If it nots one thing its another....

[c0urtnee]

Okay, at first my thoughts of syndrome related to scaphocephaly were explained away by the unlikelihood that it can occur.
Then he got croup.
which led to two ER doctors saying he had "floppy airway."
The pediatrician disagreed, says its reactive airway disease. then asthma. now fluid in the ears.
Which if this 3rd antiobiotic doesnt clear his ears, he's getting tubes during surgery.
i cant understand how any of this causes constant congestion. except many doctors online seem to think that floppy airway does. -- but they're online.
Okay in the car ride home today, Jack got very upset and of course im driving so i cant do much -- and then he started breathing really funny. Looking back I think maybe an asthma attack. scared the bejesus out of me!!! He was breathing, but it was labored. He has a preop with the pediatrician friday, so we'll talk more then about everything.
Every syndrome I read about he has some signs. But none are like OMG thats it. I guess I really just need to push someone to refer us to a geneticist. Someone who sees these signs on a regular basis -- unlike my pedi, whose only seen a handful of cranio. and the NS is only there for the surgery. he doesnt give a crap about anything else. He isnt there to diagnose him -- just fix him. im paraphrasing, but thats about what was said. (followed by a bit tongue from trying not to cuss him).
Is a geneticist who I should see? Who have some of you seen? I see some parents have been to ENT doctors also.

Any thoughts?
Wish us luck! surgery will be over this time in a week. I literally have a migraine from anxiety and nervousness and im SCARED!

[c0urtnee]

yes i see i screwed up the title. sorry guys. Im not an idiot!!! Like i said, I have a migraine.
heheh

[Jennifer]

Had to go reread it to see the screw-up in the title- and I don't have a migrane or stress to blame it on :lol!

With everything you mentioned- I'd want to see a specialist- not sure what kind, but I think it would help. Your NS should be able to refer you to a genetesist (sp?) and is ENT-Ears Nose Throat Dr? (I suppose I should know that?) If it is, it may not hurt to see one as he's having trouble w/ his ears that doesn't seem to be going away.

He'll do amazing during surgery- I know it's scary, but he'll do well- it's way harder on us that it is on them! :hugg :hugg

[craniomommynbaby]

Hi! My son saw an ENT (Ear, Nose, Throat Specialist) when a persistent ear infection lived through 3 rounds of antibiotics. It is very common for cranio kids to have problems with ears, sinuses, eyes, etc. As the skull grows incorrectly, it can cause other things to become misshapen and then not work properly. I don't know if my son's ear infections were related, though.
I don't have any experience with lung problems, but my son's cousin was premature and sees a pulmonologist. She was born 2-1/2 months early and now has lung problems. She has had breathing treatments in the past, and they are always afraid to let her cry too much. She is getting ear tubes soon as well, but that is through an ENT because of ear infections. The pulmonologist is suggesting that her adenoids be removed at the same time. It seems like the doctors work together, in a sense.
I have no answers for you about if Jack's troubles could be syndrome related. A geneticist will sit down and take a detailed family health history. Then, you can have blood drawn for testing to see if any of the known syndromes are found. Those tests are not 100% accurate, and some syndromes are still mysteries. It does not hurt to see, especially if you are concerned about other anomalies popping up. Also, if he does have a syndrome, then it will be nice for him to know (if possible) before he has kids of his own.
It sounds like you have quite a bit to deal with. It is too bad that the ns does not have a good bedside manner, too. I hope you get more answers soon.

[c0urtnee]

thank you guys both so much for listening and helping with this. I wonder if you can just call a geneticist. I dont need referrals for my insurance, so I may just go on my own. Just for peace of mind. The ENT is a must anyways. Once he recovers from surgery I am taking him. It seems to me that he should have seen an ENT by now, especially since the pediatrician ordered tubes to be put in his ears -- seems thats something the ENT would do, no?
Thats the only reason I want to check, so that if he had children he knows the possible risk of passing it on, even if in his instance it would be mild -- a severe case of something can come up with children too.

Do yall think im overworrying??? I have a tendency to do that!!

[Matthews Mommy]

I will keep you in my prayers, I know how that feels take one day at atime and breath...slowly! I always get hit with so much at once.:icon_mrgr