Our Trip to The Center for Pediatric Neurology at The Cleveland Clinic in Ohio

We are back from the Cleveland Clinic's Children's Hospital. We stayed at a Holiday Inn in downtown Cleveland. I must say it was the dirtiest hotel we have ever been in. I spent the first ten minutes cleaning the bathroom in our room. Finally, when I realized it was beyond filthy we called the front desk. They told us no one could clean it since the cleaning staff was gone for the day. They wanted to know if we would change rooms. Maizie was in her p.j.'s ready for bed. There was no way we could move peacefully from one room to the next. It probably would have been just as filthy. Later that night a couple walked right into our room. Apparently they had been checked into our room also. Lovely.

One little known thing about Joe and I is that we worked together at the Luxbury cleaning hotel rooms during college. We know a thing or two about what goes down when it comes to cleaning hotel rooms. I am surprised we can get ourselves to step foot into any hotel.

We woke early the next day to navigate to the Cleveland Clinic. We drove through down town and into an area that looked war torn. There were pot holes we could have waded in. Most everything was abandoned and rather scary looking. About five minutes later we had entered the Clinic area. There were several parking garages joined together with many buildings that went on and on. Luckily, we had our route all planned out. Once into the parking garage we walked in an under ground tunnel to the Children's Hospital. We found the Center for Pediatric Neurology department easy and were called in shortly after arriving.
Dr. Parikh specializes in Neurometabolism and Genetics. He was kind and communicated well with Maizie. He began by asking us questions about Maizie's birth and as much birth parent information as we could provide. Luckily, we met both of Maizie's birth parents and a biological Grandmother so we had more information than most adoptive parents are given. After sharing that information we had to answer many questions about Maizie's developmental milestones, behavioral issues, eating and educational skills. The interview was almost two hours long. The Dr. was very thorough. He explained to us what he saw as red flags in Maizie's developmental and birth parent history.
The Dr. felt confident that Maizie was somewhere on the pervasive developmental disorder spectrum. If this is the case then Maizie may continue to improve over time in many areas. He did agree that she was having seizures that were being controlled well but could improve with an increase in her medication. He ordered lab work to see if the medication could be increased to try and slow down her seizures even more. He thought that Maizie is on a good medication, vitamin and Omega 3 regimen. This made us feel quite relieved since I have done much advocating to keep her on the current medications.

He explained to us about genetics and the role they play in genetic, metabolic and mitochondrial disorders. Maize has many clues that lead to the possibility that one or more of these disorders could be present. The red flags are as follows.
1. developmental delays
2. birth parent history (epilepsy, delays, etc.) leads to possible inherited genetic disorders
3. genetic physical features that are present
4. seizure disorder since infancy
5. blood tests reveal lowered immune system
6. chronic leg pains
7. lack of energy, 'off' days
8. chronic constipation that is not medication related
9. self restricted diet, such as trying not to eat protein
10. a heart murmur
11. chronic sleep disturbances
12. extreme sensory issues
13. anxiety

The second days appointment was a physical exam where he determined that Maizie has four genetic physical features that may point towards a genetic disorder. All humans have one or two of these but if you have more than two it is a red flag that a disorder may be present. They are finding that specific genetic disorders can be present without the stereotypical physical features of a disorder. An example would be Williams Syndrome. Maizie fits some of the characteristics for this disorder except she has none of the physical features. They are also discovering that Rett's Syndrome is showing up in many "lighter forms" than ever thought possible. DNA studies are amazing and revealing more every year. It is good that we will be testing for specific missing links in DNA to reveal if a disorder is present without guessing. So many of the disorders can seem fitting but DNA testing is the one sure way for diagnosing.

Maizie had an urine and blood test that will look for 900 genetic disorders and various metabolic and mitochondrial disorders. As usual Maizie was an angel for this test and picked out a Dora the Explorer sticker that talked about being brave. Very fitting. We will have the results back in four weeks. If nothing is found we will do blood testing for up to three more batches. If nothing is found we will choose whether or not to go further with a spinal tap and a muscle test. There are some disorders that can only be found this way. We hope that we will not have to decide whether or not to do these procedures since they are inpatient, require anesthesia and are painful.

Our second day appointment went fast. Joe and I had a few questions for the doctor and he was very good in taking the time to explain things to us. He had the following recommendations.
1. See a cardiologist to do an ultra sound of her heart
2. See her physical therapist for ankle orthodics to help with her leg pain
3. possibly raise her Lamictal to reduce seizures
4. find an autism specialist to help with behavioral and learning difficulties
5. see her gastroenterologist again
6. Revisit the clinic in six months
7. No food or diet changes needed unless a possible DNA test reveals a disorder where this would be necessary.
8. Consider trying the medication Stratterra to help with attention (this was recommended by her current psychiatrist and we refused,we may reconsider this, it would help with focusing)
9. Do an inpatient EEG. We can wait on this till a bit older or seizures increase.

After the appointment we wanted to do something fun in Ohio. We visited the Cleveland Children's Museum. It was set up like a town for little kids. There was a bank, a grocery store, nursery, doctor's office, bus station and many more fun places full of activities. Maizie loved the giant sand box the best. It was a huge room filled with sand and based on an Egyptian theme. Parents and kids were creating sand castles and pretending to cook. I was happy Maizie was willing to take off her shoes and play. Once in, she did not want to leave.
We also ate at in Little Italy at a great Italian restaurant called Trattoria's. Maizie and I shared a cheese and mushroom pizza. The atmosphere was nice and reminded us a bit of some of the restaurants we liked in Jersey.

The ride home went fast. We were so ready to be in our own beds! We are thankful for everyone's prayers for a safe and productive trip. We felt the prayers! It is a relief to be moving in a direction towards answers. Finally!