One Year Follow-Up

Little Bear was diagnosed with PDD-NOS in July of 2016. It was a devastating day for our family and I was overcome by a range of feelings ranging from fear to desperation to anger, culminating in an anxiety attack that I thought would overwhelm my entire being.  There is no way to easily describe how it feels to have your child’s future slip through your fingers like grains of sand, becoming indistinguishable from its previous self as it blends into the endless beach that makes up the Autism spectrum.

This past year has been filled with a number of ups and downs, many of which I’ve written about in this blog. We’ve gone from an almost-completely non-verbal 18 month old who was just starting to walk to a speaking child with a large vocabulary, but difficulties in sentence formation and word combinations. He can run, squat, and is trying to jump, even though he’s not quite there yet. A year ago he didn’t make any eye contact unless you were playing a game and he didn’t respond to his name. Now he makes eye contact most of the time, has developed joint attention, and he answers to his name most of the time. He’s a nice child and we’re very proud of his progress.

There have been ups and downs with providers. Finding a good support system of therapists is not an easy task. We found an excellent OT right away, but everyone else has been rough. We’re starting to settle in. We’ll see what happens in August when school starts and everything gets shaken up, but for now the therapy is settled and to our satisfaction.

Then there’s what should be the key component: the neurologist. At our second appointment in October, he went over the results of Little Bear’s MRI/EEG. He said Little Bear had a bright spot in the area where all of his symptoms were located. That, combined with his unremarkable genetic testing results, made him tell us that there was a very good chance that he actually had delayed myelination rather than ASD. He said, “Look. I’m going to give you the ASD diagnosis because you need it to get services. But honestly, I don’t think your son is autistic. We’ll know more in a year after you repeat the MRI.”

Days passed. Weeks passed. Months passed. Goals were made, goals were reached. Milestones were hit. Progress was achieved. We were very proud of our son and felt confident going into his MRI earlier this month.

I held his little hand while they burritoed him up for the IV. I stroked his hair as he fought the sedation. I rocked him and held him when he came out and tried to get him to eat or drink something so we could go home. When he was finally cleared for home, we had a weeklong waiting game in which we would wait patiently for his appointment so we would receive hopefully-good news from his neurologist.

The day of the appointment came. We went in, nervous for the results that would potentially be as life-changing for us as the diagnosis he received a year prior. We felt confident, though. We knew our Little Bear was slowly opening up to us more and more. We were sure that good news would come from this meeting.

We entered the room and the neurologist asked us when we were going to do the MRI. We looked at each other, confused.

“We did the MRI last week.”

“Where did you do it? It’s not in the system.”

“We did it at Hospital Where Big Bear Was Born.”

“Why didn’t you do it here at Big Children’s Hospital?”

“Because they called us less than a week before and told us that they no longer accepted our insurance. Then they called us 2 days after and asked why we didn’t come to our appointment and said they did, in fact, accept our insurance now.”

Dr. Neurologist looked up the MRI results on his computer and spent at most 1 minute reading them.

“Well, his MRI came back as normal. It says everything is unremarkable. The EEG shows improvement. It’s a much faster reaction time.”

Papi Bear and I start getting excited. Smiles abound. Holding each other’s hands a little tighter. This was incredible news!

Dr. Neurologist kept talking and saying, “Yeah, so nothing really interesting.” We were stunned. What? Nothing interesting? You literally just told us that our son most likely had delayed myelination. This is incredible news! We asked about this.

“Oh no, you just didn’t understand what I said last time. I never said your son might have delayed myelination. Your son is autistic. You need to accept that. It’s obvious.”

“Dr. Neurologist, you told us it might be delayed myelination at two appointments. You gave us in-depth descriptions of why. You told us, ‘I’m giving him an ASD diagnosis, but he might not have the same one in a year or two.’ This was the reason you ordered the MRI again.”

“Again, you misunderstood what I said. I never said that he wasn’t autistic or that it was delayed myelination. That’s something completely unrelated. Also, even though this came back as unremarkable, it was done at a different hospital and it was read by a different tech. There is room for error. You need to accept the results. There are studies being done related to genes, but when you have a gene that is multiplied or is irregular, there are currently no therapies to change it.”

I stopped him right there. “What are you talking about?”

“I’m talking about how autism is genetic and you can’t do anything about it.”

“Our son’s genetic screening came back normal. There were no markers for autism.”

My god if this man didn’t decide to do a 5 second diagnostic exam of my bored 2 year old RIGHT THEN AND THERE. Yep. He sure as hell did. He pulled out the diagnostic criteria for ASD and started asking “told you so” tone questions.

“Well, I can see right now he has repetitive motions. He’s walking in circles.”

“Actually, he’s singing his favorite song and it’s a circle song. He’s bored. He only walks in circles when he’s singing to himself.”

“But he doesn’t have joint attention. He should have had that a long time ago and he still doesn’t.”

“What are you talking about? We go to the park and point at planes together all the time when they fly overhead. His joint attention may not be perfect, but it’s there.”

“Does your child like Mickey Mouse?”

“I guess so. As much as the next kid, I guess.”

“Look over there! It’s Mickey!”

My son was facing the door because he wanted to leave, but he looked over to see what Dr. Neurologist was pointing at. Dr. Neurologist claimed he didn’t see it and tried again. This time Little Bear glanced for a second, but he already knew what was there, so why linger?

He wrote on his paper “NO” next to “joint attention.”

He went through the list… Questioned us. “Observed.” At the end, he paused… I knew why. Because I’ve done the MCHAT a thousand times. I do it every single month. And for the past 3 months or so it has always resulted the same: “At risk.” A year ago he was “high risk.” Now he’s “at risk.” He has improved greatly. He’s no longer a clear cut case. Dr. Neurologist seemed upset at our son’s five second diagnosis. He told us to come back in nine months.

Papi Bear and I left furious. We were both expecting our child to leave with good news and we felt that this doctor had not even opened his case file before we walked in. The tipping point for me was the spiel on genetics when our son’s genetic testing was clear. This told me that this doctor knew nothing about our son. He cared nothing about our son. He didn’t want to do anything about our son. He just threw him in a heap with a bunch of other kids and couldn’t be bothered to look up his records and see what he had said previously.

I called the office the following day to make an appointment with the other neurologist in the practice. No can do. They don’t do “second opinions” within  the same practice. There is one other practice in my county and we’ve been trying to get an appointment for a year now without success. I was in tears because nobody would help our child. I complained to Big Children’s Hospital’s complaint line and they said that this is a separate office that doesn’t represent them. I told them, “Like hell they don’t represent you. They have your name on their office and they are in your building. They most certainly represent you. They’re your neurologists on your website and I just want to see a different doctor because this one didn’t even read my child’s case file.”

Nope. Nothing. Can’t do a damn thing for us. They said they would talk to the office manager and get back to us. It’s been over a week and nobody’s called me. I’m not surprised in the least.

So that’s where we are now. We’re nowhere. We have a horrible neurologist who doesn’t look at our son’s data with an objective eye. We can’t get an appointment with another neurologist because there are literally none outside of these two practices. We paid for these expensive tests to be done and nobody bothered to properly compare them to the first ones.

I’m just done.

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MRI/EEG

Little Bear’s MRI/EEG was last Friday. The experience was horrible. The Children’s Hospital scheduled him for an 11AM appointment. Apparently that didn’t mean 11AM. It meant 12:30. He wasn’t allowed to eat after 3AM and was allowed clear liquids until 9AM. Mama Bear made him a variety of jello flavors to eat for breakfast.

We arrived at the hospital about 45 minutes from home and did the paperwork pretty quickly. There was a card on the front where everyone who helped us was supposed to put their names for accountability in patient treatment. Papi Bear and I both nodded approvingly at this idea – there was no way anyone was going to drop the ball if they had to write their name and position on the card.

We went back to radiology. They led us to the waiting room. There were no toys, no games, no colors, no books – just a small TV with no sound that was playing Disney Junior on loop. About a dozen children ranging in age from newborn to ten were getting upset and cranky from lack of food and glut of waiting. If there is a waiting room in hell, I’m almost certain this is what it would look like.

Little Bear was hungry. He kept telling me over and over, “Leche, leche, leche. Mef, mef, mef!” (mef=mas=eat). Eventually he started to bite me. I asked repeatedly when we would be taken back for the prep. They eventually revealed that we wouldn’t be sent back until 12:30 – a full hour and fifteen minutes after we arrived to the room. They made the appointment to literally have us sit in a room and wait with an autistic 2 year old and no distractions for over an hour.

It took 30 minutes of fighting, but we finally were moved into a “bay” in the MRI area. Progress! Within a half hour he’d be in the MRI and we’d be home by 4.

At 12:20, they came in nonchalantly said, “Oh, it’s going to be at least another hour and a half. We’re running behind.” I flipped my crap at that point. Little Bear was biting me non-stop, he was crying from boredom, and the toys they had finally brought for him were starting to get boring. We fought and argued, but it did nothing. In fact, the nurse told us, “He was allowed to eat until 3AM. Why didn’t you feed him then?” Because it’s THREE AM and he’s TWO. “Well, you didn’t have to wake him up to feed him.” Oh really? Are you recommending I feed a sleeping toddler? You, a nurse in a pediatric hospital? I argued that, had they been honest from the beginning, we could have arrived 1.5 hours later and he could have had jello and juice up until we arrived. She basically shrugged and left us again – both myself and myself fuming from the bad treatment our child was receiving.

Finally, around 3PM, the anesthesiologist came in and started the process. I asked him how long the testing would be, to which he responded, “He’s having three tests done and each one takes about an hour, so I’d say 3 and a half to four hours.” We said we’d go and come back in 3 hours. The nurse said we should wait in the waiting room. I told her where she could shove her waiting room. We would go eat and come back in three hours.

Around 2.5 hours in, Papi Bear and I decided to run to the store to get some apple sauce and milk for Little Bear when he woke up. Along the ride back, we got a call from the nurse on Papi Bear’s phone, basically telling us that we were horrible parents who abandoned our child in the hospital. Papi Bear said, “Hold on… back up. What?” They said they had been calling my phone for an hour. This was untrue. I checked my phone later and they had been calling for 15 minutes. Also, we had an alternate number, my husband’s number. They said, “We expect the parents to stay in the waiting room. We aren’t babysitters.” Oh well really? You expect us to not eat all night/day, too, even though we’re not having tests done?

We arrived back to the hospital and I ran inside while Papi Bear parked the car. I found Little Bear and he was being fed juice by the nurse. There was an empty bottle of formula on the bed and I requested water for his milk. I asked them to call my husband and let him know where we were, since he was parking. The nurse responded, “We need to go home, so he should just stay out there.” To which I said nothing, since my son still had his gown and monitors on and an IV in place. She handed me my milk and got to work.

While the nurse took off the monitors, I gave him an apple sauce. About 3/4 of the way through it, she said, “Oh wait. He shouldn’t be having that. He’s on a clear liquid diet. What is that?” I said, “It’s apple sauce.” “Oh well I guess that’s okay then.”

Okay now. I went to nursing school. I may not have finished, but I went long enough to know that the following items are NOT on a clear liquid diet:

apple sauce

milk

formula

All of which they seemed perfectly okay with giving my child, despite his discharge instructions.

When we finally left, we were FURIOUS. I complained to the hospital and it took over a week to get a response from the department. Basically they’ll mention it in a meeting and hope we’ll use them again. Not likely. Not likely at all.

Testing

Today is the day. Today Little Bear goes to the hospital to have his MRI and EEG done img_3525and in a week and a half we will have our follow-up to see if he gets the full diagnosis or something completely different. It’s 7:40 right now and he’s allowed to have clear liquids until 9. We have to be at the Children’s Hospital by 11, meaning they’ll take him back close to 12:30.

Nursing school taught me that clear liquids includes Jell-o, so Little Bear is loving his Jell-o buffet breakfast this morning. I made him three different flavors, three different colors, and figure he can pig out on it until it’s time to head down to the hospital. First up is peach flavor. I filled his bowl, he ate it all. I refilled and he said clear as day, “Tank you.” He’s been saying, “Gasha” for “gracias” for a few weeks now, but I’ve never heard him even attempt “thank you.”

His therapy is going very well and every day he’s learning new schools and showing improvement. His OT is probably the most helpful, overall. She has him doing sit-ups, push-ups, fine motor exercises, learning new words. He cleans up when prompted right down to closing the bag for his therapist. I was very impressed with what I saw today versus when she started about a month ago.

He started ABA therapy two weeks ago, but missed all of last week due to Hurricane Matthew rolling through. This week he missed his Wednesday session because of Yom Kippur and today he’s missing his session because of the hospital visit. Hopefully next week will be back to normal for him.

We did have to let go his PTA. His regular PT was excellent and she was doing really well with him, but she was clear from the start that she would be sending her PTA after three or four visits. This coincided with the high holy days, so she was unable to come and we said we were fine with the PTA coming instead that week.

She came to our house and it was a nightmare. She looked unprofessional compared to the other therapists who have come through, but don’t judge a book by its cover, right? Sure, all the other in-home therapists have come with perfect hair, well-fitting scrubs, new shoes. Uncombed hair, size-too-small scrubs, and winter shoes that she’d flattened into flip flops doesn’t mean anything outright. She might be the best PTA ever.

Spoiler: She wasn’t.

One of Little Bear’s big issues is attending to his task from beginning to end. He doesn’t like to stay on anything for more than 2 or 3 minutes unless it’s eating or TV. If there’s a new person around, it’s even harder to get him to cooperate. He’ll run around like a chicken with his head cut off, trying to get you to chase him. In all other cases, the therapists have tried to redirect his behavior, even if they weren’t successful. This woman just let him go at it for the whole session. It was infuriating! And when he did sit down and show interest in the peanut ball, she stopped working with him the moment he got fussy. She never put stress on him to make him work and that’s exactly how therapy becomes useless. My boiling point was when this conversation happened:

PTA: You said you don’t like the SLP. Why don’t you like her?

Me: I feel like all she does is play with puzzles and blow bubbles and that’s not conducive to language learning. He hasn’t learned even one new word since his first session.

PTA: (not even 10 minutes later) Yeah, it looks like we’re going to need to bring puzzles and bubbles.

Me: (because I’d had it) Why do you need puzzles and bubbles for PT? I just told you I don’t want puzzles and bubbles.

So I wrote an e-mail to the owner about the issue. His wife, who is the clinical director called me back to discuss the issue. I tried not to trash her – continually referring to her as a “bad fit” – and it seems that at least one other family with a child whose problems were similar to mine were not satisfied. Now we have to wait and find a new PT. We’re not willing to change agencies and get rid of his OT, though, since she is such an asset.

Well, it’s 8:15 and we have to leave in an hour because of the rush hour traffic. Fingers crossed for a successful day with good test results.