New here. My 8 year old son has Crohns

[meeshymeesh]

Hello, my name is Michelle and I am mom to LIAM and we live in South Florida. Liam was diagnosed with Crohns in Oct 2013 - aged 7 after being admitted to hospital with C. Diff. He has never had antibiotics so the C.Diff went undiagnosed by his Pediatrician for 2 weeks, told us he had a stomach bug!!
Found a great Ped GI ( this is an achievement in S.Florida) in Jan 2014 and he has been on SULFASALAZINE and 6mp since then. He has also had 2 rounds of Prednisone too. He has his blood work done every month and each month some of the markers have been in the abnormal range, hgb, crp, Sed rate, lactoferin and Calprotectin. She decided to do an endoscopy and colonoscopy last Monday as was pleased that all the infected areas had cleared up considerably except an area in the Cecum was was heavily inflamed. Explains the abnormal lab work.
She took a biopsy and next week we are doing an MRI Enterography and then we meet to discuss.
As with every parent on here it has been a very stressful year but I cannot do anything to change the diagnosis but what my husband and I are really really struggling with is Liams fear and anxiety of shots, blood draws, IV's etc. we have had 6 months of blood draws and the like with him kicking and screaming to the point where I cannot hold him anymore, my husband has to come. On Monday before the colonoscopy and IV insertion, they gave him sone Versed because even my husband was struggling to hold him still and in the end he spat at one of the nurses. My husband and I were mortified. It took 2 doses of the Versed to calm him down enough to start the IV.
Do any other parents have kids that are really nervous. We have been told before by ER nurses that we should see someone about his fear. I won't tell you what I told them!!!!
Just incase we have to start Remicade or Humira I have ordered a Buzzybee which I read about on one of the posts here.
Any thoughts on wether Remicade or Humira would be a better option given his fear ?

 

[ben11]

Hi Michelle im not as experienced with Crohn's as others on the forum though you said he had maybe c dif how did they diagnose i guess through a stool sample what let them to test fpr that, also could they have mixed up a diagnosis. After colons copy Crohn's was diagnosed so atleaat they now have a proper ddiagnosis.my son ben does not have a diagnosis of Crohn's it looks llike an ibs diagnosis though the people on forum have been helpful also with liams fecal calpro what was it someone who ia more experienced will also reply thanks Heather

 

[DanceMom]

Given his level of fear and anxiety and the ongoing need for needle sticks, I think seeing a therapist is a logical option. We haven't needed to use one at this point, but I'm definitely keeping an open mind because my daughter is becoming an increasingly difficult stick. She isn't to the point of needing to be held down (which definitely warrants intervention of some sort in my opinion) but at the very least she could benefit from learning some calming techniques and coping skills.

 

[Mehita]

For regular blood draws we use Emla numbing creme. If we are at an appt, we request it right away and by the time we go to the lab, he's all numbed up. We also have a prescription for at home in case we're just running in for quick bloodwork. I'll put a quarter size dollop on and then wrap his arm in Press 'n Seal.

For IV's, they use a j-tip for my son every time. I don't fully understand how it works, but it's a pop of air and then the spot is immediately numb. He never feels a thing. www.j-tip.com.

We took my son to see a therapist for anxiety and fear of needles. She gave him all the basic tools he needed (visualization, breathing, etc.) but I'm not sure how it would work with a younger child. At 14 we were at least able to rationalize with my son and he was extremely open to wanting to learn how to cope.

In terms of Remicade vs Humira... I dread the day Remicade stops working. Humira shots hurt! My Little Penguin has had success with adding lidocaine to her son's Humira though.

 

[my little penguin]

Second the child psychologist.
Your Gi dept should be able to refer you to someone from medical coping.
I have a nervous one but thankfully not the Ibd kiddo.
Remicade would be easier since it's at the hospital so the nurse is the bad guy not you
One stick every 6-8 weeks after induction - gets the meds and blood work all at once - done and your good
Humira means needle sticks by you at home every two weeks
And you still have to get bloodwork
Humira burns - I never heard my kiddo scream like that before and he get allergy shots every two weeks since the age of 4 no problem . He was dx at 7 and is now 10.
Our Rheumo did tell us a trick about adding lidocaine to the humira syringe.
This made a big difference but I still have to put the med in extremely slowly .


Video distractions with headphones make a big difference .

 

[Maya142]

If you get a choice, definitely Remicade over Humira. Humira shots burn and my daughters hated them but were old enough to understand they needed them and eventually got used to them. They both MUCH preferred Remicade - one stick every 4-8 weeks. They both liked the chance to relax and watch tv and miss school for the infusions!

We've had great success with seeing a psychologist for just help with coping with a chronic illness. It did take some trial and error to find one that had experience with kids with chronic illnesses, but once we did, it made all the difference in the world. Our GI referred us to one who actually works in the IBD clinic at the hospital.

 

[kimmidwife]

Meeshymeesh,
We are also in South Florida. You are absolutly right about it being tough to find a decent doctor. Can I ask who you are using? We are okay with ours right now but she has been out sick for the last few weeks. I hope she is back this week but I always am keeping my ears out for other decent doctors around here.

 

[Farmwife]

Welcome.
My girl has a buzzybee. She use to use it but now doesn't need.
My DD did both Humira and now Remicade.
She loves her Remicade infusions but hated her Humira.

 

[Sascot]

Sorry to hear your son is so scared. I struggle with my daughter a bit, although now she is older she sits still for bloods with tears streaming down her face. It might be worth getting a therapist involved. We haven't used either meds, but it seems Humira hurts plus you would have the stress of having to inject him yourself.
We use Emla numbing cream for blood draws and my son likes them now

 

[Malgrave]

Welcome to the forum!
My son's (now 7) fear for needles has always been very bad also. Only thing that work is laugh gas, but it's not available in every hospital, at least not here in Europe...

 

[CrohnsKidMom]

Welcome to the forum. Sorry to hear you're going through such a tough time. My son is 9 and was deathly afraid of needles. He has been on methotrexate shots for over a year now. He is still anxious about them, but has gotten a bit used to it. Bloodwork and IVs were very scary at first, but he handles them pretty well now too. If your son is growing less tolerant, rather than getting used to them, I agree it's time to seek some counselling for him. hopefully something can be done to help him through it.

 

[Worried mama]

My son has/had extreme needle phobia, our last needle which was for MRE, the hospital gave him 'giggle juice'... worked like a charm, so much that the next day he declared himself free of his needle phobia.... We will put that to the test soon enough.

 

[meeshymeesh]

Meeshymeesh,
We are also in South Florida. You are absolutly right about it being tough to find a decent doctor. Can I ask who you are using? We are okay with ours right now but she has been out sick for the last few weeks. I hope she is back this week but I always am keeping my ears out for other decent doctors around here.

We see a Dr. Debra Duro at ICAN Gastro in Weston. She is great and spends a lot of time with each patient. Relatively new practice so a few teething problems at first but we like her, my son included, which is very important.
I have also been given a name of a great Ped GI Dr in your area, Boca Raton. Dr Lawrence Adams.

 

[kimmidwife]

Dr. Adams does not take our insurance. I have not heard of Dr. Duro. Is she a single practitioner or in a group? What is ICAN?

 

[Jmrogers4]

One other thing in favor of remicade is one stick for infusion and labs, we have labs drawn at each infusion. Put the IV in draw blood and then hook up medicine.
Have not had the anxiety you are experiencing, while he didn't like them, he quickly got used to them after the numerous blood draws and is not bothered by them anymore but he was 10 at diagnosis and is now 15

 

[meeshymeesh]

Dr. Adams does not take our insurance. I have not heard of Dr. Duro. Is she a single practitioner or in a group? What is ICAN?

She is relatively new to the south Florida area. Did her training at Boston Childrens Hospital.
She is a single practitioner and ICAN Gastro is the name of her clinic.
Tel 9546073240

 

[kimmidwife]

Thanks meeshymeesh. We finally heard back from our doctors partnER yesterday. Our doctor has been out for ovER two weeks very sick. Anyway we have a plan in place which I am happy about that is what makes me leery of single practitioners. But it is always good to know about other docs.

 

[CDJ]

I can totally relate to your post. My son was 8 when diagnoised with crohns [ now 13 ].
He had a MASSIVE needle phobia. It is really hard to explain to people just how this impacts on your child. With Josh he started off refusing to have blood taken. Sometimes I was able to reason with him and he would go through with it. But as time went on [ just months after diagnoises ] he would really kick off. He would get superhuman strength and there was no reasoning at all with him. This is a child who wouldn't say boo to a goose, is very quiet, doesn't play up ever. He was just really frightened of what was happening. We got all the "well you should just force him", "make him do as his told etc, etc"! This was usually from people who were never there when he had to have a blood test or needles being poked into him. His anxiety levels were through the roof. As he got older people [ and nursing staff ] called him a baby for playing up. They seemed to think he was doing it for attention -- he wasn't, he was truely frightened!! It started to affect him all the time as he was so frightened each hospital visit that they were going to start putting needles into him.

Eventually he was taken off azathioprine because he wouldn't have blood taken. I tried everything to get help, seeing various counsellors, hypnotherapists, anyone I thought would get through to Josh. None of them helped.

Two years later [ early 2013] Josh went into a major flare up due to not being on the azathioprine and we had no choice but to find help for him. I bought a Buzzy which does help. We finally found an excellent counsellor who went over the top in her helping of getting Josh through treatment. She actually listened properly to both of us and Josh's fears. We were told that as Josh has no control over the disease, the refusal of blood tests etc were his way of gaining control over his life. This counsellor emailed every person treating Josh and told them that treatment had to be done how Josh wanted it and they had to give him time and not rush things. She sat with Josh the first few times to make sure things were right. The other thing she did was to prescibe an anti anxiety pill which really helped. I had ask for something like this from his doctors before, but no one would give him anything.

Since April 2013 Josh goes for blood test with no problems. He was in hospital for a week in September and again allowed them to stick needles in him. I am not saying he likes having it done, he doesn't, but the major fear has gone and his anxiety is no where near where it was. Our next thing to overcome is his MRI next week, he is pretty anxious about that, but I am hoping that given how far he has come he will be okay.

I think all you can do is to keep trying with finding a counsellor that you are both happy with, someone who will work with you. Also get a presciption for an anti anxiety med so that it can be given before you leave the house.

It took me three years to get Josh in the place he is now, so I wish you luck in finding help for your son.

 

[meeshymeesh]

I can totally relate to your post. My son was 8 when diagnoised with crohns [ now 13 ].
He had a MASSIVE needle phobia. It is really hard to explain to people just how this impacts on your child. With Josh he started off refusing to have blood taken. Sometimes I was able to reason with him and he would go through with it. But as time went on [ just months after diagnoises ] he would really kick off. He would get superhuman strength and there was no reasoning at all with him. This is a child who wouldn't say boo to a goose, is very quiet, doesn't play up ever. He was just really frightened of what was happening. We got all the "well you should just force him", "make him do as his told etc, etc"! This was usually from people who were never there when he had to have a blood test or needles being poked into him. His anxiety levels were through the roof. As he got older people [ and nursing staff ] called him a baby for playing up. They seemed to think he was doing it for attention -- he wasn't, he was truely frightened!! It started to affect him all the time as he was so frightened each hospital visit that they were going to start putting needles into him.

Eventually he was taken off azathioprine because he wouldn't have blood taken. I tried everything to get help, seeing various counsellors, hypnotherapists, anyone I thought would get through to Josh. None of them helped.

Two years later [ early 2013] Josh went into a major flare up due to not being on the azathioprine and we had no choice but to find help for him. I bought a Buzzy which does help. We finally found an excellent counsellor who went over the top in her helping of getting Josh through treatment. She actually listened properly to both of us and Josh's fears. We were told that as Josh has no control over the disease, the refusal of blood tests etc were his way of gaining control over his life. This counsellor emailed every person treating Josh and told them that treatment had to be done how Josh wanted it and they had to give him time and not rush things. She sat with Josh the first few times to make sure things were right. The other thing she did was to prescibe an anti anxiety pill which really helped. I had ask for something like this from his doctors before, but no one would give him anything.

Since April 2013 Josh goes for blood test with no problems. He was in hospital for a week in September and again allowed them to stick needles in him. I am not saying he likes having it done, he doesn't, but the major fear has gone and his anxiety is no where near where it was. Our next thing to overcome is his MRI next week, he is pretty anxious about that, but I am hoping that given how far he has come he will be okay.

I think all you can do is to keep trying with finding a counsellor that you are both happy with, someone who will work with you. Also get a presciption for an anti anxiety med so that it can be given before you leave the house.

It took me three years to get Josh in the place he is now, so I wish you luck in finding help for your son.

CDJ
I cannot thank you enough for your reply it so sounds like my son.
He is scheduled to have his MRI Enterography this Monday which no doubt will be very stressful for him. I spoke with the sedating Nurse this morning and explained to her his level of anxiety and suggested that they give him some calming meds as soon as we arrive otherwise it is going to be a long stressful day for everyone.
Thanks again

 

[my little penguin]

Second the therapist to give him tools so when he has future things he can slowly learn how to process them better .

 

[JenniferJuniper]

My 13 year old was a mess during the diagnosis phase and freaked out for every blood draw and IV, crying, shaking, ect...
We started Remicade and he just had his 3rd infusion last month with zero drama. Just held out his arm and played his phone. I was stunned! It just became his new normal over time.

As far as whether Remi or Humira was better for him, I had no input on that at all. Drs met and determined treatment then made their recommendation. Not sure that would have changed if I had asked for the other drug.
Our dept has medical coping to help kids. We didn't end up needing it, but it might be worth it?
Good luck, seeing that trauma is so difficult. Sending hugs