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All I Want for Christmas

Dear santaBy Cathy Jameson

On my birthday and at Christmas, the kids ask me what gifts I want.  Every year on my birthday and at Christmas, I say that I want a nap and for someone to make me lunch so that I don’t have to make it myself.  The kids laugh, “MOM!  No, really.  What do you want?”  Truly, I’d love a nap, but I tell them that whatever they want to give me (hint hint, dark chocolate) would be wonderful. 

Last week, specifically on Friday at 4:27pm when the doctor’s office was about to close for the weekend, I wished for something else—I wished that Ronan’s seizure medications would be filled correctly and on time.  The kids wished for that with me as well.  In fact, they had prayed for that special intention the night before when I shared that we were facing a potential problem filling one of the prescriptions. 

Thursday morning, I’d called 12 local pharmacies asking for their help because the specialty pharmacy we have been using (and love) shared that they couldn’t help us this month.  The manufacturer of the medicine is out of stock.

“Call around.  See if any has the drug on hand, on their shelves right now.  We can transfer the script to them right away if they do.” 

One by one, each of those 12 pharmacies said, “Sorry, no.  We don’t have it.”  Each one shared the same message we’d already gotten – the manufacturer is out of stock, and no expected date of availability or delivery has been given. 

Later that evening, right before family prayer time, Izzy asked quietly, “Mom, if the company doesn’t give us the prescription, can this cause something worse for him…like death?” 

I wasn’t surprised that her mind went there.  Mine had, too. 

“Oh, sweet girl,” I started, “We’ll hope that it doesn’t come to that.”

I’d already cried about the situation, but my heart ached again after hearing my daughter’s question.  Ronan’s siblings know that missing meds can cause issues.  A few times over the years, their brother has missed a dose.  That’s usually because I think my husband gave it to Ronan, and he thinks I’ve given it.  That hasn’t happened in a long time thankfully, but with the manufacturer out of stock, it wouldn’t be one or two missed doses.  It could be days, if not weeks, of missed doses.  Not wanting to face that, I was back on the phone Friday morning and into the evening also.  By nightfall, I’d called 15 pharmacies, communicated with the nurses at our doctor’s office multiple times, talked to our insurance company about new issues that had cropped up and even left a message at a Senator’s office asking for assistance. 

So far, no one has been able to help us with the situation. 

Then, the already terrible situation got worse. 

Right before close of business on Friday, I discovered that it wasn’t just one prescription refill that couldn’t be filled.  It was now two prescriptions that are in jeopardy of not being filled timely.  

I can’t tell you what was more stressful – knowing I couldn’t do anything more myself about any of it because it was officially the weekend or battling the horrible What If thoughts that were running through my mind.  We’ve faced medication shortages and minor delays in shipment before, but we’ve never faced waiting endlessly for one of the meds to finally become available. 

In the calls I made on Friday afternoon, I finally got a date from one of the kind pharmacists who really wanted to help but couldn’t.  Even for her, getting the medication to me is out of her control. 

“Call back in mid-February.  The stock should be back up by then.” 

In a tough situation, I would usually say something hopeful like, “It’ll work out.  Things always do.”  But this time, facing this pretty serious situation, I’m not in that hopefully-ever-after sort of mindset.  I’m worried, especially with the Christmas holiday coming up when businesses will close sooner and stay closed longer.  If you are the wishing kind, I’d love it if you could please wish along with me – wish that this medication issue will be resolved and quickly.  If you are the praying kind, please oh, please, pray with me and my family, and for other families who are likely facing the same medication refill problem.  Lord, help us get the help we need to keep Ronan healthy and seizure free.  Amen. 

Cathy Jameson is a Contributing Editor for Age of Autism.


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Comments

David L

All patients with 4 conditions known to affect vitamin B6 concentrations in the brain present with early-onset epilepsy that is resistant to conventional antiepileptic medications Examples: https://pubmed.ncbi.nlm.nih.gov/18062169/ and https://rarediseases.info.nih.gov/diseases/10730/pyridoxal-5-phosphate-dependent-epilepsy

Children with autism had a 75% higher level of total vitamin B6 than the controls. Most of the autistic children (77%) had levels that were more than 2 standard deviations above the median value of the controls. The autistic girls also had elevated levels. These results are consistent with previous studies that found that: (1) pyridoxal kinase had a very low activity in children with autism and (2) the active pyridoxal 5 phosphate (P5P) form levels are unusually low in children with autism. Thus, it appears that the low conversion of pyridoxal and pyridoxine to P5P results in low levels of P5P https://pubmed.ncbi.nlm.nih.gov/16494569/

Supplementation with higher concentrations of the pyridoxine form of Vitamin B6 actually leads to decreased vitamin B6 function and it competitively inhibits the active pyridoxal-5-phosphate (P5P) form according to recent research. Pyridoxine is the toxic form according to the research and suggests therefore it should generally be avoided except in very low dose which the body can covert. Vitamin B6 needs Zinc, Magnesium, and Vitamin B2 (flavin mononucleotide (FMN); also known as riboflavin-5’-phosphate) in the natural B6 conversion to the active Pyridoxal 5'-phosphate (P5P) form. https://www.sciencedirect.com/science/article/abs/pii/S0887233317301959?via%3Dihub

The marginal vitamin B6 deficiency appears to relate to an increased risk of inflammation-related diseases, Recent studies have revealed that vitamin B6 treatment increases cardiac levels of imidazole dipeptides (eg, carnosine, anserine, and homocarnosine), histamine, and y-aminobutyric acid (GABA) and suppresses P2X7 receptor-mediated NLRP3 inflammasome. These modulations may also be involved in the underlying mechanisms through which vitamin B6 suppresses oxidative stress and inflammation. https://link.springer.com/article/10.1007/s00394-021-02665-2

Benedetta

And Health Aid;
We went through a long list of different seizure meds. Lamictal was the best one, except when he started breaking out solid red around his neck. He was allergic to it.
My daughter takes it though.

One thing about zonnagram seizure med, or zonnagran or what ever - it causes such depression that they stop eating. We did not have a weight problem while on it. If it takes not eating to get one better then that medication should have cured him, if one does not commit suicide first.

I came out smelling like a rose on this vaccine injury deal; compared to what it could have been.

Benedetta

Health Ad Healer;

For seizures: A low fat diet and fasting seems to be the key to everything for everything. I am not sure that milk bothered us especially whole milk Gluten did though.

Fasting we have done 24 hours, 2 days at a time, years ago. We did the Protein Power thingfasting thing that was like the intermittent fasting that is being recommended right now. -

Dr. Mercola and David Asprey's ideal of eating during an 8 hour window or less, but still not truly fasting - as in if you eat a breakfast make sure there are no carbs, so you can stay in ketosis longer. That is just amazing for us.

N acetyl cysteine helps in all things too.

I am pretty sure that the B complex I ordered out of Canada really helped with my daughter's bipolar. and my son"s and husband's health too. It is methyl B 12, folic acid, and then the B6 was the more bioavailable P5P instead. Although B6 seemed to be pretty good too. Better than nothing.
Oh, and if they put that choline in with the inositol too. That helped. It can get pretty complicated.

Methylene blue two drops a day in water - seems to make a difference in energy. It has kept bladder infections away.

I am not sure about Mercola's H2 drink. But we only do that twice a week, or much less.

But mine have a weight problem we are working on. We are working on that. So far seizures and anxiety and sudden mood changes, depression are gone. The biggest complaint is often lack of energy and weakness.

I think Co enzyme Q 10 has always been a waste of money, PQQ might be the same? I added Berberine just to the mix today. We will see if it makes a difference.

Anonymous Person

For Christmas, I want everyone to urge Publix to completely stop offering the mark/vaccines to customers and all people of all ages. Disgusting how their website is still offering these dangerous marks of the beast to the sheeple, while disallowing them ONLY for certain age groups. I enjoy Publix, but love Yeshua Jesus far more than that.

David L

If you are referring to pain specifically, it mentions that people have found good results when it is used for chronic pain (such as pain mentioned in the list in my prior post) when taken over a few weeks to let levels build up in the body, as opposed to perhaps using it more for acute pain (short term pain such as an occasional headache and not a migraine that happens regularly).

Health ad healer

Benedetta,

What have you originally found to be of help with autism?

Benedetta

David L:
Does this stuff act like asprin and works immediately, or is it something that should be taken on a regular basis and has to build up in the body?

David L

Yes BENEDETTA, Palmitoylethanolamide (PEA) is produced in the body and combats pain and inflammation. Palmitoylethanolamide was used successfully for chronic and neuropathic pain and inflammation, as demonstrated in clinical trials. These include peripheral neuropathies such as diabetic neuropathy, chemotherapy-induced peripheral neuropathy, carpal tunnel syndrome, sciatic pain, osteoarthritis, low-back pain as you mentioned, failed back surgery syndrome, dental pains, neuropathic pain in stroke and multiple sclerosis, chronic pelvic pain, postherpetic neuralgia, and vaginal pains. Example: https://pubmed.ncbi.nlm.nih.gov/23166447/

Life extension mentioned it also as safer pain alternative: https://www.lifeextension.com/magazine/2019/3/turn-off-the-pain-signal
https://www.lifeextension.com/magazine/2022/9/turn-off-pain-signals
 
Palmitoylethanolamide mentioned to work on migranes, example: https://www.ommegaonline.org/article-details/Ultramicronized-Palmitoylethanolamide-Reduces-Frequency-and-Pain-Intensity-in-Migraine-A-Pilot-Study/452  

Benedetta

Thank you David L.
that is interesting news that I will look into.
Back pain is a major problem around here for some reason.
I see that it helps that too.

David L

All studies examining palmitoylethanolamide (PEA) role in epilepsy and acute seizures were systematically reviewed. PEA supplementation reduced seizure frequency and severity in animal models of epilepsy and acute seizures, in some cases, similarly to available antiseizure medications but with a better safety profile. Preclinical studies indicated a systematically reduced PEA tone accompanied by alterations of endocannabinoid levels. PEA treatment restored the endocannabinoid level changes that occur in a seizure episode, with potential preventive implications in terms of neural damage. Palmitoylethanolamide (PEA) is a chemical made from fat. It is found naturally in foods such as egg yolks and peanuts, and in the human body. Micronized Palmitoylethanolamide is available over the counter as a supplement as one possible alternative to look into. https://pubmed.ncbi.nlm.nih.gov/35053844/

Palmitoylethanolamide (PEA), a substance that is naturally produced in the body, not to be confused with another supplement phenylethlamine, which is also abbreviated as PEA also has shown to reverse autism in mice via PPARa activation and available over the counter. Upon PEA treatment the overall microbial community of BTBR mice was restructured and resulted significantly different from that of untreated BTBR mice. It was able to restore hippocampal BDNF signalling pathway, and improve mitochondrial dysfunction, both pathological aspects, known to be consistently associated with ASDs. Furthermore, it reduced the overall inflammatory state of BTBR mice, reducing the expression of pro-inflammatory cytokines at hippocampal, serum, and colonic level. Significant reductions of all cytokines TNF-a, IL-1, and IL-6 were found in BTBR PEA mice compared to BTBR group (It reduced cytokines both in the brain and the gut). A significant increase in gut permeability was shown in vivo in BTBR mice. The analysis of gut permeability and the expression of colonic tight junctions showed a reduction of leaky gut in PEA-treated BTBR mice. https://www.sciencedirect.com/science/article/pii/S0889159118305488

Propionic acid, a short chain fatty acid, is used as an autism model in mice and rats. Its now been shown that treatment with a selective PPAR-a agonist (activator), fenofibrate here also significantly attenuated the propionic acid induced-social impairment, repetitive behavior, hyperactivity, anxiety and low exploratory activity in rats. https://pubmed.ncbi.nlm.nih.gov/30366038/

Emmaphiladelphia

Wonderful news, Cathy!

Cathy Jameson

PARTIAL SUPPLY ORDERED!

I can get a few boxes tomorrow afternoon. That’ll help secure meds to mid-January. We’ll have to do some creative thinking after that, but I’m grateful for the tons of helpers helping and praying for us right now.

Thank you for understanding our situation, for offering to help, for being ready to travel over the border (!!), and for praying for my son. What a beautiful community we have here. I am so very grateful.

xo, Cat

MamaBear

Prayers on repeat!

Benedetta

If it is Keppra, I have a bunch of old stuff in the freezer.
Dilantin is a good old drug to go to. It just drains the body and teeth of calcium, ad coarsen features if used for a long time.

And surely to GOD they can give Dilantin till your other seizure meds come in.
This is an emergency for heaven sakes.

A praying friend ;)

I will pray.

Emmaphiladelphia

Cathy,
I will be praying for Ronan, that Jesus' healing hand would be upon him.
A son and my husband also have necessary prescription meds which could become scarce.
The Lord may be leading us into a new time of faith healing. Our healthcare system is collapsing all around us. https://www.biblegateway.com/passage/?search=malachi%204:2&version=NKJV

Carolyn  Couglin

Cathy if you can locate this in Canada any where near the Buffalo NY border I will personally drive across the border and get it for you. I could and would drive tomorrow and figure out how to get it to you. I am currently 4 hours away. I will send my phone number to Kim on her email.

Gerardo Martinez

Praying for you and Your family and Ronan during this challenging time. Pray that something can work out. Don't know to much about prescription meds, would going private market work? Maybe super expensive, but just a thought. God bless you and your family.

Bill

Ketogenic diet and radica brain surgery are an answer. Why are autism parents afraid of those options?! Do not forget to get your child genetic and clinical test for Dravet's syndrome or Tuberous Sclerosis complexes.
Seizure medicine will eventually fail you or your child one case in point like my aunt I barely knew in 1999. She was in her late 20s and died of a sleep Seizure despite the many medicines over the years. She left behind 2 young children. Developementally disabled should not have children in most cases who knows if her son has seizure disorders as well.

4Bobby

So scary. My son also takes seizure medication and I pray all our children will have what they need.

Gayle

Kathy-I have an adult son with autism and epilepsy too and this same thing happened to us a few years ago. My son's medication was two days late arriving in the mail and because my son was without his medication for so many hours, the inevitable happened and he had a grand mal seizure. We watched and held onto him until it was over and then he wanted to get in bed and he fell asleep for the rest of the afternoon. These situations are a horrible fear for parents like us and they do lead to severe consequences as a result. I hope and pray that you will be able to get your son's seizure medication before he also has another seizure like our son did. Praying for Ronan and you and family. God Bless.

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