New and scared

[1tiredmama]

Hi, I am the mother of an 18 year old son with Aspergers and low IQ, both the result of an autoimmune disorder which has been attacking his brain most of his life. After a year of intermittant nausea, with occasional vomitting, my son suddenly became too nausea to eat. Within 3 weeks, he was admitted to a hosp with dehydration and a 20lb weight loss. Blood work, a sonogram of the pancreas, and an endoscopy were all normal. Crohn's was never mentioned as a possibility. We were told, in the end, not to worry about the 20lbs in three weeks because he had been overweight anyway, and that we should not pay attention to his complaints, reward him with attention on good days, and get counseling. Huh?

Now, 12 months later, my son has lost 50lbs and can barely eat. He has no energy and no muscle mass. We recently saw a highly respected ped GI. Yesterday, the doctor called to say that the ASCA Igg was the highest he has ever seen--106, with >25 being positive. He wants to do an upper and lower scope next week. He expects to confirm Crohn's.

I'm so scared. I don't know how I'm going to manage this in an adult child who has the inflexibility of one with Aspergar's and a limited understanding of so many things. Anddd... He has always had issues with the tastes and textures of food. He tends to want salty, fatty food--I did not raise him that way!

The doctor said that usually CD can be managed with an immunosuppressant. Does that mean what my son eats won't matter--he could eat anything?

Thank you for your advice.

 

[my little penguin]

My 9 year old has crohn's dx at age 7.
He is on a biologic ( remicade ) which suppresses his immune system.
He can eat what ever he wants except nuts popcorn seeds and beans.
It will be ok .
Honest
Once you find the right meds things are really close to normal- almost.

 

[CarolinAlaska]

You poor dear. You've come to the right place. There are lots of moms here who care and will help you through this journey and answer your questions. I am sorry that you had to have a sick child to find such a wonderful community of people, but I'm glad you did find this forum.

First of all, you are in for a ride. My daughter just got diagnosed a couple weeks ago, and my gamut of questions and emotions have been all over the board. I seldom sleep through the night, my hair is turning greyer and falling out (I'm sure it's stress-induced), and my constant free moment is searching the internet for answers. Slowly I'm making my way up the learning curve, it's steep, but I feel here I've found some fellow mountain climbers who are helping me up the slope.

Regarding the question you brought up, you will be inundated with advice about diet. It can be overwhelming. Our nutritionist made it clear that diet did not cause Jaedyn's crohns. Diet can worsen symptoms when in a flare - scratchy to a sore bowel, increase gas, etc. When he is feeling better, he'll be able to eat more things without hurting or flaring his symptoms. He may find that having a special formula (or you could call it a special milk - that works for some of the kids here) will help him to feel better and get stronger, gain weight, etc, and he may decide he likes it...

One thing you can be glad about is that you are very close to a diagnosis. Once there, efforts to treat can begin. Crohn's isn't a death sentence. It is a diagnosis with many years of history of testing and refining. The docs don't have all the answers, and everyone, unfortunately, comes with their own set of symptoms and nuances that makes it a challenge to figure out what will work best. The meds are all scary, but they offer a solution that gives people their lives back. Sometimes finding the right combination of meds can be tricky too.

If your son is 18, you've already managed to raise him 18 years with a difficult (at times I'm sure) diagnosis of Aspergers. Remember how you felt when that was first diagnosed? You had a lot of learning and both of you made it this far. Now your journey together is going to take you down another difficult leg, but it won't all be bad, and you don't have to do it alone.

Well, I hope this has been encouraging. If you have any more specific questions, please bring them up. In the meantime, I'm sure you'll get lots more encouragement!:heart::heart:

 

[Devynnsmom]

First of all, welcome to the forum. I'm sorry you had to find us, but you have come to the right place. Everyone here is awesome, and helpful and full of information and support. I agree with every word Carolin wrote. Its not going to be easy, but its going to be ok. ((((hugs))))) My daughter is 11 and was diagnosed at 8, only to have her diagnosis changed (still IBD) at 10.5. I, we were a mess at first. But were getting there We have many many more good days now.

 

[Patricia56]

It's hard to know what's ahead exactly. It depends on the extent of the inflammation and if there are strictures or other problems that might require surgery.

After the scopes, assuming he finds evidence of Crohn's, I would expect the GI to do an MRE which is an MRI of the abdomen. It can be done with sedation if needed.

Depending on the severity of your son's nutritional state, options might include adding liquid formula drinks to his diet. There are a lot of them, some prescription some OTC. Most don't taste great and he may be unwilling/unable to drink them. There are some tricks you can use to help with that. Just ask when/if the time comes and you want to try getting him to drink the formula.

Instead of drinking the formula some kids use an NG tube and a pump. I'm guessing that would not be a good option for your situation but it's hard to say. Usually formula only needs to be used for a few weeks and should make him feel much better very quickly.

They can also put in a g-tube like a MicKey button so that the formula/fluids can be delivered by gravity feed or pump.

Finally on the nutrition front there is TPN or PPN - total or partial parenteral nutrition. This is nutrition delivered by IV. Total means it completely takes the place of regular food. Partial obviously means that he gets some of his calories from oral intake. TPN and PPN would both require a PICC line (typical choice, may stay in place up to 1 year) or central line (unusual) for short term.

They will probably test him for celiac's. Hopefully he will not be positive for that since it would require a lot of dietary changes.

If it's Crohn's, besides nutritional support if needed, then medication will be needed. They might start with oral meds - typically 6-MP or one of it's versions. That would only be once a day, probably 1 to 3 pills.

They might (likely) put him on prednisone. If so, know that can be very important in suppressing inflammation but it's a very powerful drug and has many potentially difficult side effects including mood and behavioral changes.

If the inflammation is very severe the doctor may want to start him on a biologic - remicade (iv infusions), humira (subq injections every 2 weeks done at home by you) or cimzia (2 subq injections once a month done at home by you).

I hope they figure out what's wrong soon so that he can start getting better.

 

[Niks]

Bless you!

I know how hard this is going to be for you both. I know more about autism than crohn's

 

[Niks]

Sorry! Sent that by accident.

I wouldn't worry too much about the diet side of it right now. Hopefully you can get the symptoms under control and go from there.

Maybe under the circumstances they can sedate him for procedures?

Thining of you both.

:ghug:

 

[Sascot]

Hi and welcome. Sorry to hear about your son's possible diagnosis. There are very mixed reports and results for food affecting Crohn's. Our GI and nutritionist at the hospital told us that the food makes no difference at all unless I noticed a particular food caused pain afterwards. I think as a general rule, things that are hard to digest will cause issues, so I cook all my son's vegetables and peel his fruit and he doesn't have anything too spicy. We also stay away from popcorn or nuts. Other than that he eats pretty much whatever he wants and has only complained now and again (he prefers his veg raw).

 

[Clash]

I just wanted to welcome you to the forum and send my support. Our GI has been open to things we wanted to try with diet but not forthcoming about success and failure with diet. He has said that many of his IBD patients try different diets, Low Residue, SCD, GF, with varying outcomes. He suggests not to follow any diet that would prohibit calorie intake as the kiddos usually need all the weight they can get.

My son is 16, and eats fairly clean but I do think the foods he tends to avoid, sweets, spicy and such are ones that probably have given him issues and that is the reason for his avoidance.

It is a steep learning curve but there are some compassionate, knowledgeable members here that provide experience and support and that has made a huge difference in my son's journey with CD.

 

[Patricia56]

I generally agree with the others that changing his diet probably won't make a big difference one way or another unless he has celiacs or a milk allergy - lactose and/or milk protein.

Sometimes cravings for salt can be a sign of a nutritional deficiency so you may want to talk to the gi about running labs on his trace minerals (especially zinc, magnesium and iron) and vitamin levels.

Avoiding things with seeds is usually recommended. If he will tolerate it, you might want to reduce his milk and bread/pasta intake for now. Substitute other sources of protein for the milk - high protein yogurt if he will eat it, eggs, etc. Instead foods with gluten like bread you could try some of the gluten-free products on the market and rice.

I would wait to change his diet until after the scopes so the doc gets to see what his gut looks like when he's on a typical diet.

Be prepared for difficulties doing the clean out. I would see if the doc can get him admitted to do that via NG tube if he can get verbally or physically threatening when you try to force him to do something unpleasant or that makes him feel physically bad/sick.

I hope you are able to talk frankly with the Ped GI about this aspect of the situation, particularly if you are a single parent or your spouse will not be there to help. As you can tell I have some experience in this arena and even the sweetest person will/can react unexpectedly in new situations when their brain is very inflexible.

If we can answer any more questions ask away.

Things may not be as bad as they seem. It may just come down to getting him to take a couple pills a day. There may be liquid formulations for the meds if that would be a better option.

 

[1tiredmama]

Thank you all so much for making me feel so welcome! I know I'm going to love it here. I have a few things on my side. My son has had a near lifetime of doctors and pills and needles--he even had a colonoscopy at the age of 5 for suspected Crohn's. The only things he really gets difficult about are anesthesia, for fear of not waking up our waking up nauseated, and food issues, due to Asperger's sensitivities and anxiety.

Treating his other autoimmune disorder with high dose antibiotics has stopped much of his inflexibility and aggressive behavior. (tummy trouble started before antibiotics and he does take probiotics.) The one positive I can see in all of this is that I have been trying to get someone to give him Imuran to stop the other disorder. I may be able to kill two birds with one stone here. I have Lupus and Imuran has given me my life back. I'm hoping it can do the same for him. He has missed most of high school--this year homebound since early October.

Nutritionally, I am trying to get him to drink Boost, but he hates it. Today I'm going to try adding chocolate syrup. I haven't been very consistent as I work 50 hours a week and I'm too tired to fight after work.

My husband is going to take off on Wed to do the cleanout and I'm taking Thurs for the procedure. He will be put to sleep. The doctor mentioned the possibility of an MRI. What would show up on that?

The more I read about about your children, the more I see how he has had sx for years, like fecal incontinence, constipation, huge stools, and odd short spells of diarrhea. But I always thought Crohn's was a diarrhea only disease. Would it make sense to you if I said I'm afraid the doctor won't have an answer, and I'm afraid that he will?

Sorry for being so wordy. I'll keep it down in the future. Thank you again for the warm welcome.

 

[Dexky]

Would it make sense to you if I said I'm afraid the doctor won't have an answer, and I'm afraid that he will?

Oh, would it ever!! Welcome Mom! I wish you the best!

 

[Dutch941]

Yes, welcome. Youre In the right place to find the answers and support you need....and I noticed someone mentioned all the moms here to help. Again, I have to say, there are a few dads as well!:biggrin:

 

[CarolinAlaska]

The doctor mentioned the possibility of an MRI. What would show up on that?

Would it make sense to you if I said I'm afraid the doctor won't have an answer, and I'm afraid that he will?

Sorry for being so wordy. I'll keep it down in the future. Thank you again for the warm welcome.

No worries about the wordiness. We're all a little on the wordy side!

MRI (or MRE, which is better) can take a look at the small intestine where the scopes can't go, can look at how fast the contrast goes through the bowels, and can check for obstructions, strictures, abscesses, etc.

Yes, I totally understand about the feeling of fear of diagnosis and fear of being left in limbo... I think the diagnosis is actually a concrete thing that can be worked on. The unknown is just overwhelming and fear-producing with a sense of helplessness and hopelessness. Hang in there. I'm hoping for some answers, and again, I am so glad someone is taking this seriously.

 

[Farmwife]

Hi and welcome. I hope you get answers soon. This forum has been a great place of support and info. :heart:

They can also put in a g-tube like a MicKey button so that the formula/fluids can be delivered by gravity feed or pump.

Patricia56 It's my understanding IF he has Crohn's that cutting into the track might inflame the area and now you MIGHT fighting Crohn's in that area. Please let me know if I'm wrong! I would be happy if I were!

 

[kimmidwife]

Just wanted to say welcome! You have given some really great advice already so nothing much to add. I hope you get an a diagnosis. It is always better to k ow what you are dealing with then not because at least then you can hopefully get the right treatments started and he can start feeling better.

 

[Patricia56]

Farmwife, I have heard both that a g-tube is problematic for CDers and the opposite. My take based on being on the boards for a few years is that when the subject has come up (rarely) the GI's prefer to avoid it but will do it under certain circumstances.

However, if long term nutritional support is required and the choice is between a g-tube and TPN/PPN then they will almost certainly choose a g-tube. It is MUCH less invasive and dangerous than using a PICC or portacath for TPN since those must be inserted all the way into the Vena Cava, the vein that goes directly into the heart. Any infection in a PICC or portacath is very dangerous and can cause sepsis very quickly. And an infection nearly always requires removal of the PICC or port.

Another rarely used option is a NJ tube which is inserted all the way into the jejunum.

My comments were based on the specific situation she seemed to be describing which suggested that her son might be unable to cooperate with any nutritional interventions that might be needed. It sounds like this may not be the case which is great. Trying to do this stuff with a full grown man who doesn't want to do it and doesn't have the intellectual capacity to understand why it must be done can get very ugly and frankly heart-breaking.

Otherwise I probably wouldn't have brought it up at all.

 

[Patricia56]

To help him drink the Boost -

serve it very, very cold
in a COVERED cup to reduce odor
with a straw to also reduce odor

use same flavor for at least 3 days for his palate to get used to the taste
little sips every so often (I know, you work all day, so maybe this is not realistic)

to change/intensify the flavor it would be best to use kitchen flavorings like vanilla, lemon, chocolate flavors you would use to flavor icing or a cake.

Hugs

 

[1tiredmama]

Thank you, Patricia56. I used a lot of Hershey's syrup yesterday and a straw. He found it easier to deal with. Also... when he started telling me that he wouldn't drink it, I told him he could not get back on his XBox until he drank one. That sped up the process considerably! :biggrin:

 

[Niks]

That's really good that you have a motivator like the x box!

 

[Farmwife]

Farmwife, I have heard both that a g-tube is problematic for CDers and the opposite. My take based on being on the boards for a few years is that when the subject has come up (rarely) the GI's prefer to avoid it but will do it under certain circumstances.

However, if long term nutritional support is required and the choice is between a g-tube and TPN/PPN then they will almost certainly choose a g-tube. It is MUCH less invasive and dangerous than using a PICC or portacath for TPN since those must be inserted all the way into the Vena Cava, the vein that goes directly into the heart. Any infection in a PICC or portacath is very dangerous and can cause sepsis very quickly. And an infection nearly always requires removal of the PICC or port.

Another rarely used option is a NJ tube which is inserted all the way into the jejunum.

QUOTE]

THANKS!:ybiggrin:

 

[QueenGothel]

As Patricia stated ^^^^ I want to add.

If they plan to put him on immunosuppressants this could become a big issue for TPN bc if the PICC gets infected it goes to the heart and could spread easily. TPN is very helpful to rest the bowels and aid in healing the body. My daugther just was on TPN with Lipids for 19 days and gained weight and her bowels were rested for healing. It can be a very helpful tool for many. I personally prefer to do nutritional shakes but sometimes the bowels need complete rest to heal and this is the only way to achieve this with minimal effects. People get TPN/Lipids via PICC all the time with no issue. But as I said if the immune system is down most doctor will chose not to.