OT & SLP & The Dog With Fleas

I wrote to our SC at RC to ask about getting OT and SLP for Jack - er - William. I'd gone rounds with his doctor Tuesday trying to get him to write something on paper so that RC would consider it. If I get a written request from his doctor and RC denies it, then I have a foundation for appeal. I can argue my request and quite possibly win. But this doctor insists that "There is no evidence that SLP before 18 months is of any benefit. And if he is already getting PT that is enough. The RC will determine what he needs." And here I thought that his doctor was supposed to do that? Well - not this particular doctor, no. I argued repeatedly that "The Down syndrome community advocates..." to which he interrupted every time and said, "The Down syndrome community are not the experts. The medical community are the experts!" Oh really. A massive group of people dedicated to finding the best therapies for their children with Down syndrome are not the experts? On what flipping planet??? I argued that there were numerous studies that prove that many of the problems and pathologies of the mouth and structures of the mouth associated with children with Down syndrome are developed during the early months and that every measure should be taken for prevention because extensive therapy later cannot undo the learned behaviors completely, that waiting until William is 18 months old will be like trying to unring the bell. He wouldn't budge. He did say he'd write a referral for Will for their speech clinic, but he doubted they would even consider seeing him before he was 6 months old. Once I got out to the car I noticed that of the four recommendations he wrote, #3 for speech was crossed out. Obliterated from the page. Ass.

#1 was that I start feeding Jack cereal. And it was his answer to the fact that now that Jack has been switched to a soy formula his tummy is much less gassy but now he's constipated. His answer was to feed Jack 1 ounce of diluted fruit juice daily and start cereal. I said that he was unable to hold his head up on his own yet, that I didn't think he could eat anything safely yet. He said "It does not matter that the baby does not hold his head up. Feed him cereal." Yeah...that's going to happen. NOT! He'd asked if I was giving Jack any kind of medication. I told him I was giving him simethicone for his gas, infant simethicone. "Stop that. It is not recommended. There is no proof that it helps with gas. It causes seizures in babies." I also said I was giving him 1/4 of an infant suppository every few days so he could poop. He said, "Stop that. It is not recommended. There is no proof that it helps babies poop." I swear I was waiting for him to say it causes seizures in babies. I said that I only gave him one quarter and that it stimulated his bowel enough that he pooped it out with a rope of stool within seconds. "Feed him cereal." I thought about going down the road of Celiac disease, common with Ds, with the cereal, but why bother? This doctor does not want a mom who knows anything or questions anything. He wants a mom to listen and do what she's told no matter if it flies in the face of good judgement.

#2 on the list was for an opthamology referral. I'd asked him to check Jack's nystagmus 2 months ago. He gave one attempt and gave up. Today he could see it and wrote for a referral. Wow...no arguing required. This guy must be a real peach to work with.

#4 on the list was for cardiology. He was pissed that we hadn't gotten Jack's echocardiogram in January, but I said we didn't have $1,500.00 laying around to pay for it. He said "The baby should have medi-cal because he has Down syndrome." I said that it hadn't been processed yet. He said, "That does not matter. It is your baby. It is your responsibility. You have to find the money." Or what, it will cause seizures in babies? "Maybe you can give it to us?" No - I didn't say that, but I wanted to. This doctor wants to do an echo because he cannot hear a murmur. He wants to be sure that he cannot hear it because there is not a defect so gapingly large that it doesn't create a murmur. I personally do not believe Jack needs his heart poked at. A cardiac defect too large to be heard would certainly show itself in some sort of circulatory compromise with the screaming hissy fit wailing Jack did the whole time the doctor examined him. He was seen by a neonatal cardiologist at birth. He did a Doppler color flow study, an EKG and an echocardiogram. There were a few issues with Jacks heart. The Biggest of the small issues was a VSD. I didn't even know about the other issues until I got Jack's medical records a few days ago. They were too small to mention. The neonatal cardiologist said he also could not appreciate a murmur because it was so small and would likely close within a few days. I said all this to Dr M, but he insists that it gets done. It's a terrible waste of resources. A VSD doesn't suddenly get huge. Especially in the absence of some sort of circulatory compromise. What do I know? I'm just a nurse.

I did tell the doctor that it frustrated the crap out of me that I've done all this research to do what's best for my baby and he just brushes it all aside like so much nonsense. "You are not the expert. Neither is your Down syndrome community." What ever. I did say in a previous post that I would let that dog lie with it's fleas, but I finally felt like venting. Don't even get me started on his views of our with holding immunizations...

What led to all this outpouring of pent up frustration, rage and steam? It was Kimmie's email from RC. She said she'd put the authorizations in today for OT and SLP! He should start those services on April 15th! Yeah Kimmie!