Phone Call Roller Coaster

We are still going to the Cleveland Clinic and looking forward to this appointment. However, I have to share the roller coaster ride of phone calls I experienced yesterday afternoon.

I was running errands alone while Maizie was with her Aunt Marie. This was to be fun time for me. It did not work out so well. The nurse from Maizie's neurologist office in Indianapolis called. I was expecting this call but did not expect what she was going to say.

The nurse laughs a bit and then says,"Dr. was looking over Maizie's lab results and was surprised to see that her psychiatrist has read most of the results wrong. The results are actually quite normal and there is not much to worry about that a visit with her pediatrician could not take care of."

My response, "Are you kidding me?!"

She explains to me how the psychiatrist had lined up each lab result with the wrong reference range. The actual results that are out of range are highlighted. On the sheet it looks like three black lines across the page. But, if you look really close you can see the name of the test and the number in the out of range column. I am sad to admit I did not notice these highlighted tests.

The tests the psychiatrist was concerned with were not out of range and did not even show up in the out of range column. There are a few towards the end of the report that are easily read as out of range but the first page was a mess of misunderstanding. As psychiatrist read it her Glutamate was 80, reference range was 1-24. When read accurately her range was 80 and the reference range is 5-150. So, she fell well within the normal range on that test. There were several others read wrong like that. The three tests on the first sheet that were out of range were Phosphoserine, Serine and Beta-Alanine. I was eager to get home and look into what these amino acids were all about. Granted, until she is retested by an expert I am taking everything with a grain of salt.

Now, when we first got these results I remember looking at them with the doctor and thinking they were not lining up correctly. But, I pushed that initial gut reaction down and said nothing. I assumed he knew what he was doing. Argh!

I begin to feel my face flushing and I start sweating profusely while talking to this nurse. I feel anger and frustration bubbling at the surface. I know I will either begin to cry or spontaneously combust. Neither happens.

I hold myself together and tell the nurse about the research we did and our plan to see the specialist in Ohio. I am at a loss as to what to think and am filled with doubt and disappointment. This was the first time we had tests that showed anything that may lead to an answer and most importantly an answer that may lead to helping Maizie. Now, I was being told the tests were fine. I could not believe it.

The neurologist's nurse will call me back later this week in regards to Dr.'s opinion on seeing the specialist and the answers about a few of the testings that the neurologist could not make sense of. Oh, and she was going to call Lutheran Hospital because one of the labs showed that it was done via Spinal Tap. Maizie has never had a spinal tap. What the hell?

Once I hang up I speed dial the clinic in Ohio. I knew I put all these numbers in my phone for a reason. I tell the nurse what the neurologist said about how the psychiatrist misread the lab results. Should we keep the appointment with the specialist? She says she will show the Dr. the labs and the other history reports I sent. I hang up expecting days of me calling and begging for some answers. Two minutes later I get a phone call from this nurse! Yes! God is working with me here, I could just feel it. She had shown the doctor everything. He reviewed it and said Maizie should definitely be seen because the highlighted tests that were abnormal could definitely point to something. Not to mention her history of developmental delays, sleeping difficulties and seizures. I thank her and keep the appointment.

Suddenly, I feel relieved and at peace with the world! It is totally strange how you can go from being devastated by some test results, to feeling hope and relief that the findings could lead to a better life for your child Then on to devastation that the results were within normal ranges and everything appears to be fine. I start to think I could live with that but would always worry that none of these doctors knew what they heck they were doing. Then, I go back to relief that the expert still wants to see her and is convinced he can help her.

I have experienced these roller coasters of emotions before. They are exhausting and linger for days. I will wake up at night running the results or current medications through my mind. Worry that we are wasting our time and money or putting Maizie through unnecessary testing. The thing that makes me feel confident with the Ohio clinic is everything will involve blood, urine and genetic testing. Those results...when done and read correctly reveal truths that will lead to a definite diagnosis. This is what we tell ourselves.

As I write this the psychiatrist FINALLY calls me back. It has been nine days since I first called. I explained the misread on the labs to the nurse and she was stunned. She did apologize. It is no use for me to get angry at the staff. I am angry, frustrated and fed up but I learned early on that letting out these emotions to staff or doctors in an unprofessional way gets us nowhere. I act professional and factual. The doctor made a mistake and it does make me angry and doubtful of his skills but he is one of the few that has shown any effort in getting to the root of Maizie's difficulties. I am sure he will be embarrassed when he sees where he messed up.

Ah, the joys of advocating for Maizie's medical care. I am thankful that I deleted advocating with the public school system from our lives. If I was continuing to struggle with the school and medical I would eventually crack up. Our lives have been somewhat simplified.

However, finding time to get out on my own can be a challenge. Today I was leaving to run to the library, GNC and Walgreens. It could be done fast and I figured Maizie would not bother Joe for a short hour. A few minutes into the trip I get a text from Joe that Maizie is 'screaming' and to come right home. This hardly ever happens anymore. When Maizie was younger our days were filled with these long screaming, almost seizure like melt downs. I slowly open the door to the house and sure enough Maizie is sitting in the computer desk chair screaming and crying.

Joe is in the basement trying to finish a conference call. It helps to know what set her off. When I left the house Maizie was playing the computer and was having a difficult time advancing through a part where a kitten has to catch some flowers. I am pretty certain that not being able to accomplish this task sent her over the edge, me leaving may have been a catalyst for the melt down also. It is usually more complicated than just a game upsetting her. Usually, these meltdowns occur with a build up of frustrations or her working very hard to keep herself put together around others. It is rare that Maizie would have a melt down in places other than our home. Of course it has happened, but its not common for her.

Maizie sees me and runs to a corner in the living room crying and trying to hide herself from me. I know immediately that this is one of those times where talking her out of it won't work. I get her the medication that will help her settle. Without it we are looking at a long bout of emotional acting out followed by a depressive state where she cannot stop crying. We have tried getting through these times without the medication and things only get worse. She willingly takes the medication and within minutes she sits on the couch and is able to talk. At that moment she is unable to tell me what made her so upset. She soon falls asleep. Now that she is awake I ask her what had made her so upset. At first she says she does not know. Then, a few minutes later she says she could not get the flower on the game. We both agree that she is not allowed to play the computer the rest of the day.

Discipline is always a challenge when she is unable to cope. Ever since she began having problems at the age of 18 months we decided to treat her as if she knew what she was doing and discipline accordingly. This was sometimes torture for her and us. But, it was always difficult to tell what was within her control and what was not. Lots of kids have melt downs and cry about things. But, with Maizie the crying would lead to intense depression, insomnia or obsessive compulsive like behavior. Even still we wanted Maizie to know that she needed to come up with ways to deal with her low ability to handle sensory stimuli and transitions.

Sometimes we know that we are to blame for a low tolerance level. For instance if I take her on too many errands or to a crowded place with lots of noise. She can't handle much stimuli and we always say,"we all pay a price for pushing her limits". Every day is a constant balancing act of activities. This is something most parents of high functioning autistic children have to learn to handle. Most importantly, we have to continue to come up with ways for Maizie to communicate her needs before the melt down occurs. We still have not figured this out to my liking.

I am anxious to see if this testing shows anything helpful. A lot of the metabolic disorders have similar symptoms to autism, epilepsy and often times they are interrelated. If we could do something with supplements and diet to help I will be thrilled. We have tried many diets in the past but this would be specific for the disorder. Hopefully it would not be as challenging as the diet for children who have PKU. But, whatever it is we could do it.