Introduction-7 year old son w/ Autism

[4boys]

Hi all,

I posted here previously about my son and it looks like we will be around for a while, so I thought I should formally introduce us. I am here on behalf of my seven year old son, Eli.

He has had GI issues since he was born with reflux and abnormal bm's. He has a lot testing due to his reflux and has also been found to have chronic gastritis. Due to his gastritis and small stature, below the 5th percentile, his current GI tested him for CD with the IBD Serology 7. That came back positive and the doctor ordered a colonoscopy. With that he found a polyp and found inflammation in the ileum, I believe??, he said it was the most common area for CD. He sent that for bx and they don't believe that the tissue was inflamed enough to dx CD in my son. My issue is that he had a reason to run the IBD Serology, that came back positive, along with everything else I just don't know why they are not calling it what it most likely is??? I just feel like I should be doing something for him. It also makes it very hard because he is non-verbal, Autism, and he can not tell me anything about how he feels. On top of that he has an extremely high pain tolerance, so for him to show that he is bothered by something it has to be really bad. He also LOVES to eat, so much so I have had him tested for Prader-Willi (sp?) twice. He does go through periods though where I can hardly get him to eat anything, although it is a very rare occurance. Looking back I am thinking that he may have been having some kind of flare up? He also had an upper GI w/ sbft, that came back normal, although we were there a lot longer than they expected because it took so long for the barium to reach his colon.

I would love any suggestions on diet or natural supplements that may help. I actually tried the GFCF diet with him a couple of years ago, but he was miserable because he is a gluten junkie and lost way too much weight. Anyways, that is all I can think of for now.

Rachel

 

[4boys]

I did forget to mention that I did get him scheduled for a 2nd opinion, unfortunately they could not get him in until October.

 

[Crohns08]

Hi Rachel, sorry to hear about your son. I've tried the SCD (Specific Carb diet) and it helped me along with the meds to get in remission for awhile. Sometimes a specific diet can help a lot, sometimes diet is just a trial and error kind of thing to see what bothers you and what doesn't. For now I would stay away from high fiber, grains, anything that would be tough and scratch the linings of the intestines. I'd also try to avoid anything with a high sugar content because sugar can make the bad bacteria in our intestines worse.

As far as supplements go, I would get him on a multivitamin if he isn't on one already and see if you can get him on a vitamin D supplement (D3 is best). It's been shown in studies to really help the immune system and it's especially important if he doesn't play a lot outside in the sun. I'd also consider a B complex and iron if he looks tired or has been bleeding.

Good luck to you and your son

 

[Dexky]

Hi again Rachel!! Have the doctors prescribed any meds at all? I know this is difficult from a parent's perspective but I can't imagine how much worse it has been made by the autism. I hope you get some definite answers soon so you can deal with an actual dx.
Good luck!!

 

[DustyKat]

Hi Rachel,

You certainly have a lot to deal with.

Crohn's in the ileum is the most common site for people suffering IBD. As many people have stated on this forum, IBD is often very difficult to diagnose and so many take a lengthy period of time to get that diagnosis. I experienced that myself with my daughter and it is so damned frustrating, it makes you feel useless and helpless, but you are doing something for your son. You have sought a second opinion and you are doing everything you can to get information so you can try to alleviate his symptoms. I'm assuming you did not get a diagnosis of Pader-Willi Syndrome?

I don't have you tell you that all your observations of your son are going to be non verbal cues. In the lead up to your consultation with the new GI keep a diary of the symptoms you observe. When you are living this day in day out it becomes a blur and it is so easy to forget or overlook useful information. It also makes it harder for the doctors to dismiss your claims.

Eating - are there foods that appear to worsen his symptoms (vomiting, diarrhoea, constipation). Does he improve if these foods are withdrawn.

Pain - As he is unable to verbalise his pain, look to his facial expressions and you will know as his mum about on a scale of 1-10 (10 being the worst) where he is at. Also does the pain stop him from doing anything (walking, standing, does he just want to curl up in a ball). Does he pull away when you touch him somewhere. If you have given him medication for pain what works and what doesn't.

Bowels - If you know when he is using the toilet keep a record of his bowel habits. How often, consistency, appearance etc.

Appetite - How does he look when he is eating well. How does he look when he loses his appetite, is he pale, what is his mood and so on. When he does experience these episodes it might be a good idea to take his temperature at least daily whilst ever it lasts to try and establish if he is showing signs of active inflammation. Who knows, he may have a low grade temp grumbling away that isn't obvious.

I'm sorry I can't offer any advice as to diet as we haven't down that path but there are many on here that have that will be able to steer you in the right direction but as always it is trial and error.

You have found the right place for help and support, there are heaps of knowledgeable and caring people here. I wish you all the very best in your quest to obtain answers for your son.

Take care, thinking of you.
Dusty

 

[D Bergy]

I would take a look at these videos concerning Autism and the use of Low Dose Naltrexone to treat the condition. Dr. Jaquelyn McCandless is an expert on Autism, and maybe she can help, or knows of someone else that can.

http://www.youtube.com/watch?v=PTEeO29RyjA

http://www.youtube.com/watch?v=MNfZqCf2wsk&NR=1

Low Dose Naltrexone is also the Crohn's treatment I use, so maybe both conditions can be addressed in one cheap medication.

Here is some more info on LDN

http://www.lowdosenaltrexone.org/

Dan

 

[4boys]

Wow, thank you all for your responses! No, the doctor has not prescribed any meds. He said that if he prescribed him meds. and he did not have CD then they could damage him. I will look into the Naltrexone though.

As far as being able to tell if he is hurting it can be very difficult since he does not seem to feel pain in a "normal" way. I will never forget when the geneticist was drawing blood from his foot and he was laying down blowing kisses to the nurse. I will start keeping a log though, that is a great idea! I am just praying that this next GI will see past his Autism and see a person. Even with his reflux they like to claim that he is ruminating. They even did a test where he had to stay over night in the hosp. that was supposed to show if he was ruminating vs. pure reflux, when the doctor came in and looked at the screen w/ the results he said "oh no, this does not look like rumination". Then when we went to his office and the boy making noises and acting like a boy with autism, he said "I am quite it is not reflux and he is ruminating". I wanted to hit him!!!! It has been quite frustrating!

Anyways his current GI did say that he wants me to call the office if he has a temp. or blood in his stool. He spiked a 102 temp right after his colonoscopy and he would not eat for a couple of days. Can they sometimes cause a flare up?? I was thinking maybe the bx's could have caused it.

Oh, and no he tested negative for Prader-Willi, thank goodness.

Thank you all again!

 

[DustyKat]

[As far as being able to tell if he is hurting it can be very difficult since he does not seem to feel pain in a "normal" way. I will never forget when the geneticist was drawing blood from his foot and he was laying down blowing kisses to the nurse. I will start keeping a log though, that is a great idea! I am just praying that this next GI will see past his Autism and see a person. Even with his reflux they like to claim that he is ruminating. They even did a test where he had to stay over night in the hosp. that was supposed to show if he was ruminating vs. pure reflux, when the doctor came in and looked at the screen w/ the results he said "oh no, this does not look like rumination". Then when we went to his office and the boy making noises and acting like a boy with autism, he said "I am quite it is not reflux and he is ruminating". I wanted to hit him!!!! It has been quite frustrating! /QUOTE

I can't begin to imagine what you are going through in trying to get a diagnosis. I am right there with you in hoping that his next GI doesn't just see him as a gastrointestinal tract, if you know what I mean, and then Autistic but truly does see him as a whole person.

It was difficult enough for me with a child that doesn't have Autism. I had to literally fight, yell and scream to get the seriousness of my daughter's symptoms through to them! Unfortunately this is what it takes sometimes when you are the advocate for your child. I know it isn't easy for everyone to take their doctor to task, so much depends on your personality and if you are comfortable with confrontation.

I understand what you are saying about the pain and your son's response to it, you know your son better than anyone. I am probably way off the mark here, so please just ignore me if I am talking crap! What is interesting though and maybe it also plays some small part in your son's response, is chronic pain. I know my daughter built up a very high tolerance to pain after living with it for so long, it became a part of her life, it became tolerable, even at quite high levels and for all outward appearances she functioned normally. Even when her bowel ruptured she didn't present as such, pain wise, and I often think her high tolerance masked her symptoms, the doctors just didn't believe too much was going on in there.

I hope some of that made sense, not sure if I explained myself very well!

Take care,
Dusty

 

[Astra]

Hi and welcome

This must be extremely frustrating for you, to have Crohns and Autism must be hard.
I teach children with ASD and we have a few Crohnies in my school.
One of the most significant improvements that we made in school was to introduce gluten free foods to the children with Crohns and this was also implemented at home too, the results were astounding! within days these children had normal BMs and no D at all. These kids were very underweight, but are normal weight now and also their behaviour has improved somewhat.
Some kids with ASD hate water, we use something called Kangen water, it's an alkaline water full of anti oxidants. Dehydration can make symptoms worse, so if you can get Eli to drink more, this will help.
Are you familiar with TEACCH? This stands for The Treatment and Education of Autistic and Communication related handicapped CHildren. here is more info on it.
http://www.teacch.com/

we use this programme in school for non verbal individuals with ASD, and using visuals in to communicate. does your son use PECS in school? Picture Exchange Communication,
All I can suggest is for you (or with the help from school) to make your own visuals, ie a happy face, a sad face, one in pain etc, and use them to ask Eli if he is in pain.
How about you speak to his school, and work together to put sanctions into place, what he eats in school, he eats at home, there are so many delicious gluten free foods out there, Eli won't even know the difference! Just don't tell him!
I wish you luck, and if you need any help, just shout
Lotsa luv
Joan xxx

 

[Keona]

:welcome: Hi Rachel

Aww...Poor Eli.. If he can blow kisses to the nurse (cute by the way) while having blood drawn from his foot and doesn't feel it, makes me wonder how his intestines must be like the times he does feel his abdomen pain!
I don't have much to add but wanted to say that you sound like a really great mom to be on here looking for answers and advocating for your son. I have no doubt in my mind that your experience has been doctors see your son as an "Autistic boy" opposed to "a boy with autism"... and other medical issues. I am glad he has you by his side to remind them of this!!

Take care and hope you get some answers soon

Wendy

 

[4boys]

Actually that really does make since that he may just be used to having pain since he has always had the GI issues. It's just sad to think about.

We did do the gluten free diet for about 18 months. He was miserable and lost a lot of weight. It was so sad because he was always looking around at what everyone else was eating.

 

[D Bergy]

I thought this may be of interest to you.

A just released study has shown a link between vaccinations and brain changes in monkeys that are identical to those that occur in autism.

http://www.ageofautism.com/2010/07/new-study-shows-vaccines-cause-brain-changes-found-in-autism.html

Dan

 

[gypsigirl28]

Hi rachel and welcome, I could not even imagine what you are going through.. I know when maddie is in pain it is hard to deal with. But not knowing because there tolerence level for pain has to be difficult.
I hope your right and the new doctor treats him more like and patient, that is important for any child not matter what they have..
Best wishes to you and your son.

 

[Guest]

hi Rachel - so much of what you've said is familiar to me... i have a son with Asperger's Syndrome... he is now a teenager and many of the Asperger outward signs he has 'learned' to not show so much these days, and have been replaced by expected/accepted social behaviour and reactions, as much as he is able.

however things like the massive appetite and the reaction to pain and temperatures are things which will always be with him, and which continue to alarm me sometimes. as a young child, he'd come in from playing out, blood dripping from grazed knees, and just walk past me smiling as he came in for his dinner - didn't even notice there was something cut & bleeding.... and even now, i'll see him stub his toe hard or bang his head on a doorframe (he's still got spacial awareness and clumsy issues) and i'll say "wow - you ok???", and he smiles, nods, and carries on with what he was doing. foodwise - my son would eat and eat meal after meal if it was presented to him, despite him being stick-thin and having virtually no muscle bulk at all.

so i know how hard it is to know what they're feeling - all you can do is look for outward signs of anything being different in their behaviour, and physical things like fevers, sweating, & keeping an eye on his bowel movements & looking for his tummy being swollen - things like that.

you could also contact an autism support resource and see if they have any advice regarding an autistic child with IBD.