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My son is 4 and Dr. D has done an amazing job to help put all of our pieces together. We were so lost and now with her theories, everything is coming together.
My question is this. I just recently noticed that his chest is starting to cave in. Is this EDS related, should I be worried? I looked at a previous picture a few months back and there is nothing, and now, even when he stands, you can poke at least two fingers in it and it almost feels squishy on the edge. I don’t poke too much because I don’t want to make it worse, but I don’t kow what to do. Do I tell someone or am I worrying too much?
I am going to try to embed a picture of it- it doesn’t show it very clear but it was the picture I took that made me notice that it was not normal.
Source: Uploaded by user via Angela on Pinterest
Hi,
My daughter is doing the opposite – pectus caranitum, so I have read up on this a bit. That caving in is called pectus excavatum. It is EDS/collagen related. But, it is not a big deal unless it is actually causing difficulty breathing or compressing the heart. The psychological issues with a different appearance can also be significant, as kids get older.There is surgery that can be done. For the pectus caranitum, there is bracing to compress the bulge, but pectus excavatum would require surgery if it needed addressed. There are some exercises to do when it is mild, but the info I read indicated that they are not very successful.
Like I said, from what I understand, it is not a big deal but you probably want to bring it to the attention of your EDS doc. They can keep an eye on it, particularly if it is progressing rapidly. FWIW, my daughter’s is progressing rapidly too and it is quite painful. But, it is not something to get really worried about. Although, that is easier said than done and I should take my own advice! 😉
HTH!
Hi, Beth is right on this. We usually see this with Marfanism. Has your son had Marfans ruled out? If not, I’d be sure to bring it up, as he’ll want to have his aortic root checked very closely, too. Big hug, Diana
We have not, but he is not unusually tall and his arms are not longer than his height, so not sure. We do see Dr. Francamono in October. There is also another syndrome that I saw that involves the collagen as well but I can’t remember what it was. All I remember is that it scared me so I stopped looking LOL. He has what seems to be every symptom of EDS and all of it’s arms, but this one thing that is not usually seen in EDS from what I have seen. And with all of his tests, I would think that a heart issue would have been seen somewhere. He has had sleep studies, EEG’s, MRI’s, Endoscopies, Colonoscopies, plus every blood test you can think of (poor thing!).
Stryder’s body just feels so strange and I know that the velvet is EDS related but he is just so squishy, it’s hard to explain but once you touch and squeeze him, it’s hard to stop (he’s almost like one of those stress balls haha). My brother just discovered this the other day and he couldn’t stop pulling and tugging, and yes he has the stretchy skin, but it’s more than just the skin. It’s really hard to explain- and yet he is so skinny and bony looking so I think that’s why it’s even more surprising. His neurologist was just as intrigued saying he feels almost hollow.
I just picture his collagen so weak everywhere that it’s now affecting his chest too???? It seems as though his joints and elsewhere are getting so much worse, but I am starting to attribute that to his Mast Cells-but not sure. We started him on Zantec/Zyrtec and that has helped.
We have not, but he is not unusually tall and his arms are not longer than his height, so not sure. We do see Dr. Francamono in October. There is also another syndrome that I saw that involves the collagen as well but I can’t remember what it was. All I remember is that it scared me so I stopped looking LOL. He has what seems to be every symptom of EDS and all of it’s arms, but this one thing that is not usually seen in EDS from what I have seen. And with all of his tests, I would think that a heart issue would have been seen somewhere. He has had sleep studies, EEG’s, MRI’s, Endoscopies, Colonoscopies, plus every blood test you can think of (poor thing!).
Stryder’s body just feels so strange and I know that the velvet is EDS related but he is just so squishy, it’s hard to explain but once you touch and squeeze him, it’s hard to stop (he’s almost like one of those stress balls haha). My brother just discovered this the other day and he couldn’t stop pulling and tugging, and yes he has the stretchy skin, but it’s more than just the skin. It’s really hard to explain- and yet he is so skinny and bony looking so I think that’s why it’s even more surprising. His neurologist was just as intrigued saying he feels almost hollow.
I just picture his collagen so weak everywhere that it’s now affecting his chest too???? It seems as though his joints and elsewhere are getting so much worse, but I am starting to attribute that to his Mast Cells-but not sure. We started him on Zantec/Zyrtec and that has helped.
If he feels like my forearms, he may feel like dough. I wish I could help him over the internet! But alas… You’re right — you can really scare yourself on the internet, so hopefully Dr. Francomano will be able to get to the bottom of his problems and you’ll be able to relax a bit. Has he started Cromolyn? That may help him until he can see Dr. F… Big hug, Diana
We have not started him Cromolyn yet. I think his PCP is overwhelmed LOL. She did say she would, it’s a small office and actually I forgot to follow up on it. (When I call, the receptionists know me by phone number, but I like that!)
I’m glad to hear that you too have that doughy feel and yes, It is mostly on his forearms. It is so hard to explain to people, but once they touch, it’s such a great feeling. Sounds a little bad the way it comes out, but it’s just not normal.Crossing my fingers the results get here either today or tomorrow for the registry. I am so excited!
Hi, I’m posting from my phone so please disregard spelling & grammar errors…..
My son just turned 22, & has the same condition. Honestly, I never really noticed it until his PCP suspected Marfan….now EDS. It never seemed to bother him, even now. He was always scrawny…but so was I. Even after his teen years he didn’t get the muscle tone like his friends. He is still very thin.
Some things that have developed in the last few years that you may want to watch for is Scoliosis. Since I had surgery to correct mine, I have always checked my kids. His developed after puberty. He also needs to have all his teeth worked on and that seemed to developed over night as well.
We went to Shriner’s for a visit and were told that yes, he is very soft in the middle and that he may require surgery when he gets older-we have to check back in five years. If we did surgery before puberty it may come back. He also said that it may require two bars instead of just one but that there are some new techniques on the horizon that may benefit him more.
Here is a picture I took just the other day to show how much it goes in when he is laying flat.
(The Dr. did not see this).
Source: Uploaded by user via Angela on Pinterest
Wow, I was just struck by that latest pic — it looked like ME when I was younger! I never thought of my chest as going IN, but I considered the bottom row or two of my ribs to be sticking OUT (also common in EDS, I understand). I guess you know I never needed to have any surgery for it, but before I became sick and was diagnosed with EDS, I always wondered why my ribs were “different”. I know it is hard to decide what to worry about, and what to “let slide”, but it sounds like you have a great doctor. That’s HUGE! BTW, it’s so sweet that you care so much about your son, my friend. that is one BEAUTIFUL boy, BTW… 🙂
My son has been having weird rapid even gasping breathing since he was born, not all the time just randomly. They did an x-ray and found nothing. Tonight I noticed his chest was caving in while he was breathing. I freaked out and called the dr. He (what ever on-call doctor does the after hour calls) said it sounded normal and it could wait until morning to call his ped. He said of course I could take him to the ER if I was nervous about it, or if he looked like he was really having trouble breathing.
Hi Barry, I’m not sure what you mean exactly, but I wanted to mention that severe chest congestion can cause a baby or child’s chest to go IN upon attempted inhale, rather than out. Our son displayed this at week five. The pediatrician was reluctant to do anything. We took him to the children’s hospital on an emergency basis. He had RSV (a virus that can KICK BABY’S BUTT), and was hospitalized for 4 days. His oxygen saturation was critically low. I’m not saying that is what is happening with your child, but I would like us all to remember that we know our bodies and our childrens’ bodies best. If in doubt, a second opinion may be a good idea. Ya’ think? Big hug, Diana
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