Confused

[Looking for answers]

My son was diagnosed in December with Crohn’s colitis He also was diagnosed with childhood migraines disease. He was experiencing dizziness and losing weight. When I finally insisted on tests they noticed infamation.. The next day he had an endoscopy and colonoscopy and we were told he had crohns colitis. The dizzy was not getting better so ultimately through many tests and doctors appointments they discovered he also has childhood migraines disease. The crohns was treated with prednisone and Masalamine. He was on prednisone for two weeks. Continues to take Mesalamine. He has gained 3 pounds and was looking great for about a month and a half. Then we stopped iron pills because we did not know if he needed them.He Started looking pale. The dizziness also started to return. We just had blood work done and his iron is 21. Also unfortunately his Sed rate was 39. When he first was diagnosed his SED rate was 41 and now it is 39. At the last GI visit the doctor said we could wait on the methotrexate to see with the lab showed. My son also seems to have a low cortisol level. We may do further testing with that. I guess the question is can low cortisol cause the SEDrate to be high? Is methotrexate something that is usually used to help CROHNS? Should we go for another opinion? It seems like he has more than just Crohn’s colitis going on but maybe this is all just a result from the crohns colitis? I am trying things like neurofeedback, probiotics, G.I. repair, and inflamex powder- are these helpful? Does CBD OIL or supplements work for people? This chemo drug has me scared. Does Ramacaidr have leukemia side effects? My son is 12.
Thanks

 

[my little penguin]

Hugs
5-asa are typically not effective in kids
Majority need minimum of methotrexate and it remicade
My kiddo was 7 at dx
And is almost 15 now
He gets migraines as well
But those go away when his Crohns is properly treated
Low cortisol
Cortisol levels need tested at 8 am
But he has to be of all steriods for over 6-8 weeks first
Endocrinologist helps with secondary adrenal insufficiency testing
Could just be his body catching up from the steriods

Methotrexate is achemo drug when used at 500 times the Crohns dose
Methotrexate has been used for decades in juvenile arthritis in kids as young as 2 as well as in kids woth crohns
It may or may not be enough by itself
Ds has been on mtx for years with biologics

Growth is the key now
And healing the gut
The extras “priobiotucs etc..) May help a tiny bit
And some may hurt
You really need to stick to a good med

Remicade has potential risks
But those are far less than risks taken by going in a car or taking Tylenol

Risk of death in a car for kids under 14
1 in 250

Tylenol has risk of liver failure /Steven Johnson syndrome and death (even the infant versions ) same risks for amoxicillin but we give those to kids all the time

Dosing for mtx is 7.5 mg to 25 mg so extremely low

Remicade /humira have been used for decades in kids with Crohns
Ds used both and did well (started biologics at age 8)

My non ibd kid gets more colds etc... than my kiddo on biologics
Also keeps his Sed rate at 7
Intestine looking pristine
No scar tissue


Good luck

 

[Looking for answers]

Thank you for your reply and perspective. This is all so sudden and we are just trying to figure out the right path for him With the least amount of side effects. It seems pretty tough trying to find a balance. I am also very aware of the surgeries that could potentially occur in the future if treatment is not done correctly. It is nice to hear from someone who has been through it. Hopefully we can get this inflammation down so he can begin to heal. He is the first one in our family to actually have this diagnosis. So this is all new for all of us.

 

[my little penguin]

Under listed side effects are POTENTIAL side effects
Most of the parents here will tell you
The same
Few if any have side effects
Even minor side effects

 

[Pangolin]

I just don't understand why these doctors aren't using EEN as a first-line treatment. Mesalamine clearly isn't sufficient for your son. That's a pretty high sed rate and it's not down much. You can even start EEN independently by having your son drink many Pediasure shakes a day and little or no other food. Your son may also need another drug like Remicade, but you can start today with the shakes.

 

[crohnsinct]

I don't know anything about low cortisol but there are many things that can raise sed rate active IBD inflammation being one of them. My daughter's will sometimes have elevated sed rates of 40's with no explanation and it comes back down.

Has he had a fecal calprotectin test. This test measures inflammation specific to the intestines. That will give you a more accurate picture of whether or not the sed rate is raised due to IBD or something else.

The headaches could be due to active IBD. He may not be absorbing his nutrients or properly hydrated because of intestinal inflammation. Vit B12 is absorbed in the TI so if he has ileal disease he may be low on B12 and low b12 will cause headaches and dizziness but so would dehydration. You may want to request that they test his vitamin levels as well.

It is true that melamine does not have a very good track record with Crohn's. It is more successful at treating Crohn's isolated to the colon but still most kids do need to escalate to an immunomodulator or a biologic. Our GI tells us that Methotrexate has about a 50% success rate.

My daughters have been on both Methotrexate and Remicade. Honestly, I find the risk and side effects of Mtx way more scary than the biologics and there have been many presentations and papers recently written about how safe the biologics are these days. This is not to say that they are without any risks what so ever. As MLP will point out Tylenol has risks.

You could try to add EEN but I wouldn't do so without consulting your GI and a registered dietician well versed in IBD. You will have to know your son's caloric needs and need guidance on the best formula to use because not all kids tolerate all formulas. EEN is a great tool in acute situations and partial EEN to support ongoing therapy. However, the issue will still remain that you need to find out if your maintenance med is working or if you need to change your maintenance med.

 

[my little penguin]

Wanted to add
Ds has adrenal insufficiency (low cortisol ) due to steroid use (for arthritis) over the years
Low cortisol can really cause a lot of symptoms including headaches

Make sure your child team talks and discussed things as a group
Especially endocrinologist and GI

Our team will permit steriods if the primary disease (Crohns or arthritis ) requires it
But special instructions must be followed precisely for weaning when adrenal insufficiency is an issue
In Ds case Hydrocortisone has to be given during the wean

Adrenal insufficiency can be life threatening

https://aiunited.org/understand-adrenal-insufficiency/

 

[Maya142]

I would most definitely ask your GI before trying EEN. Your GI needs to be kept in the loop, even when you try things like supplements or formula. EEN is great for inducing remission but I think you need to change his maintenance med, just as others said above.

Methotrexate (MTX) is NOT considered "chemo" in the doses used for IBD. Those are teeny tiny doses compared to what is used for cancer. I know a child with leukemia (who doesn't have IBD) who was given over 1000 mg of MTX as treatment of leukemia. At most, kids with IBD are given 25 mg. Often lower doses are used. My older daughter takes 15 mg for arthritis.

She has has mild fatigue the day after the MTX injection and some nausea, but usually Zofran takes care of it.

The other option would be biologics. Biologics are the ones I'm guessing you are scared of. We all were scared of them and we all worried and agonized about giving them to our kids. I spent many sleepless nights worrying about if I was doing the right thing. Our pediatric rheumatologist at the time told me that once you try biologics, you never look back.

I can honestly say we have NEVER regretted using them, not for a moment. They gave both my girls their lives back. My girls had been in pain, not sleeping and miserable before we tried them. After the biologics kicked in (we started with Humira for both my daughters), they were back to their happy selves.

My only regret is not putting them on biologics sooner. Both my girls have some permanent joint damage because we didn't start earlier. I wish we had treated them more aggressively.

So once my younger daughter was diagnosed with IBD in addition to the arthritis, we acted quickly. She was already on MTX, but we stopped the biologic she was on (Enbrel, which treats arthritis but not IBD, which is why the IBD showed up) and put her on Remicade.

8 months after started Remicade, we repeated scopes. Her scopes looked SO much better than at diagnosis!! It was really amazing - ALL the ulcers in her colon had healed. Her colon looked so good that the GI said it looked like she didn't have Crohn's! She still had slight inflammation in her terminal ileum, but even that was much improved.

Since we treated her IBD aggressively, her IBD has stayed mild and she does not have permanent damage.

At some point, the disease becomes scarier than the medications. IBD medications may potentially cause side effects. But untreated Crohn's WILL cause complications - strictures, which can lead to obstructions, perforations and sepsis, abscesses, fistuale and growth delay.

My daughter also has adrenal insufficiency due to steroid use. Her adrenal glands essentially just shut down because she has been on and off steroids for her arthritis for years. Her endocrinologist will now allow steroids to prevent joint damage but we REALLY have to keep her off them as much as possible.

Her adrenal glands had pretty much stopped making cortisol and ACTH. Her cortisol levels were undetectable when we tested them and since she was having symptoms, we had to rush her to the ER to get hydrocortisone. Her endocrinologist was worried she was heading into an adrenal crisis and she was (and those can be fatal).

It took months of daily hydrocortisone before her adrenal glands "woke up" and started producing cortisol again.

Now she only takes cortisol when her body is under physical stress - if she's had a lot of diarrhea and is dehydrated, if she is sick with a fever, if she's in a lot of pain, if she's having anesthesia etc.

You need to see an endocrinologist for adrenal insufficiency because it can be very serious.