what if a family secret might impact your LO's diagnosis

LadyTexan

DH was adopted when he was an infant. Over the holidays, during a private conversation with DH’s maternal aunt, I learned that she suspected DH’s adoptive father may have been DH’s biological father. DH’s sister (within the adopted family), who was not adopted, died of ALS in 2017. If DH’s aunt’s suspicions are correct, the sister would have been DH’s ½ sister. DH’s adoptive father was killed in an industrial accident at the age of 53. DH’s adoptive mother is no longer living.

I started wondering:

Q1 - Would having a ½ sister with ALS have any impact on DH’s dx?

Q2 - Would having more definitive information regarding the biological father (and the possibility of a ½ sister with ALS) make a difference in DH’s treatment or prognosis?

I presented the information above, along with my questions to DH’s geri-psych doc. She stated It may be worth following up with a neurologist given the possible family history of ALS. I know he previously saw [Dr X], but unfortunately he is no longer with [YZ Healthcare System]. I would go ahead and contact [YZ Healthcare System] to see if there is someone else there that could see him.

My Considerations – 

• DH’s symptoms became noticeable to me in 2016, when DH was 53 years old. 
• DH was diagnosed with EOAD based on interviews, observations, lab tests, neuropsych testing and a PET scan. 
• The attempted lumbar puncture was not successful in extracting fluid. 
• DH’s son is expecting his 1st child. This health information may (or may not) be useful to the son. 
• There is one living relative that I can pursue familial information from, but it may create drama. 

My primary focus is would a relative with ALS impact DH’s dx, meds, treatment and how we proceed in planning for what’s to come. 

My questions for the forum - if you were in my shoes, 

1. Would you pursue more definitive info regarding DH's biological father?
2. Would you see a neurologist to determine if a family member with ALS impacts DH's  dx, meds, treatment, prognosis, etc.

Crushed

strictly second or third hand ,  DH can be tested to see if he has APOE  genes.  if he does it is relevant to his offspring

  https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-genes/art-20046552

I dont see much value in going back into family history But then

"I'm not a Brewster - I'm a bastard!"
Mortimer's relief that he was not related to the crazy ladies in "Arsenic and old Lace "

However, the censors demanded that it be changed, resulting in the phrase "I'm the son of a sea cook!"

loveskitties

Dear Lady T,

ALS appears to be a degeneration of the leg and arm muscles.

I think I would notify his doctors of your new "findings" regarding his father and this disease.  Let them determine if it is worth more testing to determine if ALS present.

My hunch is that it will make no difference since ALS has no cure either.

The only thing which might be important and could be determined later is the genetic relationships.  It would be good for son to know of the possibility, but maybe not now.

Quilting brings calm

You could always sign up under his name for Ancestry. ancestry DNA.  Lots of people have  found out their biological history doesn’t match their known ancestry .   His son may already know facts that you don’t if  he’s already signed up.

JJ401

ALS and Alzheimer’s are similar in that there is no current cure. But, I think the diseases are distinct enough that the diagnosis of one in a relative has no bearing on the diagnosis of the other. Both have a genetic component, but both have lots of cases without the currently understood genetic component.

My DH had his mother and sister both diagnosed with Alzheimer’s (and no autopsy was done). The neurologist took in the information and then told us, that since there wasn’t genetic testing done, that information was almost useless. What was of use was DH’s current condition and testing. 

The son is aware of his dad’s diagnosis, and should be aware of the family ALS case. If he wants he can get genetic testing and counseling for himself. DH’s genetics don’t matter for the expected grandchild, the father of the child’s genetics do.

harshedbuzz

LT-

In your shoes, I might start with a private conversation with his PCP to see if your DH's diagnosis is worth revisiting. 

The auntie could be on to something, or she could be an old crazy person with an axe to grind.

There is such a thing as familial ALS, but it represents only 5-10% cases of ALS.

There does seem to be a relationship between ALS and FTD; they can be co-occurring conditions. 

Medication for Alzheimer's (AChE inhibitors) can cause irritability for those with FTD. 

I probably would not create family drama and pain for others over medical conditions for which there is little in the way or treatment and nothing in the way of cure. If you went through the process of revisiting a diagnosis, I would mention a change to his son if there actually is a change. I would ask the diagnostician if the changed diagnosis has implications for his son. It might not.

HB 

Jo C.

This is a difficult matter. First; the aunt "suspects" who the father of your husband was; she did not say she "knows" with certainty. You may want to ask her more about this "suspicion."  However, what she feels she believes may or may not be accurate.  Since  there are other family members, if this is causing concern especially as related to your husband's son and future grandchildren, one could actually have an ancestry DNA test done.  Easy and inexpensive.  If anyone within the birth family has had an ancestry DNA test, then they will show up in your husband's results:

https://support.ancestry.com/s/article/Finding-Biological-Family?language=en_US#:~:text=In%20tracing%20your%20family%2C%20you,you%20fill%20in%20the%20gaps. 

Since 5% to 10% possibility of developing this horribly tragic disase is an issue, IF and only IF the paternity is accurate, only then would I think about informing the son of the family history.  Yet; doing so can swing the pendulum both ways; he may be horrified and it may continue to be a worry for him into the future, especially if he has children . . . however IF this is a family genetic possibility, and he is not informed, it may make him terribly upset for not knowing should he or his offspring develop the disease.  If it were me, I would want to know and would consider it my right to know.  Just one person's feelings. 

For those readers unfamiliar with ALS; here is an informative link:

https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022

As for your husband's treatment, it does not appear that it would make any difference.  He does not have ALS; if he did, the symptoms would be very telling and you do not know who his birth father actually was, so if you share any information of this type with your husband's physicians, you must be sure to stress that you do NOT actually know who the birth father actually was.  Except for concern for the son, at this point the idea of ALS is a moot point in regard to your husband.

Hope you can find a way to put your mind at rest regarding this; especially since your DH has a genetic child.  You have time to think about this and to even consult a professional.  Let us know how you are doing with this dilemma, with a little more time and checking facts, you will find the best path to take. 

J.

LadyTexan

Thank you for your thoughtful replies. I will have a private discussion with the PCP regarding the aunt's suspicions. If the PCP believes it makes any difference in DH's dx, treatment, etc. I will decide what (if anything) to do then. I don't want to churn family drama. I don't want to upset DH. He is not aware of my conversation with the aunt.

Thanks again everyone. My mind was churning with a slew of "what ifs". Nothing good ever comes of that.

Jo C.

Whoops - you were Posting the same time I was.   You may want to check out the ancestry DNA link information above which may make all the difference in providing an answer.

As said, IF you relate this to any physician, you must stress that you do not know at all if this person is or is not the birth father of your husband.   He may not be.

J.

Lills

DH was first diagnosed back in July 2015 as having "brain atrophy".  (He had fallen and gashed his head so his PCP scheduled the MRI.)  Everyone, including me, assumed DH had Alz.  His mother died in 1987 of "Alzheimer's".

Fast forward to Nov. 2018 when we changed neurologists (long story!).  He diagnosed DH with FTD/ALS.  The gene is C9orf72--which can be genetically tested.  Symptoms of both (one can manifest itself faster than the other; DH's first began with FTD) are behavior changes,  eating changes ...then the ALS with quivering legs, ..then his legs couldn't support himself.  Memory wasn't a huge problem in the beginning.  He could still compute numbers, etc.  

Moral of my story:  4 of 8 of the siblings have this gene.  It's 50% hereditary. Two of DH's siblings died this past year of FTD/ALS.  Two are in late-stage.  And..I'm positive his mother didn't die of Alz.!  She was the culprit who passed down this gene.  

I realize this is a long-shot, but has your DH been genetically tested?   

sandwichone123

You might ask the son if he's had any genetic testing--either now or after the birth of the baby. It seems to me that he's the most affected by this potential information. As an aside, I probably wouldn't share the reason, just a casual question. So many people get genetic testing these days I was wondering if you had.