Do You Have BOTH Juvenile Diabetes and Autism in Your Family?

mentalutopia (15) 26 Aug 2007 08:16 PM

I'm sorry to have to say that having an autistic spectrum disorder does not necssarily protect you from Type I (juvenile) diabetes. My son was diagnosed with autism about a year ago. He was diagnosed with diabetes 2 days ago. He is three-and-a-half years old. There is a history of autism in my family, but no history of juvenile diabetes prior to this case; neither condition effects my husband's family.

Kristyn Crow (2526) 26 Aug 2007 09:01 PM

Very interesting. Thanks so much for your comment. I'm still curious whether there is a mysterious link between these two conditions, having to do with autoimmune dysfunction. Are there any other parents out there who have both conditions--autism and juvenile diabetes--in one child, or in one family?

dcload (10) 26 Aug 2007 09:08 PM

I work in the field and there are very few that have autism and juvenile diabetes. I don't know for sure if they are related or not but from what i have run across sure don't seem like it

Kristyn Crow (2526) 26 Aug 2007 10:21 PM

They are very different condtions, but they may be caused by the same type of problem-- a dysfunction of the immune system causing autoantibodies to attack important organs of the body. I appreciate your comment!

meghansteam (5) 28 Aug 2007 12:09 PM

Kristyn - I think this is very interesting stuff. I blogged about it on a new site my wife and I just launched. http://tetsuda.typepad.com/meghan/

It makes sense to me that there is some relation. My daughter has a mitocondrial disorder, autoimmune issues, and is likely to end up with diabetes. We also have a nephew on the Autism spectrum with PDD-NOS.

Might I suggest that the link might be through mitochondrial DNA. There are clear links to mitochondria and diabetes. In addition, kids with mitochonrial issues have pretty severe GI issues. They also can end up with mild forms of Autism.

It is tough to diagnosis because they need to do it through live tissue biopsies and a lot of doctors don't know to check for mitochondrial compex issues.

mentalutopia (15) 01 Sep 2007 02:26 PM

Here are a few relevant articles : http://care.diabetesjournals.org/cgi/content/full/28/4/925 http://care.diabetesjournals.org/cgi/content/full/29/2/484 http://care.diabetesjournals.org/cgi/content/full/29/2/1985-a http://care.diabetesjournals.org/cgi/content/full/29/4/485

Kristyn Crow (2526) 03 Sep 2007 09:11 PM

This is all very interesting and I thank you all for your comments and help. I've got some good sources for research here! I'll be writing more on this soon, no doubt.

Kristyn Crow (2526) 04 Sep 2007 05:22 PM

PS--I'd still love to hear from any parents with both Juvenile Diabetes and Autism in their family tree. (Or experts that could share some insight.)

listfamily (6) 20 Sep 2007 09:14 PM

Hi Kristyn, I have a son that has both juvenile diabetes and autism. We live in colorado but moved from south florida when my son was 4. He was diagnosed in Fl. with autism at age 2 and was diagnosed with diabetes the week we moved to Colorado. I have always felt that there was a link with Autism and Diabetes. I met another mother (who now lives in Mass.) who also lived in Boca Raton Fl. had a son the same age and we went to the same pediatrician (my thoughts were maybe we both had a bad batch of immunizations). Anyway, I have met 2 familys here in Co. that also have both. I am totally open about sharing additional info if you want to contact me. Thanks,

Kristyn Crow (2526) 22 Sep 2007 10:31 PM

I really appreciate you taking the time to comment. I wasn't able to contact you, your username is gone. I'd love to hear from you if you'd like to contact me through the site. What a tough situation you're dealing with. I offer you a cyber pat on the back.

Mondrushfamily (6) 24 Sep 2007 06:19 AM

Our daughter was diagnosed with Autism at age three. She was diagnosed with Type I (Juvenile) Diabetes at age seven. She is now eight. Her hospital has several more cases of Autism and Type 1 Diabetes.

yemmas (135) 26 Sep 2007 11:41 AM

Hi, I was glad to find this thread. My son was first diagnosed with Autism, then Type I Diabetes. He also has Asthma, eczema, and severe migraines with vomitting. His brother is also on the Autism Spectrum, with a diagnosis of Narcolpesy. I have an autoimmune disorder, MS, and have other autoimmune disorders...I have been questioning the connections for awhile now, and if you want more info, you can contact me at amkohen@mac.com, or check out my website, specifically the tab Learn. laugh. Live. Thanks, Ammey http://web.mac.com/amkohen/iWeb/Let%20there%20be%20light/Welcome.html

Kristyn Crow (2526) 26 Sep 2007 04:45 PM

Well, I think it's certainly safe to say that autism and diabetes can co-exist in the same child. I am still very interested in the autoimmune connection here. Ammey, my oldest son with diabetes has symptoms of autoimmune illness affecting his kidneys. This, and the fact that I have two sons with diabetes and one with autism tells me that there is a genetic factor triggering autoimmune dysfunction in our family. Anyone else? What combinations of autoimmune illness are you dealing with?

Thanks everyone, for your comments!

yemmas (135) 27 Sep 2007 07:44 AM

Hi Kristyn, Your childrens books look very cool by the way. I can put a link to your site or books, on my site if you want. I do feel there is a connection and would like to see a Genetics Dr eventually. All 3 of my children have autoimmmune disorders, and I can trace it back to myself, and then my mom and dad who have similar medical problems. In our family...including myself, my husband, 2 sons (ages 14 & 10) and my liitle girl (age 4) we have recieved the following diagnosis, and I probably left some out. For myself, I feel there has to be a more simple diagnosis than having so many diagnosis. I am still tyring to sort out problems with my Autonomic Nervous system, and heart. The Dr said it is likely due to MS, but regardless, of which disorder/disease its caused by, we know there is an underlying autoimmune factor.

Multiple Sclerosis Allergies Normal Tension Glaucoma or Recurring Optic Neuritis Type I Diabetes Asthma Eczema Narcolepsy Autism Sensory Integration Dysfunction Arthritis Attention Defecit Disorder (Inattentive Type) Degenerative Disk Disease (in a young person, requiring 2 surgeries) Dysautonomia causing severe drops in blood pressure Anemia, unexplained Ureteral Reflux GI Reflux C Difficile Infection (HORRIBLE) and Chronic Migraines It's a lot to cope with. I found a website and posted a similar topic there before I found your blog article. The link is http://www.ch3nutrigenomics.com/phpBB2/index.php?sid=30d2ba9238414cac2bd8d46f71313d3a I have gotten a few responses, two from Dr. Amy who has an arsenal of information on genetics, due to her education and job experience in the field. There is much to learn, but I hope that research starts taking a closer look at these frequently co-existing health and development conditions that all seem to be connected by the bodies autoimmune response. The direct link to the thread is http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=13220 I think you might have to join the forum to view it, but maybe not. I don't know about the treatments with all the supplements yet, we are not currently doing it, but I am gathering a lot of information. Thanks and have a blessed day, Ammey

Kristyn Crow (2526) 27 Sep 2007 10:48 PM

Great information for people to have access to. Thanks Ammey and everyone! I am so interested in you moms who have to deal with children who have both conditions in one (and more). How do you manage your child's diabetes when the autism makes him or her unable to understand the reason for the injections? Is it a constant battle, chasing a screaming, upset child around with a needle? I am so impressed with all of you. What dedication and hard work you must endure for the sake of your child. What has helped you get through the hard times?

yemmas (135) 04 Oct 2007 08:26 PM

Your welcome. I can say in my own experience (with my now 14 year old), that the Autism affects my sons living skills, ADL. Self Care is an ongoing issue, and I can see this is where having Insulin Dependent Diabetes AND Autism will affect his independence as an adult down the road.

On the other hand, due to Autism, my son naturally creates routines, some time consuming. This has actually helped him cope with the Diabetes in a strange way. The unpredictable low/high blood sugars upset him but generally speaking he thrives with all of the routine daily BG checks, shots, etc. He is on the Pump now and that has helped cut down on some time consuming rituals he had started with the multiple daily injections. Lining up the alcohol swabs, clipping the needle. Every step was slowly drawn out.

When he was 12 he still had to be held down by several nurses to even get a blood draw, and he doesn't even wince now with shots, or infusion sets. For my son at least, it has its challenges but overall, we are coping with the two diagnosis positively. We just work really hard with helping him to learn to manage his Diabetes as independently as possible. Which I think is a challenge with any kid!!

I haven't found a support group for Autism & Type I Diabetes, but I think it would be so helpful because the Autism affects how well you can manage a potentially life threatening illness like Juvenile Diabetes. My son has communication defecits, so we are always on guard and checking for physical signs of high blood sugars because he may not tell us when he feels sick. When he is low, we can tell, and so can he. It freaks him out so he is pretty good about getting help with a low.

I feel like I am still in the hard times to be honest. Having so many medical challenges to deal with, and the meltdowns too, is so exhausting sometimes. I cope with it by connecting with others and by putting my energy into being a resource finatic. Learning as much as I can about the challenges we are facing continues to be a source of empowerment for me.

crazymom123 (5) 09 Oct 2007 09:37 PM

I find this very interesting. I have two children with type one diabetes and my daugher also has Celiac disease which I hear is very common in autistic children. So can I ask does anyone have Celiac too ? My daughter also has thyroid disease.

thanks

donnampopp (5) 07 Nov 2007 03:39 PM

I have twin boys, aged 9 both with autism, both non-verbal. One of which was diagnosed yesterday with type 1 diabetes. I am overwhelmed right now and would appreciate any direction.

Thank you

Kristyn Crow (2526) 07 Nov 2007 06:39 PM

Wow, Donna, you've got your hands full. Welcome and hopefully we can offer you support. I've got two boys with juvenile diabetes and one with autism. Believe it or not, it does become routine after awhile, and soon you won't know different. But in some ways the juvenile diabetes diagnosis is more intimidating than autism as far as the constant care involved. I'd like to direct you to a few of my previous blogs which might help you -- copy and paste this link in your browser:

http://special-needs.families.com/blog/my-son-has-juvenile-diabetes-and-autism-a-mothers-interview

Also, I wrote a new blog on this topic today. Paste this URL into your browser:

http://special-needs.families.com/blog/another-look-at-the-autism-and-diabetes-connection

Also, feel free to email me by visiting my website at www.kristyncrow.com. I'm sure there are some other mothers who would also be interested in corresponding.

Hang in there! You're an awesome mom!

yemmas (135) 09 Nov 2007 08:40 AM

Hi Donna,

I know it is so overwhelming right now. There are very unique issues when your child with Autism (especially if they are non verbal), has a life threatening medical condition like Type I Diabetes. Will they show signs when they get a low, communicate it to you somehow? Wil you pick up on the clues? Is he gonna just drop to the floor everytime he has a crazy blood sugar level? Will I remember to check his BG all the time? What if I forget his supplies? I had all those thoughts, and still do to be honest.

I just wanted you to know that you are not alone. The first few months are overwhelming for parents of neurotypical children even. So, you do have a lot to take on, with two children with Autism & needing to develop all the Diabetes routines. It will become second nature after a little while, so it wont always feel this overwhelming.

My son who has Autism and Type I Diabetes is moderately verbal however does not communicate very much. He does not tell us when he feels ill or is in pain, even when his blood sugar was 889. We have had some scares, and he cannot manage his blood sugars at all by himself. It is challenging to manage his blood sugars, due to his Autism related issues. We do not let our guard down, ever. I also have 2 boys affected by Autism Spectrum Disorders, which is twice as challenging. Now you have another load to carry, Type I Diabetes.

I used to live in CA (now we live in TN) where my son was a client of a Regional Center. We had to change his type of Respite to Nursing Respite because of the Diabetes, but that helped a lot to have a break where I didn't have to be thinking about his BG Level every second. I don't know which State you live in, but I would be glad to help you find resources if you want. No problem.

You can also check out my site at [URL="http://web.mac.com/amkohen/iWeb/Doya%20Creative/Welcome.html"]http://web.mac.com/amkohen/iWeb/Doya%20Creative/Welcome.html[/URL] I have a lot of stuff on there that might make you laugh, smile, or cry? Depending on what you read.

You can read the blog entry at the link below to learn more about my son.

[URL="http://special-needs.families.com/blog/my-son-has-juvenile-diabetes-and-autism-a-mothers-interview"]http://special-needs.families.com/blog/my-son-has-juvenile-diabetes-and-autism-a-mothers-interview[/URL]

If you need anything, my email is [email]amkohen@mac.com[/email]. [U]Anything[/U] you need just ask.

Take care,

Ammey

socalwonderland (5) 06 Dec 2007 02:25 PM

Hi,

Just found about this blog entry as I was searching on the similar cases - my 5 year old has both Type 1 Diabetes and PDD-NOS. He was diagnosed with the diabetes first at the age 3, and was diagnosed with PDD-NOS this year. BUT I had been suspecting that he was autistic or on the spectrum since he was 1, and had just approached the local school district for the initial evaluation when we found out about his being diabetic (I even told the doctors and the nurses at the hospital about my suspicion). Took us a while, though, to finally get the PDD-NOS diagnosis because we moved from northern California to Southern California. And it really was hard for parents, teachers, and medical personnel to deal with a preschooler to find out the cause of certain behavioral issues knowing that he was diabetic - how do we know being diabetic does/does not play a role? Plus, we (=my husband and I) are both Eastern Asian. Type 1 occurrance in our ethnic group is so much more remote than the rest - about 1 in 150,000-200,000. So it was a sort of natural thing for us to start doubting whether there is any link between Autism (and/or its spectrum) and Type 1 Diabetes.

I'm glad to find this article and all the wonderful people who are leaving the comments to share. Thanks, and keep in touch!

Kristyn Crow (2526) 09 Dec 2007 06:42 PM

Thanks so much for taking time to share your situation, and I hope we'll hear from more moms and dads out there having similar experiences. It's good to lend support to each other! It sounds like you've done a lot of research and your son is in good hands.

timmysgray (6) 17 Jan 2008 05:43 PM

My grandson, Timmy, was diagnosed with both autism and juvenile diabetes at 18 months. He also had GERD - gastrointestinal reflux disease- as an infant, and also has asthma. I am convinced there is a link between all of these diseases. They are all auto-immune. Please let me know if you know of any current research being done on this connection. Thanks.

yemmas (135) 11 Mar 2008 12:04 PM

Just wanted to drop by, I found an interesting article on Vitamin D, where they mention a possible role in Type I Diabetes. You can find a link to the article here, on my blog www.beingammey.wordpress.com. The entry is Vitamin D.