Friday, September 8, 2017

at the developmental pediatrician

We got up early this morning. I fully packed everything last night so that Whiz wouldn't see me packing any bags this morning. I didn't put my shoes on either. He was quite aware life wasn't "normal". He wanted to freak out a little. But I made his favorite breakfast (fried eggs) and he ate it without issue.

Rex wasn't as cooperative with his breakfast. So, I ate his scrambled egg for him and he decided Greek yogurt would be OK. (Some days, Rex just doesn't want to have to chew food.)

We were on the road to the hospital by about 6:15am. Our first appointment was at 9:20am.

The ride to the hospital was uneventful. There was a little crying. But not more than I expected. I ignored it and turned the radio up loud. They stopped crying. I know for sure that Whiz even slept a little.

The appointment started on time. Two nice nurses walked us back to an exam room and took vitals on both the boys. They each allowed their blood pressure to be taken. I felt so good about things. I was ready for some answers.

I'm not sure exactly what I expected to happen with the doctor. I had hoped for a little shred of validation. I wanted the doctor to at least say that the things I'm seeing "could" be because of FASD (fetal alcohol spectrum disorder). I knew that, most likely, the boys would not have all of the required facial dysmorphia. But the facial features in kids diagnosed with FAS (fetal alcohol syndrome) are only apparent in less than 25% of all children with some form of FASD. The boys have other markers. Significant markers.

Instead, the doctor, Ms. Branson, walked in the room and introduced herself and the team. There was one other doctor and a resident. Ms. Branson made mention right away that this was a single visit and we wouldn't have to come back. Then she turned to look at the boys in their double stroller. She exclaimed, "They don't have FAS."

From there...I didn't quite know what to do. She hadn't even started the examination and she had already made up her mind based on facial features alone. I was disappointed but I tried to not show it. Ms. Branson backtracked a little and said something along the lines of examining them anyway.

sigh

We were in a small conference room. The doctor brought in about 5 small red cube blocks, a fine motor toy with dowels and rings that fit on them, a three piece puzzle, and maybe one or two other things I didn't notice.

Dr. Branson didn't even take the boys out of the stroller for her entire diagnostic evaluation. 

The other two members of the team asked me very generic questions about the boys behavior and development. When I felt like the answer I needed to give was too complex for the simpleness of the question, they didn't ask for more details. They didn't want me to elaborate on much. They asked me very few follow up questions. It felt so superficial. 

Now, they had gone through ALL the documents I sent ahead of time. So these people had read through the ECI evaluations and had looked over the medical records I sent. So that was good. But they didn't seem like they wanted to know much more.

Everything was done in less than 45 minutes for both boys. The team left the room to discuss the "findings".

-- commence giant meltdown from both babies -- 

I fed them a snack while we waited. I got out other toys. I tried so hard. But by the time the doctor came back to tell me the "results"...Whiz was completely freaking out. If he hadn't been strapped in the stroller, he would have been throwing himself all over the place and probably banging his head on the floor. It was bad.

Nothing I did could redirect. So the doctor quickly talked over them.

She stood firm in her diagnosis that neither boy has FASD. 

Whiz has the primary diagnosis of "developmental language disorder". Under that he also got diagnoses for picky eater and temper tantrums.

Rex got the primary diagnosis of "global developmental delay". Under that it is also listed that he had exposure to alcohol in utero, prematurity (born at 35 weeks), family disruption due to child in foster care, and feeding difficulty.

I find it odd that Rex has a Dx about foster care and Whiz doesn't. Doctors make no sense to me sometimes.

Both boys are to continue ECI services including speech and occupational therapies. (I called our coordinator on the way home. She is going to schedule an occupational therapist to come and evaluate each boy so we can add weekly OT.) I am to consider adding behavioral therapy through ECI for Whiz to address his tantrums. I can consider feeding therapy for Rex.

Dr. Branson did say that given the reported history of alcohol exposure for Rex, she can't rule out alcohol related neurodevelopmental effects. Ultimately, she thinks Rex will need a comprehensive psychoeducational evaluation to assess cognition when he's a little bit older. She said more than once that she is more concerned about Rex than Whiz. She mentioned "intellectual disability" more than once.

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Ultimately, everything that happened...or didn't happen...today doesn't change anything. These boys didn't need any new official diagnoses in order to keep receiving services. My goal of getting the FASD diagnosis today was more for long term help.

If Auntie Carla needs a diagnosis for either boy as they get closer to school age, she can have them evaluated again. Nothing this doctor writes can prevent them from being diagnosed with FASD when they get older.

I'm going to TRY and see if I can locate the CPS worker that handled Mom's very first CPS case with her three oldest children (Rex and Whiz's half siblings). Their case was open when Mom was pregnant with Whiz. There is at least one person, if not more, in CPS that should be able to confirm that Mom was drinking when she was pregnant with Whiz. There is confirmation that Mom was a heavy drinker during her pregnancy with Rex. So that's already on file. And really, Auntie Carla could just tell the next doctor that she believes Mom drank while pregnant with Whiz. We have NO reason to believe that she didn't.

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Auntie Carla and I have been texting and talking a lot lately. I have such a peace about these boys going to live with her. She really is ready. She's appropriately optimistic about it all - yet she's completely grounded in her understanding of how big of an undertaking this is going to be. We've discussed the fact that lots of kids with FASD are unable to live fully independently. She is going into this with her eyes open. When I called her today and told her the official Dx of FASD wasn't given...she understood. She knows that they are still significantly behind with their language development. She knows that a diagnosis of global developmental delay isn't a minor thing.

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I have to type up an overview for CPS. The doctor/nurse somehow managed to combine Whiz's records with Rex's on the printed overview they gave me before I left today. So what I have in my hands right now is perfectly worthless. (Even though I know what info applies to each kid - it would completely confuse CPS.) The doctor's office is typing up new forms to mail to me. Complete information, with more details, is going to be sent directly to our regular pediatrician. I'll get copies of that, eventually, as well.

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I'll end this with pics of Whiz and Rex. Supposedly Rex has one of the facial markers because he has a shallow philtrim (area below the nose / above the lip). But, based on a 4-diagnostic ranking...a score of only 1, for the shallow philtrim, means that the level of expression of FAS facial features is none. 

I can't show you their eyes. The doctor says that Rex has the epicanthal folds. Apparently that doesn't mean anything. And if I understood Ms. Branson correctly, Rex is one percentage point away from having microcephaly. If his head circumference were just a wee bit smaller, that would be a marker as well. Both boys have heart murmurs...but she didn't relate that to FASD at all. 

WHIZ

REX
At least the doctor didn't negate any of my concerns. Everything was addressed and noted in their files. Both boys have significant developmental delay. They just don't have the Dx of FASD...yet. And I guess that's OK. It just felt like today was a colossal waste of time. She didn't diagnose anything that hadn't already been diagnosed. 

1 comment:

Anonymous said...

Thank you for the full report. Totally discouraging. Glad you have your bro and Auntie C being fully informed. Dealing with doctors is often frustrating for everyone, including the doctors. No easy answers.
The people with this doc would have been kept quiet by her style and statements. Unfortunate because this impacts their learning and their own qualified practices later on. But right now they need her approval and are not inn a position to disagree with her IF it is not going to make a material difference.....
Tell your bro how much we all appreciate him.
Thank you always for all you do for every child that touches your lives. Hoping new job postings open for your husband.....