Twists and Turns
By Cathy Jameson
If you’ve been following the saga, praying about the issue, or are just curious about whatever happened with all of the things I was so worried about in December, here’s an update. That’s how I started a post to family and friends midweek last week. Since so many in our community here have reached out about the recent issue that’s still not fully resolved, I want to share the update here as well. Edited just a tad, here is more of the story…
We finally got name brand Lamictal late last week! It wasn’t the right form of the medication though. Does that matter? I don’t know. Ronan had been taking the disintegrating tablets, not the non-disintegrating tablets we were sent, nor in the tablet dosage that was sent.
While we waited so desperately for the name brand, Fiona - Ronan’s big sister and future Biologist, helped me create a spreadsheet. It tallied the dwindling supply of the disintegrating name brand tablets we had on hand and the cheaper, generic pills we were told to use. Even with her very well thought out calculations, I was apprehensive when the day came to mix the meds. Since adding in more of the generic, Ronan’s been napping a tiny bit more than usual, he’s been a lot more drool-y, and yesterday, he put himself back in bed within half an hour of being awake and slept for about 2 1/2 hours.
You cannot tell me that the generic comes without risk.
Look at the price difference.
It is astronomically different!
Don’t forget, unless I forgot to tell you, we have had two medications switched to generic form recently. The second one also had some supply issue problems that caused delays. Ronan had been on the generic of that medication a little bit longer, so hopefully we’ll see some improvement now that we have the correct form. The pharmacy manager at the specialty pharmacy went to bat for us and overnighted the correct form of the second medication just this morning. I’m not sure what strings she had to pull or what strong words she needed to say, but she was able to override all the red tape within hours. Insurance had to be put in its place, so thank you Miss A. for kicking some major butt for my kid!
Long story short, we have had great help solving some of this major issue, but we are not out of the woods yet. Prayers are always appreciated for all the things we never expect to have to handle but somehow, eventually, manage to work through.
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If you’re the praying type, I’d love to ask you to also continue to join us with the special intentions we’re keeping on repeat. It’s been a trying few weeks. It doesn’t help that I don’t know everything there is to know about pharmaceuticals and supply chain issues. I’d meant to take some time last week to look at those different medication formulas (if that is the correct term to use). But making extra phone calls about other pressing issues and managing another medical emergency with one of the sibs, took over any extra time I thought I’d have to do that. I will spend a bit of time this week looking for answers to questions I don’t have a complete answer to since this all started. Questions like: Is the disintegrating form of the medication created with different ingredients than the non-disintegrating? Do the disintegrating ones absorb faster than the non-disintegrating ones? Is mixing the meds, (name brand plus generic) as was suggested, common practice? Or is that done only in dire situations like how our situation felt? If these particular medications are manufactured in other countries, would they be effective? Many people gave us great suggestions and gave me things to think about when I initially shared the problems we were having getting the meds. People are still offering to look for the meds elsewhere, including overseas and thousands of miles away. I cannot tell you how comforting it is to know that dear friends, as well as complete strangers, would go to the end of the earth for my child.
Ronan’s next appointment with his specialists is just a few weeks away. It happens to be scheduled the day after the manufacture says the tablets he typically takes will be back in stock. I’ll hope that they will be and that things return to our normal soon after. I’ll hope that when we talk to the doctor that we can create a better emergency plan should this medication roller coaster ever happen again. I’ve never liked roller coasters. Literal ones and figurative ones, they come with too many twists and turns.
Cathy Jameson is a Contributing Editor for Age of Autism.
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Every day the causes grow more absurd (eggs cause clots) and the lies grow bigger. Two books to buy, read, share, leave in your local Little Free Library.
Ed Dowd's Cause Unknown can't be updated fast enough as we see a steady stream of sudden heart attacks and deaths in the news. Dr. Robert Malone's Lies My Government Told Me and the Better Future Coming speaks to the power of action and personal growth based on knowledge.
Cause Unknown Hardcover
Kindle Edition
Lies My Government Told Me Hardcover
Kindle Edition
Thank you Gayle for sharing.
My son has been off of all seizure medications since the fall of 2020. So far seizure free.
Posted by: Benedetta | January 30, 2023 at 01:54 PM
17 pray without ceasing, 18 in everything give thanks; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:17-18
7 For God has not given us a spirit of fear, but of power and of love and of a SOUND MIND.
2Timothy 1:7
For “who has known the mind of the LORD that he may instruct Him?” But we have the mind of Christ.
1 Corinthians 2:16
Praying for you and Ronan
Posted by: Emmaphiladelphia | January 29, 2023 at 08:17 PM
Benedetta-my son was also on one of the seizure meds after his first grand mal, sorry I can't remember which one after so many years, but it made him extremely violent and out of control. The neurologist switched him to Keppra and he has been fine on it ever since with his seizures under control. The exception was what I wrote in my earlier post about how he had a grand mal because the Keppra was late arriving in the mail. God Bless and protect our special sons.
Posted by: Gayle | January 29, 2023 at 06:52 PM
So glad things are looking better for you all. Glad you have people helping you all out with the madness of Pharmacy. We will definitley continue including you and Ronana in our petitions to the Lord.
Here we are grateful and thankful. The recent Tornados came within 3 street blocks from our home. Several homes in our area were damaged severely. Sam's bus was hit by debris from the Tornado on the way to be dropped off where I pick him up in the afternoon. But Sam, the driver and aide were not injured, just shook up a little. No loss of life- a miracle.
Blessings to all!
Posted by: Gerardo Martinez | January 29, 2023 at 01:50 PM
Some times I wonder on the brand names if the pharma companies pack a higher dose than they claim.
Then when the same stuff in the generic makes the stuff they put in what they say.
Then for some the higher dosage is needed?
Not everyone needs a higher dose. I don't think my son did.
I am so suspicious of every thing now a days.
Posted by: Benedetta | January 29, 2023 at 12:56 PM
Cathy; what happens when he ages out of your insurance? Brand names are not just high, but impossible high, impossible.
As far as mixing medicines, we had to do this a lot. There was no trouble being on one kind, or the other, but not the in between time when my son was on both. I know you are talking generic vs brand name as well as different forms of delivery though. Not totally different medications like us.
Those dissolving tablets though? I wonder if that causes more absorption of the medication? I know that they say to let B12 dissolve under the tongue to get more absorption? So maybe he is not getting correct dosage?
This has nothing to do with your experience, but I want to talk about it, cause it was one of the more horrible times in our lives and thus I want to share.
Going from one type of seizure meds to another and having to mix them for a while was really bad. One of the more worrisome times of our lives, and believe me that we have had some worrisome times.
We had to go through these changes at least five different times, changing from one drug to another.
The in between time when we had to take two different drugs as we reduced one and increased the other was the most dangerous time. My son would have break through tremors, jerks, seizures. Strange how Seizure control was great when he was on one, but not two different kinds. I guess we were lucky, since all seizure medicines stopped his seizures, but not two at a time. Which makes me wonder how some people control their seizures with multiple medications?
We had to change over because of mood problems, or worry about long term effects of the drugs, or an allergic reaction to Lamictal.
Neurologists were not there to hold our hands either. I don't think they know anyway, it is a guess, and an art; not a science. I think ours was on his way to see some extended family in Lebanon.
My son said he could not live this way - from the depression caused by zonogram. We went off of it that very minute, that very day. No in between for that drug, not reducing as we increased another drug for zonogram. We went straight back to Dilantin and I do believe it better that way. I had plenty of all these drugs in our freezer.
Then came Lamictal. I had to rush the transferring of Dilantin to Lamictal. Because the in between time was pretty bad. After that, I though all was fine. More than fine. My son said he had been able to let go of his anger. He thought it was just him, and he had chosen to feel that way. Is that just not pitiful.
I often wonder if I could have gone slower in getting him on the full dose of Lamictal, would he have had an allergic reaction to Lamictal?
He was on it a couple of months, when he went with his grandpa to get a haircut. He came back home with his neck on red and burning. It went away and I thought it was the hairs from being cut. The next dose though and it happened again. So that was the end of that.
Back to Dilantin, immediately. The next slow transformation was from Dilantin to Keppra The in between time again was jerks, absentee looks, till we were totally off of one and totally on the other.
Posted by: Benedetta | January 29, 2023 at 10:43 AM
Do the disintegrating ones absorb faster than the non-disintegrating ones?
Yes, theoretically and practically. That is the (marketed) "advantage". (But, it could be a disadvantage) Differing absorption rates can affect how the drug is handled by the body - blood levels, time in the body, efficacy. This is your go-to argument for getting the brand you want. What is right for one person might not be right for another. One person might actually tolerate the generic better.
Different dosage forms and different brands/generics also have different 'excipients' - extra ingredients besides the actual drug. These may or may not affect efficacy (but they are supposed to be inactive (in theory)). Another good argument for getting what you want.
Is mixing the meds, (name brand plus generic) as was suggested, common practice?
Yes. But, especially with "narrow therapeutic window/index drugs" (ie anticonvulsants), it is not the best practice and *should be avoided* in non-emergency situations (another good argument). However, drs, pharmacists, ins companies hand-wave this off. (Cough, cough: $, lazy, etc) Mostly, they just try to make you take the cheapest/least amount of work for *them* ($, don't want to do prior authorization, don't want to source or investigate).
Drug approval:
Brand name drug approved (different levels of studies required for approval) - on patent for a period of time. More $ to bring to market, because more studies required.
Generic Approval: only have to show that their drug contains +/- 10% of *active* ingredient (not excipients). Note again - some people cannot tolerate excipients for whatever reason.
If these particular medications are manufactured in other countries, would they be effective?
Most meds are now mfr in other countries. Unknown/hopefully. Could be better, could be worse.
Let's Pray: Bless us O Lord in these thy gifts which we receive for Ronan from Thy bounty through Christ our Lord. Amen.
Posted by: Mama | January 29, 2023 at 10:31 AM
Cathy-I understand and sympathize what you are going through with Ronan's seizure meds as I wrote in a previous response, the same thing happened to my son when the mail was late and he didn't get his seizure med on time. The terrible result was that he had a grand mal seizure going without his med for so many hours. Thankfully he was home when it happened and we held him until it was over and then he wanted to get in be and he slept for several hours from exhaustion. I will continue to pray for both our sons that we won't ever have to go through these trials with their essential seizure medications in the future. God Bless our special sons.
Posted by: Gayle | January 29, 2023 at 10:18 AM
Still praying.
Posted by: Mama Prays | January 29, 2023 at 09:37 AM