A Trip to the Pedatric Neurologist

The psychiatrist said Hope needed to see a pediatric neurologist, given the diagnoses she came with. The only one I knew was the doctor who told me GB was FASD 6 years ago. It was a little embarrassing to go back to him after all these years. When I took GB to see him, I knew she was developmentally delayed – she was enrolled in Early Intervention when she was 7 months old. I hadn’t even thought about Fetal Alcohol Syndrome. He spent a great deal of time pointing out facial features and discussing what effects were associated with it. It was a while before I realized he was saying that GB’s developmental problems where from alcohol use by her BM and they were permanent.  I was furious. Who was he to say that about my baby! Quack! Even then, I knew he wasn’t a quack- he had just caught me off guard and I wasn’t ready to hear that the problems were permanent.

Fast forward six years. Now I have Hope, with all these problems, and even more labels. This neurologist was the best within a hundred  miles. I called him Monday and he gave me an appointment for today. I filled out paper work and gave a quick social history, while her Dad took her for a walk. The first thing the doctor and nurse asked about was how GB was doing. I admitted he was right. He asked about school and I told him about neurologically impaired class she is currently in. Hope came back and the doctor did a complete exam. He said emphatically that Hope was not PDD-NOS. He also said there were no signs of FASD- ARND. His bottom line was there is nothing organically wrong with the child, besides language delays. Her problems are most likely environmentally induced. I told him the shrink wanted a sleep deprived EEG just to be sure what looked dissociation was not, in fact, a seizure. He said he expected it to be clean and that he would not need to see Hope again. He suggested that he was closer than Staten Island, if we wanted him to take over GB’s care. I said I would think about it. He also said he was 53 and had an 18 month old girl, so I am not the oldest parent I know.

We Were Doing Well…

Yesterday was such a crummy day, I lost sight of how well we had been doing. This morning made me painfully aware of it.

GB woke up with a bit of a hang over from yesterday. She settled down a bit after a good breakfast. Hope also ate well. I went to do GB’s hair (which required my attention, since when GB is off balance, touching her hair is a trigger), and told Hope to put her sneakers on. The next thing I know, Hope is grasping my leg and trying to bite my calf. I picked her up and put her in the time out chair. She immediately fell to the floor and tried to bite my leg again. I picked her up and that was it- she was gone. I carried her over to the brown chair as she screamed, hit and tried to bite me. I got her over my lap in the airplane position and rode it out. GB ended up combing her own hair and she was proud of it.  When it was time for the bus, I buckled Hope into her car seat, grabbed the book bags and GB and drove the block to the bus stop, with Hope trying to kick out the car window and screaming she was going to kill me.. I gave her to the aide on the bus and reminded her that if she tantrumed in school, she would get sent home.

When I got home, I realized it was the first before school rage since September 14th and it was the first time she tried to bite  me in at least a week and I succeeded in not getting bitten! I am bruised up, but have to admit this is progress.

My Horrible Awful No Good Day

This is my litany  of woe. If you aren’t into woe at the moment, feel free not to read this post.

GB’s pediatric dentist appointment was this morning. Since she was being sedated, she couldn’t eat this morning. GB, without the timely infusion of food, is never pleasant. She also decided that while the new dentist was better then the old one, there was no reason to see any dentist. It takes us an hour to get to Albany and GB whined and complained and told me all the things she wasn’t going to do today.

When we arrived at the office, they immediately  gave her the first sedative. She spent 45 minutes trying to play Super Mario 2. She can make the character run, she can make the character jump, but she can’t make it do both at the same time. She was getting very wound up. She doesn’t like to lose.  As the sedation started to affect her, she got wobbly and had an uncontrollable fit of giggles. When they took her downstairs, she wasn’t screaming or fighting. When she came back after the fillings and sealants, she was having a hard time walking and was belligerent and nasty. The short story was the first 2 sedatives they gave her were not enough, so they added nitrous oxide. Suffice it to say, she didn’t get any better.

When we got home, the house smelled of cat piss pee. D had started to change the litter box (good thing) and forgot to put out fresh litter. I did stinky laundry and tried to keep GB in one piece. Hope got off the bus at 3:45. She apparently did not like GB missing school, as she dumped her juice on GB’s snack. After a long, drawn out clean up process, I tried to play a game with the girls. GB just couldn’t do it. She suggest they play dress up and watch High School Musical. It sounded safe. I put the DVD on, while they got the dress up stuff out.

You know the glitter that is used to put names on Christmas Stockings? Red, green, silver, gold and really, really tiny? In the time it took for the opening sequence to finish, the two of them managed to take four large containers of said glitter (one of each color) and cover the family room- the rug, the couch, the chairs, and their hair with a glorious, merry sparkle. I have no words to describe the mess.

Besides cleaning up cat pee and trying to vacuum up glitter, the other highlight was trying to get glitter out of GB’s curls and Hope’s dreds.  The day is over.

How Do You Get on the Same Page?

My husband and I are not on the same page. That, in itself, is not unusual. We are very different people. We have been living with varying degrees of RAD for over thirty years. Sometimes it was easy, because one of us (usually, but not always, him) were away and not really involved for long periods of time. Other times, when we are both fully a part of the process, it is more difficult to be coming from the same place. Right now, we are not in the same place with Hope. Theoretically, we do agree. Relationships are all important. Deal with the behavior that we have to. It has been building all week- where to draw the line. Hope has developed a routine where she chooses food to eat and once she has it changes her mind. Years ago we danced this dance and the response was ” Eat what you want. Just make sure you eat enough. The next meal is _____.” It has been a standard over the years and it has been a long time since I even thought about it. Hope added a new wrinkle. She agrees to eat it, then rips it up, spreads it around the plate and a little bit at a time, drops it on the floor. She takes the empty plate to Daddy (always Daddy) and says to Daddy, “I am all finished”, while she watches me for a reaction. Every instinct in my body is screaming to tell her when the next meal is and let her watch me pick up the floor. Daddy handles it differently. He smiles and says “Good job, Hope”. In his opinion, it is not worth fighting over. To add to my murkiness, GB is watching and taking this all in.

I know I am not in a place to be objective at the moment, so I am tabling it. We took the girls to see the Cat in the Hat at B&N. Both of  them enjoyed it. Afterward, the two girls and friends that met us there went off to look at book and toys and listen to music. We set out boundaries and made sure they understood them. GB and her friends were happy within the boundaries. Hope got bored quickly and started to wander. I called her back. She said “No!”. I picked her up and she started screaming. I took her to her Dad who took her out to the car. I gave GB the 5 minute warning and when I said time to go, GB said good bye to her friends and we left.

The Dad decided to take his mother out to dinner to night. GB usually goes with him and sometimes MK, too. Hope wanted to go and the Dad did not want to take both of them and told GB she could go next time. GB started having a tantrum. She was really upset that Hope was taking her place. The Dad and Hope left. MK decided she wanted to bring the baby to visit, called the Dad and he came back to switch to the van and pick them up. At that point, GB lost it completely. Everybody left but us. I rode out her rage. After almost 45 minutes I could finally pick out words between the screaming and tears. She said over and over again “my dreams. He took all my dreams”. Melodramatic? Yes. Over the top? Absolutely. My response? I had none. We cuddled and rocked and she fell asleep. When she woke up, she was fine and we are eating pizza while watching her Tinkerbelle DVD. While refilling her drink, I casually asked her what dreams did she lose. She looked at me like I was crazy and said, “Mommy,  I am not even sleeping. How can I dream?”

I am exhausted and I predict GB and I will be asleep long before the rest of the crew gets home. Right now, I am wondering if the Dad and I are even reading the same book.

GB and the Dentist

GB has been going to the dentist regularly. She has had teeth pulled without a problem. About nine months ago, she has her first cavity. The dentist gave nitrous oxide. If I go to the dentist, that would be a good thing. The more the better.  I am not Bipolar. GB is. The dentist said GB’s Dad never told him. I wasn’t there. GB bounced off walls all afternoon and most of the night. Bipolar people shouldn’t use  nitrous oxide. Since that day, she had gone back to that dentist 3 times, and three times she refused to open her mouth. Forget about cleaning her teeth or applying sealant, GB wouldn’t even let them count her teeth. I left the last time with a referral to a pediatric dentist.

The pediatric dentist is expensive and  over an hour away. I bribed GB with lunch and alone time with me, and she somewhat unwillingly got in the car. By the time we got to the dentist, she had convinced herself that the dentist was a three-headed monster who ate kids whenever he wanted. I carried/ dragged her in (She is getting big). Once we were in the office, she stopped struggling.

The top floor of this house has a huge waiting room. Around the waiting room, an old fashioned toy train chugged around the ceiling. There was a HUGE HD TV, with all sorts of floor pillows, to watch. GB instantly spied a wall of junk machines and wanted quarters. The machines didn’t take quarters, and one of the three receptionists told her the dentist would give her tokens when she saw him. A corner of the room had two old arcade games from the early eighties; Galaga and Super Mario Brothers 2. Those two games had GB’s attention until  she had to go downstairs.

In this practice, all work was done on a lower floor, where parents never go. 45 minutes later the dentist called me over, showed me the 4 x-rays they had taken, one of which was panoramic, and pointed out two cavities he wanted to fill, on teeth that should have already been sealed. I told the dentist that GB wouldn’t open her mouth when they tried to seal them. He said that he already recognized she would need to be sedated.

Fifteen minutes later, GB came up with a smile on her face clutching her “report card”, a bunch of silly bands and two tokens. She told me this is the only dentist she ever wants to go to. She took ten minutes to pick which machines she was going to put her tokens into and left with a smile.

We go back Monday morning and they will do the two fillings and seal 4 teeth in one visit. I made sure I reiterated that she was Bipolar, so we should escape her bouncing of walls. At first appearances, it looks like we may have found a keeper.

Hope, Attachment, and I had a GOOD Day

Tuesday was a good day for Hope and I. Hope did not get physically aggressive at all today.  That by itself is a milestone to celebrate. But it gets better. She called me “Mom” and “Mommy” all day, and not once was I “mean and ugly”. She asked for a hug from me! And the Cherry-on-Top? She was cuddling her Dad right before bedtime and she asked for cuddle time with me- and he was right there. Four gigantic firsts in the same day. She did wet her pants, but nobody’s perfect. I wish I had known it was going to be such a good day- I would have taken some pictures.

A Visit to the Shrink

Yesterday was our visit to the psychiatrist in Manhattan. GB likes these days because we spend them together, she misses school, and we have Mickey D’s after our appointment. Hope got very excited, because GB did. We spent an hour and a half with the shrink. He was impressed with how resilient Hope is. Since we have had her less than a month, he recommended we not  change medication (she is on risperidone) and not do any evals until January.

We spent a lot of time talking about GB’s instability. He increased both the lithium and the Namenda and said that would help, but she will still experience psychotic breaks. Since she had to be taken off the risperidone because of serious side effects, he won’t but her on any atypical anti-pyschotics for at least a couple of years. We need to avoid stressful (for GB) situations until we get her stable again. So for right now, soccer, dance and gymnastics are gone. She seemed to understand that they were too hard for her right now and gymnastics is the only one she expressed disappointment with missing.

Hope held up well through the appointment, but lost it on the way home. She finally tantrumed herself to sleep and the last hour of the car ride was peaceful. The nap reset her and the girls did well the rest of the day.  We kept things quiet and they played in their kitchen. watched a little of a Care Bear movie while snuggling, ate dinner, took a bath, and read a book. They were both asleep before 8 pm.

We are still waiting for a call back from the therapist.