s/o the autoimmune in mother/ child with ASD connection

thetwinkies&Vivi

The mention of possible correlation makes me wonder if there are any studies out there about the use of biologic drugs (humira,enbrel etc) for those who have both an ASD & autoimmune diagnosis, or the use of the biologic for a mother and then consequently the outcome of children on the spectrum (Less likely I suppose as the biologic treatments are still newer). 

Curious bit of possible connection for sure. Do you have links to share regarding any of this -auntie- ? My rheumatologist and I love to dicuss the new advancements in treatment of certain autoimmunde dx with the biologics. Would love to bring this up with her.

*edit; can't tag apparently.oops.

hopecounts

@auntie

I'd be interested too.

thetwinkies&Vivi

-auntie- said:

You could do a lexis nexis search. Last I looked into this the idea was in its infancy in terms of research.

Are the risks of this class of meds in pregancy minimal? I know one of those meds nearly killed one of my young adults Eagle Scouts. I know they can be life changing- but yikes.

It looks like both Humira & Enbrel are Pregnancy Category B. I am on an FDA trial of something similar to Humira. There certainly are some potentially dangerous side effects, but from what I understand they are rare. I was in office yesterday discussing the lowered ability to fight infection that comes with these medicines myself.

 So, those seem safe enough if needed, I suppose. I took several Category C meds during the twins' pregnancy but they were necessary to prevent heart failure for me.The coordinator was very specific about not being on the trial if you are pregnant or have any plans to become pregnant any time soon. They do pregnancy tests at each visit (for which I am now exempt due to my tubual ligation)

https://sfari.org/news-and-opinion/news/2013/large-study-links-autism-to-autoimmune-disease-in-mothers I did find that study interesting. It was my own health complications that arose during the twin pregnancy that got me into rheumatology and got diagnoses on the charts for me. Also, part of what factored into me deciding to not have any more biological children. I am more confident in that decision now, as the needs of the girls have become more evident with time.

thetwinkies&Vivi

I'm now curious to if other's had experiences with PTL and accompanying complications?

hopecounts

No PTL here, pregnancy was simple and textbook except for a severe stomach virus at 23/24 weeks that landed me in the hospital. DD was breech but that is likely from pelvic issues with me. 

Susan_KW

I had PTL with both my children. My daughter is fine, my son has some sort of delay. It's still nebulous as to what is going on with him. We have five evals with two saying no diagnosis, one saying developmental delay, one saying autism spectrum, and one we're waiting on. For my son, I had progesterone injections and two weeks of IV magnesium while pregnant. With my daughter we had no idea anything was wrong with my pregnancy until my water broke. There were no interventions with her - she just showed up 9 weeks early. I don't have any immune system problems that I am aware of. They do run on my husband's side of the family. My MIL had very similar pregnancies as me, so I suspect the prematurity comes from his side of the family - although how pre-term labor can be passed on through the father I have no idea.

kcisthebombdotcom

Nope, delivered on time. Had a picture Perfect pregnancy with dd--ate super healthy, exercise daily and gained 20lbs. Comparatively with ds I ate like crap, was at a stressful job, was really depressed for a good trimester, gained more weight...and he's well developing. Huh.

Susan_KW

Auntie - that is interesting. I suspect my FIL is spectrum-ish. We've heard he was a lot like Ben as a child (inexplicable tantrums into grade school, not listening, in general a challenge to parent) and as an adult he has some quirks. But, he did have a successful career an successful marriage and fathered three children. None of his children are at all spectrum-ish. My daughter and his other grand daughter don't have any autism characteristics. My daughter was even born two weeks earlier with bilateral brain hemorrages and had a much more difficult NICU stay. I------------------------------ I suspect the paternal premature link is more related to an immune system disconnect between fetus and mother.

macchiatto

No PTL here. My boys were born a few hours shy of 38w, scheduled induction at that time b/c they were twins. No real complications. We were so thankful that we had "healthy, full-term twins"; I had some concerns about X starting around 6m but nothing was confirmed until he finally had his EI eval at 2y9m.

typeset

No PTL. My first hung around for 41.5 weeks. That labor was beastly. I pushed for hours without meds, then with an epi, and then with an epi and pit. He had to be whisked off me to be perked up a bit. Initial Apgar of 6. Autism signs noticeable at one month.

Second kid was just over 40 weeks, out in under fifteen minutes of pushing sans meds, with an initial Apgar of 9. Very different kiddo than his older brother, but I'm not relaxing my guard. 

thetwinkies&Vivi

DD1's PTL began around 28 weeks and was managed with a few in patient stays as well as complete bed rest. I also had unmanaged hyper emesis with her. She was born at 38w and required some suctioning/ initial support from the NICU team for aspirated meconium. By 2.5 months, she was hospitalized with FTT due to some feeding issues. She was an extremely colic-y high needs child. I asked for her first evaluation at 15 months. She had been talking in full sentences for some time. I recall her asking about dopplers and stethoscopes while I was pregnant with the twins, so prior to being even 14 months old.

With the twins, I had a week long inpatient stay between 13-14 weeks for HG. I received my PICC line then and also had a zofran pump. The line was removed a few weeks later when I had a massive clot and line infection. PTL began at 22 weeks and was managed for a while with around the clock Procardia. I was managed by a MFM and referred to rheumatology for suspected lupus during the pregnancy. I also saw neuro  (migraines) and cardio (heart murmur issues). My platlets crashed and steroids were needed.They were born at 36 weeks by c/s and required some special care support but were released at 72 hrs. I gave dying my best shot in the OR and required several doses of epinephrin for my heart issues. Luckily, we had already come to the conclusion earlier in the PG with the MFM that this should be my last pregnancy as my body just doesn't seem to be a fan of it all, so I had a tubal ligation done.  DD2 had some extra testing done while in the nursery for tremors. Delays were evident almost immediately. DD2 had a Nissen Fundo with G tube placed around 2 months old. They both were in helmets around 7 months, with DD2 in PT for tort and delays. DD2 saw neuro for potential stroke that was r/o. She also sees cardio for a PFO that has not resolved. They were evaluated for hearing issues; DD1 passed the first attempt, DD2 passed on the 2nd test after a round of ABX for ear infections. Both have delays now (expressive language being the most evident). I have concerns about DD2 showing some of the same red flags for ASD as DD1.

Phew, that is a lot. So yes, it would seem like in my case, my body treats fetus(es) as invaders and gives its best attempt to deliver early with a host of complications along the way.

ETA: with the twins I received 17p shots from 18-35 weeks. I also received the betamethosone shots series right before 35 weeks for their lung development.

Micelle78

I can not speak to the use of drugs for autoimmune and their influence on ASD but I have often wondered if there are other connections along my DH's side of the family with all of their health stuff-- such as MS and bipolar.  We have not dx'd or DS yet but he is getting speech, feeding therapy and OT weekly as well as vision being monitored.

DH has bipolar along with anxiety.  His mother has MS and (I swear bipolar too- just mild enough that she doesn't need meds.)  DH's little sister has serious GI issues and is only 33. She is a personal trainer and is currently getting a PHd.  DH's dad has celiac without it being actually celiac.  They can not figure out what is wrong but he is in amazing shape for a 70yr old (he hiked uphill with me and DH and was not even tired while I felt like I was dying-- I was 30ish at the time).  He is on dietary restrictions as well.

DH's dad was married before and had a daughter, mother was a drug addict-- hence the divorce.  This half-sister has schizophrenia, MS, and anxiety.  Interestingly, she is not related to DH's mom, who also has MS.  So maybe MS is carried on both sides of the family--altho it could be from her mother's side.  DH's paternal grandma has anxiety (though not dx or treated but she contantly "flits around" as everyone refers to it)  She will go through a roll of paper towel a day and lots of soap.  She constantly worries about germs, dirt, etc. 

DH's mom's father is the one with the bipolar.  This is the likely link to why DH also has bipolar.  We made the decision to have kids even though this is a possibility.  What we did not expect was all DS's delays/crazy abilities like almost perfect rote memory- memorizing all the United States at a few month short of 3yrs and hyperlexia presenting at 2 with letter recognition/sound and actual reading by rote and sounding out by age 3 yrs. 

No one on my side or his has ever had any language delays or motor delays or cognitive etc.  My brother has a PHd in audiology, my sister just completed her BA, my father has a masters and small business, I have a BA and teach, DH has a BA, his sister is getting her PHd, MIL has a masters, FIL was a machinist for a nuclear power plant.  So delays were actually the last thing on my mind.  The experience raising DS (just turned 4) has been such an emotional journey as I navigate this world I never wanted him to be a part of (sorry just a long day-- I spent 12 hours yesterday with DH staining my new pergola in 100degree weather)

Looking at all of this I typed, it is amazing DH is not dealing with more than he is.  He also has eczema that tends to flare up when he is stressed.  It goes all over his arms and legs and looks a lot like ring worm.  In fact, I made him go to the doctor to make sure it wasn't (he goes to the gym a lot and worried he picked it up there!).  It wasn't.  He is on so much meds because of the bipolar that I think it is harder for his body to heal.  He cut himself on the weed whacker and the mark was there for months.  It was weird.

I guess I just look at it from my perspective that everyone in DH's family seems to have conditions that are comorbids and highly neurological.  I am sure it wasn't just his family that passed things to DS.  There are a few divorces on my dad's side, so there is a lot of family I never met and we know zero about. 

So after that giant novel, I really do think as time goes on researchers will see a connection to more things that maybe are just guesses right now.  This kind of goes with what Auntie said the other day about presentations of ASDs and why some kids can become "indistinguishable" and some stay in the same place even with the same therapy or being more behind another child (and then that child passes them).  I know that since I am still relatively new to all of this, I will continue to be interested in new studies within reason of course.  There is a lot of crazy out there.

Micelle78

PS- I hope that my description of my family's education did not come across as snarky and like I think that DS shouldn't have had any delays.  I meant that I had no experience with a family member with delays.  Sorry it probably sounded high and mighty--totally not my intent!!  Please forgive me

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d.f

Unexplained PTL here. He tried to come at 30 weeks but meds and strict bedrest held him off until 36w 3d. I've wondered about the chicken or the egg scenario and wonder if medical interventions available for PTL and premature birth are contributing to the increased Dx of ASD or maybe it really was the Terbutaline I took.  I generally don't dwell.

I just went to my grandma's funeral.  I've always lived out of state and I hadn't been back in 5 years.  I have ZERO doubt that there's a genetic component.  We're a quirky bunch.  I'd be shocked if at least 3 didn't meet the criteria and I'd bet my house on one of them.  Several others are "autistic cousins"I kind of suspected but being around the whole family was glaringly obvious.  Especially when I started hearing childhood stories.  OMG.  I told all my cousins (which there are fewer than there were children as only half of the 8 had kids), who are all 22-26 (I'm the oldest by almost 8 years), to keep an eye out when they start having children.