Hello, I took Matthew 4 weeks to see the OTPT at childrens hospital. He was born and seemed to eat okay for about 4 days. Then things went down hill, and I took him to the breast feeding center, he lost weight while nursing. They told me he had a recessed jaw and couldn't transfer milk. This was identical to what Maria did. He also began the vomiting reflux around that time. He has trouble swallowing on about 1/3 of his feeds (This was one of the best feeds he has done so she didn't get to see much,), but felt from the discription she said that he wasn't closing his soft palet when he swallowed. She did get to hear him grunt throuch the feed and felt that he was refluxing into his sinus (Maria did htis as well) The OTPT felt that we should take Matthew and Maria to see a cranio(sp) facial specialist. That they had a “syndrome” that could be identified. She gave us several reasons: the recessed jaw, lower placed ears, impacted toenails, and all the feeding / GI difficulties. Has anyone run across anything like this? Is there any information or suggestions you can give me? Thanks! in advance.
Tracy.

Oh, boy, that had to be hard to hear. :-(

Did she mention a specific syndrome she was thinking of, or did she merely think that some of the characteristics Maria and Matthew display might just be generally related to some sort of unnamed syndrome?

Honestly, from what you've said, I don't have any idea what sort of syndrome might be related to this and I'm not sure where to even tell you to go. I'd caution you against doing too much online research, as I'm sure it would be very time consuming and you might be overwhelmed with information that may or may not apply to Maria and Matthew. There's a lot of info. out there and I'd hate for you to scare yourself with all the "what if's" you might come across.

If you can, perhaps you could put in a call to the OTPT and just let her know that you're curious as to whether she could give you any more thoughts about her referral (i.e. what syndrome in particular she's thinking the kids may have, etc.) I'd behonest and let her know that this sort of information is a bit scary to hear and that you'd just like to know if there's something in particular she's concerned about.

Will you go ahead with the referral to the cranio specialist?

Sending you {{{big hugs}}}.

Any ideas on what syndrome she meant. I will try to research it, but i am wondering

I am not sure what you are talking about, but please let us know. Lots of ladies here to help goggle, especially Amanda the Goggle Queen. Best wishes

That is hard to hear. Did she suggest a genetic screening??? The funny thing about all the evals Sam has had---he has obvious develop. issues, yet no diagnosis, whenever someone points out small features that look "abnormal"--my healthy 3 year old or my husband and I have the same thing!

A geneticist is a good starting point, and I have found them easy to talk to.

Good Luck

As soon as a dr suggested my son might have a syndrome, I made an appointment with a geneticist to get to the bottom of it. They said he does have features that might suggest a syndrome, but they have yet to identify a specific one he might have.

Our ped suggested that my daughter had cornelia de lange syndrome, so off to genetics we went. The first genetics doc said no, and we went back to the ped, who said get a second opinion. So, we did. The second genetics doc said the same thing and wrote our ped a 5 page letter why not. That finally shut her up.

In the meantime, we mentioned all of this to our GI doc, who said that if he were her primary care physician, he would never have told us that he thinks our daughter has a syndrome. He said that is out of her realm as a ped and that she should simply have recommended a genetics consult and that was that.

With that said, I hope it makes you feel better. I think that your OTPT is not a geneticist and cannot diagnose your kids as having a syndrome.

Hang in there, I know that this is very hard.

Christyn

My husband is an Ped OT and ChristyNScott is right, they are not a geneticist, but maybe the reason the OTPT didn't give a specific name is because she saw some characteristics of certain syndromes. OT's have to do alot of evaluting and they can be the first step in identifying a problem. They can be wrong too because most of what they go on is on the physical traits. Most of these people are highly educated involving master degrees, my husband has a pre-med undergraduate in chem/bio. So he does have some knowledge of genetics. I would take these ladies suggestion and make an appointment with a geneticist. I will also ask my husband about these characteristics and post again. I really hope you son is able to eat well soon.

My husband said that some of those characteristics do suggest many a syndrome, but like everyone has said only a geneticist would be able to tell you for sure which one. My husband also said that he felt it was inappropriate for the OT to suggest that your son might have a syndrome in the first place. I hope things are getting better for you. Good luck.

Heather, I notice someone else likes frogs! Soon we will have to call this place frogsville. LMBO

Thanks Leigh!!!!:razzing: