New & Overwhelmed: 8 year old with Crohn's

[Mallory's Mum]

Well I've been a stalker of the forum for the last 2 weeks, reading as much as I can as we try to quickly adjust to the diagnosis our 8 year old (almost 9) daughter, Mallory. Here is a quick recap of our crazy journey:

In Sept & November, Mallory was having a lot of aches and pains in regards to joints, mostly in the right hip. She was also battling sort of chronic sore throats. The doctors thought is was growing pains and possibly a virus in the lymph nodes. Not sure if any of this is pertinent to her current issues.

Around Christmas, we started noticing that our daughter was not eating as much as she typically does and was taking naps (she hasn't really napped since about the age of 4-5). Slightly alarmed, we set up an appt at the pediatrician and he thought that her throat might still be sore due to drainage and allergies. She's got allergy induced asthma and was also having a cough that we could not get to go away even with inhalers. Doc put her in antibiotic and prednisone for 5 days and it seemed to pep her up for a week or so and get her eating again. But after 2 weeks, we knew that her energy was getting lower and lower and went back to the doctors for some testing. They ran a CBC which showed crazy high red blood cells, elevated white blood cells, and anemia. The day after blood tests were done, she started having a fever every night and afternoon. At this point they referred us to the Infectious Disease doctors at Cincinnati Children's.

Infectious Disease looked her over and discovered that yes, her hip was very tender to the touch but she didn't appear to have anything visually like swollen nodes anywhere else. They were thinking Systemic Juvinelle Idiopathic Arthritis. The had a hip xray and more blood work done. The bloodwork showed a really high sed rate and ESR. They sent us to visit the Rheumy doctors. Still having fevers and now a constant resting heart rate of 130+.

Rheumys did more blood work to rule out everything else since a diagnosis of SJIA is one of exclusion. They did more bloodwork, bone scan for inflammation, and an MRI on the hip. Basically they didn't find any arthritis but found inflammation in the abdomen near her hip. All of her additional bloodwork was pointing toward some type of inflammation in the gut or lungs. After a TB test was negative, they ordered a fecal calprotectin test. Honestly, at this point, I put off doing the stool test because Mallory is our iron stomach. She was more constipated than anything though she was doing a lot of complaining about her stomach aches in spurts since the summer. Most of the time, we chalked them up to 8 year old girl dramatics and sort of attention getting measures as our youngest daughter has a neuromuscular issue. Hindsight, I feel awful not putting more weight into some of her complaints. She is just the type of kid that complains about even a hangnail. So I give in and take the stool sample (good times). While we wait for the stool test to come back, the Rhuemys suggest a visit to the Gastro dept. Why not...we've been everywhere else at this point.

We get lucky and get an appt with Dr. Cohen, who is the head of the gastro dept as they've all been talking about Mallory and what is going on with her. By this appt, our little lady was on her 19th day of fevers and was down to 48-49lbs. Withering away before our eyes. I felt like no one was moving quick enough for my sake. Dr. Cohen listens to her history, looks at her bloodwork, and looks her over. Basically tells us that is it a possibility but without a positive stool test, he wouldn't put her through the scopes unless it was a matter of her getting an arthritis diagnosis. He said a >50 would be positive for most doctors but for him it needed to be 200-300. So we wait for the stool. Late friday night, I see her results pop up in MyChart and my mouth dropped to the floor. Her results were >2500. From what I understand, they stop counting at 2500.

Last Monday, we get the call that for sure she needs a scope and it is to be done on Thursday with prep on Wednesday. UGH. We really never got to get any info on Crohn's or UC at the Gastro appt because it felt more like a technicality. Monday night I found this forum and started reading...and freaking out. Wednesday I was a nervous wreck but the Miralax prep was not really that bad. The worst part for her was not eating as she has had a crazy appetite (just no weight gain). Long story short :thumleft: her scopes showed ulcers from esophagus down through the top of the colon. He said without even seeing her biopsy results, he would say that she is moderate to severe. We started immediately on predisolone and prevacid. Monday the biopsy results confirmed with a majority of her issues in her stomach and terminal ilium. It's been a lot to swallow especially being told over the phone. We have received a ton of info in the mail from our wonderful IBD nurse and have a follow up appt on the 7th.

Currently, we are just in waiting mode, which is hard for me to wrap my head around. Again, our iron stomach child has Crohn's and I'm baffled. Since starting the prednisolone, this child has an insatiable appetite yet she isn't gaining any weight. I guess I was hoping to see some weight gain. Most of the fevers have gone away but the elevated heart rate hasn't...though she had a 102 fever this morning that we are keeping an eye on. Happy I found this group that is a wealth of information. We were told that the next step is 6MP which has me even more freaked out. It's just a lot to handle right now. Most people have been so supportive and concerned as Mallory has just been so sick. Though, the hubby and I have felt that some people heard that it's Crohn's and they don't think its that big of a deal. I guess they are miss-informed or ignorant. Some just think it's just a rough case of diahrea. We've gotten alot of the "at least it's not life threatening" comments which infuriate me. Who knows...I'm babbling...

Thanks for listening and I look forward to learning a lot more.
Kay

 

[imaboveitall]

Yep, and yep to:
iron stomach
no diarrhea
SKY HIGH lactoferrin (similar to calprotectin)
fevers

Hello and welcome to my personal hell, Crohn's with a kid who EATS everything.

I won't restate V's whole case, but if you read my other posts you'll feel a kinship.

Have you considered enteral nutrition? Worked wonders for Violet as regards weight gain and kept her med free for 3.5 years.

Others shall have lots to contribute, there are many intelligent mothers on here, it's a Godsend and a huge comfort.
Violet just started on Humira, that's what drove me to this forum: fear of meds. So I can relate to that as well, in spades.

Julie

 

[David]

Hi Kay,

I'm so sorry to hear about all the turmoil your family has been through and poor Mallory's diagnosis. But at least they have it figured out so now treatment can begin. I'm going to throw a lot your way, I hope you don't mind.

1. I agree with Julie above, look into enteral nutrition. We have an enteral nutrition forum in case you haven't seen that. In children, remission rates can be as high as prednisone without all the side effects.

2. I personally feel it's vitally important to educate the heck out of yourself about this disease. Become your daughters advocate. Learn about vitamin and mineral and nutrient deficiencies and make your doctors test for them. Get the results and start keeping track. Learn about the various tests, get her results, and track them. Learn about the various treatment options. I realize this is probably why you're here so I'm preaching to the choir but I have a pretty voice and like to hear myself sing

3. The rapid heart beat may very well be due to her anemia. The lack of weight gain is probably due to all the inflammation in her intestines. She's probably experiencing malabsorption.

4. I'd strongly suggest asking for her [wiki]vitamin B12[/wiki] levels to be tested since she has active disease in her terminal ileum (that's where it's absorbed). Crohnies are commonly deficient. Also have them test her [wiki]folate[/wiki] and [wiki]vitamin D[/wiki] levels.

5. If they're going to start her on 6mp, discuss getting a [wiki]TPMT[/wiki] test with the doctors first. That can help avoid some serious side effects.

We're here for you anytime. I wish you, your family, and Mallory all the best.

*hugs*

 

[izzi'smom]

Just wanted to say hello and welcome! I am sorry for everything you've been through,but am glad that you found your way here!
Isabelles weight loss was halted on pred but she still hasn't gained all of her weight back (she was 63# pre-ilness 12/2010 and is hovering around 60# after being as low as48#.)
Its rough having a child with an "invisible" disability. People can be unknowingly unkind. Crohns is chronic and thinking of your child with a lifetime of issues is tough. (((Hugs))) be sure to check out the. Section 504 plan for school as crohns is considered a disability and she has certain rights (including a tutor if need be). Hope your follow up goes well...make sure to write it all down...my headwas spinning our first visit!

 

[Catherine]

My 16 year old is also newly dx, and is on pred as well. Sarah is having ensure once daily. We told were told calorie intake is 130% of what a normal person of same weight and height would need. Also advice to increase carbs and protein. Has you child stopped losing weight?

 

[Cupcake]

Kay, your children are very lucky to have a parent so proactive in their treatment! I was diagnosed at age 11, and my parents were completely confused. In those days, not many resources were available, and the extent of their research was some pamphlets given by the GI doctor. It is very refreshing to see a parent taking so much time to learn more about their child's condition and educate themselves on the treatment options. Growing up with any uncertain medical issue can be difficult, but having a great at home support system is key. We're all so lucky that new treatments are always in the works, too.

 

[Sascot]

Hi, sorry to hear your daughter is suffering so much. I hope the meds start to kick in! My son went onto the enteral nutrition - don't know if you have modulen - it actually has an anti-inflammatory agent in it so it doesn't only give the nutrition but also heals ulcers, etc. Might be worth a try.
My son was also "atypical" as such - growing fine, never lost weight, never had constipation or diahhrea, only had a sore stomach on and off for a year but perfectly fine inbetween. This has to be one of the strangest diseases ever - no one seems to have the same symptoms.
Good luck

 

[Tesscorm]

Hi Kay,

I'm glad you've found your way here but sorry that it was your daughter's illness that brought you here It certainly is overwhelming when you're given that diagnosis; seems like you're thrown into a whole new world, with issues you've never had to consider, terminology you've never heard, etc. But, you'll find a wealth of information here from many, many helpful members AND lots of support and understanding! :ghug:

Many people just do not understand Crohns and say things that seem inconsiderate. It is just a lack of knowledge and not unkindness. But, still difficult to hear when we are dealing with our emotions in trying to accept the diagnosis.

I also agree with researching EN. My son's treatment, since diagnosis in May, has been EN. Between the Flagyl and EN, his symptoms disappeared within days. And, EN comes with comparable success rates as steroids, nutritional benefits and NO risks.

Good luck!

 

[Dexky]

Welcome Kay! She's just started pred and they are mentioning 6mp. Have they prescribed Asacol or Pentasa? That was also the combo my son first tried. I know how frightening it can be. I hope she feels better soon and stays that way for ages. Good luck

 

[DustyKat]

Hi Kay and :welcome:

You have been loads of fab advice already so I would just like to welcome you to the forum. Good luck and I hope Mallory is able to get on top of things very soon.

Dusty. xxx

 

[LilyRose]

Hello Kay,

I just wanted to welcome you to the forum. I am sure you will feel very suppoted here. And I hope your Mallory soon feels much better. It is very hard for a parent to be faced with a diagnosis of a chronic condition for their child.

I agree, it is great to read up on all the treatments, it can help when you are discussing options with your doctor.

Take care of yourself too. It is very stressful to be suddenly faced with this. But we have great doctors and hopitals, and there are many kids out there getting on with life with crohn's.

Take care,
LilyRise

 

[kimmidwife]

Hi Kay,
You have already received loss of good advice so I just wanted to say welcome. I am sorry you have to be here but you have come to the right place for advice and support. Definitly look into the enteral nutrition before starting on some of these other medications. I wish we had known about it in the beginning. By the time we found out about it my teenager was to stubborn to stick with it. I think if it had been offered in the beginning she would have been more willing. Also before your next appointment arm yourself with as much info as you can. I have learnt the hard way that most American docs push the classic drug routes and are not willing to look at alternative treatments such as enteral nutrition that have really good results for a lot of kids. Sometimes we have to really push to get them to listen. I got my daughter prescribed an alternate drug that most doctors won't consider because it does not have big drug company backing it since it is generic. I learned about it from this forum. I took the literature to the appointment and said we are trying this. After arguing he finally agreed and wrote the scrip. The drug my daughter is on is called LDN. (there is a whole forum here on it). We have been through a lot of the treatments which did not work for us so we are keeping our fingers crossed now. I don't want to overwhelm you with to much stuff right now but look into the enteral nutrition and LDN as well. Also about her high heart rate. I have to agree with David have they checked her for anemia? WHat are her Hemoglobin and hematocrit? Have they done an Iron panel? Find that out. Keep us posted!

 

[Crohn's Mom]

Hi Kay !

I'm just jumping in here to say Welcome We're glad you found you're way here !
I hope you stick around, and please keep us informed of how Mallory is doing, and ask any questions you may have, or just vent if needed ! :rosette2:

 

[polly13]

Hi, Kay and welcome. I only found this forum recently, and can completely emapathise with you how overwhelming it is when you child is diagnosed with Chrons. My daughter Lucy was diagnosed last year at just 2.5 and I will say it was one of the worst days of my life. However , you will learn to deal with to it, you will educate yourself more and more each day, there are great moms on here and I will say I have learned so much more since I discovered this forum. The information in relation to the meds is so hard to process and I am only coming to terms now with Lucy's need for medication. I suppose all I am trying to say in a roundabout way is that I know how you feel as do all the other parents on here and hopefully you will find the support and information you need.

 

[Mallory's Mum]

Thanks for all of the information. I've really been trying this last week or so to really educate myself about Crohn's. Cincinnati Children's had a Family IBD Day and was able to go to 3 great classes to learn additional information.

We go to the the Endo doc on Tuesday in regards to her hyperthyroidism. Not sure what way they are going to go on this. Her last blood work about 3 weeks ago showed that her anemia was resolving itself but things may have changed.

We go on Wednesday to see the Gastro doc and then Rheumy. She tends to get really awful looking eyes and her headache has come back during this last half week. That was one one her external manifestations of Crohn's so I'm hoping that the steroids are still doing there job and are enough.

At the conference, one of my classes talked about meds for Crohn's and the bottom up versus top down. He talked about EN and I will discuss it with our doc. Though, I can see why he said that american's would rather have a pill than EN as it is tough. I can't imagine only living on EN as it seems that many things center around eating. I did, however, love the concept of the anti-inflammatory capabilities EN has without the issues of steroids. Our little lady is eating us out of house and home. I just bought our 3 box of rice chex in 6 days. It's crazy. She started getting the moon face which, I will admit, was heart breaking. It was like something really clicked for me that I have a seriously sick little lady.

So, how do you know if steroids are doing their job? How long after starting steroids do they start you on your maintenance med?

Thanks for all of your information and support. I know we will need it.

 

[David]

You'll know the steroids are doing their job when her symptoms start to improve. Depending on the maintenance med, they'll often start it while you're on the steroids.

When you say she has awful looking eyes, what do you mean exactly? Are they really red?

 

[Mallory's Mum]

When she started getting sick, the skin under hear eyes looked dark and almost purplish. She had that really sick look to her. It has gotten better but as the day goes on, near the afternoon, she will complain about her head-aching. I then notice her eyes start getting the purple ring. Sometimes at this time, she gets a fever, which she did have 23+ days of fever before we started prednisolone right after diagnosis. The fevers have come more sporadic but not completely gone. Her hip has become a worsening issue. I just posted a question on the board about this issue.

 

[David]

Just to toss a couple ideas your way, those dark rings are often due to iron deficiency (anemia) which can also cause headaches. Dehydration can also cause it which can also lead to headaches.

 

[Mallory's Mum]

DUH. Never really thought about the dehydration aspect. I push liquids but it's really hard to follow around those self sufficient 8 going on 16 year old girls. I'm assuming they will run more blood work on Wednesday so I guess we will see about the anemia. She has had a ton of malabsorbtion issues so it makes sense. She's eating like a monster and gaining weight slowly so that might be why the eyes have looked a little better. Dumb question, but is the malabsorbtion caused by the sores or just the bowels in general not doing their job? We are so new at this and just sort of thrown into the mix.

 

[David]

That is most definitely not a dumb question. Please don't ever feel concern about asking questions here. That's what we're here for. :hug:

There's a variety of physiological changes that can occur in someone with Crohn's Disease that can lead to malabsorption. I'm not going to pretend to know them all, but inflammation, ulcers, and scarring are definitely big ones. Frequent diarrhea, medications, increased metabolic requirements, and altered diets can also lead to nutrient deficiencies.

If she's having malabsorption issues, have you had her vitamin levels such as vitamin B12, vitamin B9 (folate) and vitamin D tested? Those are some of the more common vitamins people with CD are deficient in and if they are indeed deficient, proper supplementation can improve symptoms AND avoid big problems down the road.

 

[Dexky]

Kay, with my son the dark eye circles would be a combination of things but especially bad after a lot of physical activity. We'd stay on him to drink water and gatorade but kids get so busy with friends that they forget.

We go to Vanderbilt's children hospital but I hear great things about Cincinnati Childrens as well. Please update on how the Weds. appts. go!

 

[Twiggy930]

Hi Mallory's Mom,

Welcome to the forum. My son was diagnosed at the beginning of February and was started on prednisone and azathioprine. He also gets those circles under his eyes as the day goes on, often by 11 am. The circles are always accompanied by him feeling terrible. He hasn't made it through more than 3 hours of school in a day since his diagnosis. We have a GI appointment today and I am going to ask about this. I will let you know what they say.

Dexky - I am going to try the Gatorade.

 

[Mallory's Mum]

Dexty: We are going to really make sure we are keeping her hydrated. Of course, she's not an overly sweets kind of person and I think I ruined her on the flavor of gatorade she used to like thanks to the scope prep. Too much sweet drink at one time.

Twiggy930: I will be curious to see what they say. She's not been too wonderful at school either. Besides the fatigue and not feeling good, she's been battling worsening right hip pain and some sporadic fevers. So I can relate. Sure wish these kiddos were much closer as she's really been struggling with relating it to friends. The kids are curious as to why she misses school but I think it's hard for anyone, even myself, to understand how she feels.

Many have mentioned the vitamin deficiencies that Crohnies tend to experience. I will be sure to ask about this on Wednesday too. I take it that these are blood tests?

 

[David]

They are indeed blood tests.

If you can get her some electrolytes in her drink that would no doubt be beneficial. If you can get something with no added sugar, all the better. If she can tolerate it, I'm a big fan of coconut water.

 

[Twiggy930]

My son also has a flavor of Gatorade that he can no longer stand due to the scope prep!

 

[Twiggy930]

We didn't get a clear answer to the dark circles under his eyes other than the Prednisone is not working adequately enough for him. He has been on 40 mg of Prednisone for 4 weeks and although he did have some improvement in the first few days of treatment we have not had any more improvement for the last 3 weeks or so. So we are switching to EN. I have started another thread about this.

I hope your daughter feels better soon. I keep thinking of her with her heating pad at school, what a trooper!!!!!!!!!

 

[Mallory's Mum]

@Twiggy: I've been pondering the concept of EN. It's so hard for me to really understand or know if she is in a thread as she is in such pain with the hip. I've heard a lot of great things about it at a convention as well as on here. At a convention I went to, the doctor said that only 20% of patients/parents will resign to EN as the concept of no food, formula only sounds hard. I will admit it does but if it does the trick...I would be all for it. After reading your posts, I did talk to my daughter about the concept and she sort of seems open to it. Of course, during her clean out of liquids only, she seemed ravenous. We have an appt tomorrow so I will keep you posted as to what I learn

How is your son handling the diagnosis?

 

[DustyKat]

I do think the dark circles under the eyes are due to deficiencies as David has suggested but I also think that until the disease is brought under control they will remain present. I am most likely stating the obvious there but while ever their overall physical condition is poor it will be reflected in their eyes, hair etc.

Matt also had these same dark circles and although they did improve somewhat when treatment commenced they didn't really resolve until he was in remission.
Re Prednisone Twiggy, it wasn't the miracle drug for my son either. I do believe it stabilised his condition, which on reflection I suppose is a level of success, but it was never going to put him into remission. I well imagine in our case it was the complications that presented further down the track that prevented it working to its greatest effect.

Dusty. xxx

 

[Twiggy930]

Hey Mallory's Mum,

My son has been handling the diagnosis pretty well. He is a really calm, laid back kid to begin with which I think has helped. He does seem pretty down now and then though. Seeing his friends seems to perk him up. On the days he is feeling really bad he has enjoyed playing Xbox with some of his friends online and can even talk to them via the Xbox (I didn't know this was possible :lol. We have been involving him in all the discussions about his treatments and he always seems to surprise me with the level of thought he has put into all the issues. I guess the disease makes them grow up fast. He was really against the idea of trying the EN at the time of diagnosis but now that the prednisone is not working well he is much more receptive to the idea. I hope that stays the case when he actually starts the treatment.

You mentioned that your daughter had sporadic fevers. My son had a couple of low grade fevers before diagnosis but spiked a high one last night. Not what we wanted.:ymad: Looks like we are in for a rocky spring break.

Hope all is well with you and your daughter. Is she still taking the heating pad to school?

 

[Lilyw]

Oh Kay, what an ordeal! My heart goes out to you and your daughter. I cannot imagine going through the Crohns journey at that age, I find it hard enough to manage as an adult. If I had a dollar for every person who has told me Crohns is "a bit of a upset gut" or mix irritable bowel with IBD I would be a rich woman indeed! It is ignorance and I be also found people try and empathize and relate it to their own experiences - "yes, I find spicy food sets me off too..." ah no, not the same thing.

This disease is serious, is complex and can be lethal. I had had a 48 yr old friend die from Crohns disease and I almost died Oct 2011 from Crohns related perforated bowel. I can only imagine what it feels like trying to help your child through this. My Mum has been my support/advocate through my battle with this disease and she feels utterly bereft at times being unable to stop the pain and problems. I just hope that for your daughter, now that she has been diagnosed, the medications help in shifting her to remission, that's the best outcome to hope for.

All the very best wishes to you,
Lily


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[AZMOM]

Mallorys mum - I'm late in this one but Claire gets purple under the eyes when she isn't doing well. Both times she was hospitalized, they were so dark they almost looked like bruises.

Hugs -

J.

 

[Dutch941]

Hi Kay, Welcome to the forum and I too feel horrible that you and your daughter are going through this . Your story touched a nerve as we went through similar scenario with my 12 year old son, Matt. Aside from the joint pain that is. I am surprised to hear all that you were put through before being sent to a GI??? I feel like as soon as we seeked treatment for similar issues a GI was suggested from the get go.
My son lost 12 lbs out of his 88 and while on steroids he began to gain again and ultimately exceeded his old weight , so fear not.....things will turn around with time and as you hone in on her issues.
Also....many have mentioned that you are amongst many loving mothers like yourself.....while this is true I feel compelled to point out that there are also loving fathers on here looking for help and answers! (just to be fair!)
Hang in there..keep us all posted......and if you come upon a solution to keep parents from losing their minds during this challenge ...please let me know.....I Need one!
Don

 

[imaboveitall]

You'd be surprised, Don, (I was) at how many folks both adult and ped are delayed in dx, and misdiagnosed.
Unless a "typical " (which there really is none) presentation of diarrhea, pref bloody, vomiting and joint pain, many DOCS do not think of IBD. I have pals of 20+years, docs, who say they have NEVER seen Crohn's w/out bloody diarrhea. They're not GI men, but still.

V was dx pretty fast, two months, with anorexia, night sweats and low grade fever her symptoms. No bad stools, no pain at first, no joint pain.

It's truly the most CONFOUNDING thing. :confused2: