I'm at a loss...

Hi folks, I'm new here, just registered to see if there is anybody who can help me with my little guy. My boy is currently undiagnosed, but the gi strongly suspects crohn's disease. He is on Pentasa for colitis currently, with a second colonoscopy to be done in a month. He tested positive for baker's yeast antibodies, has anemia, failure to thrive and has had alternating diarrhea and constipation since birth. At about two he stopped gaining weight, around the same time I stopped nursing him.

Bring us to the current situation: he's been sick with some virus for almost two weeks now. First doctor thought it was a sinus infection, so they prescribed amoxicillan. After a weekend of it getting worse, they diagnosed pneumonia and put him on zithromax. He finished that course and was swabbed positive for RSV. Meanwhile, his cough worsened and he ended up about three days ago complaining of ear pain on top of it. He was diagnosed with ear infection same day we stopped the zithromax and they put him on ANOTHER antibiotic, cefzil.

Four days ago, he started having extreme diarrhea. Watery, explosive diarrhea. He just stands to go to the bathroom and gets there and before he gets pants down, it's all over him. The two times he has made it to potty in time, there was a ton of mucus (yellowy) and also blood in the diarrhea.

The doctors have ordered c.diff test and a culture, and also just asked us to do a fecal occult test. I am meanwhile waiting on those results, having him wear diapers for the incontinence and keeping him from school. I also have added probiotics - chewables at noontime - and lots of fluids to his daily routine.

I am scared to death that he is sicker than the doctors think. I worry he has cystic fibrosis or perhaps ehlers danlos, and also worry about the crohn's disease. Since the pathologist didn't see crohn's on his first colonoscopy, there is still that question, although the gi told me "95%" after what he saw in his colon that that was the likely problem.

Also, he is getting about every illness going around - his immune system is horrible. He's had croup and pneumonia twice since starting school.

Does anybody have any advice for me? I want to help him feel better but feel so hopeless. Plus I wonder about every little thing he eats, whether it is making him feel worse, whether we should be doing dietary things to help him since he tested positive for the yeast antibody.

Phew. Sorry so long, but I just have been dealing with this all for so long and I feel so alone. Thank you for reading and for any help.
~Jess

Jess~
I'm so sorry your little guy is going through all this. I know others will come along with better advice than I could give, but I wanted to send you hugs and let you know you're not alone.:hug:

If he's still having blood and mucous with the Pentasa, or if the symptoms have gotten worse on the Pentasa, it's entirely possible that that particular medication is making him sicker. How long has he been on it and has he improved or worsened before this latest diarrhea outbreak?

As for the watery diarrhea, there is a stomach bug sweeping the country right now and it's massively contagious. You need to be VERY careful about handwashing (not sanitizer, it won't kill this stuff) and keeping surfaces, toys, doorknobs, etc, clean if he has that. Keep an eye on him and look for signs of dehydration like chapped lips, bad complexion, fatigue, fever... take him to the emergency room if he's seeming particularly loused up. My daughter and I both spent time in the hospital recently with this virus.

I'm not mentioning all that to scare you, just be careful of it, especially if he's prone to illness like you say. My 14 year old spent a week in the hospital and I was in the ER for hours getting IV saline because I was dry as a mummy.

If he's positive for baker's yeast with ASCA doesn't mean that a diet without baker's yeast is going to help, it's not that easy. There's a reaction against saccharomyces in many people and often it's caused by a cross-reaction, for example mycobacteria can cross-react with saccharomyces. You can leave out baker's yeast if you like though, although unless he has celiac, don't expect miracles, the antibody is sometimes found, there's no fungi they can easily find at the place of inflammation for crohn, it tends to signify a more severe disease though usually involving surgery in those people, but why it's there they don't know.

I'm so sorry you and your little boy have gone through so much. My son was much older when diagnosed with Crohns (16) and I can only imagine how much tougher with a little one that can't communicate as well! I'm glad you found this forum, you'll find you are NOT alone, and you'll find tons of great advice and lots of knowledgeable and wonderful members/parents who can offer you support and help!

Did your son's GI mention any inflammation? Sometimes inflammation doesn't show up visually on a scope but can be identified through biopsies. Also, keep in mind that neither endoscopies nor colonoscopies can see the small intestine - this is usually seen through MREs, CTs, etc.

I may be wrong but I think that Pentasa is usually used as a maintenance medication and other treatments are used to take down the inflammation. Steroids are commonly used and exclusive enteral nutrition. Enteral nutrition has a comparable success rate at inducing remission in Crohns as do steroids, however, has none of the side effects. It is a liquid only diet with formula/shake formulated to provide all necessary nutrition and bowel rest. It is usually used for approx. 6 weeks to induce remission and then maintenance medications take over. For some reason, while it is very often the first treatment option for children around the world, it is less commonly used in the U.S.??? You'll find lots of info on EN in the treatment section of the forum as well as under Diets for Kids in this parents section.

I'm sure there will be lots of other knowledgeable parents coming along who can offer you even more advice.

I hope you get some answers from your son's GI soon and can get him feeling better asap!! :ghug:

Steroids would be a good bet, both to get the flare under control and to possibly help out if he does indeed have the norovirus that's going around. EN is less likely to help with an acute flare especially if he's indeed got UC and not Crohn's. I just had some LONG chats with my daughter's GI about this very recently.

So sorry that your little boy is having so much trouble. Although I hate steroids, I agree with Muppet that a round of steroids would help both the possible crohn's and the pneumonia/rsv/rotovirus.

Another thing, the antibiotics are probably worsening the diarrhea. And if he does in fact have crohn's, he has been on several antibiotics which boost the immune system. I know that my son's dr always wants the shortest course of antibiotics possible in order to avoid causing a crohn's flare.

I would ask the dr about some liquid immodium and of course, keep him hydrated whether its pedialyte popsicles or whatever he will take (just stay away from a lot of sugar). Good call on the probiotics. Maybe some yogurt or kefir would replace some probiotics also. Try the BRAT diet (bananas, rice, applesauce, toast) to help the diarrhea.

I hope you get some answers and he gets some relief soon. It is a horrible thing to watch your child hurt. You just want to make it stop and when you can't , it drives you crazy!

Hugs to you!

Jess - My heart goes out to you.

Questions and then suggestions that may be changed based on your answers:

1. is he being treated by a pediatric GI?
2. Where do you live (general area)?
3. How old?
4. Longer history of infections or just current round? If longer, how long and what kinds of infections (i.e. colds, viral or bacterial like strep/staph/pneumonia)?
5. Where is he on the growth chart? Either %'s or his height and weight and years/months age

I sure hope you have the resources to get a ASAP 2nd opinion consult at a major medical center with a Pediatric IBD Clinic. You don't say where you are located so I can't give any suggestions about where to go for a 2nd opinion. If all the clinical factors point to Crohn's but there is a conflicting path report then that is exactly the circumstances under which a 2nd opinion is vital. At the minimum there should be a 2nd opinion pathology review of the biopsies.

And in the meantime, with those symptoms and history there is no reason, in my lay opinion, why they should not be treating him as if he did have c. diff. C. diff can become life threatening very fast in anyone, let alone a child.

You don't say if he has a fever or how often the D is happening but if it is very frequent (more than 10 times a day), he has abdominal distention (swelling), is showing signs of dehydration or is unable to keep down fluids then I would take him to ER. And I would be very careful about keeping everything clean - bleach or plain soap and water are the only things that get rid of c. diff and it will live on dry hard surfaces for months.

And as Muppet shared, there is a nasty GI bug going around but here at least it is causing vomiting not diarrhea and no upper respiratory symptoms. Either way, washing hands and surfaces and bedding is important.

You don't say how long he's been on Pentasa. Pentasa has been known to cause very bad reactions in those who are sensitive to aspirin (salicylates). You might want to check out the side effects listed for Pentasa and talk with the doctor about whether this could be part of the problem. http://www.rxlist.com/pentasa-drug/side-effects-interactions.htm

There are a number of possible explanations for the systemic and GI symptoms you are describing not just Crohn's. And there could be more than one thing going on. That's why I would really encourage you to get him to a Pediatric IBD specialist who may be able to sort this out.

IF it is your pediatrician who dosed him with multiple antibiotics for sinus infection, pneumonia, RSV and now ear infection in a 2 week period then I would be talking to the pediatrician about how this was all handled.

Unless your child is
immune suppressed
has some serious complication like invasion of the infection into the bones
persistent sinusitis lasting longer than 10 days
fever w/pus lasting 3+ days
sepsis

I believe the current standard of care for sinus infections is to use comfort measures and home treatment like hot showers, nasal sprays etc. first since antibiotics have not been shown to be more effective and carry risks like c. diff. http://www.idsociety.org/uploadedFiles/IDSA/Guidelines-Patient_Care/PDF_Library/IDSA%20Clinical%20Practice%20Guideline%20for%20Acute%20Bacterial%20Rhinosinusitis%20in%20Children%20and%20Adults.pdf#search=%22sinusitis%22

The same is pretty much true of simple ear infections.

Now I am NOT a doctor and your child's situation sounds complicated. I just know that as a parent, I would be wondering about the way the diagnosis and treatment at each stage of this was handled. For example RSV itself cannot be treated with antibiotics - only the complications and only if they are serious enough to warrant it. Was the ear infection serious enough? I don't know of course. That's something you will have to talk over with the doctor.

In our house, some got vomiting, some got diarrhea. It seems to be an equal opportunity virus.

I agree that aggressively treating for c diff might be a good idea.

We were really lucky. Only Badger got the virus but he was out of school the whole week. You know your 17 year old is sick when he spends all day in bed asleep.

Thank you everyone for the responses. I will try to fill in the blanks where people had questions.

Evan has been on Pentasa since his upper endoscopy/colonoscopy right after Thanksgiving. He hasn't had much help from it. I believe a steroid given to him for his croup right before then was the reason he stopped his incontinent episodes (which he had for a year+). After the steroid he had probably 1 good month, then the colonoscopy which did show inflammation visually, however the pathologist indicated it might have been from "cleansing effect" due to the miralax/dulcolax treatment prior to the procedure. The pathologist did not see anything in the biopsy, I am told. After the colonoscopy, he started to flare, I believe, and had a lot of blood in bowel movements, but it settled down somewhat around Christmas. This past week his normal diarrhea (usually more mucousy, but it had some substance to it) turned a lot more watery. He has 3-4 diarrhea episodes a day right now.

I took him to the ER two nights ago because he was lethargic/not answering me when I asked him questions, and he was running a fever. He also hadn't urinated much all day and I thought he may need IV for dehydration. By the time the ER doc saw him, he had had some gatorade and had perked up more, so we were just told to follow with his pediatrician. I will take him to see the pediatrician tomorrow for that follow up, and plan to ask about a steroid for him. If his diarrhea isn't any better, I also will contact his GI and request the same. I do think he needs help with the inflammation and some relief. I want to learn more about the enteral nutrition, and will read up on that suggestion.

I have wondered if the pentasa is perhaps just not the right med for him, Muppet, and will ask his GI about that as well. I sense that it isn't helping much at all, if any. And I have been cleaning up after him like a mad woman hoping the rest of the family doesn't catch it too, if it is this stomach flu bug. So far, his brother's only caught a cold.

Thank you Kiny for that info about ASCA testing. The GI doctor hasn't recommended any dietary changes yet for Evan. Going to the extreme of a baker's yeast free diet seems really overwhelming to me right now - especially since there are so few foods that Evan will even eat now.

Tesscorm, the GI also had Evan do a small bowel CT follow through. That test didn't show much unusual. There was inflammation seen in his large intestines, which is why the GI started him on Pentasa... tentatively, I guess, he has a diagnosis of colitis only. I will ask about the enteral nutrition option.

jmckinley, I am pushing liquids with him at the moment. He really doesn't have much of an appetite, but any time he will eat I let him - even if it's ice cream for breakfast lol. I don't know whether the GI will ok the immodium, but it's worth asking about. And the probiotics are a must - I suffered with c.diff while pregnant with Evan's brother and was hospitalized twice. No way do I want Evan dealing with that on top of everything else.

Patricia56 said:

Jess - My heart goes out to you.

Questions and then suggestions that may be changed based on your answers:

1. is he being treated by a pediatric GI?
2. Where do you live (general area)?
3. How old?
4. Longer history of infections or just current round? If longer, how long and what kinds of infections (i.e. colds, viral or bacterial like strep/staph/pneumonia)?
5. Where is he on the growth chart? Either %'s or his height and weight and years/months age

Click to expand...

Patricia, thank you for such a detailed response. I wanted to be thorough in mine to you.

To answer your questions, he is being treated by a pediatric GI doctor. This is after too many years of going to the pediatrician who just wrote out a new prescription for miralax :/

Evan will turn six Wednesday. Since he isn't feeling well, we aren't doing much - but presents and cake are a must!

We live in Maine, so Boston Children's (I think) would be the closest major medical center. We currently go to Portland for his appointments, which is in itself a 2 hour drive, but I'd drive forever just to get him feeling better!

Other than the chronic GI struggles, Evan's major medical issues have been allergies, eczema/rashes and some breathing difficulties with cold-like illnesses. He's taken a turn for the worst I believe because he is exposed to more bugs, now that he's in kindergarten.

And lastly, he is probably around 1% on the growth chart, although I haven't checked recently. His endocrinologist put him about a year behind in development based on his hand xray. Currently he is hovering at 35 lbs, and 40" tall. I noticed early on that he had stopped growing much, because his brother is quite the opposite - he was 30 lbs by a year old! I've always thought he wasn't digesting his food/nutrition adequately, but an early on consult with a local gi lead no where (he only advised I take him off gluten free food, which had previously been recommended by the endocrinologist's nutritionist :shifty-t. I think he listened to his belly, and that was about it...

My parents are willing to help with funding a 2nd opinion, I think. It's something I had in the back of my mind and really think it may need to be pushed.

I also am not happy with how Evan's treatment has gone this past week and it's making me think we need a new pediatrician. We saw four different doctors on all our visits, because his pediatrician wasn't available. And his (and his brother's) health is so complicated that we really need consistency.

Hi and welcome,

I'm so sorry that your little man has been through so much. Your doing a great job of trying to get answers for him. My 4 year old (as of today, feeling very old right now) Grace has also been ill since 3-6 months old. Our journey has taken 3 1/2 YEARS to get Grace a dx and even though it feels a bit overwhelming right now, I'm glad we did. I tell you that to tell you sometimes the journey is a lot longer than we wish it to be but it still has to be traveled.

OK, to my questions.
Can I ask how old your son is?
On the biopsies results did it talk about damage at the microscopic level?

Hugs

Farmwife said:

Hi and welcome,

I'm so sorry that your little man has been through so much. Your doing a great job of trying to get answers for him. My 4 year old (as of today, feeling very old right now) Grace has also been ill since 3-6 months old. Our journey has taken 3 1/2 YEARS to get Grace a dx and even though it feels a bit overwhelming right now, I'm glad we did. I tell you that to tell you sometimes the journey is a lot longer than we wish it to be but it still has to be traveled.

OK, to my questions.
Can I ask how old your son is?
On the biopsies results did it talk about damage at the microscopic level?

Hugs

Click to expand...

Thank you Farmwife. Evan will be 6 in two days, and like you it's been almost 4 years of questions for us. I do hope he gets some help soon. He amazingly hasn't been complaining that much this week about his stomach. I wonder often if his "normal" stomach feelings would bring me to my knees if I experienced them.

I don't know about the biopsies, other than that the pathologist didn't see any signs of Crohn's. However, Evan wasn't cleaned out all the way and the colonoscopy could only go up so high, which is why they've scheduled a second one in February.

Ps. what a beautiful girl you have there!

Yes, I often think if we really could feel their pain, it would be far worse than we thought. But these young kids are amazing on how they can go on and hide the pain because it's normal for them to feel that way. A blessing and a curse at the same time.

We're BIG around here on telling people to always get all labs and biopsy results. You would be amazed on what you can see and learn from the results.

I'm so sorry. I hope you get answers soon. My 11 year old daughter was diagnosed 3 years ago at 8, with Ulcerative Colitis. But she had been having her symptoms from about 18 mos old.

Just wanted to wish you luck getting some help to make him feel better. Might be worth getting that second opinion - it does make a big difference having a doctor that you can really trust and that listens to you when you have concerns.

Well, yet another run to the bathroom a minute ago and his diaper was full of blood. I'm so scared. I just put a call into the on-call doctor and they are reviewing his file and will call to see if the stool tests are done and available yet.

Go to the Er if it get's to much worry for you.

Hugs to you both.

His c.diff test was negative. His stool culture was "tentatively" negative. The on-call gi told me she will see if they can push his colonoscopy date up to possibly this week. The doctor told me that if he's not in pain, then it's unlikely anything life-threatening? ?? My visual estimation immediately after removing his diaper was that it was approx. 1/4 cup of blood? It was definitely more than after his colonoscopy (the 2 days after he bleed quite a bit).

^^^ yeah that.
Couple of things - not a doc just a mom so ask yours

If he steriods within two months if the scope it could have healed what was going on.
So nothing would show in the biopsy results .
This happened to us.

CF there is an easy sweat test . Simple non invasive your Gi or ped can test.

Boston children's Gi dept is #1 in the country so you should be in good hands there .
It takes a while to get an appt so start today and maybe he can get in a few months .

Even if EN does not help his Ibd get to remission it can help with his nutrition and growth .
I would ask about an elemental formula or semielemental
Neocate .
E028 splash
Elecare
Peptamen jr
Vital jr

There are other immuno disorders - does your child see an immunologist??
May want to make it a two for one trip to Boston .
They have diagnosic pediatrician who specialize in figuring out which specialist a complex child might need to see rather than randomly trying docs.

Hugs

Second if your are still worried head to the ER.
That is what it is there for .

I'm not sure what to say about the blood, my son never had any bleeding so I don't know what would be 'too much'??? But, I certainly don't agree with the doctors comment abt no pain means its not life threatening! Not saying this is life threatening at all but I think the doctor's comment is way too simplistic! I'm with Farmwife, when/if your worries and instincts are telling you to go, then go to ER.

Hi Jess, I couldn't possibly add to the great advice you've been given. I just want to wish you and Evan well! I hope you get firm answers and a treatment regimen that puts him on the right path!

How long has it been since he had a CBC? Are his doctors aware of the VOLUME of blood he is losing?

In my opinion, Not a doctor, that volume of blood loss in a 35# child may pose a danger to his health and you should go to ER or to the pediatrician for an urgent same day visit, taking the evidence of blood loss with you.

He should have a STAT CBC with differential (preferably with reticulocyte count) done (along with a bunch of other labs but that's what's essential to look at blood loss). This can probably only be done at the ER so you may want to check with the pediatrician's office and then just go to ER.

Depending on his hematocrit, losing in excess of 4 oz of blood could be beyond the safe or allowable blood loss limit for a child that age. 1/4 cup of blood in a single bleeding incident would be 2 oz. If he's had multiple bleeding incidents in a short period of time he may have reached or exceeded the 4 oz.

Given his small stature I would expect that, if your estimate is accurate, he may need intervention for signficant anemia.

You may want to check out the signs and symptoms of anemia here

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/hematology/anemia.html

and see if he is showing any signs to help you decide if this is really an issue or not.

What Patricia said. If there's another diaper like that, save it and bring it to the ER. I'd imagine the last one is probably not in the shape to be evidence.

Even without another diaper like that, he should be seen and blood should be drawn.

I am so sorry to read all that your son is going through, especially because your son's case has many similarities with my son's case. He will also turn 6 this year and has been sick for almost 4 years now. You may find the following thread interesting:

http://www.crohnsforum.com/showthread.php?t=43355

It seems that the Crohn's like disease of my son is actually caused by some sort of primary immune deficiency. In October we started EEN and in December IVIG and he feels so much better now, after more than a year of rectal bleeding, bad skin problems, constant sicknesses (including pneumonia), countless antibiotics, bad inflammation in his whole GI tract, diversion colitis due to his ileostomy, ...

I strongly recommend you to ask for a second opinion and demand tests on his immunity as well.

You all are giving such great advice. I'm taking one step at a time, and we started today with his follow up with pediatrician's office. I also got him set up with a ped who will be available for more of his appointments, to help with consistency. The dr listened and had them draw blood. I find out tomorrow the results. The on-call gi last night urged Evan's gi to bump the colonoscopy up and it is now on Friday - a whole month ahead of when it was planned. I am relieved, and hope we're on the way to getting him some relief. We have to do a 2-day cleanse (although I doubt there is much left in him at this point) and that starts tomorrow. He will get to have his birthday cake though. And pizza. We just have to start the miralax/dulcolax tomorrow, then Thursday just liquid diet. I also took the advice here and have initiated getting a second opinion at Boston. Their consultant is supposed to call me back tomorrow with what details I need to forward there.

Patricia, I think you're right about the amount of blood loss being dangerous for him. I have taken photos of two of the really bad diapers/pottys and have shown them to the drs as well. Evan's been anemic for such a long time, but I hope the iron supplements he is on has helped him. We'll find out the CBC results tomorrow (not sure what type as I tend to get really overwhelmed in the dr's office, but I'll make sure to ask tomorrow). I'll rush him to the ER if we get another bad episode tonight.. so far today, he hasn't had much diarrhea at all. Once this morning, but he made it to the big potty in time and it got flushed before I could examine it. Nobody has mentioned intervention for his anemia yet. Would that possibly entail a blood transfusion? He freaked out today just getting his finger pricked, I can't imagine how he would take getting an IV now.

Muppet, I will save the next diaper but hope we don't get another like that. I wasn't sure what to do with last night's, I even thought about rushing him to the ER again but I feel like the doctors here don't do much but defer to the GI now. Frustrated with the whole process at this point, I guess.

Also, the GI is having us to a Calprotectin stool sample test. This is the info on it: http://www.mayomedicallaboratories.com/test-catalog/print/91597
Has anybody had this done? How accurate was it in helping a diagnosis?

Malgrave, interesting how similar our sons experience has been. I think you're right he needs to have some immune system testing as well. I will print that article and read it.

Get buzzy bee for Iv's and blood draws - ask at the hospital some have them
We have our own
http://www.buzzy4shots.com/

Our infusion center loved DS's so much they ordered them for the unit.


DS has had fecal caloprotectin done twice .

Good luck on Friday
Bch will want all if his medical records
Growth charts
Biopsy slides , X-ray s imaging studies ( on cd)

Plus other specialists notes sometimes
They usually don't schedule an appt until after they receive all the records and the. Review all the records.
Typically three months from first call to appt.
Good luck

Glad they moved up his scopes. I hope the clean out goes well. Grace had her fecal cal. done but nothing showed on it but Grace is special in so many ways. =-)

Been following and not commenting because you are getting such great advice. Just wanted to send a shout out of support.

If they did a finger poke for iron they would have gotten the results right then and there and if his count was dangerously low they would have told you. That was actually the one thing that got my daughter sent to the hospital. It isn't 100% accurate but close enough. So myabe the fact that they let you leave is a good sign? Once my daughter's levels dropped below 7they were talking tranfusions.

As for stool samples and flushing etc it is easy if you get a hat that sits in the toilet. They use the toilet just like usual but everything goes in the hat and you have a good sample with no water interference and even if they flush the sample doesn't disappear because it was caught...unless of course they start dumping the hat contents which some little ones here have done The hat also comes in super handy for urine samples as well..Multipurpose!

Freeze stools, diapers, whatever samples you need in clean plastic bags marked with date/time of collection.

The hat is good. Can also (in a pinch) use a big pot that fits in the toilet bowl under the seat (that can be run through the dishwasher of course) with a disposable plastic plate or bowl in it to catch the sample. I think I used a tin pie pan once. After that I just always kept a clean hat tucked away under the sink (still do and haven't needed it for 4+ years!!!!) and a clean sealed sterile collection cup with it.

Glad they have moved his scope up. Very glad.

And yes if he has another bad bleeding bout you should go to ER in my opinion. Take the diaper or whatever with you so they can see and measure how much it is. Just because his HCT (hematocrit) wasn't so bad he needed to be rushed to the hospital when he was at the doctors doesn't mean it isn't pretty bad.

That's great they moved up the scopes, good luck with the clear out!

I agree 100 % with Patricia....a second opinion from a major medical center /specialist is a must. The blood loss is a big issue and should be addressed as a priority. I'm glad to hear He's taking iron supplements and also that you had the scope moved up. I've found sometimes you have to be very demanding and insist on more tests, more frequent tests, speeding up tests just to be safe. The squeaky wheel gets the oil right? Remember that this guy is your pride and joy and be as demanding as possible in as pleasant a way as possible......best of luck......

I got a call today from the ped's office. His hemocrit was within range (11.9, where the range's low was 11.5 and I think high was 13). So, at least that's good at this time. We started the cleanse and he is already in the potty every 15-20 minutes. I don't think they'll have a problem with him being not cleaned out enough this time. Prior to starting the cleanse, it did seem he was getting back to his "norm" or was on the way there... I hadn't seen much blood at all, only mucus and the stools were much less watery.

I also heard back from Boston Children's, who said that we need a prior authorization from his pediatrician for the second opinion. I'm going to wait until after the colonoscopy and we have a "well child visit" with the pediatrician coming up very soon, and depending on what the colonoscopy sees, we will be pursuing that 2nd opinion. I certainly hope this scope gives us some definitive answers to some of the lingering questions about his health.

I thank you all so much for your advice and replies here. It means a lot to be able to read your messages, as you've all been here one time or another before.

As an aside, have any of you dealt with school absenteeism or requests for tutors? Or even had kids who were held back a year due to absenteeism? As of today, I think Evan's missed about a month of his kindergarten year, and he's already got some learning delays on top of it.

Also, Evan turned 6 today This is him in his big present. (His big brother is behind him)

504 plan
You need a 504 plan.
See this link
http://www.ccfa.org/resources/template-section-504-plan.html

He is already IEP'd for his speech disability, so I wonder if it would fall under that or if he needs the 504 plan as well.

504 is different it is for health issues since he is considered disabled by the federal Ada .
You can place the health plan under the IEP as an OHI ( other health impairment)
But his speech IEP will probably go away . His 504 will travel with him through college.

Ha, thank you my little penquin. I hadn't known he needed both. That was an excellent link too. I've done the 504 plan for Evan's brother, who has epilepsy, so I will get that ball rolling too.

If he also has documented learning delays/processing disabilities then he probably qualifies (or should) for an IEP or special education.

This doesn't mean he would be in a special classroom, just that he needs modifications to the usual way of doing things in order for him to be able to access the public school curriculum.

The easiest way I have found of explaining the difference between 504 and IEP's is that a 504 plan levels the playing field without really changing the field while an IEP levels the field by actually changing or modifying it in some way.

So a child with a 504 for IBD might get stop-the-clock testing where he's allowed to use the bathroom without penalty. If everyone gets 60 minutes for the test, he also gets 60 minutes for the test - without having lost 10 minutes for a bathroom break.

To qualify for an IEP your child must have a disability that interferes with his educational performance and that cannot be handled via a 504 plan. The issue is access not achievement or benefit. Your child is only entitled to access to the education.

Most children with IBD will not need an IEP. However, if they need to attend school part time, have extended periods of absences on a frequent basis (more than a total of 10 days/year or 5 days in a row is a typical standard) and need home instruction during those periods, need modifications to the curriculum in order to pass classes (for example, they are only tested on key concepts or only have to demonstrate mastery of a concept), or have other issues that, when taken all together, add up to significant barriers, then they should have an IEP.

An IEP trumps a 504 and is a legally enforceable contract with the school district.

A 504 can only be enforced by suing the district in federal court. If the school is cooperative, great. If not, you don't have a leg to stand on in most cases.

A 504 applies at teh college level in the sense that the school may not discriminate on the basis of disability. There is no list of accommodations like you do at lower educatoinal levels. Each accommodations must usually be negotiated as needed with the school in question. Some schools are very pro-active towards accommodations and others are not.

Thank you for clarifying that Patricia. Evan has an IEP for special education due to a speech disability already. He also is recently diagnosed with mild Pervasive Developmental Disorder -Not Otherwise Specified (autism), which I just today dropped the report off at the school about, and will need another IEP meeting to discuss. So I probably can bring up the colitis/crohn's at that meeting to talk about whether we can get a tutor at home, or I could do it at home if I have the right papers to keep him up with his classmates, when he can't make it to school.

Don't know where you live but I can safely predict you will be getting to know your school and district special education team well over the coming years.

Hopefully it will be an amicable relationship and not an adversarial one.

If you are an old hand at this stuff, tell me to shut up and go away and I will happily stop writing tomes. Otherwise, after spending more than 20 years working/fighting with special ed on behalf of 3 different kids I feel a certain obligation to pass along what I have learned or know.

My advice is for you to give them a heads up about the Crohns before the meeting and not wait until during the meeting to drop that bomb. Make sure they know that attendance has become a major issue due to the Crohn's and the team will need to strategize around this issue. Hopefully they have an autism specialist who will attend the meeting. They should also have a nurse attend even if they would not normally do so because of the Crohn's.

In fact this information may cause a short delay in holding the meeting (or not, it depends) if the district feels it must do some additional assessment or planning in prepraration for the meeting to take the Crohn's dx into account. Should not be a lengthy delay and they probably cannot legally delay more than 15 business/school days (depends on your state law).

You will want a letter from a doctor saying your son has Crohn's and briefly outlining his particular symptoms and telling the school to provide modifications and accommodations as needed and appropriate to his grade level. This works best if you write the letter (max 1 page, preferably shorter) and fax it to doctor's office with cover note saying what you need done and what to do with the final letter - fax it, mail it, hold it. Bullets and telegraphic phrases are your friend when writing like a doctor or when writing to a doctor.

If he's in an academically-intense kinder program, well frankly my advice to you is to look for a different program right away and transfer him now while he's absent/sick if that seems like a good idea to you and the IEP team. Preferably to a school where you expect he will be able to stay for several years and that already has some services available that are tailored to students with autism.

Placement is decided by the IEP team so you should not just up and move him to a different school. Placement is not actually a "place". It is the services, modifications and accommodations that are called for in his IEP to enable him to access a Free and Appropriate Public Education (better known as FAPE).

That's why you want an Autism specialist there if your district has one. If I werre you I would contact your program specialist (or whatever they are called) who is the person organizing or chairing the meeting for the district. Tell them about the Crohn's, the attendance due to illness, the PDD-NOS dx and request that the nurse and Autism specialist attend. If the district person says - too late to get them involved, you may choose to agree to a delay in the meeting in order to allow them to attend.

If you do this and the district person agrees, settle on a time frame - say 2 weeks - within which the meeting will be held. Then go home and write a letter telling them you agree to a delay in the meeting, blah blah blah as long as the meeting is held by XYZ date. Then Fax it and mail it to them.

:dance:Happy Birthday to Evan! :yoshijumpjoy::dance::ybiggrin:
LOVE the wagon!

Happy birthday Evan I haven't posted before now as you have got great advice already. Hope all goes ok with scopes on Friday and you get some definitive answers soon. Getting a diagnosis is often the hardest part

HAPPY BIRTHDAY EVAN! :bdayparty:

NICE RIDE!

Glad to hear things are perking up. Hang in there Friday is coming and soon you will have answers and a plan!

O has a 504. CCFA has a great brochure on their website for schools that explains what IBD is and the types of accomodations that will help. I gave that to O's school ahead of time. They read it ahead of time and we breezed through the meeting. I also have another child with an IEP. It's tough. Good Luck!

I really need to get on top of Sarah's situation at school. I've been meaning to get a 504 set up for her but she's been doing so well and never complaining, and I never had any accommodations, but of course she should have all the help that's available to her. My only concern is that once she's out in the world, employers aren't going to be quite so accommodating beyond what is absolutely required by law, and even then it'll be begrudgingly if not outright evaded. It's a tough call for me.

Izzy has an IEP and I confess I know EXTREMELY little about the process and I feel like I'm going to be totally adrift when she gets to kindergarten with no clue what to ask for or what she requires. Birth to Three helped us with her first one, but we won't have that support next time.

Patricia, thank you again for sharing that wealth of information, and great advice.
Thank you Devynnsmom, polly 13, crohnsinct for the well wishes! Evan had a nice birthday, despite having to start his prep yesterday. Muppet, I hope it isn't too difficult getting that 504 set up for Sarah.

Quick question: While I was out bringing Evan's brother to tae kwon do, my mom gave Evan a second dulcolax tablet. He was only required to take one today, along with the miralax. I don't know what this is going to do to his bowels, but I fear it won't be good.

Hmm..I'm not sure because Evan is so much younger than my son, who is 16. He was 15 when he had his colonoscopy and 95 lbs and he had to take 2 or 4 dulcolax can't remember. I know it was whatever MLPs DS had to take because it was the same prep maybe she'll be by and can answer that.

My son's prep went fine no issues, he didn't really even complain of cramping but then again he was already having pain from the flare.

Grace at three did two about 10 hrs apart. The GI nurse said it might cause some cramping but for Grace it didn't.

Well the cows are out of the barn, no point trying to lock the dor now.

Guess you'll find out when they come home for the night. LOL

We did 4 ducolax with miralax with DS for his last two preps .2 then few hours later two more.
No real issues . He was only 50 lbs for the first one at age 7.
He did have stomach cramping but tat was a norm for him even without a clean out just part of his Ibd .
Good luck with the clean out

I am well late to this one...sorry.

You have been given such wonderful and heartfelt advice Mum that I can add no further. :hug:

I hope the scopes went well and you have been given some answers and guidance. :hug:

And last but by no means least a belated but very Happy Birthday to your dear boy...



Dusty. :heart:

Thanks all of you again for your support and continued advice.

We had a long day yesterday. They did the colonoscopy at 3pm. Evan was very dehydrated by that point and wasn't talking much, so they kept him on IV fluids for a while after.

These are the photos that the dr gave me:



According to the gi, he is showing severe inflammation and ulcers in some patches, while other parts are "normal." He also could see the mucus that we've been dealing with. The dr has put him on 15 mg prednisone - first time on this - and we're going to talk about what to do with the Pentasa. I think because his ulcers don't seem to be treated at all, we will try another of the maintenance meds? The gi continues to believe this is crohns, due to Evan's lack of growth, but we are still waiting on the pathology report. I hope we hear back soon. If there are still no answers on the biopsies, I will request a second pathologists opinion. It was such a stressful day that as soon as I got home, my stomach was a mess of cramps/spasms...

Oh I'm so sorry. Crohn's (if that's what he has) can be "patchy". Hit's one area and leaves the spot next to it alone. There's no rhyme or reason to this disease.

Take one day at a time. As the meds start to work it will get better. HUGS

I hope you soon have solid answers Jess and your boy lasting relief. :hug:

Dusty. xxx

Thank you again to all who responded here. I can't express what a relief it is to be able to come here and get some support from people who have "been there."

I wanted to update since it'd been a couple weeks.

The scope did show Evan is in the "acute" stage of inflammation/colitis, and the biopsy confirmed it. Currently, he has a diagnosis of ulcerative colitis, but his doctor thinks that possibly may evolve into Crohn's. The GI immediately added the prednisone 15mg and we'll be tapering it down over 5-6 weeks. Evan, in the meantime, is doing extremely well on the medication. He's more energetic, an eating machine, and no more diarrhea since he started it (the night after the scope). I think he's gaining weight - was up a lb and a half last I checked. His breathing/respiratory seems better as well, and we've seen a pulmonologist in the past week who thinks he probably has asthma on top of his gi problems, so we may start an inhaled steroid after we taper off the prednisone. Evan initially hated the taste of the steroid, but we've found something that's working - I crush the pills and hide them inside a spoonful of Hershey's chocolate syrup.

I'm going to start the process of getting his prior authorization (through insurance) so we can get in at Boston's Children's if/when we need more advice.

What did they give him for maintenance meds ??
Glad he is doing better.

He is currently still on the Pentasa daily, but the gi said after the colonoscopy that it looked like it wasn't helping at all, so we'll be talking about new ones at his next appointment. In the meantime, I finally got his fecal calprotectin levels back -- they were extremely high, 1,230 - the normal range was less than 50. So the gi doc has bumped his appointment up two weeks, and we're starting to taper his steroid now.

I took him to his new pediatrician yesterday and she agreed to refer us for genetics testing, as well as to an opthamalogist (he gets very itchy eyes) and to get his hearing screening (his brother has hearing loss and evan's been id'd by the school as having speech delays). We're also going back to here in a little over a month for another weight check, and she'll likely want to do an anemia check again.

Weight has been stable since he started steroid. What has worried me is that he got a good bump early on in his appetite when starting the prednisone, but lately he's back to his usual self - hardly eating much at all.

I've also started researching more about the GAPS diet/protocol and am considering starting that along with him this summer. It seems to "fit" in Evan's case, and I hope at the least it will help stabilize his bowels and maybe help him with his sensory issues.

Glad they got some answers in the colonoscopy. I hope they manage to find a maintenance med that works well for him. At least the docs seem to be doing things to get him better soon.