- W's stools were still really loose on the pancreatic enzymes so the GI doctor finally bumped up the dosage. As of July, he now gets three capsules before he drinks a bottle of Pediasure and two capsules before a meal.
- After about two weeks of the enzyme increase, I told his doctor that his stools have not improved. So the GI doctor explained that sometimes the enzymes' effectiveness can be maximized if the child also takes a proton-pump inhibitor medication (usually prescribed for acid reflux). So, W has been trying out Prilosec to see if his stools improve. The compounded medication is nasty (and I'm talking NASTY because I've tried it) and trying to get W to take the medication was a nightmare. For the first several days, Adam and I struggled with keeping the the medicine in W's mouth from injecting it in his mouth with the syringe. Then, I tried putting it in applesauce, then chocolate pudding, but still no luck with W actually taking the medicine. Finally, I found a fruit juice that masks the nasty flavor of the medication and W is finally able to take his Prilosec. And, I'm happy to say that his stools have finally improved. He actually creates formed stools now!! Hopefully, since we're noticing a change in his stools, we can also notice a change in weight gain? (We've only been waiting for him to gain weight for about 7 months now!)
- We did go to the pediatrician in early August because W was cranky and pulling at his ears. Luckily, no ear infection was present! But we did find out that his right ear tube that was still holding on is now working its way out! I'm frustrated because his left ear tube began working its way out within 10 days of surgery and now his right tube started working its way out 6 months later! The pediatrician ordered a hearing test to make sure W still has good hearing with those tubes coming out. Finally, a happy note with his ears because he passed the hearing test with flying colors!
- Over the weekend, W pinched his finger in a sand bucket and it formed a blood blister. I instantly worried about it turning into an infection and wouldn't you know it--it's infected! I put antibiotic ointment on it tonight but I'm calling the doctor tomorrow. Darn infections!
Showing posts with label enzymes. Show all posts
Showing posts with label enzymes. Show all posts
August 13, 2012
August Update
I feel like I haven't made a post in forever! Sorry about that, I promise to keep posting! W hasn't had many serious things going on, but there are a few updates to mention:
June 25, 2012
6 Month Follow-ups
Two Fridays ago, W and I headed up to St. Louis for two follow-up appointments with his specialists at Children's. First we saw his Hematologist and there were two big topics of discussion--Neupogen dosing and baby #2's cord blood. W's doctor received dosing information from the Severe Chronic Neutropenia International Registry for Neupogen that differed from her dosing. She's waiting on the literature/studies that based their decisions but she basically told us that we have two options when it comes to dosing W's Neupogen: 1) current dose that's given on MWF (her suggestion), or 2) smaller dose given every day of the week (SCNIR's suggestion). I found some Neupogen curves online that demonstrate the difference in dosing and how it affects ANC counts, risk of infection, and bone pain. Although the MWF dose is currently working, I can see the benefits for giving Neupogen daily. However, that's 7 pokes for W in one week, rather than 3. Any advice from other SDS-ers?
The second topic of discussion with W's Hematologist was the various possibilities since I'm expecting baby #2. Like any genetic disorder, the likelihood of baby #2 having SDS is 25%. So, leaving a 75% chance that the baby will not be affected by SDS, we want to save the cord blood for Wade, IF he were to ever need a bone marrow/stem cell transplant and IF baby #2 has the same HLA match for Wade. Once again, a 25% chance exists that baby #2 would have the same HLA as Wade, making it a good match for W to receive the cord blood if needed. I asked the doctor about a cord blood registry that she knew of that banked cord blood privately for a sibling donor. She told me about the St. Louis Cord Blood Registry, a public bank. Although this is a public cord blood bank, they also do what is called a directed donation, meaning that the cord blood from baby #2 will be saved in our family's name only. They are no time constraints on storing the cord blood and no fees in collecting or storing the cord blood. The only time fees would come into play would be if we get the cord blood out specifically for Wade. However, if baby #2 is not an HLA match with Wade or if Wade were to not need a transplant, we can always donate the cord blood back into the "public" part of the bank to be used by anyone else who may need it.
After Hematology, we saw W's GI doctor. I had some questions regarding W's lack of weight gain in the last six months (total gain of 6 oz in six months = not good enough). We are still waiting for a food log analysis from W's dietitian, but I can already bet that W's pancreatic enzyme dosing needs to be increased. I believe he's eating more than what the enzymes can digest, resulting in loose stools and no weight gain. His current dose is 1 capsule for solid food and 2 capsules for a bottle of Pediasure. The GI doctor also thinks that W's enzyme dose needs to be increased, but he would first like to see the food log analysis. Because I'm me, I asked the question, "What if increasing his enzymes still won't help him gain weight?" and his reply was, "Well, if that's the case after optimizing his enzyme dose, then I would refer you to endocrinology, because we would have exhausted the possibilities on the GI and metabolic side of things." So, that's still a possibility if increasing enzymes still won't help W gain weight. SDS-ers: Is this common to have an Endo specialist? What is their role with the treatment of SDS?
So, after a morning full of labs, appointments, and questions/answers, my brain is now overflowing with "what if's" and endless possibilities that I have to wait out....and I'm not a very patient person!
The second topic of discussion with W's Hematologist was the various possibilities since I'm expecting baby #2. Like any genetic disorder, the likelihood of baby #2 having SDS is 25%. So, leaving a 75% chance that the baby will not be affected by SDS, we want to save the cord blood for Wade, IF he were to ever need a bone marrow/stem cell transplant and IF baby #2 has the same HLA match for Wade. Once again, a 25% chance exists that baby #2 would have the same HLA as Wade, making it a good match for W to receive the cord blood if needed. I asked the doctor about a cord blood registry that she knew of that banked cord blood privately for a sibling donor. She told me about the St. Louis Cord Blood Registry, a public bank. Although this is a public cord blood bank, they also do what is called a directed donation, meaning that the cord blood from baby #2 will be saved in our family's name only. They are no time constraints on storing the cord blood and no fees in collecting or storing the cord blood. The only time fees would come into play would be if we get the cord blood out specifically for Wade. However, if baby #2 is not an HLA match with Wade or if Wade were to not need a transplant, we can always donate the cord blood back into the "public" part of the bank to be used by anyone else who may need it.
After Hematology, we saw W's GI doctor. I had some questions regarding W's lack of weight gain in the last six months (total gain of 6 oz in six months = not good enough). We are still waiting for a food log analysis from W's dietitian, but I can already bet that W's pancreatic enzyme dosing needs to be increased. I believe he's eating more than what the enzymes can digest, resulting in loose stools and no weight gain. His current dose is 1 capsule for solid food and 2 capsules for a bottle of Pediasure. The GI doctor also thinks that W's enzyme dose needs to be increased, but he would first like to see the food log analysis. Because I'm me, I asked the question, "What if increasing his enzymes still won't help him gain weight?" and his reply was, "Well, if that's the case after optimizing his enzyme dose, then I would refer you to endocrinology, because we would have exhausted the possibilities on the GI and metabolic side of things." So, that's still a possibility if increasing enzymes still won't help W gain weight. SDS-ers: Is this common to have an Endo specialist? What is their role with the treatment of SDS?
So, after a morning full of labs, appointments, and questions/answers, my brain is now overflowing with "what if's" and endless possibilities that I have to wait out....and I'm not a very patient person!
February 10, 2012
Discovering Resources!
This seems to be my full time job lately--finding resources for funding for expensive medications and the nutritional supplements that are considered over the counter. Our insurance company considers Pediasure Peptide and AquADEKs vitamins as "over the counter" and therefore are not paid for. I've been trying to find resources to be able to help us out since Pediasure Peptide is $166 for a case of 24 and Wade needs to drink 2-3 a day.
I'm submitting paperwork to Abbott Laboratories to hopefully have them assist me with the price of Pediasure Peptide since our insurance denies coverage. Hopefully they will be kind enough to provide us with product or at the very least a partial reimbursement!
I've also found a great program to receive some freebies just for needing to be on pancreatic enzymes. Zenpep, a brand of enzymes, offers a program called Live2Thrive, in which anyone with a Zenpep prescription can receive free enzymes until age 2 (then after that age, a $50 voucher for each refill), free ADEK vitamins once a month, and your selection of free nutritional drinks (Scandishake, Scandical, or Carnation Instant Breakfast) once a month. Wade was on Creon, a brand that only offers freebies for Cystic Fibrosis patients. But after finding out about the Zenpep program, we're switching brand names and now we'll be getting his enzymes for free until he's two years old and free one-month supplies of vitamins and high-calorie shakes! This program is Awesome!
Earlier this week, Wade started his Neupogen shots and he needs them three times a week. The original specialty pharmacy, Coram, that the doctor called the prescription in at told me that EACH shot would cost $279.73. This was going to go towards his deductible, rather than paying a prescription copay. After having a week supply (3 shots) delivered to us, I questioned why this price was so high. So, I called our insurance and basically found out that Coram isn't their "preferred" specialty lab. So I asked who was and wanted a quote from them to compare the costs. They put me in touch with Accredo and I spent about 45 minutes on the phone with them to find out that a 28-day supply of Neupogen would cost........are you ready?.......$40 total. So, needless to say, we're switching pharmacies to Accredo. For a 28 day supply, I could have paid $3356.76 with Coram, but now I'll be paying $40 for a 28 day supply!! I was frustrated that I spent so much time on the phone and on hold, but this call was definitely worth it!!
And, I received a call yesterday from the Severe Chronic Neutropenia Registry to let me know that they received some of the paperwork for W. She asked for the rest of the paperwork from his doctor and then they could begin registering him into the registry. Remember, this is the registry that provides Neupogen for FREE once we're signed up, which may take about a month or so.
I'm submitting paperwork to Abbott Laboratories to hopefully have them assist me with the price of Pediasure Peptide since our insurance denies coverage. Hopefully they will be kind enough to provide us with product or at the very least a partial reimbursement!
I've also found a great program to receive some freebies just for needing to be on pancreatic enzymes. Zenpep, a brand of enzymes, offers a program called Live2Thrive, in which anyone with a Zenpep prescription can receive free enzymes until age 2 (then after that age, a $50 voucher for each refill), free ADEK vitamins once a month, and your selection of free nutritional drinks (Scandishake, Scandical, or Carnation Instant Breakfast) once a month. Wade was on Creon, a brand that only offers freebies for Cystic Fibrosis patients. But after finding out about the Zenpep program, we're switching brand names and now we'll be getting his enzymes for free until he's two years old and free one-month supplies of vitamins and high-calorie shakes! This program is Awesome!
Earlier this week, Wade started his Neupogen shots and he needs them three times a week. The original specialty pharmacy, Coram, that the doctor called the prescription in at told me that EACH shot would cost $279.73. This was going to go towards his deductible, rather than paying a prescription copay. After having a week supply (3 shots) delivered to us, I questioned why this price was so high. So, I called our insurance and basically found out that Coram isn't their "preferred" specialty lab. So I asked who was and wanted a quote from them to compare the costs. They put me in touch with Accredo and I spent about 45 minutes on the phone with them to find out that a 28-day supply of Neupogen would cost........are you ready?.......$40 total. So, needless to say, we're switching pharmacies to Accredo. For a 28 day supply, I could have paid $3356.76 with Coram, but now I'll be paying $40 for a 28 day supply!! I was frustrated that I spent so much time on the phone and on hold, but this call was definitely worth it!!
And, I received a call yesterday from the Severe Chronic Neutropenia Registry to let me know that they received some of the paperwork for W. She asked for the rest of the paperwork from his doctor and then they could begin registering him into the registry. Remember, this is the registry that provides Neupogen for FREE once we're signed up, which may take about a month or so.
February 02, 2012
Who is this Boy?
So...Wade has been on enzymes for two weeks now and I think I'm seeing some positive effects of the treatment:
- Active Play: Wade has been dancing, moving, throwing and banging toys and just plain excited to play! He "talks" while he plays and screams with excitement. He is definitely exploring and I've noticed him sticking his tongue out when he's "thinking" and figuring something out.
- Appetite: He has been sucking down bottles lately. Enough to where I've started making 6 oz bottles instead of 5oz every 2-3 hours. He's also been eating more solid food, instead of throwing it and playing with it.
- Development: In the last couple of days, Wade began taking his first couple of steps. We're all really excited to see him walk.
Watching him change into this excited, energetic, and happy boy makes me so PROUD and BLESSED!
January 26, 2012
First Week of Enzymes
W started taking enzymes and AquADEKs vitamins on January 17. He needs an enzyme before every bottle or solid food feeding and the multivitamin once a day with a fatty snack (ie. peanut butter). The enzymes are little capsules and the multivitamin is a crushed up chewable tablet.
Let me just tell you that it has been a stressful week, for both me and W, to get the medicine down. You're supposed to mix the enzyme with applesauce, then feed it to him on a spoon. Yeah, that didn't go over well when W tried taking the spoon with the precious enzymes and either flinging the applesauce, spitting them out, or getting them all over his hands.
Luckily, I have the wonderful support of the SDS yahoo group--so I turned to other SDS moms and received some other ways to give enzymes. Suggestions included chocolate syrup, pudding, pear sauce, putting it in a straw, putting it in a syringe, and just dumping the enzymes straight into his mouth, then offering the bottle/sippy cup.
I tried all of them except the pear sauce, but luckily I found a method that works better than the rest. Believe it or not, the dumping it in his mouth and offering the bottle method has seemed to work the best! It's still not a perfect method, because W is now learning that when he sees the enzyme is in my hand he should glue his mouth shut! Arrggg!
Let me just tell you that it has been a stressful week, for both me and W, to get the medicine down. You're supposed to mix the enzyme with applesauce, then feed it to him on a spoon. Yeah, that didn't go over well when W tried taking the spoon with the precious enzymes and either flinging the applesauce, spitting them out, or getting them all over his hands.
Luckily, I have the wonderful support of the SDS yahoo group--so I turned to other SDS moms and received some other ways to give enzymes. Suggestions included chocolate syrup, pudding, pear sauce, putting it in a straw, putting it in a syringe, and just dumping the enzymes straight into his mouth, then offering the bottle/sippy cup.
I tried all of them except the pear sauce, but luckily I found a method that works better than the rest. Believe it or not, the dumping it in his mouth and offering the bottle method has seemed to work the best! It's still not a perfect method, because W is now learning that when he sees the enzyme is in my hand he should glue his mouth shut! Arrggg!
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