I’m started to get a bit freaked out about Hannah’s first cerezyme treatment on Monday. We are told to be there at 10 AM and to plan to spend 3 to 4 hours there. We know that it is an IV infusion, and we know that it is being done at the hospital’s infusion center downtown so she can be closely monitored.
I was looking at Genzyme’s Cerezyme official list of side effects: Side effects related to Cerezyme® (imiglucerase for injection) administration have been reported in less than 15% of patients. Each of the following events occurred in less than 2% of the total patient population. Reported side effects include nausea, vomiting, abdominal pain, diarrhea, rash, fatigue, headache, fever, dizziness, chills, backache, and rapid heart rate. Because Cerezyme® therapy is administered by intravenous infusion, reactions at the site of injection may occur: discomfort, itching, burning, swelling or uninfected abscess. Symptoms suggestive of allergic reaction include anaphylactoid reaction (a serious allergic reaction), itching, flushing, hives, an accumulation of fluid under the skin, chest discomfort, shortness of breath, coughing, cyanosis (a bluish discoloration of the skin due to diminished oxygen), and low blood pressure. Approximately 15% of patients have developed immune responses (antibodies); periodic monitoring by your physician is suggested.
Even though I know this is going to help save her life (at least the physical symptoms if she does have type 3, as this doesn’t help the neurological symptoms), but wow, I am so worried about Hannah’s reaction to the Cerezyme…
Those side effects don’t sound good, but all things medical scare me anyways. I will continue to pray for little Hannah. Wishing you all the best without the nasty side effects!
I will keep praying for Hannah. I hope she doesn’t get any of those side effects either. Good luck Monday ~ I hope it all goes well.
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Dang, that makes it tough–you don’t want to inflict any pain on your child, yet the infusion will help her physical response to the disease… You will have to be strong–and try to view the cerezyme as liquid gold. I believe that children will respond to our anxiety. I will keep you and Hannah in my prayers–little Hannah can do this–hang in there!
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Yes, the possible side effects can be scary, but hopefully she will not be in the precentage that will have any of those side effects. And even if she does we’ll pray that whatever they are they don’t bother her much. She’s a strong baby and her uplifting spirit is going to fuel her to deal with it beautifully.
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It is so scary when we have to balance how much good a medication will do to how much harm it can do. You make sure you talk to her physician (and the nurse, they have better ears, sometimes) about EVERY concern that you have.
Holding Hannah in our hearts!
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Less than 2%. Hang onto that. Most likely Miss Hannah will sail thru just fine and with minimal discomfort.
I’m glad to see that they are going to monitor her closely though. That is comforting!
You know I’ll be praying.
Much love to all of you.
I am confident that she will be just fine. If you read the fine print on ANY medicine, it can be pretty alarming! Tylenol = kill your liver. Advil = stomach ulcers. There is a 98% chance that she will have no adverse reaction at all. Good luck!
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I have Type 1 Gaucher Disease and found your blog through the Yahoo list (I’m a lurker there). I just wanted to let you know that I think it’s great you’ve started this blog to raise awareness of the disease. I’ve been blogging for about 4 years, and I’ve touched on Gaucher but I’ve often thought about doing more to try and raise awareness.
I hope Hannah’s treatment went well. Feel free to drop me a line if you have any general questions about Gaucher — I am not an expert, especially on Types 2 and 3, but I’m happy to be at least another advocate in your fight for Hannah. 🙂
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