Lots of updating to do tonight since my last post so bare with me.
Diet Update:
We are still holding out at a 2.75:1 ratio. We were going to go up to 3:1, but since things have been going pretty well lately we have decided to stay here for a little while longer. Since Joshua is still cheating the Swedish team is worried to take him up to 3:1. I think we will talk about it again after we get back from vacation. We are also talking about increasing his calories because of his cheating, but we are not convinced he is cheating because he is hungry - we think it is more behavioral. He is gaining weight and growing so I think the calories are probably appropriate. Whatever we decide it won't be until we get back from vacation as it is too stressful to change right before we leave.
Blood Work Update:
We had Joshua's blood drawn again on March 6th as there were some areas we wanted to re-test from his blood draw in January and get more definitive results. They checked EVERYTHING (8 vials of blood were taken). His blood results were great - only area that was a little under was his red blood cell count so we are starting him on an iron supplement. His blood ketone level was great at 5.7 and his Zonegran medication level was right on. All his other tests - calcium, vitamin D, carnitine, cholesterol, potassium, etc. were great. Yahoo! We will have his blood checked again in 3 months, but we are good until then (I think that may be one of the longest stints of not getting blood work that we have had since we started).
Genetic Testing Update:
Joshua's genetic test results are in and all are negative! This test checked for many genetic abnormalities and issues and none were found. This also tested for Glut-1 deficiency and that was negative as well which is great news. If Joshua had Glut-1 it would have meant that he probably would have been on the keto diet the rest of his life as it is the only known treatment for it. I'm glad that his genetic test came back negative, but at the same time it would be nice to know WHY this all started. I guess we will never have an answer.
Seizure Update:
As I said during my last post we have lost some seizure control since the end of January. We enjoyed 44 great days between mid-December and late January and then it un-raveled a little. We had some absence seizures and then the Myoclonics came back as well. We had 50 total seizures in February which was a huge bummer, but if I remember where we come from at well over 100 per day that is still great. Most of February he continued to have seizures every few days, but March has been much better. He has only had a few seizures in March and I'm happy to report that today marks 14 days of seizure freedom! I feel like we are back on the right path and hope this seizure freedom sticks to the end. Please pray it sticks this time and we don't see them come back ever again.
Dr. Korol (neurologist) Update:
We had our check-up with Dr. Korol today and it went well. I think it was one of the shortest appointments we have ever had at 1 hour. We talked about where we are seizure wise and what that means for getting him off his last medication, Zonegran. Because he was having seizures so recently and the fact that we just took him off Zarontin she does not want to wean the Zonegran yet. We want to have another EEG that looks as good (or better) than the last one and then we will take him off Zonegran. We agreed to have another EEG in July and if it is clear then we will wean Zonegran and be done with drugs! I CANNOT wait for that moment - I will be so excited!
Dr. Korol wants us to go back to the neuro psychologist and have Joshua tested again to see where we are at cognitively speaking. We had him tested last year, but he would not sit through most of the tests so it was difficult to get an accurate assessment. Now that he has better focus and attention span we want to try it again to see if we can get a complete evaluation. By the time we get it scheduled, it will be a year since we had it done so it seems timely to get it done again. I'm nervous about the results, but feel it is important to find out where he is at if we can get the complete analysis done.
Behavior Update:
Joshua's behavior has improved overall so I think for now we won't be pursuing a behavioral therapist. We are still winning the battle over PJs - at least when we leave the house. I think it will just take some getting used to for him that he now has consequences for his actions now that he is feeling better.
School Update:
We received Joshua's progress report today from school and we were pleasantly surprised to see that he has made a lot of gains over the last trimester. There are still some areas he is struggling in, but it was nice to read the areas where he has improved in recently. And, I find it very interesting that all of these gains were shown in the most recent trimester (Dec. to now) right after we took him off Zarontin. Coincidence? I don't think so. Here are results which are aligned to each of his IEP (Individual Education Plan) goals.
A. Speech - not yet meeting his goals, but making progress. "Joshua is still having issues with spatial concepts and expressive language. His receptive skills are improving well."
B. Fine Motor Skills - line tracing - Joshua is meeting his goal of tracing lines.
C. Fine Motor Skills - Copying lines and simple shapes - Joshua is meeting this goal and can copy simple lines and shapes.
D. Fine Motor Skills - Cutting with scissors - Joshua is meeting this goal and is moving onto cutting out shapes! Yahoo!
E. Cognitive Skills - Attention during circle time - Goal met! "Joshua can now stay in circle time and sit with his peers while participating in group. He is paying attention much better and participating more than 80% of the time."
F. Cognitive Skills - Follow multi-step directions - goal not met yet, but making progress. "Joshua needs time to process what is being asked of him and he needs to practice following through on more than one step. Once he has learned the directions, he is able to follow through on them daily."
G. Cognitive Skills - Letter Identification - little progress made. "Letter identification is really hard for Joshua. Keeping his focus on the task at hand in order to teach him the letters is difficult. We will continue to work on this in the spring."
H. Cognitive Skills - Spell Name - goal not met yet, but making some progress. "This continues to be difficult for Joshua. He has trouble really watching while we identify the letters in his name. He has a higher percentage of identifying the J and the A, but even those are not consistent yet. We'll continue working on this goal in the spring."
Overall, we seem to be in a pretty good place right now so I will take it! Please pray that seizure freedom continues and that Joshua continues to make cognitive strides in school.
