I haven’t written too much about Benjamin’s Achondroplasia diagnosis lately. He hasn’t had many issues, but I decided to at least keep up-to-date with his periodic exams for those who read my blog for information regarding dwarfism and for anyone who else who happens to stumble over it. This post is a quick summary of his last appointment at his general pediatrician for his Achondroplasia 15-month check-up.
Benjamin has been healthy other than some issues with allergies. Unfortunately, that’s all too common where we live. He’s gotten over his aversion to eating off a spoon, he’s no longer gagging and vomiting with solids, and we’ve finally been able to transfer him to a cup with a soft spout. We will be working on getting him transitioned to a hard spout soon. We’ve been told that none of his past feeding issues were directly related to Achondroplasia.
Now, our pediatrician is concerned with the fact that Benjamin is not saying any words. He babbles and makes plenty of different sounds, but he does not directly say “mama” or “dada” to us. He will say “dadadadadada” etc though and he does seem to understand some of what we say to him, like his name or whenever I saw “awww lovies” he will go to his brother, Jaxon, and put his cheek on his. Our doctor told us that if he’s not saying anything clearly by his 18 month appointment, we may need to go back to Speech Therapy for actual speech issues this time. Hopefully, he will come around soon. He seems to be on the early end for learning some things, and the late end for others.
I don’t really want to go by the measurements our pediatrician gives us for Benjamin because Ben is his only patient with Achondroplasia, but they still take them, they still tell me what they are and where he falls on the chart they have, and I still worry about them enough that I go home and plot them out myself on the charts I have.
Ben’s height was 26.5″ which falls at about the 80% line on the Achondroplasia height chart for males. His weight was 17 pounds 6.2 ounces. All the pediatrician told me was that his BMI had gone up. I have a height for weight chart for Achondroplasia that I plotted these measurements out on and on that chart, he seems to be one standard deviation below average. I think this all goes to show that with Achondroplasia there isn’t any one solid chart to follow and really no way to predict where he’s going to be when he’s fully grown. I feel like we will have a much better Idea after we see his geneticist in January.
The final issue is Benjamin’s kyphosis, which is the outward curve of his spine. The pediatrician doesn’t check this. He will have this re-evaluated by his orthopedic doctor in January as well. To me, it seems to be less curved, but still obvious, especially when sitting. When he’s standing and walking he does seem to be pulling it inward which is a good sign. We are hoping to avoid having to have him wear a brace.
As always, I am super grateful for how great Benjamin has been doing. Most days I forget all about the fact he has Achondroplasia. Other days it weighs heavy on my heart and I get anxious about his future. It’s all just part of this crazy ride we all on.
If anyone has any questions, even if you don’t know a single person with dwarfism but are just curious, I am more than happy to answer them. You can comment down below or send me an email anytime!
Kelly Cardwell says
Hey! My name is Kelly and my six month old son has a diagnosis of achondroplasia. I have joined Little People of America, but am waiting to be accepted into the Facebook parents group. I was trying to learn more online and found your blog. I thought I would reach out and see if there are other groups on Facebook or any other sources to learn more in this journey. Thanks a bunch!
Lauren Vavala says
Sent you an email from [email protected]
Hi, Lauren. I’m so glad I stumbled upon your site. Our 15 month old son has achondroplasia and has major feeding issues. He was deemed failure to thrive in April and put on an NG feeding tube. With it came lots of vomiting; after 2.5 months we opted not to put the tube back in when it came out during one such episode.
He has always had a poor hunger drive and wants next to nothing to do with solids. When he does consume them, he often chokes and vomits. We’re actually seeing a GI specialist at Cincinatti Children’s next week because he vomits so frequently, even on purees and liquids. I’d love to chat with you about how you got Benjamin past his feeding struggles!
Benjamin wasn’t approved for any therapies even though his pediatrician and speech therapy recommended it. Our insurance at the time only said “some babies are attached to the bottle.” They never even addressed the fact he was vomiting.
In all honesty, it just took a combination of time and allergy medicine (he had a ton of congestion that we think contributed). He was always on the achon growth chart so failure to thrive wasn’t an issue for us. He’s almost 2.5 years old now. He still eats the purees sometimes but it’s more because we can’t get him to eat certain vegetables and other foods any other way. He’s also been diagnosed with a ton of food allergies (egg, coconut, peaches, beef, pork etc) so it’s possible that was contributing as well.
Are you a member of the POLP Facebook groups? They are a great resource for issues like this and can possibly be even more helpful! Feel free to email me at [email protected] if you want to talk more 🙂
Hello. How is your son’s kyphosis now? My son is almost 3 months with ach and I’m already seeing the back sticking out on his lower spine. I’m so worried that it’s bad already….
Hi Jane! My son turns 2 this week and while his kyphosis is still visible, it’s improving. We see his orthopedic doctor in July and will have another x-ray evaluation done then.
At 3 months old it’s WAY too early to know how it’s going to be. If he starts walking early, that will help but you can’t force it. I hope you have a good geneticist and orthopedic doctor (specialist in this exact field are few) who have told you all the do’s and don’ts to help prevent any worsening of the spine! If not, be sure to join as many POLP and LPA groups on Facebook as possible – they are BY FAR the best resource outside of skeletal dsyplasia specialists, of course!
Feel free to email me anytime!
Marie Baker says
What a little cutie! My son had a delay with talking, he said dadadadada too, and ughh for stuff. My son was preemie, 3lbs 10oz. My son however has autism, which was part of his delay in speaking, same with my nephew. My son started around 2, finally and my nephew took till he was almost 5! Sometimes they just need a little time. 🙂
My son was born a couple weeks early, but I don’t think enough so that would cause a delay. We are just really hoping it’s him being stubborn. He’s starting to imitate everything we do so hopefully he’s going to start mimicking speech too!
K. Elizabeth says
Allergies are the worst! We have both environmental and food allergies here. Praying that the kyphosis will straighten itself out. It sounds like progress has been made if it’s less noticeable. Also, my son does speech therapy. I’m so grateful for his pediatrician for recommending it. I do wish we had started earlier, but his progress has been nothing short of amazing.
Ugh they really are terrible! Ben is allergic to eggs and dog saliva as well as seasonal. Poor kid – he gets it from his daddy! We will go back in November and if he’s not talking at all then, I’m all for speech therapy. I agree with you that earlier is probably better. So glad to hear it’s helping your son – makes me feel better about possibly going 🙂