have wished the same thing? Why can't I just make the pain stop? Why can't I make his life easier for him? Right now, we're struggling with tube feedings. He so desperately wants to eat by mouth, but every time he gets a solid mass in his mouth he starts to choke and gag.
I know we'll have dental issues down the road. Fortunately, we found a very compassionate pediatric dentist in our area who has several clients with special needs. She has seen Max a couple of times and, each time, has been incredibly respectful of his oral sensitivities.
Take good care,
Heesun
I will be thinking of Paige these next few weeks.
I'm not a dentist but have the treatments changed so much since I was a kid? I also had a small palate and in my case, the solution was to extract 4 teeth simultaneously. Horrible day, but at least I was spared the expander. Has your dentist considered other options?
And a belated thanks for the thogger award. I'm back from Ladakh and have updated with a post of blogs I nominated. I'm looking forward to re-entering the fun and fascinating blogosphere.
And how can you blame everything on being a premie? Being born premature does NOT make you more likely to have every affliction known to mankind. Any evidence you would like to share would be appreciated.
Thanks
I have a premature baby. We do not treat her different than her brother. Once you put a label on the children they will alway have one. If your children are over the age of one and you are talking open about them to others and everything wrong with them of course they are not going to feel normal and as a child they will wonder what is wrong with them.
Twinsx2--I hope you do not talk like that around your children. Not very classy.
Great sharing about the condition I hope that people can help each other learn more about the issues of a high palate. I wish you and your baby all the best!
wisdom teeth extraction
What you said in the end can actually make a mother sad... It's enough that a mother is always by her child's side. But what more can a loving mother ask for than to take away her child's pain, right? Good thing you found something that worked for her. How are both of you now?
--Bianca Jackson
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