Pectus - sunken chest???

[Momof2Boys]

Today we saw a new pediatrican, she told me that Justin has a sunken chest, called it a pectus. She said it was nothing to worry about and they do have surgery to correct it for cosmetic reasoning. Ok, if he didn't already have cranio, I probably would not worry about this. But he already has me worried about his head so I wonder if they are both defects are they related??? Of course I googled it and Shprintzen-Goldberg syndrome pops up. I wonder if I should get a gentic test done?
I am getting worried about his head again. He had surgery almost 2 years ago, and the NS said that as he grows his head shape will improve after his surgery. Well, it really has not gottan better. I am seeing the right side becoming flatter and the ridge is back. We saw the NS in July and he didn't seem worried, just watch and monitor. I am thinking about calling the craniofacial surgeon for her advice since we have not seen her since last year. After hitting his head a week ago on the door frame, he has been complaining about his head hurting and waking up all night.
:dunno Just tired of seeing all these doctors and not getting any answers.

[joshuasmummy]

hello jamie so sorry you are having these extra worries. your story in some ways is alot like mine. josh had surgery two years ago for sagittal and after surgery his head shape became very narrow at the temples but his surgeons just kept saying it was fine. april of this year we were finally listened too and josh has now been diagnosed with metopic. my advice to you is if something doesnt sit right with you then keep pushing for answers. my mummy instinct was right. Sorry no advice on the sunken chest but again same sort of problems. josh has clinodactyly of the 5th fingers but surgeons just said its another defect thats not related to cranio. now josh has multiple cranio, clinodactyly and another new problem (abnormal hair growth) the hospital want genetic testing to be done. so again push for it if your are worried. you must be thinking like i am, these different things have got to be related, too much of a coincidence for two seperate things to happen. keep me posted x

[*jules*]

Jamie, I'm so sorry. This has really been a crappy year for you and I hope things turn for the better in 2010! I have no idea what to say, except if you're really not comfortable with the NS advice, contact the CFS. I would think she would have more experience to judge what's going on with his head anyway. Perhaps mention the Pectus to her as well. However, if you see her and still don't feel right about just waiting and watching, get another opinion. Your surgeons don't even have to know and if they agree with what your docs are saying, then it'll make you feel more confident in taking their approach. Hugs and keep us posted on this.

[Sam Y]

Aaron also has pectus and we also have been told it is "normal" and nothing to worry about. Reading all these syndrome threads though I am really beginning to think it is all related, it seems to much of a coincidence that he has so much in common with all the little babes on here

[Momof2Boys]

The doctors say it is all normal things kids have but I am asking myself why? Why does my child have several things going on. We did do a gentic test and it all came back normal. Which is good but still leaves me some unanswered questions.
All we can do is keep pushing for answers.

[Jax's Mommy]

I remember a kid on the school bus when i was little had the sunken in chest. I dont remember much about it but i remember seeing it! He was a normal kid just his chest was sunken in.....IDK!?

[Leighasmom]

The doctors say it is all normal things kids have but I am asking myself why? Why does my child have several things going on. We did do a gentic test and it all came back normal. Which is good but still leaves me some unanswered questions.
All we can do is keep pushing for answers.

I wonder the same thing. Leigha has cranio all through her dad's family history and genetic test were clean...hmmm more testing as more research is found.

[Nezzy]

I dated a guy in college that had that. I still thought he was hot.

[craniomommynbaby]

My FIL has that. In your research, what other things can pop up with it? I am curious now, because my FIL's family has some distinctive features including huge ears and heads (but no cranio).

[Momof2Boys]

When Justin saw Pat Ricalde last year, I mentioned the pectus and she said that Lambdoid often has some other type of abnormality: like pectus, cleft palate (my grandmother had), extra digits or club foot.
Normally surgery is not needed but I did have a co-worker who had surgery done for hers when she was a teenager. She had some issues I believe with her lungs. Which I often wonder if it has anything to do with his asthma or breathing issues. ??????

[momof2withcranio]

Jaime, I love dr. ricaldi.. she is amazing and great with the kids.. I am so sorry that you are having the other issues coming up.. sending lots of love and hugs to you guys.. call or txt me if you need to.. give the boys a hug from us..

(we dont have any experience with this sorry) just want to let you know we are here for you!!

[Avery's Mom]

When Justin saw Pat Ricalde last year, I mentioned the pectus and she said that Lambdoid often has some other type of abnormality: like pectus, cleft palate (my grandmother had), extra digits or club foot.
Normally surgery is not needed but I did have a co-worker who had surgery done for hers when she was a teenager. She had some issues I believe with her lungs. Which I often wonder if it has anything to do with his asthma or breathing issues. ??????

Yep....Avery had a complete bilateral cleft lip and palate and also has slight pectus too. We too have the asthmas and breathing issues but nobody seems to think they are related.

[craniomommynbaby]

On the topic of Dr. Ricalde, did you guys hear the news?

[Avery's Mom]

On the topic of Dr. Ricalde, did you guys hear the news?

What?

[Sam Y]

Aaron has these episodes where he becomes very blue and his breathing is really erratic. The pectus looks really bad when this happens. At the moment it is undiagnosed and awaiting investigation but I do wonder if they are in some ways connected to another after reading your posts? So many whats, ifs and buts, and no answers. Completely frustrates me :sigh

[Avery's Mom]

Aaron has these episodes where he becomes very blue and his breathing is really erratic. The pectus looks really bad when this happens. At the moment it is undiagnosed and awaiting investigation but I do wonder if they are in some ways connected to another after reading your posts? So many whats, ifs and buts, and no answers. Completely frustrates me :sigh

If Avery gets even the slightest cold it seems to go straight to the chest and the retractions start....where the chest really sinks in when he tries to inhale......It makes me nuts.

[Momof2Boys]

What is going on with Pat Ricalde?

Justin has had times especially when he was little I can see that his upper lip area turns slightly blue. I took him to his first pedi and they chalked it up to reflux. ???? Though by the third pedi we saw did I find out about the pectus. Justin too gets colds and it goes right to his chest.

[Avery's Mom]

What is going on with Pat Ricalde?

Justin has had times especially when he was little I can see that his upper lip area turns slightly blue. I took him to his first pedi and they chalked it up to reflux. ???? Though by the third pedi we saw did I find out about the pectus. Justin too gets colds and it goes right to his chest.

Yep...Avery too. Are you guys using any inhaled meds for him? We use a nebulizer twice a day regardless with Pulmicort. Then Albuterol as needed when he is actively wheezing or sick.

[craniomommynbaby]

She had a baby. :yipee

When I contacted her about Simon's defects a couple of months ago, she referred me to Dr. Ruiz. I waited a while and then drove to Tampa to see her recently. Her 7-week-old daughter was in the office with her. :adore

I had no idea that she was pregnant. I am happy for her, because I think it will give her a new dimension to her role as a surgeon. She was outstanding before, but I think that it will give her an even better idea of what it takes for us to entrust our little ones to her.

[Avery's Mom]

She had a baby. :yipee

When I contacted her about Simon's defects a couple of months ago, she referred me to Dr. Ruiz. I waited a while and then drove to Tampa to see her recently. Her 7-week-old daughter was in the office with her. :adore

I had no idea that she was pregnant. I am happy for her, because I think it will give her a new dimension to her role as a surgeon. She was outstanding before, but I think that it will give her an even better idea of what it takes for us to entrust our little ones to her.

Cool!

[Momof2Boys]

Oh Wow! That is awesome! We saw her last October. She is worth traveling two hrs for us to see. We go back to see her sometime next year.

Right now Justin has not been on any allergy/ asthma meds since last month. Once he got his first chiropractic adjustment his barky cough went away and his chest just sounds loose every once in awhile. They say it helps open up their lungs. It has been three weeks now with no meds beside his reflux meds. The real test will be the winter time.

[craniomommynbaby]

I am so glad to hear that the chiro is working out for Justin. Chris and I go to one, but Simon does not see her yet. I am thinking about starting him soon to see if it helps with growing pains and such.