Is anyone a pharmacist or chemist?

[AngelaVA]

My child has epilepsy and takes liquid suspension anti seizure medication. I have noticed she can do really well all month and then when we get to the end of the bottle that last week we have a lot of breakthrough seizures. This is the second month that its happened. I shake it really well and use a dosing syringe. Is it possible that still, the medicine at the bottom of the bottle is less concentrated? Would asking for name brand vs generic improve the quality of the suspension? FWIW it's oxcarbazepine.


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[Soliloquy]

I'm NOT a pharmacist or a chemist but I majored in biochemistry for my first 3 years of college. Not that that means anything. But, my understanding is that, if anything, the suspension would be more concentrated at the bottom of the bottle, not less. I wonder if the suspension loses its potency with time?

I would definitely call the doctor AND the pharmacist because there is hopefully an easy solution.

We do have at least one chemist here and a pharmacist's wife. Maybe one of them will have an idea.

[Aerynne]

Also not a pharmacist but I have a background in a different medical field.

I wonder if you could get a new bottle slightly early and start it slightly early. So for example you go three weeks on one bottle, then start the new bottle even though the old one isn't empty. Then you would know if it was something with the medicine or just a once a month thing with your dd.

Could your dd be doing some kind of cycling? Like menstrual cycle even if she isn't actually menstruating yet (as I understand it's not just that that flips a switch at some point, but there are some hormones in preparation). 10-12% of women with epilepsy see it affected by their cycle (more seizures at one time or another- it can be at different times in the cycle for different women, though, so one may have more seizures around ovulation and another when having a period, etc.)

Do you draw the dose from the top or the bottom of the bottle? If you draw it from the top, then at the end of the month you really are at the real bottom of the bottle. But if you stick the syringe down to the bottom then you would always be taking the most concentrated until the end when the least concentrated is left. But that's if shaking it doesn't work fully.

[Maedchen]

Not a med tech either, but my husband has to have compounded liquids and we had trouble with the 2nd bottle (2 bottle RX) becoming moldy before the end of the month. I asked our pharmacist about it and asked if we could pay for both bottles, but have them make up the 2nd bottle mid month. She thought that was a good idea and it is working.

I realize your problem is not the same, but if you really think it is a concentration level, talk with the pharmacist and ask their opinion and then ask if you could have them give you 1/2 month..........go back and pick up the 2nd half that you paid for mid month or possibly put it in 2 smaller bottles so it is the same strength in both bottles.

[AngelaVA]

Originally Posted by Aerynne

Also not a pharmacist but I have a background in a different medical field.

I wonder if you could get a new bottle slightly early and start it slightly early. So for example you go three weeks on one bottle, then start the new bottle even though the old one isn't empty. Then you would know if it was something with the medicine or just a once a month thing with your dd.

Could your dd be doing some kind of cycling? Like menstrual cycle even if she isn't actually menstruating yet (as I understand it's not just that that flips a switch at some point, but there are some hormones in preparation). 10-12% of women with epilepsy see it affected by their cycle (more seizures at one time or another- it can be at different times in the cycle for different women, though, so one may have more seizures around ovulation and another when having a period, etc.)

Do you draw the dose from the top or the bottom of the bottle? If you draw it from the top, then at the end of the month you really are at the real bottom of the bottle. But if you stick the syringe down to the bottom then you would always be taking the most concentrated until the end when the least concentrated is left. But that's if shaking it doesn't work fully.

Insurance is crazy strict about letting me get it early. The pharmacy is 30 min from my home and I have tried to get it a week or so early before for convenience reasons and they won't let me. It's about $300 a bottle so maybe that's why.

She is only 6 so I'm not sure about the cycling thing. I do think growth, physical and developmental grown lower her seizure threshold though.

We have doses it different ways it can be hard to measure because of the bubbles that get in it when you shake it. I have asked the pharmacists multiple times but they have been really unhelpful. They keep giving me a syringe that doesn't even fit in the bottle and when I point that out they just shrug and say that's all they have so I buy a calibrated medicine spoon and pour it in that. Most recently I found this little cone that you insert in the top of the bottle after inserting and shaking it and you insert the syringe in the cone and invert the bottle as you draw from the syringe. It helps with the bubbles at least and I feel like it's more accurate.


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---------- Post added at 07:55 AM ---------- Previous post was at 07:51 AM ----------

Originally Posted by Soliloquy

I'm NOT a pharmacist or a chemist but I majored in biochemistry for my first 3 years of college. Not that that means anything. But, my understanding is that, if anything, the suspension would be more concentrated at the bottom of the bottle, not less. I wonder if the suspension loses its potency with time?



I would definitely call the doctor AND the pharmacist because there is hopefully an easy solution.



We do have at least one chemist here and a pharmacist's wife. Maybe one of them will have an idea.

The pharmacist has been no help. The doctor when I call in just wants to keep increasing her dose. I have an appointment at the end of the month and I will talk to them more then about it. I also have a new pharmacy opening near me next month and I may switch to them bc I feel like the one we are using should be more responsible and work with me more on stuff. Like they should be making sure I have a proper way to measure it not just blowing me off and leaving me to my own devices to figure it out.


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[Virginia]

Originally Posted by AngelaVA

My child has epilepsy and takes liquid suspension anti seizure medication. I have noticed she can do really well all month and then when we get to the end of the bottle that last week we have a lot of breakthrough seizures. This is the second month that its happened. I shake it really well and use a dosing syringe. Is it possible that still, the medicine at the bottom of the bottle is less concentrated? Would asking for name brand vs generic improve the quality of the suspension? FWIW it's oxcarbazepine.


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Blind post:
My husband is a pharmacist and has a degree in chemistry. I can ask him if you'd like and are ok with that.

[AngelaVA]

Originally Posted by Virginia

Blind post:

My husband is a pharmacist and has a degree in chemistry. I can ask him if you'd like and are ok with that.

Thanks, that would be great, I appreciate it.


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[Virginia]

DH the pharmacist said this:

It's possible. Another possibility would be that the child has some sort of trigger that occurs monthly. You could try brand instead of generic, but it might be difficult to get the insurance company to pay for it (you will almost certainly have to go through a Prior Authorization process, which can take a while).

Another option might be to switch or add on another anticonvulsant. If you haven't tried Keppra (Levetiracetam) yet, it comes in a solution instead of a suspension (so you won't have any mixing problems), and it has the least negative side effects of any anticonvulsant on the market. I realize that anticonvulsant regimens are touchy and that you may have already tried Keppra; I am just trying to offer other solutions off the top of my head. In light of the breakthrough seizures though I definitely think that Keppra would be something to ask the doctor about though if you haven't already. Hope this helps!

Oh, and this is me talking now: Your pharmacists sound really awful The field is changing, and they are THERE to HELP their patients, not just push pills and fill scripts. Grr. I am so frustrated on your behalf that they haven't been more helpful

[AngelaVA]

Thanks. Keppra was actually her first drug. It was effective but she had raging on it which is the most common side effect unfortunately. People call it kepprage.


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[Virginia]

It's possible she could use a dose increase on the oxcarbazepine, although I don't know what dose she's taking right now. It's hard to recommend something when you don't have the full picture.

-DH

[ECingMama]

Originally Posted by Virginia

DH the pharmacist said this:

Oh, and this is me talking now: Your pharmacists sound really awful The field is changing, and they are THERE to HELP their patients, not just push pills and fill scripts. Grr. I am so frustrated on your behalf that they haven't been more helpful

MY BIL got in trouble for taking too long helping patients. I'm glad your husband has had the freedom to help people, but Kaiser is all about the numbers. Be faster.

I agree. Your providers sound awful.

[Virginia]

Originally Posted by ECingMama

MY BIL got in trouble for taking too long helping patients. I'm glad your husband has had the freedom to help people, but Kaiser is all about the numbers. Be faster.

I agree. Your providers sound awful.

That's unfortunate for your BIL

Rite Aid, where DH works, is trending in the opposite direction. They want their pharmacists doing more consultations with patients.

OP, I really do hope you guys find a solution very soon.

[AngelaVA]

Rite Aid is my pharmacy


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[Virginia]

Originally Posted by AngelaVA

Rite Aid is my pharmacy


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[mommychem]

I am an environmental chemist so I don't have much to offer afa advice. I didn't want to read and not respond. I hope your new pharmacist and/or doctor are able to help.