Monday, November 7, 2016

A Long Overdue Update

I recently realized it's been nearly a year since I last updated the blog. I don't know where the time has gone!! So I've gone through my notes month by month to summarize everything I haven't updated on.

Collin saw the gastroenterologist in January for a routine check up. Since his reflux was pretty well controlled with the two medications he was on (Carafate four times a day and Prevacid twice a day), Dr. Qureshi decided not to make any changes, and asked us to come back in six months.

Later in the month, Collin had his annual neuropsych exam with Dr. Mayes. During the intelligence testing, Collin demonstrated average verbal and visual intelligence, but performed below age level on tests measuring attention, working memory, writing skills, and fine motor skills. His academic achievement test scores are below expectancy for his IQ, indicating a learning disability. Dr. Mayes' testing also showed Collin continues to have mild high functioning autism. He continues to have difficulty initiating and sustaining social interaction, difficulty establishing friendships, he engages in parallel rather than interactive play with peers, makes inconsistent eye contact, and misinterprets the actions of others. He demonstrates the perseverative characteristics of autism including distress with change, repetitive questions about what is going to happen, literal thinking, and body tensing when excited.  He has some of the somatosensory characteristics of autism including hypersensitivity to loud noise, distress with commotion and crowds, tactile defensiveness (difficulty tolerating the feel of certain clothing and dirty hands), and high tolerance for pain. He exhibits the atypical developmental pattern found in high functioning autism including early motor and delayed speech milestones, dysgraphia (difficulty with handwriting), and strength in rote memory (like memorizing lines from movies). Collin can be overreactive and distressed by input or occurrences that most children can tolerate (such as change and sensory experiences) and when misinterpreting the actions of others, which is common in autism. He also continues to show symptoms of social anxiety disorder, including shyness, social reserve, limited spontaneous speech, constricted affect, low self-confidence, self-consciousness, and worrying. Typical of social anxiety disorder, Collin is comfortable and not reserved at home and is interactive with family members and familiar people. I wish that everyone could see him the way we get to see him at home!

The third appointment in January was for a routine six month dental cleaning and check up. The dentist took X-rays, which showed some more "gifts" from Collin's cancer treatments. There are a few places where no adult teeth have formed, and a few other places where the adult teeth are not fully developed. So some of his baby teeth will not come out since there are no adult teeth behind them, and it's possible that around 18 to 20 years of age when he is done growing, he may need dental implants. While none of this came as a complete surprise since I know of older children who have had similar issues because of their cancer treatments at a young age, it was still depressing to see it in front of me on Collin's X-rays.

In February Collin had his bi-monthly ophthalmology check-up. When Dr. Ely saw Collin last December, the vision in his left eye had improved from 20/80 in July to 20/60, and his right eye improved from 20/300 in September to 20/70. By the February's check-up, his vision was 20/80 in the left eye, 20/200 in the right eye, and 20/70 with both eyes. Dr. Ely felt he was more nearsighted in the right eye and had more astigmatism in the left eye, which was affecting the numbers. She said his cataracts were still tiny, so she wasn't concerned about them. She wanted us to keep patching and come back in two months.

The next appointment in February was with the endocrinologist. The growth hormone shots are going smoothly, and since seeing Dr. D'Arcangelo in July, Collin gained another two inches in height. However, the bloodwork done at his mri last December showed his thyroid levels were low (hypothyroidism), so it was time to start Collin on synthroid, a man-made replacement for a hormone normally produced by the thyroid gland to regulate the body's energy and metabolism. The synthroid works best if it's taken in the morning on an empty stomach, but shouldn't be taken within so many hours of antacids, which Collin was already taking in the morning on an empty stomach. This led to me discussing his medication schedule with a pharmacist at Hershey's Cancer Institute Pharmacy. She layed out the following schedule:

•Give Synthroid first thing in morning with 4 oz water
•1/2 hour later give Prevacid with water
•1/2 hour later give Carafate
•1/2 hour later give breakfast
•Give Carafate 1/2 hour before lunch
•Give Prevacid at least 1 hour before dinner
•Give Carafate 1/2 hour later
•1/2 hour later give dinner
•Give Vit D with dinner
•Give Carafate and Growth Hormone at bedtime

Then she also advised me to ask to have Collin's aluminum level, vitamin D level, and his renal and liver functions checked the next time he had labwork done, because vitamin D can increase the absorption of aluminum in Carafate. The next day, the Cancer Institute pharmacists discussed it further, and discussed their concerns with Dr. Qureshi. He then called me, and told me to stop giving the Carafate altogether.

In April, we saw Dr. Barbour, Collin's new oncologist, for a routine check-up. I asked if he would consider ordering a mra (magnetic resonance angiogram) to be done as a baseline with Collin's next mri. The mra looks specifically at the blood vessels in the brain, whereas the mri looks at the soft tissue of the brain. Many of the kids I know of who've had brain radiation have developed problems years later like brain bleeds and strokes, and some doctors think it is a good idea to do at least a baseline mra. Dr. Barbour said he would research it and see if was worth doing. Then I asked him about a referral to dermatology, since I regularly find new freckles or moles on Collin, and it's the one discipline we've never followed up with. He felt it was a good idea to have him checked because of the radiation. The soonest available appointment was in August.

Collin also saw Dr. Ely again in April. The vision in his left eye was 20/40, and the vision in his right eye was 20/70. If his vision were to remain that good years down the road, and he has no other issues (problems with peripheral vision, reaction time, cognition, etc.), he could qualify for a restricted driver's license. Dr. Ely told us to keep patching, and she'd see him again in another two months.

In May, Collin saw his pediatrician, Dr. Rose, a few times for various reasons. He got the last of his vaccinations redone, so he is finally protected again. I had also found a lump in the side of his neck, so we were monitoring it. Dr. Rose felt it was benign, but because it got larger, he ordered an ultrasound, which confirmed the lump is a cebaceous cyst. It is harmless, and may eventually go away on its own.

At the end of May, Collin had his mri and mra. Thankfully, the mri showed no evidence of disease, and the mra showed no problems with the arteries in his head. However, his bloodwork showed iron deficiency anemia, so in the beginning of June, he had an Iron Dextran infusion in the clinic, which took a few hours. Collin had discomfort with the IV, but we couldn't figure out if it was the IV itself, or if the infusion stung going in. We tried everything we could think of short of taking the IV out and reinserting it, but since it's so difficult to get an IV into him in the first place, we didn't want to do that. Collin has a fairly high pain tolerance and is usually calm and collected during procedures, so it was pretty hard for me and the nurses to see him upset and uncomfortable.

In June Collin had another vision check with Dr. Ely. The vision in Collin's left eye was 20/40. The vision in his right eye was around 20/80 reading a line of letters, which is harder than reading just a single letter on a screen. Dr. Ely wanted us to keep patching, and come back in two months for a re-check.

In July Collin had his 63rd acupuncture session. Dr. Xu is now seeing him every six months. We also saw Dr. Qureshi, the gastroenterologist, in July. He didn't want to make any changes since Collin is doing well.
I told him about the anemia and iron transfusion, and explained that I had been trying to figure out what caused the iron deficiency since nothing in Collin's diet had changed. He said he would be willing to do another endoscopy if there was a reason to suspect bleeding somewhere. He will see Collin again in 6 months.

In August Collin had a clinic visit with Dr. Barbour. I was still trying to figure out what caused Collin to become iron deficient when he never was before. In my research, I read that it is recommended to take vitamin C with supplemental iron, because the acid in the vitamin C helps increase the amount of iron that is absorbed. That led me to wonder if the Prevacid that Collin has been taking for so long is preventing iron absorbtion since it cuts the stomach acid. Dr. Barbour agreed the theory makes sense, especially if there is no bleeding anywhere causing the deficiency. He sent me home with the supplies needed to get three samples for occult blood tests. If any of them were to be positive, we would look at doing another endoscopy (it turns out all three were negative, so it doesn't apoear that Collin is bleeding internally). The next time Collin has labwork, Dr. Barbour will check Collin's iron and vitamin D levels and decide if we need to increase his vitamin D, add vitamin C, and add a multi vitamin to increase his iron.

After seeing Dr. Barbour, we went to dermatology and saw Dr. Barros. He looked at Collin's freckles/moles and the spot on Collin's chin that appeared in April. He had the department chair, Dr. Miller, come in and look as well. They said chemo can cause a lot of moles, as can radiation. They looked very closely at a large freckle on Collin's head, and took pictures of it. They told me that if that freckle, or any of the others, change in appearance, size, etc., I am to let them know immediately. The spot on Collin's chin is a juvenile xanthogranuloma, and it can be left alone for now. They want to see Collin again in six months, and then yearly after that.

We returned to Dr. Ely in September. The vision in Collin's left eye was 20/50, but the vision in his right eye was 20/200. I told her we hadn't been doing so well with patching once school started because he's there all day now, so there  are a lot fewer hours to fit it in. She tried to examine his eyes the best she could without dilating them, and used a special camera to get a good look inside them. The camera indicated
there was a significant change in the astigmatism in his right eye, so she felt that might be making it harder for him to see. She wanted us to patch as intensely as we could for the next month, and then she would dilate his eyes and check him again. She said he may need a new prescription for his glasses.

So we returned to Dr. Ely in October. Collin's vision was 20/60 in his left eye, and 20/400 in his right eye. On a second test, the right eye appeared to be around 20/125. It was very difficult to get a good exam done. One reason for this is because of Collin's nystagmus; he cannot hold his eyes still for any length of time to get a good look at something. When she looked inside Collin's eyes, Dr. Ely didn't feel the astigmatism was as bad as the special camera had indicated, but again it was hard to get a good look because of Collin's eyes bouncing around. Dr. Ely also felt that his cataracts were hazier, which would also be affecting his vision, and talked about the possibility of cataract surgery. She decided that it would be best to do an eye exam while Collin is sedated so she could get the best look possible. I told her his next mri was coming up in a few weeks, so she was going to make arrangements to do the exam after the mri while Collin is still asleep.

This month we had an endocrinology appointment. Dr. D'Arcangelo left, so we saw an endocrinologist new to Hershey, Dr. Hale. We really liked him. Collin has continued to gain height with the growth hormone; since his last visit in February he has gained 5.8 cm in height.
However, he continues to gain weight as well, which has me a bit concerned and is making it difficult to find clothes to fit him properly. Dr. Hale had us talk to a dietician before we left. She felt that overall Collin is eating pretty healthy, but she did suggest a few changes we could make.

I think that pretty much catches you up on how Collin is doing medically. As far as other things, he's now in first grade, going to school all day. He loves school, and takes it very seriously. If he has to miss school to go to an appointment, he becomes very anxious about making up the work he'll miss. He has OT and PT at school; we put his OT services at Hershey on hold for now since he's in school all day. He continues to improve with things like handwriting, which he works very hard at. His TSS has been working with him for about three hours each day in school and five hours a week at home; however those hours are going to be weaned back over the next two months because he is doing so well. Collin is raising his hand and participating in class. He is interacting more with peers, and says yes when peers ask him to play at recess. His class is very caring, and many of his classmates enjoy looking out for him and offering help. The staff at his school is wonderful, and he is well taken care of during the day. Collin is happy and doing very well all around, and I am extremely grateful every day.

This Friday, November 11, is Collin's next mri and the sedated eye exam. Please send prayers and positive thoughts his way. I will be sure to post an update as soon as I know the results.


  1. Nice to see an update on Collin! I see a lot of things very similar to Ashton, both behavior and physical.
    It's great that he has so many doctors/resources. And a good school! How lucky you and he are to have that. In my opinion Ashton has missed out on so much without that support, especially with the caring students. Somebody has to teach the students about these things.
    Wow, 2 inches in growth? Is that the total?
    Hope everything continues to go well! I'd love to know what you find out about diet for the weight. Ashton has a very short list of food he will eat.
    Take care!

    1. Hi Kathy!

      We see the endocrinologist about every six months, and each time he's gained a few inches in height since starting the growth hormone.

      The dietician had me go over a typical day of what Collin eats. So for breakfast, he often has an Eggo waffle. We use sugar free syrup, but I do usually put butter on it, so I've stopped doing that. For lunch, I pack him a sandwich, a gogurt, a fruit or applesauce, a small snack bag of pretzels or chips, and maybe a cookie. She suggested subbing popcorn instead of the chips because it's lower in calories. He likes rice cakes, and I found popcorn flovored rice cakes, so they're nice for a crunchy snack without a lot of calories. He also likes slices of sweet bell peppers and hummus, so I pack that now instead of chips and the cookie. She also suggested giving him Greek yogurt instead of gogurt, because the Greek yogurt has more protein and less sugar. At dinner, she said I should keep his serving of meat closer to 2 oz instead or 3 oz, and limit his serving of starchy vegetables to 1/2 a cup. Then if he has dessert, it can be fruit or yogurt, and we'll limit a small sweet treat to maybe twice a week. Luckily Collin seems to be on board with this, and tries to make good choices. He'll regularly ask if something is healthy, etc.

      I think of Ashton often, and hope he's doing well!!

      Much love,

    2. Oops... 2oz instead OF 3oz of meat.