need help and to vent

[brocksmommy]

I just don't know what to do. Ive been talking to my son ped. since (everytime I go in)brock was 3wk about the shape of his head, doc. said that it would go back to normal, well now he is 19 wks and its only gotten worst, to the point that his whole head is miss shaped. I try to keep him off that side but i do have to sleep sometimes.
so I got alittle stronger in my request that something be done. he gave me a referral to an OT about 5-6 weeks ago. after 2 wk i called the doc. the referral had not been sent. they told me they would send it. 2 wks later still no call. so I called the OT my self and they said they would call me in 2 weeks. whats the deal is this normal? I wanted to get a different ped but no one is taking new patients. who do i go to for this kind thing. what kind of doctor? there is more but this is on the front of my mind

[Chris]

It stinks when your pediatrician doesn't take care of your child. My advice is to pick up the referral from your pediatrician and hand deliver it to the OT. I wish I had better advice but have found doing things in person has a bigger and faster impact.

Do you have a social worker or service coordinator? If not, you should. I have one through community health. Although mine has a ton of caseloads, she always goes above and beyond to help.

Chris

[Emilysmom]

Hope,
Have you looked for a Down syndrome clinic near you? We have one about an hour from us, and we didn't need a referral to go there.....just called and got an appointment within a week. They had PT/ST/OT staff there to do evals all in one day, as well as any specialists we might need during that one visit.
You might want to get in touch with your local Ds association to find out if there is a Ds clinic near you. I think we have several members here who are active in the Shreveport area Ds association.

Susan

[momofrussell]

Yes.. I was thinking maybe a devel pediatrician even.... Jen, Courtney's mom lives in the area and "evansdad" too? I think....

I just sent a IM to Jen.. maybe she can post up here and talk about docs in the area... but my first thoughts were a developmental ped.... and you can even call your closest children's hosp and ask for doc referals.. or they might have a website for the children's hosp with a way to find docs that way. I live in St. Louis and if I am looking for a doc for myself and helping a parent... I can go to their website and search for docs... it's nice and helpful that way.

Good luck!!! And no.. it's shouldn't be THAT difficult to get some referrals going for your son.. and unfortunately... DS or typical child... this DOES happen and we have to sometimes get LOUD before they hear us!!! Wish it wasn't like that.. but it does happen!

A.

[Ericsmomma]

I work at a pediatric office and we do our referrals immediately. Sometimes it takes a few days for everything to get done, but a few weeks? Thats ridiculous! Someone in that office has dropped the ball.....they can fax the referral to the OT with no problem. Maybe the OT's office is causing the hold-up, but its YOUR pediatricians office that is responsible to follow up.

[wrblack]

Dunno. But I wouldn't be looking for a referral to an OT. I think I'd be asking for referral to a craniofacial clinic, like the program at St. Chrisopher's, "At the monthly Craniofacial Clinic, children with craniosynostosis, occipital plagiocephaly, and other congenital and acquired skull deformities are evaluated jointly by the program's pediatric neurosurgeon, pediatric craniofacial plastic surgeon, pediatric dentist, and oral surgeon with frequent consultation by audiology, medical genetics, pediatric ophthalmology, pediatric otolaryngology, and speech pathology.
Plans for diagnostic evaluations, surgical interventions, and other care are developed in cooperation with the child's primary physician and communicated by the Program Coordinator." Thought they had some good info on their web site but, of course, can't find it now. JMHO. --Bob

[mommygwen]

Thank goodness for portable phones!

Call Call Call.

You can also call the OT, explain and ask that they call the Dr. to ask for the referral.
The guy that makes my son's Orthotics also makes the forms that gently reshapes infants and small children's heads. He co-ordinates with the OT.
Any Dr. can write the referral if your Ped. won't.

Last month my son needed two prescriptions renewed. Only one got done. I called and faxed for two weeks. In the end I called the very helpful lady who works security at the hospital and she zoomed her wheelchair to the Dr. office and got it done.

[Jenn]

Hope..
Who is your doctor?

We don't have a ds clinic here....the closest would be Dallas and they don't take La medicaid so you would have to make a call to see if they accept any other insurances. There is one in New Orleans....if you can drive that far. Check with LSU-HSC.....They have a nice women and children's clinic they built across from the main hospital.

Louisiana DS Clinic:
Children's Hospital, New Orleans
200 Henry Clay Ave.
New Orleans, LA
Phone: [phone]
email: [e-mail]

Dallas DS clinic:
Down Syndrome Clinic
Children's Medical Center of Dallas, 4th Floor
1935 Motor Street
Dallas, TX
Phone: [phone]

Department of Pediatrics, Louisiana State University Health Sciences Center in Shreveport.
Telephone: [phone]

I put in a call to Shriners because I wasn't sure if they dealt with cranial issues...they are supposed to be calling me back.

My 2nd born had head shape issues...he had severe scoliosis and always turned his head to the right side...
so I either laid him on his belly....or propped a baby blanket under one of his sides to make him lean towards the other side....With a baby that has ds, this "should" be a bit easier because of the lower muscle tone. I would get one of those side lying things for infants and a few receiving blankets and prop away. You could even (while he is sleeping) wrap him up tight (baby bunting-but not too tight) so he can't wiggle away. Fortunately their little heads (infants) can shape and reshape for a long while. I will pm you my phone number so you can call me and we can talk. I hope this helps....
SIde note...I like LSUHSC just because the student doctors are eager too learn and help you. Sometimes the wait is a pain...but the service is usually the best. My husband goes there for his cancer treatments. My kids go there for their eye doctor and GI doc.

Good Luck! Let me know if there is anything else I can do.