**FIgBride**

StacyJYay

Sorry for the shout-out, but I have a follow-up question to your reply on my post regarding hypotonia and dyspraxia.  When you say that your LO was slow to eat solids, what did you mean -- wasn't interested? wouldn't chew? gagged? vomited?  I'm asking because my LO (9.5 months) is very averse to solids!  At any given "meal," I'm lucky to get him to take 3 bites...  (Though on occasion, he'll surprise me with 10-15 bites!)  He CAN chew.  He can swallow.  He can pick up food with a pincer grasp.  All that said, he seems to hate eating and barely does...  What's interesting is that while he's food averse, he excessively mouths his toys, furniture, etc.  Thanks in advance for any info.   

 

FlgBride

We started trying to give rice cereal starting at 6 months old. G wanted no part of that. He wasn't interested at all. I thought maybe he just didn't like the taste, so we moved on to very thin purees. I couldn't get him to take more than a bite or two, so we'd wait and try again like a week or two later. I thought maybe he just wasn't ready. This went on for months, literally.

I remember when G was somewhere around 9 to10 months old, I began to wonder if he didn't like purees......so we tried very soft 'real' food. That didn't work any better. I seem to remember things starting to really improve around 1-year old. He would eat many bites and seemed to enjoy eating. Like I said before, G was eating real meals, not just a few bites around 14 months old.

There was never any gagging, and no vomiting. He knew how to chew and how to swallow, it just seemed like he wasn't interested. Since our dx I've learned that FX kids are often slow to eat solids, but it's usually because many of them have a high palate. G's palate is normal. G also mouthed his toys, etc appropriately for his age too.

One random thought I just had is that we discovered somewhere around 1 year old that G liked bold flavors.....more bold than most baby food. I don't know if he just found most of the flavors too bland and that's why he wasn't interested or what. Since our dx, I mostly chalk it up to the fact that maybe he was developmentally delayed in that area, even though he could chew and swallow just fine (an evaluation by a SLP confirmed that).

I hope this helps! Let me know if you have any other questions!

StacyJYay

Thank you SO MUCH for your response.  Our OT mentioned that his solids aversion could all be tied up to the H&D.  So I was intrigued to hear that your LO also was slow to warm up to solids. 

Per your initial advice, I'm going to take LO to the pediatrician this week for a neurology/genetics referral to determine whether there is/what is the CAUSE of the H&D.  Thank you again for your advice and support.  I will try my best to pay your kindness forward. 

FlgBride

I'm happy to hear that you've been seeing an OT, at least your ped knows you've got some concerns about your son's development. Before G started failing his gross motor milestones, we had been to our ped numerous times expressing concerns regarding a couple of different things. G screamed like he was in pain from 2 months to around 1 year. Our ped just told us that we 'had that kid'. We also inquired about how he was not interested in eating solids. Again, he kind of blew us off.

It wasn't until G's one year appointment that he started to listen to us, especially since G wasn't reaching some milestones. At that appointment he told us that we should come back in 5 weeks to see if G had 'taken off with his gross motor skills and if not he'd refer us to a dev. ped. We went back in 5 weeks and he immediately referred us to neuro and genetics (skipping the developmental ped). At that appointment he threw out that he thought G might be affected by fragile X syndrome. I thought he was crazy and I was pretty ticked that he threw it out like he did (in hindsight, I think I was more upset with his bedside manner than anything). Both my husband and I are in science and we both knew a little about FXS.....I just didn't see it, but I know of it from a genetics perspective and not clinically.

 Okay, I've probably written way more than you'd like to know! Good luck and keep us posted!

FYI, it was a 3 month wait for both our genetics and neuro appointments. It was a long three months!

StacyJYay

I'm sorry that your doctor wasn't more sensitive!  Docs need to understand that the sun rises and sets with our children, so they need to be careful with what they say and how they say it. 

When you say that your LO wasn't meeting some milestones, were any such milestones social/communication?  Our son seems to be lagging in those.  The OT thinks it's related to the H&D.  

FlgBride

Yeah, we switched peds in November after he told me that 'they'd be looking at these things called chromosomes' for the microarray that was done at the same time as the FX DNA test. I have a PhD in molecular genetics and he knows that.....  Know your audience! LOL.

At 9 months, G was right on track with the social/communication milestones. I assume that you are referring specifically to smiling, laughing, eye contact, babbling, etc. Right? It's only more recently that  G is officially speech delayed. He only has 5-7 words that he uses fairly rarely. Although it seems lately as though he might be starting to use more words more frequently (fingers crossed). The majority of FX kids are speech delayed, some quite severely......so we kind of expected it.

I'm curious as to which milestones you are referring to specifically, if you don't mind me asking. 

StacyJYay

I can't believe your doc was so condescending!  I'm sorry you went through that. 

I was referring to imitation and gestures (waving, clapping, pointing).  I know these are technically 8-12 month milestones, but my LO (at 9.5 months) isn't do any of them...  Our OT said this is likely due to the hypotonia/dyspraxia, but I'm not sure.  

FlgBride

We know of about a dozen or so families that have also switched from that ped to another. He's just a tiny bit arrogant.

G started clapping at 10 months old, pointing around 11 months old, and waving around 13 or 14 months old. To me, it sounds as though doing those things late could mean motor planning issues. I believe that could fall under motor dyspraxia, right? I don't think that doing those tasks has anything to do with hypotonia, but I'm not sure. Your OT would know more about that than I do, for sure.

Does your little one crawl? How does he move around? Easily? Clumsy? Poor balance? Has he started pulling up yet? G definitely has motor planning issues. For him, this presents mostly as having poor balance and trouble moving around. It frustrates him quite a bit.

StacyJYay

LO started crawling just before 9 months and pulling up one week later.  He crawls well (albeit slowly).  He's been pulling up for 2 weeks now and still falls quite a lot.  The OT did mention dyspraxia...  I'm left wondering though -- how does someone diagnose H&D after observing LO for just an hour?  Is it that expert eyes can just "tell"? 

FlgBride

I'm a little puzzled as to why your OT mentioned dyspraxia. Is it because he's not eating a lot of solids? I thought that most professionals didn't worry too much about that until after the age of one unless there's trouble with chewing and swallowing. If your son is crawling and has started pulling up, it wouldn't seem as though there are motor planning issues. And, he's still in the 'milestone window' for waving, clapping, and pointing.

Has your ped mentioned anything to you about hypotonia or just the OT? The only person that mention to us that G had very mild hypotonia was the geneticist. It was never mentioned by our PT, OT, neurology, or our ped. I took that to mean that it's very mild and that she would detect it more readily than a pediatrician since she sees it way more often.

If your ped hasn't mentioned H & D to you, then I would ask him or her and tell them what the OT said. Something sounds off to me.

What does your gut tell you?

StacyJYay

We went to the pe yesterday to discuss the hd diagnosis from the PT. she was surprised and didn't see it... She referred us to a neurologist and a feeding clinic. We're already on the wait list for a developmental pediatric eval... More specialists and waiting. My doc thinks a lot of Los quirks will work themselves out in the coming months but she's being very proactive nonetheless. Thank goodness!

FlgBride

That sounds like a good plan!