Wednesday, October 30, 2013

Molly's marathon appointments - October 2013


It has been quite a few months for Molly. After spending a great majority of the summer on the couch, so fatigued she was unable to do anything, Molly did start to get some of her spark back. Vacation to Myrtle Beach helped a bit, and getting back into the routine of school really seemed to help. If we've learned nothing in the past almost 8 years, it's that Molly LOVES structure and routine and thrives on it.

After July's hospitalization, testing and appointments, we did our best to get a program in place that would work best for Molly. We got an out-of-network exception and were able to get a private ABA therapist in the house 2 days a week to work on the behavioral aspects of Molly's impairments. Ashley and Britta are a wonderful team and Molly is progressing with their help. We've kept the 1:1 at school and every pull-out and push-in therapy we need is in place (minus in-school ABA); this is all helping Molly keep up with the rigorous third grade curriculum. As far as seizures go, we've noticed some staring spells, but no convulsions (knock on something!)

So, a lot of good stuff. However, on Saturday of Columbus Day weekend, Molly was just standing in the hallway one minutes and the next minute she was like a rag doll and had crashed to the ground. We didn't know what to make of it initially and chalked it up to something suspicious - but just kept an extra eye on her, I even went to her theater class with her. She seemed zoney and tired and a bit wobbly. Shortly after coming home from theater class we heard a huge crash in the bathroom and found a rag doll slumped on the floor again. Now the hairs on the back of my neck were standing up. As Chris and I tried to decide what to do, she fell again outside. Somehow she didn't seriously hurt herself - thank goodness! We called the pediatrician's office hoping they'd just say keep an eye on her, because we knew calling Boston would mean going to the ER. Well, the pediatrician's office agreed that the ER was where we needed to go, as these could very well be some new seizure type. Turns out the docs agreed and she was admitted for eventual monitoring and then a quick MRI. Nobody discovered anything, but her mental status had returned. So - no answers - just more questions.

This takes us to our marathon of appointments the last 2 days. We started Monday morning with the Keto Dietitian and Doctor  - since Molly is on Modified Atkins (or Modified keto) we have to closely monitor EVERYTHING. We don't weigh or measure her food, but she's on a very high fat, very low carb diet - like 15 grams of carbs a day. She gets a bunch of Mayo and whipping cream. And, although we've seen a new piece of Molly unlocked with this diet, I fear her little body can no longer handle the stress of it. When we began in April her total cholesterol was only 178, on October 2nd it was 338. That's a big jump, but not unexpected when you're on the diet and it almost always resolves when you go off. However, the concerning part was that her fasting levels yesterday (10/29) were 429 - so it's gone up incredibly fast and is higher then any of us are comfortable. It's one of those awful decisions where you have to consider the piece of her you've unlocked, versus giving her heart disease at a really young age. Since we weren't using the diet to control seizures, we are going to back way down on the fat. Our plan is to slowly transition Molly to an LGIT (low-glycemic index treatment) or South Beach style diet. The reasoning is her doctor feels Molly did so well cognitively on the diet, not because of just the diet, but because of the structure of the diet - so we don't want to lose that! Molly is also still growing at the 95th percentile for both height and weight, but her BMI is in the acceptable range.

From there we went to endocrinology. With thyroid issues in her genetic make-up and a wonky test, along with some of her strange autonomic issues - we decide to get a full work-up. As of right now - no endocrine issues - good news! She just has to have a thyroid function test yearly and since there was the presence of antibodies, she will likely develop hypothyroidism - but we're totally on top of it.

Next we went to a research study, which was quick and painless and then we found our hotel and Molly discovered the swimming pool, Texas Roadhouse, the mall and how to take up and entire King-Size bed and use your super cold feet to push Mommy out!

Tuesday morning - we had to be at the hospital when the lab opened at 8am for a fasting blood draw and then straight upstairs to development for an 8:30am appt. Her dr. was pleased by the progress she's making and attributes a lot of it to the coping skills we've taught her, to the ABA therapists, to the 1:1 and to the program at school. Molly talked about FRIENDS by NAME!!! she talked about things that weren't completely Molly-centered and she drew a detailed picture - these are HUGE accomplishments. There is still a lot of concern about the structure and semantics of her language, the reciprocal interests, the emotional connections and understanding. The biggest concern, right now, however is attention or lack there of including the fidgety "ants in her pants" syndrome she seems to have. We've been talking about a med since before Molly was 5 to help with this. We've tried everything we could to help control this piece of Molly's make-up without using medication, but it's not working. Molly needs help to calm her body and her brain and the Depakote alone isn't cutting it anymore. So we're going to try a very mild and long used med that has virtually no side-effects, because everyone believes Molly is EXTREMELY medication sensitive. We go back in three months - but we have a lot of good information and support form them!

Next we checked in with orthopedics who had made a special appointment with us, since they knew the 15 minute slot allotted in clinic would be no where near long enough. He was still in surgery, so Molly and I traipsed over to the Galleria and she got a real, hot breakfast at 11am! She was thrilled by her omelet and strawberries with whipped cream. We talked, we laughed, we colored and she told me this was the best vacation she ever had because we got to be together. All the doctors, all the poking, prodding and pushing and she couldn't be happier. Afterwards we found Mommy a big coffee (cold kid feet and no room in bed) and went to wait in orthopedics.

I was skeptical, as we'd been dismissed from an orthopedic when she was under 3, saying she was normal and nothing was wrong. But, I've seen a great change in her gait. What used to be very wide-based is not very narrow, one foot turns really far in, her knees knock. Her movements are very jerky. I knew it wasn't ok and the doctor agreed. He really didn't like how floppy her ankles and knees were, how easily he could roll them and move them all about. He watched her walk, he played with her legs and he promptly ordered she be fitted for custom SMOs and that we also get elastic knee braces. We would get these made, come back for a fitting and then x-ray her hips and back to see where the issues really begin. The hope is that the supports and continued therapy will correct a lot of the problems. We'll see. We ended the day at the brace shop getting casts made of Molly's feet so they could create her custom ankle braces and we'll head to Target today to try and find the right size in knee braces. This is a whole new avenue, one I know little about, so I'm learning as we're going. But Molly was happy to pick out butterfly patterned inserts with purple fabric straps.

Between orthopedics and the brace shop we saw our beloved Dr. P. who was as concerned as we were with all the falling. She was reassured to see Molly be able to walk a straight line as this meant her cerebellum was in tact. She's unsure what to make of the episodes, but wants Molly watched closely. She says we cannot increase the Depakote, as Molly's white count is too low and higher doses have depleted this even further in Molly in the past. She has agreed with the development dr. to add Guanfacine (Tenex) to her regimen, but extremely slowly and cautiously. She's also said to come off the diet once we get that up and running, but to go ahead and cut back on the fat now. She, however, does want us to stay on some kind of a diet plan. We go back in February to see her and development and they are always available to help us.

Beautiful Molly was wiped last night and crashed hard. She made it to school today , and we'll see what kind of shape she's in this afternoon since we have to go to Target to pick up meds, the braces and a few odds and ends.

So - if you wondering what was going on - there you go, if you weren't - I gave you WAY too much information. We're happy to share Molly's journey, as she is such a strong spirit and she never gives up. She actually asked me, "Remember when I couldn't read Mom? Well, I just kept trying super hard and I didn't give up - now I can do it!". She's so right - every day is a new challenge and every challenge brings a lot of questions. But her amazing spirit and sparkling smile keep us pushing forward. Thank you for thinking of her and we'll keep letting you know what we find out as we find it.