How long does the Honeymoon Last?

Honeymoon is a great thing! right? Or is not? Why does it annoy some parents and healthcare professionals? Does it have to end? How long will it last? Are they in Remission or is it the Honeymoon?

Hang in there. I have so much information to share about this, but for now, here are a few things I think you need to know 

The Stubborn Honeymoon
Did you ever go to your T1D team and felt like they just couldn't wait for the honeymoon to be over? I heard that from other T1D parents. I was very surprised to find out that with my own endo team, that not all diabetes healthcare professionals see the honeymoon as a great thing. 

Despite valid scientific reasons to prolong the honeymoon (more posts about this to follow), many members of the diabetic care team don't see honeymoon as a positive thing, but as an inconvenience. Perhaps because it can be unpredictable, specially on a standard American Diet. 

On a recent post, the author of 83 and me shared about the eduation received at the hospital. I was aplauding it in my brain, if you don't know her, please visit the link: Let me be 83 - February 1st 

Just like the blogger above, At the hospital our nutrition training was very poor. We were also told to just let my son eat whatever he wants and just dose for it. I was a little weirded out (is that a word?) to see him being serviced junk food, cheese and other highly inflammatory foods... RIGHT AFTER just coming out of DKA. I mean... didn't he just almost die? Where's the chicken noodle soup? My son was thrilled with the junk food at the hospital though. He had a party. And his blood sugar showed peaks and valleys, non-stop. I was told... that's the new normal. But does it have to be?

The "Honeymoon".

The concept of honeymoon implies his pancreas would be dead in a few weeks. Think how much of a dread this is. But we are telling our T1D kids this.

We know that "honeymooners" have fluctuating glucose readings and have to constantly call their team to adjust doses...well, at least they SHOULD be bugging their endo teams about it, but many do not do it, thinking they need to suffer those peaks and valleys, and that crazy roller-coaster ride is just the new normal. Super highs followed by terrifying low/ (URGENT LOW = Shivers down my spine). 

But, many are not informed there is a better way. So...when the honeymoon is "over",  maybe parents are just happy to have a constant correct insulin dose and maybe health care professionals feel, it's just more work for them? So Thank the Heavens is over? When managing honeymoon, specially in the beginning, the team will have MANY phone calls asking for insulin to be reduced. But instead of educating parents/patients to reduce dose, parents are often advise on "feeding the insulin", giving perhaps more snacks, more protein, a snack before bed. Going to bed "high enough" to wake up low. Sounds familiar?

sigh.

I think I must have called my team on a DAILY after the hospital stay. The diabetic educator kept telling me, maybe wait 3 days before calling again. Ops. Sorry, not sorry. I'm calling again, two days later. Eventually his doses were progressively adjusted. They went down to almost zero and after repeated, lows. finally down to zero and "as needed" with meals. He officially became the Honeymoon boy!

Is it over yet?
So, When my son was about 4 months after his Diagnosis he had an appointment with his Diabetes Educator. This is how the conversation goes: 

- Oh wow, you are honeymoon is stubborn. I thought this would be done by now so we can have a discussion about pumps. I'll be right back.

When the Diabetes educator left the room rather quickly, I asked my son:
- What did she say? (I was trying to make sure I heard what I heard)

- She said she though my honeymoon was stubborn.

- I thought that's what she said. Wow. Really?

- Mom, she does not think I can be in honeymoon. She does not believe in me. I'll show her.

Where's the mind-blow/angry emoji for the educator? Where's the super proud emoji of my son's stubborn spirit? I have no type to look for it, but just imagine it, please.

No matter what you believe about T1D, and the truth about this disease, and how much truth we need to tell the kids...I don't think T1D remission should be viewed as negative. I don't think we should give the kids impression they are about to fall out of honeymoon wagon any day now. I don't think they need to live with just "get it over it you are diabetic". What happened to positive thinking? What happened to let kids adjust to their diagnoses? They are going through so much. Healthcare professionals! Just. Be. Patient. It's not over yet. Pancreas is still making insulin. Be patient.

Because the truth is... honeymoon can last for years!!

Don't believe me? Here are some resources for you!

First of all, Honeymoon is scientifically defined as REMISSION! I don’t call it the honeymoon, but remission. Just as with cancer there’s a possibility he will Came out of remission, but I’m praying for a long remission, if not. Forever. Science describes honeymoon as remission but health care professionals everywhere use honeymoon because in most people they call it temporary. Because most people eat the Standard Diet and burn through those last few Beta-cells pretty quickly.

People of the earth, listen up! I’ve been married for 14 years and my husband and I are still on the honeymoon. Holding hands and treating each like such. It depends on the choices you make early on in your marriage. So I think my son can be in the Honeymoon phase forever! Who knows? maybe a cure will came up before he leaves this phase. There is hope for prolonged honeymoon. And from now on, I'm going to refer to this a REMISSION! Just like any other disease. T1D does not have to be a debbie downer, "your-pancreas-is-dead" sentence. Because guess what? It does not completely die for most people!

A few references for you, but I encourage you to to PubMed and enter the keywords Remission, Type 1 Diabetes. Just do it.

Some citations for your entertainment

"In the paediatric population, frequency of partial remission has been documented to be 25–100% (1)  and the range for duration of this partial remission was 1 month to 13 years (2)" (YES IT SAYS 13 YEARS IN THERE!)

(1)Martin S, Pawlowski B, Greulich B, Ziegler AG, Mandrup Poulsen T, Mahon J. Natural course of remission in IDDM during 1st year after diagnosis. Diabetes Care. 1992;15:66–74. [PubMed] [Google Scholar] https://care.diabetesjournals.org/content/15/1/66.short

(2) Wallensteen M, Dahlguiat G, Persson B, Landin-Olsson M, Lernmark A, Sundkvist G, et al. Factors influencing the magnitude, duration and rate of fall of b cell function in type 1 (insulin-dependent) diabetic children followed for two years from their clinical diagnosis. Diabetologia. 1988;31:664–9. [PubMed] [Google Scholar] https://scholar.google.com/scholar_lookup?journal=Diabetologia&title=Factors+influencing+the+magnitude,+duration+and+rate+of+fall+of+b+cell+function+in+type+1+(insulin-dependent)+diabetic+children+followed+for+two+years+from+their+clinical+diagnosis&author=M+Wallensteen&author=G+Dahlguiat&author=B+Persson&author=M+Landin-Olsson&author=A+Lernmark&volume=31&publication_year=1988&pages=664-9&pmid=3069534&

Here's another one mentioning 7 years in Remission

(3)  

Veikko A Koivisto, MD, 

Marjatta Leirisalo-Repo, MD, 

Pertti Ebeling, MD, 

Juha A Tuominen, MD, 

Mikael Knip, MD, 

Ulla Turunen, MD, 

Thomas Mandrup-Poulsen, MD and 

Risto Pelkonen, MD 

Seven Years of Remission in a Type I Diabetic Patient: Influence of cyclosporin and regular exercise https://care.diabetesjournals.org/content/16/7/990

Here's an interesting case where someone when to jail and had spontaneous remission. Please notice how well they define honeymoon/remission and the duration amounts.(4)Moole, H., Moole, V., Mamidipalli, A., Dharmapuri, S., Boddireddy, R., Taneja, D., Sfeir, H., & Gajula, S. (2015). Spontaneous complete remission of type 1 diabetes mellitus in an adult - review and case report. Journal of community hospital internal medicine perspectives, 5(5), 28709. https://doi.org/10.3402/jchimp.v5.28709

Why stay in Honeymoon?

I'll write more about this someday, but in brief!

The more beta cell preservation (remission / honeymoon) the less complications!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4612476/#idm140096770489824title The Diabetes Control and Complications Trial (DCCT) reported that a stimulated C-peptide value >0.2 nmol/L was associated with less hypoglycemia, retinopathy, and nephropathy https://care.diabetesjournals.org/content/26/3/832?ijkey=e316b366fc98544128df7a2a2ae3619070ec5f46&keytype2=tf_ipsecsha

Is he in honeymoon or is it the real thing? Those unbelievable words came out of one of our doctors' mouth. Before you judge him, just hang in there. I have so much more to write! More to came.