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Namenda

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We Tried Namenda (memantine)

It was suggested after a fairly successful several years of amantadine, that we try Nemenda. Namenda is being used successfully in some cases of autism spectrum disorder. We started on the 5mg once a day and eventually worked up to 10 mg twice a day. It was similar to amantadine in that the experience was fast. Within hours the racing thoughts and ruminations ceased. We had a happier, less obsessive human. However, after about 6 months, the effects started to lessen. The aggravation and irritation returned and as we were already on the highest dose, it was hard to figure out what next. We continued with this for an additional year as it definitely did seem to have some cognitive upsides, but eventually, even that seemed to go away. After approximately 2 years we decided to stop the medication as we felt we were seeing no gains from it any longer. Behaviors were returned to baseline.

It took about 3 months to get to a dose where we felt comfortable stopping completely,  it was important to wean slowly as we found even missing a day or two caused some significant upticks in anger and aggression. Now B is completely off the medication, I can confirm that our thoughts were correct. The medication was having little to no effect on OCD or anger/aggression/motivation or functioning any longer. I still believe it is a worthwhile intervention and one worth trying.

See stat sheets below.

Namenda (memantine) is a medication that is FDA-approved to treat moderate-to-severe Alzheimer’s disease. However, there is some evidence that it may also be useful in the treatment of certain symptoms associated with Autism Spectrum Disorders (ASD).

ASD is a developmental disorder that affects communication, social interaction, and behavior. Some people with ASD may exhibit symptoms such as repetitive behaviors, aggression, hyperactivity, and irritability. These symptoms may be related to an overactivity of certain neurotransmitters in the brain, including glutamate.

Namenda works by blocking a receptor in the brain called the NMDA receptor, which is involved in the action of glutamate. By blocking this receptor, Namenda can help to reduce the activity of glutamate in the brain, potentially leading to a reduction in the symptoms of ASD.

While there is some evidence to suggest that Namenda may be effective in treating certain symptoms of ASD, more research is needed to fully understand its potential benefits and risks. It is important to note that Namenda should only be used under the guidance of a healthcare provider who is experienced in treating ASD.

Namenda (memantine hydrochloride) is an orally active NMDA receptor antagonist used to treat moderate to severe Alzheimer’s type dementia.

What Are Side Effects of Namenda?
Namenda may cause serious side effects including:

severe headache,
blurred vision,
pounding in your neck or years,
convulsions (seizure), and
unusual changes in mood or behavior
Get medical help right away, if you have any of the symptoms listed above.

Common side effects of Namenda include:

tiredness,
body aches,
joint pain,
dizziness,
nausea,
vomiting,
diarrhea,
constipation,
loss of appetite,
weight loss,
headache,
swelling in your hands or feet,
fast heart rate,
easy bruising or bleeding,
unusual weakness,
anxiety,
aggression,
skin rash,
redness or swelling of or around your eyes, or
urinating more than usual.
Many people using Namenda do not have serious side effects.

Seek medical care or call 911 at once if you have the following serious side effects:

Serious eye symptoms such as sudden vision loss, blurred vision, tunnel vision, eye pain or swelling, or seeing halos around lights;
Serious heart symptoms such as fast, irregular, or pounding heartbeats; fluttering in your chest; shortness of breath; and sudden dizziness, lightheadedness, or passing out;
Severe headache, confusion, slurred speech, arm or leg weakness, trouble walking, loss of coordination, feeling unsteady, very stiff muscles, high fever, profuse sweating, or tremors.
This document does not contain all possible side effects and others may occur. Check with your physician for additional information about side effects.

Dosage for Namenda
The recommended starting dose of Namenda is 5 mg once daily. The recommended target dose is 20 mg/day. Dosage is increased in 5 mg increments to 10 mg/day (5 mg twice a day), 15 mg/day (5 mg and 10 mg as separate doses), and 20 mg/day (10 mg twice a day). The minimum recommended interval between dose increases is one week.

What Drugs, Substances, or Supplements Interact with Namenda?
Namenda may interact with cimetidine, nicotine, ranitidine, quinidine, sodium bicarbonate, antiviral medication, cold or cough medicine containing dextromethorphan, diuretics (water pills), medicine to treat glaucoma, or oral diabetes medicine containing metformin. Tell your doctor all prescription and over-the-counter medications you use.

Namenda During Pregnancy and Breastfeeding
Namenda should be used only when prescribed during pregnancy. It is unknown if this drug passes into breast milk. Consult your doctor before breastfeeding.

Additional Information
Our Namenda (memantine hydrochloride) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Leucovorin

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Leucovorin – Folic Acid to the Rescue in Autism

Leucovorin is very expensive, a pharmaceutical form of folic acid. Typically this drug is RX’d to those who show a reaction on FRAT testing.

What is FRAT Testing: “Fratnow’s FRAT® measures the presence of antibodies that interact (either block or bind) with the activity of the Folate Receptor A (FRA). FRA is responsible for the transport of folate – and its active component 5-MTHF which helps metabolize folate – into certain tissues, most notably the brain, placenta, and ovary. These antibodies were detected in the blood of numerous individuals with disorders ranging from Cerebral Folate Deficiency, Autism Spectrum Disorders, sub-fertility in women, and pregnant women carrying fetuses with neural tube defects (NTD). Additionally, antibodies have been found in the parents of some children with ASD.”

After showing positive for Folate Receptor Antibodies, we started on leucovorin 10 mg and eventually titrated up to 50 mg twice a day over the course of 2 years. Unfortunately once again this proved to not yield any remarkable or recognizable results. When B finally stopped taking it one day and never resumed, nothing changed. No changes were observed in any area of cognition or behavior.

Read why Leucovorin is used in Autism Spectrum Disorders: The Soluble Folate Receptor in Autism Spectrum Disorder: Relation to Autism Severity and Leucovorin Treatment: 

Our daughter was rx’d Deplin after being given a positive FRAT result – we decline to give this medication after reading through the ingredients and wondering why it needed to be bright orange. We have continued on straightforward folic acid for her but only at 10 mg once per day.

HBOT

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We bought a HBOT

Yes, we are now the proud owners of a Newtowne 27″ Hyperbaric Chamber with a 10-liter Air Sep Oxygen concentrator.

We decided to remark on a series of hyperbaric chamber therapies again. I still think this is a great way to aid recovery; however, due to his demeanor and frustration tolerance as he has gotten older, it became impossible to convince him to dive. Instead, I committed to a two-year dive schedule to see if I could affect any of the symptoms I regularly struggled with due to a diagnosis of fibromyalgia. I completed my final dive of that period in July 2022 and have felt some amazing, lasting effects from the chamber. No foot pain, no migraines, and able to finally sleep on my left side without vertigo, decreased back pain and increased energy. I continue to dive on a regular basis and have chosen it as an integral part of my recovery including continuing during three rounds of the latest viral infection.

IVIG

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IVIG the miracle cure?

At everyone’s urging and our doctor’s blessing, we undertook 3 rounds of IVIG.

Three very difficult infusions over the course of several months. One trip to the hospital with a migraine so bad the vomiting wouldn’t stop and a son crying in pain and wondering why he had to continue to endure these awful, awful events in his life.

The first infusion was exciting, anticipation was at its highest, and this was what we hoped for when we battled our insurance to cover the treatments for our son.  The box of supplies arrived on the doorstep at the house, the product was placed safely in the fridge for preservation and safety. Enough for 2g/kg for my son. We loaded him on Gatorade and got ready to see a significant change from the two-day infusion. Low and slow was sure to win the race.

The day arrived, the nurse came early, and the stick was as troubling but not impossible. The infusion got started. We loaded up on Advil and Benedryl and watched the drip, drip, drip. Adding the fluid bolus, every 6 hours we followed the prevention protocol. Later adding a steroid taper to ensure no headache or migraine occurred. We had heard horror stories. We tried to be proactive.

The infusion was done. We made it through. It wasn’t easy, and it wasn’t smooth but he survived. Unfortunately, no positive results seemed to be initially apparent but we knew it could take time, so we packed away the trash, and scheduled the next infusion.

Still no real changes but one month later, infusion 2. Same anticipation, the same routine, loading fluids ahead of time and being ready, but the nurse was not able to stick him. That nurse left. We decided to stop for the day and give him a break. The next day another nurse came. Success!! but a little more than halfway through, that infusion became too much, he became overwhelmed and we decided it was safer to stop. We calculated he had been given 1.5g/kg and so were not overly concerned about the low dose side effects we were all too familiar with. That night my husband raced to the ER with a very sick, very lethargic child. The ER took into account his situation and administered another fluid bolus with additional magnesium. That seemed to do the trick. My husband loudly and clearly declined the offer of a spinal tap. Instinctively knowing the ER was not the place to get that done.

Infusion 3, and while it went ahead and we did get most of the fluid and IG product in him, it became apparent that this was not going to continue. We were not seeing results and the steroid taper on the last attempt left him with significant body pains and just a feeling of irritation, anger, and frustration. We stopped and decided that, while it was worth the attempt, the answer wasn’t to be found in IVIG.

Complex Medical Conditions and Bankruptcies

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Medically Complex?

That Costs Money, a LOT of money

Everything costs money, we get that but when we look at complex medical conditions and bankruptcies, we know, having a chronic condition costs more money than most can imagine.

Everything has a price, everyone deserves to make a living, all should be compensated for their experience and genius. We understand and support these ideas, of course, this is America after all. But … (pity party warning trigger)

When you are faced with [Read more…] about Complex Medical Conditions and Bankruptcies

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