Autism and Crohn’s

[Visual Acuity]

Autism and Crohn’s

Hi everyone,

My son has been recently diagnosed as having Crohn’s. In March they thought he might have it. It took until just now to have the colonoscopy and endoscopy, now it’s for sure. He’s disabled with Fragile X Syndrome (similar to Autism), so it had to be inpatient for it all the tests to be done. They delivered the prep after doing the endoscopy through a tube. Then the colonoscopy the next day for the prep to work. Is that how it’s done for all of you with younger children too?

We have an appt on Nov 4th for the meds consult. It’s an hour away, so they will connect us for someone local to do the treatments. The doctors have been really wonderful through all of this. It’s just so difficult because of his disability. We’re working with a doctor that has a clinic at UW in Seattle that deals with the transition from pediatrics to adult, they thought he would fit in there better. For sure they said he would be on the transfusions, is that what it’s called? and the pills, not sure how we’re going to get through that as he doesn’t swallow pills, so crushed for sure. I’m sure it’s different for everyone, but about how big are the pills for you guys?

How in the world do all of you parents with young children handle this. Any advice would be really appreciated. It’s all quite overwhelming, isn’t it. I must say that on most days I terrified at having to somehow get through all this. He just doesn’t understand what’s going on.

Another reason I’m here, is if there happens to be someone else has a disabled child maybe I could help with what we’re going through, or get some advice from someone that has already been through it.

I’m sorry this it too long, I wasn’t sure how to explain it all so that it would make some sort of sense.

Thank you all so much for you kindness, it’s all so overwhelming and having you here helps a lot.

 

[Maya142]

Sorry to hear about his diagnosis. How old is your son?
There is a Parents of Young Ones support group: http://www.crohnsforum.com/showthread.php?t=59511

I'll also tag Farmwife, whose daughter was diagnosed when she was very young.

Typically tests like colonoscopies are outpatient, unless the kid is really sick or there are other issues. Prep is usually done the day before the colonoscopy and most kids drink the prep (unless they already have a G tube or NG tube).

For sure they said he would be on the transfusions, is that what it’s called? and the pills, not sure how we’re going to get through that as he doesn’t swallow pills, so crushed for sure. I’m sure it’s different for everyone, but about how big are the pills for you guys?

Do you mean he needs blood transfusions? Or iron infusions? There are also some medications that are given via IV - Remicade, for example. A lot of young kids do have trouble swallowing pills, but most are able to learn how. I think some parents have mentioned practicing with mini M&Ms. I'll tag my little penguin - she may have more ideas about swallowing pills. Many medications are also available in liquid form or have capsules that can be opened.

CCFA is a good resource that explains the difference between all the meds used for IBD.

We have found that pediatric GI's tend to be better at handling children. Given your son is cognitively a 2 year old, why are they sending him to a transition clinic? Do you like the doctor there? A Children's Hospital might be a better fit - they have Child Life Specialists to help your kiddo with procedures and are generally much more understanding when kids have a hard time with things.

Sending hugs! The first year is often the hardest. Hang in there!

 

[pdx]

Big hugs to you. I can't even imagine how hard this must all be for your family right now. I hope that now that you have a diagnosis, you can find a treatment that works well for your son.

My daughter doesn't have anything like Fragile X Syndrome, but she does have some issues that make it very hard for her to cope with her treatment. Her primary care doctor has worked with us to find ways to help her get through it all. Like you, we've also had to do some procedures inpatient so that she could be sedated. It was all very overwhelming for her (and us!) at first, but we've made it through the worst of it now.

 

[Cat-a-Tonic]

Hi Visual Acuity. I don't have much to add, but for what it's worth - I have long suspected that I might have Asperger's, and I also have some form of IBD (not yet fully diagnosed, not sure which type of IBD I have - and I'm terrified to actually get checked for Asperger's, because if I don't have it then it must mean that I'm just a weirdo antisocial jerk and that would be horrible). In my experience, it seems like being on the spectrum and having digestive issues often go hand in hand together - I'm not sure why that is though.

I have a younger cousin who is diagnosed Autistic, and although he doesn't have IBD, he does have a lot of food intolerances/allergies and has to be on a very strict diet. When he was younger, before all the food issues were figured out and before he was on any kind of a diet, his autism seemed much more severe and he didn't make eye contact and wasn't very verbal. Since being put on a strict diet (no dairy, no wheat, I'm sure there's more to it but that's the gist of what I can remember of it), he's become much more higher-functioning. He went from a special school to regular school, makes eye contact and can talk with people (his conversational skills are still somewhat limited, but he will actually initiate converation with other people rather than just answer when spoken to).

That's just my personal experience, but in addition to treating the IBD with medication, it may also be worth trying one of the many IBD-friendly diets that are out there (paleo, IBD-aid, SCD just to name a few). Or try going gluten-free and/or dairy-free for a time to see if that makes any difference for your child. It's tough to stick to a diet like that, but it could be beneficial. Most of us aren't able to get into remission with just diet alone, but when you have Autism added into the mix, I think diet could potentially be a good complementary treatment along with whatever IBD medication you and your doctor decide on. Good luck! I hope that was slightly helpful.

 

[my little penguin]

Can he drink from a cup ??
If so oralflo makes a cup you place the pill I so the just drink water from the spout and it works.
Other pills can be opened in applesauce or yogurt so he can take them.

Colonscopy /endoscopy is typically done outpatient even for infants .
And it's a one time under anesthesia deal.
DS has had inpatient one but only when they wanted it quickly otherwise it can a long wait weeks to months

 

[my little penguin]

http://oralflo.com

 

[Sascot]

I don't have any experience just wanted to send my best. Hope the meds get him into remission soon.

 

[CrohnsKidMom]

Sending you my support. You have a lot to deal with, but now that you have the diagnosis at least you can get him on a treatment plan and back to feeling well. My son was 8 at diagnosis and although he does not have any other conditions he wasn't able to swallow pills at the time. We crushed them and put them in yogurt, applesauce, etc. If it's prednisone or oral methotrexate you are referring to, the pills are small. You might also want to check with the pharmacy to see if there is a liquid option. I'm thinking it's unlikely, but worth asking. Thinking of you as you go through all this.

 

[crohnsinct]

Hi there and welcome! Quite a road you are travelling.

I have read on here about some connection between Crohns and Autism...paging David as I think he once provided some info to a mom here.

My daughter is going to be doing a variation of the SCD diet soon and I have been reading up on it and in addition to helping with IBD symptoms the autism community reports a lot of success with it. As a matter of fact I think it started as a diet for autistic kids and those with IBD found it helped that as well and so it took hold with the IBD community. Worth investigating.

 

[Visual Acuity]

pdx, thank you for telling me about your daughter, I’m so sorry you have to go through this, it helped me to know that you had a similar situation, and that I can be hopeful that everything will come out to be better. It is all overwhelming isn’t it, I’m really glad that you’re all doing much better now. I know it’s constantly an uphill battle, but it’s good to know that we’ll get there. Quickly would be great.
:ybiggrin:

 

[Visual Acuity]

Hi, Maya142, my DS is 19 but being at only about 2 or 3yr old level on some things he is more childlike, especially with everything he has to go through. I thought perhaps I could be in this forum because of his disability. Should I move to another one you think? I don’t know for sure. Also that is the reason why we’re going to the transition center at UW because of his disability mostly. We find out next week what meds he’ll be on, always with the waiting!

 

[Visual Acuity]

Thank you to all of you for your kindness, and support, it really means a lot, and for your kind thoughts. It helps so much.

my little penguin, (I like your name :ysmile thank you for the cup information! I ordered one, sounds like it might work for us. I'm hoping. Have you tried it?

crohnsinct, I didn’t know about the connection between Autism and Crohn’s! I’ll read up on it. Thank you.

Really thank all of you, I feel like I'm not alone going through all of this. I can't tell you how much it means.

 

[my little penguin]

All are welcome here
Stay hang out

 

[pdx]

Yes, everyone is welcome here, no matter the age of their children. Many of the parents here have children in their late teens and 20's.

 

[Visual Acuity]

Sorry if it seems I’m flooding the thread! It’s just that you were all so kind to respond to me and give me such support. I wish I could reply to everyone! Suspect you would throw me out though. :ybiggrin: Last one!

Cat-a-Tonic, don’t you dare think you are some weirdo! We all have quirks that make us individuals, makes us who we are. I have a family friend that has Asperger’s, she’s so wonderful, she’s really sweet, and very shy, and so loving. Please don’t feel bad about yourself, and if you do or don’t get tested, you are still you, and a wonderful person at that. I don’t know about your situation, but she is qualified to get Medicaid, so you might look into that if it is something you might need.

I didn’t think of there being a connection between IBD and some conditions, I’m so new to this, thanks I’ll look into it. I’m going to look into the diet suggestions you mentioned. Right now we’re on the no whole grains, nuts, etc … all of you have given me a lot of really great suggestions.

Thank you again, for all the advise and sharing with me your own personal life. All of you are so kind!

 

[Maya142]

Lots of parents with big kids here (mine are 18 and 22!) - hang around! Update us when you see his doc :ghug:

 

[my little penguin]

DS was 7 at dx
He learned to swallow Pentasa
By pure bribery
Gave him tic tacs
Then rice
Then mini m&m
Then jelly beans
Took two weeks

Now he can swallow 5-6 pills at once

 

[Catherine]

My daughter with CD is 20 and living overseas. I still hang around here.