New here, 13 year old son with Chron's

[Kryselizstef]

Hi everyone. I'm glad I found a place like this to come. My 13 year old son was diagnosed with Chron's disease last November (age 12) when we took a trip to the ER and the hospital at first thought it was his appendix. Needless to say, it's been chaos ever since.

We started the first series of tests, and bam, two months after his diagnoses we lost our insurance. My heart broke for my son. We are still without insurance, but will have insurance in one month and 3 days. In the meantime, I'm watching him go through hell. I have helped him stick to a Chron's friendly diet, and it hasn't helped at all. He always has stomach pain, vomiting and diareahh. And he seems to have migraines with his flares. This weekend he left a memorlal day sleepover at 2 am when he woke with a migraine so severe that his vision was blurry, he was vomiting and in agony.

He is such a busy, always outdoors playing sports kind of kid, and this has completely rocked his world. Last night my 6'3, 185 pound teen laid in my lap and cried himself to sleep because of his migraine. I'm just glad I found a place that others can relate. He has missed so much school due to this that it's a very real possibility he won't be in 9th grade next year, which I know will devastate him.

In the meantime, I have read up and started him on fish oil, which they say helps. I just can't wait to have the insurance to get him the treatment he needs so badly.

Thanks for reading everyone! I look forward to being part of this community.

 

[Clash]

I know school is probably out now but if you already have his crohns diagnosis, you can fill out a 504 form for him through the school. The CCFA (crohns/colitis foundation) website has some great info on the 504 plan and a sample form with covering the general issues crohns kids have at school and how the school should adapt for them. It is a federal plan covered under the Disabilities Act. My son has a 504 and it of course excuses all crohns related absences, gives extended time for make up work and at public schools I believe it also help sets up homebound teachers for a child if they are absent an extended time. It doesn't with C's but he is at a private school. Also, it allows for an anytime bathroom pass, downtime with the nurse if he is feeling sick etc etc etc. Oh and stop time testing should he have to leave a test due to pain, bathroom trip, nausea and so forth. 504 plan has been a life saver this year, each school has a 504 facilitator, but C started Remicade and the difference has been miraculous. If all continues to go well C won't have any use for the 504 plan but it is always best to keep it on file in case his health declines again. I know what you mean about having your teenage boy curl up and cry it is devastating. There are some parents on here that can give you some great information about enteral nutrition to get him through to the insurance kicks in. Also browse around the Parents of kids with IBD, there is a wealth of information there. I am so sorry your child is having to go through this and you as well, we as Moms are heartbroken when we can't fix what ails our child. I hope he is able to get some relief and feeling better. I really would check out enteral nutrition, it has worked well for alot of the children who have tried it.

 

[Farmwife]

So sorry to hear about your son.
My little farm girl is 3.5 yr. old named Grace.
She's has symptoms since 6mo. old. Still undiagnosed. Hopefully we'll be on the journey soon to start all the testing. I'm happy and scared about that.
I hope he finds relief very soon.
Keep us posted and welcome aboard.


Farmwife

 

[Tesscorm]

Hi Krys,

I am so sorry to hear about your son and your heartbreak! It is so very difficult to watch our children suffer and be unable to fix it! And, while I don't completely understand how the US medical system works, it is unforgivable that a country like the US would leave a child untreated! I'm so happy your insurance will be in place soon.

As Clash mentioned above, EN (enteral nutrition) is definitely a treatment worth looking into. It has no side effects, provides nutrition, has anti-inflammatory properties and a comparable success rate at inducing remission as do steroids. My son was diagnosed last May (at 16) and this has been his treatment since then. En is a formula that can be ingested either orally or thru an NG tube (naso-gastric tube). It is not an 'easy' treatment - it is usually done for a period of six weeks where the formula replaces all food (clear fluids may be allowed). If it is taken orally, the shakes can be taken throughout the day; if through NG tube (as my son has done), he inserts the tube each evening and ingests the formula overnight (inserting the tube takes seconds, much easier than it sounds! )

This treatment is often the first treatment offered to patients in Canada, Europe and elsewhere EXCEPT the U.S. Not sure why - may be due to GI's expectation that patients will not comply with the treatment (ie no food). But, it is not, in any way, an 'alternative' or unstudied treatment - it is a universally accepted treatment for Crohns. Having said that, my understanding is that it is most successful if the Crohns is affecting the small intestines. But, even if not as successful at attaining remission, the formula will still provide all of your son's nutritional in an easily digested manner.

I do not believe there would be any harm in trying this treatment until you are able to continue your son's testing - it may help to alleviate some of his pain. I'm happy to share whatever experience I have with EN, ie. quantity, etc.. (By the way, it has continued to be my son's 'maintenance' treatment until today - maintenance dosage of formula PLUS food! ) My son responded quickly and very well to the treatment (although he did also receive IV Flagyl for one week when diagnosed). You do not need a prescription to purchase the formulas - some of the 'oral' versions that I know of are Peptamin, Modulen, Vivonex??, Boost and Ensure. However, I am not sure that the Boost and Ensure have the same composition and anti-inflammatory properties (my son uses Tolerex but it must be ingested through NG tube).

There are many other parents here who's children have done (or are currently doing) EN as well as adult members. I'm sure some will be along to offer their advice as well. Also have a look under Enteral Nutrition in the Treatment subforum for more info.

I hope your son finds relief soon! Let us know how you and he are doing! :ghug:

 

[Sascot]

Sorry to hear about your son, it is a rollercoaster ride we wish we do not have to take with our kids. I agree with Tess, if he is so unwell it may be worth trying some of the EN drinks that you can get without a prescription. I know the docs never advocate self treating but at least you know the EN has no side effects and will do no harm as well as give your son good nutrition. I have never had to deal with insurance - one of the good things about the NHS. I know what it's like for them not to be able to do their activities. My son has not been able to do his football since Easter and he really misses it. Hope he feels better soon.

 

[crohnsinct]

Welcome to the forum. I am so sorry your boy is feeling so unwell. Two thoughts:

1 - You say you lost coverage after diagnosis. Was a treatment plan put into place? If so, does your state have a plan for children not covered by other insurance. In CT we have the Husky plan and children can be placed on it at little to no cost. If not, and if a treatment plan was put in place, perhaps you can contact the drug manufacturer for a subsidy. Many of them have programs you can apply to and since you only need a little over a month of coverage I would think they would help out.

2 - I also think it would be worth it to try EN. My daughter was put on Boost and Ensure shakes exclusively for 6 weeks. Nothing else other than water. We are still waiting to see if it has been working but I think it has. The 6 week period would get you to your insurance coverage. Boost and Ensure are readily available at any CVS, Rite Aid, Walgreens etc and also in the supermarket. I think the two companies are warring right now as they are always on sale and there are a ton of coupons out there. Before my insurance covered the EN, my church and friends were collecting coupons for these shakes for me. Our EN is now covered so if you would like my unused coupons PM me and I will send them along. Maybe just try a day first before committing to see if he likes them.

Good luck and hope he gets some relief soon.

 

[Clash]

Hey yeah that's right crohnsinct, we have something similar here to cover kids not covered by other insurance. I can't remember what ours is called but I do remember as long as you didn't drop your other insurance in order to get this plan then it is usually a go. Oh and on another note, although C is not going to cooperate with drinking the supplements I've found so far, I am now completely addicted to the dark chocolate Boost! I'm like a fiend looking for my next fix!!

 

[crohnsinct]

Ya know I keep trying to get O to try that dark chocolate in a shameless move to get some myself.

 

[my little penguin]

Many hugs:ghug:

ALso beside the state many children's hospitals have "angel funds" so they never turn away any sick kids.
I know ours does- this may help.
We did EN here for Ds and it really helped.
He drinks Peptamen Jr with Prebio orally.

DId you speak with your child's GI office sometimes the business manager/social worker can help you with the correct paperwork?

 

[LilyRose]

Hello there,

I just wanted to welcome you, and say I am sorry to hear all that your son is going through. It is obviously such a hard time for him and for you.

I hope that one of the ideas the other have suggested will get you through until you get your insurance up and running.

And I hope his crohn's can get in to remission soon and stay that way for a long time! And you can all get back to enjoying life again.

I think it is hard to be hit with something like this, and then have to deal with insurance issues on top of that is realy hard.

best wishes,
Lily Rose

 

[dannysmom]

Hi and welcome. Sorry your son is feeling so sick ... it is hard to do any learning when you are in pain. I know each public school district in US may be different, but most offer home instruction for sick kids if needed. (My son has been on it for over 3 years now.) The school should provide your son with tutors to help make up any required work that is missing ... even over the summer if needed so he can remain at grade level. (My son had this last summer going into 9th grade because he was not up to any tutors from Feb-May and fell way behind) I also think there is more room for flexibility in 8th grade than high school grades ... you son shoud not have to worry about being left behind.
Hope you get treatment soon!

 

[jmckinley]

Krys,

So sorry about your son. My son is 14 and was diagnosed with Crohn's in 2009. It is so hard to see them in pain and not know what to do about it.

We take fish oil too. Don't know how much it helps, but it doesn't hurt. His Dr. also put him on VSL3 which is a probiotic designed for IBD. I had to buy it online and I picked up Ultimate Flora (Critical Care), another probiotic, at CVS to take until it arrived. Probiotics and digestive enzymes help the system break down foods.

I hope you get some resolution for him soon.

 

[zinski777]

jmckinley

I noticed you are using the probiotics for your son. I also have been using them for awhile for my 16 year old daughter. I recently had her start taking colostrum at the same time she takes the probiotic and this is helping her a lot! She has much less pain now when she goes number 2 and her diarrhea is lessening.

I read there is something about the colostrum that helps the good bacteria stick and then colonize in the gut. I just thought I would share that info because I know how desperate we parents are to see our kids heal and have a "normal" life.

Ann

 

[jmckinley]

Ann,

I have never heard of that. Where would I find colostrum? I want to know more.

You are right! I want so much for him to heal and have a "normal" life as much as possible. Being a teen is hard enough as it is...add Crohn's to the mix and oh my!

 

[zinski777]

Are you in the US? You can find it online as well as most health food stores. You can get capsules, chewables or powder. Colosturm is the sticky yellow substance that new mothers produce in the first hours of nursing. It is a very important step in building the infants immune system and preparing the digestive tract to hold onto the good bacteria in the milk.

They extract the colostrum from cows and it is very beneficial for people too.

I've read that those of us who were not nursed or who have experienced damage to the mucous lining need to replace the colostrum in the gut so the probiotics can colonize. Also you need to allow a good 3-4 months on this type of protocol to heal the lining.

I have been using this protocol along with aloe vera juice (for inflammation) for my 16 year old daughter with a great deal of success. In just one month she has noticed a dramatic improvement in her pain levels in the colon and her diarrhea is improving.

There is a HOLISTIC GI doctor on the east coast who writes a blog about all of this. I read his blog and have been following his advice. He explains what is going on in the gut when you have these symptoms better than any GI doctor I have talked to. Google Dr Snow holistic gastroenterologist and read his blogs....VERY enlightening.

Good Luck!
Ann

 

[jmckinley]

Thanks! I did some reading last night on Colostrum. I will definitely check out Dr. Snow. My son is on several supplements recommended by his holistic Dr that are supposed to heal and coat the lining. But none of them contain colostrum, so I will read up on this.

Frustrated this morning because even though he is eating like a madman, he has LOST 2 pounds! It's just going right through!!!!

 

[zinski777]

You are welcome!!

I assume he has diarrhea? This is a big problem for us too. Research boulardii for that. This is what we are taking and it is helping. It is not completely resolved yet but getting better. We take are taking the Primal Defense brand for boulardii. Oh one more tip: be sure to take the colostrum WITH the probiotics. They work together.

 

[Dutch941]

So sorry to hear about your son.....we are also dealing with a 13 year old boy here......imguess I take for granted that we have insurance to help.....I can't imagine struggling with this while worrying about ow to pay for it as well. Talk about being under pressure. 6'3" 185! Wow. Big kid......I wish or son was that big already...one of our chief concerns is his growth.....it's hard to choose the best meds and treatment plan when you are trying to encourage puberty at the same time....throws another wrinkle in....glad you found the site....I hope you bring your son the co fort he deserves soon.....keep us all updated and know that many people here know exactly how you feel...."together we can make this easier.
Don

 

[JacksParents]

Sorry to learn of your boy's suffering. If you have problems getting access to the right specialists with your new insurance or you have ongoing problems with coverage it might be useful to look into a Child Health Plus plan, which is basically Medicare for minors (up to 21 years, I believe). Anyway, good luck and hang tight; it does get better and help is out there (and here).

 

[jmckinley]

Dutch,

You are so right! We have been having a difficult time with weight gain. Our son will be 15 this summer. He's grown so much in height, even foot size. But weight has become a reall issue. He just seems so thin. I worry so much about that. Especially because he can eat most foods, they just are not absorbing at all!

Krys, I hope things are getting better.

 

[kimmidwife]

Sorry to hear about your son. I know how rough it is to not have insurance. Have you looked into the New Jersey Kidcare? (It may have another name but all states now have a similar program). ALso the medication my daughter is on LDN you may want to look into it. It is also not that expensive about $1 per pill. If you want more info search LDN on the forum and you will find a lot of info about it.