Is there someone who can finally help us?

[CDJ]

I really need help and advice as I am so stressed out with all this now that I don't know which way to turn. I am afraid that this may be a long post as there is so much I want to say. Just a little background. I am a single parent with a 12 yr old son with crohns [ diagnosed when 8 ]. His father is still in his life, but has little input or desire to help with any problems [ he chooses not to be involved, though will critise me if things go wrong ]

My son has struggled over the last 3 years with needles, and for two and half has refused blood tests, no one can get near enough to him to take the blood. He was taken off azathioprine 2 years ago because of his refusal to have blood taken. He is on 3000 mg Pentasa a day now.

We have tried :-
Play therapists
Hypnotherapists
counsellors
Psycotherapists [ 3 so far ]
All have given up on him as he doesn't "conform" to how they expect a phobic person to be, and when he doesn't or hasn't responded to their treatment, they seem to have no idea what to do next and send us onto someone else. Rather than deal with it, we just keep being told he has no choice, but has to have blood tests, injections, whatever. Which we both know this. J is very knowledgeable on his disease, but it doesn't mean that by understanding he is going to go through with it.
I have spent a long time talking to him getting him to understand just why he needs to go through these procedures, and he does understand, and I know he really wants to do it, but there is some blockage there stopping him when it comes down to it.

J's problem isn't with the actual needle, it is the thought of it going into his skin. He will happily handle needles, but not let anyone near him if they are going to inject him with it!

Anyway, J had his endoscopies this week which showed he has inflammation in his small bowel and they want to start him on Infiximab in 3 weeks time.
While under anesthetic [ given by mask, not injection ] they inserted cannulars in both hands in preparation for the MRI the next day, which for him is really traumatic. We managed with these in over night with some difficulty, but he did it.
The next day was the MRI. He was brilliant, drank all the liquid he had to do before the scan, when into the scanning room and had the first part of the MRI with no problem. It was when he realised that the doctor was coming in to put a solution into his cannular he became hysterical and distraught, even though there is no needle involved in this part as they are just using a syringe to go into the cannular. He seems to become hyper sensitive to any sort of touch, like saying how painful the cannular were and the slightest touch with them hurt him. So for them to try to inject stuff into the cannular, for him, hurt badly.
The MRI was called off as they couldn't complete it.

We are now left with nowhere to turn, NO ONE seems to want to help J. I feel there is a major psycological blockage with him which is causing this. There is no way he is acting on any of this, for him this is all very real, and totally distressing for him and for me. I have shed many, many tears trying to persuade him to go through these procedures, and watching my child this upset is horrible.
Because he is a mature, intelligent child, he seems to be classed as an "older child" with behavioural problems, meaning it is being dismissed as him wanting to avoid these procedures, rather than an "older" child who is truely frightened. The medical staff just don't seem to see this.

Obviously with now needing to go on to Inflixamab it is going to mean regular infusions with cannulars and blood tests. The way he is at the moment there is no way he will go through with this, which means he isn't going to get the right treatment for what he needs, and no one is offering an alteranative.
The doctor just seems to think he is going to turn up and get on with it, despite knowing what he is like, as I said, no one will listen or help.

This is now stressing me so much it is making me ill, it is affecting my relationship with my son as I get so frustrated with him for not going through these procedures as I am so scared of him becoming really ill. I hate putting him through all this and feel helpless with it all with no one to turn to.

At home and school he is a different child, he is so easy going, very clever and get good grades at school, causes no problems at home or school. So all this behaviour is completly not him.

Is there anyone, anywhere, who can offer us help? We really have no one to talk to, turn to or know what to do anymore.

 

[Niks]

Oh my gosh, you poor things

I am so sorry you are both going through such a tough time. I KNOW if my eldest son had any of these problems he would have been exactly the same! I just don't know what to say to you. I really hope there is someone who has some ideas.

I really hope you can come up with some proper help for him.

Sending you both huge (((HUGS)))

xx

:ghug:

 

[Jmrogers4]

Sorry I don't have any answers for you but I will try and ask around. I work for some people who have Phd's in child psychology and I'll see if they have any suggestions as clearly something must be done.

 

[Hope345]

I have read this happening to other young people. I am not sure how they finally addressed it. I am sorry for you both. I wish there was an easy fix.

I always say knowledge helps. If he could read as much as possible about the medical part of needles and blood draws it might help.

wish you the best. You can help him through this.
He needs to realize that this is not going away. His control can be to show them the best spot to draw. His fears are real....

What does he think can be done to help them draw blood?
Can he get on this site and talk to other kids. There are several that would be glad to talk with him. i can recommend some if he is willing.

take care

 

[CDJ]

Thank you for the quick responses, it is so nice to know there are people who do understand.
Julie he has read up on the disease, and we often go away with the "smiles" section of NACC, which is for familes and children. So he does talk to other children. He does seem to know his attitude isn't helping anything, but still just can't go through with it.
Yes, his fears are very real, I wish the medical staff could realise this.

 

[kiny]

shouldn't have so much patientce, after a few shots no one cares anymore

I remember when I came in with crohn's disease and the GI asked me if I smoked and I said yes, he said ok, he took me to the section where they were doing open lung surgery and told me that is what happens to people who smoke, and I quit right away (I was a teenager).

You shouldn't have to put up with that, be firm with him and let them draw blood, the more hoopla you make about a shot the more he's going to refuse getting one.

 

[my little penguin]

You need psych who deals with medical coping - and quickly.

I realize you are very distraught over this - not trying to judge
You state you tried to persuade him to get his blood taken etc...
Has he always been given a choice as to whether he gets to get his blood taken or not ?
In the past two years has he "gotten" his way - in other words when he freaked out - no blood was taken or procedure canceled if he put up enough fuss???

I am with you in that he probably is truly afraid and you can't undo the past but kids learn from past behaviors so what was once an "ok you don't have to do it "sorta thing may have contributed.

Regardless - of why - can child life or psych help?
Has he been evaluated for anxiety?
Bargaining is not an option at this point.
Have you told him this is how it is going to be
That you feel for him etc....
Finding the right psych is key . It needs to be a doc he trusts
Does he trust his Gi ? What has he said ?

Not sure how to help other than psych should be involved regularly not just briefly .
Can your Gi recommend someone quickly ?

 

[CDJ]

It is attiudes like yours Kiny that really haven't helped me or my son. When you watch your child totally distressed it is heart breaking.

It is very easy to critise when you aren't the one going through this with a child. I get enough critism from others telling me how i should MAKE my son do what I want. If it was so easy, don't you think I would?

Rather than critise can you give some constructive advice as to handle a very strong 12 year old boy who is hysterical, frightened, distraught and so upset that no matter who is talking to him at that time, can't get through to him? If 2 large men [ radiologists ] can't get get near him to inject him, how do you think I can?

 

[CDJ]

The problem is we are in the UK, and cannot get help quickly under the NHS. I am on very low income, and cannot afford to go private, so we have to wait until appointments come through,
He has never been given given a choice, though when it became obvious that he was totally frightended, then the blood nurses wouldn't go through with making him, so in effect, yes, he has learned that by refusing nothing will be done, but it has beyond that now, and the fear is out of control.
I am going to make lots of calls this week to anyone and everyone to see where we can go to get help.

 

[kiny]

I gave the advise, you change medication just because he doesn't want a shot. If you give him the shots he will get used to it, if you use hypnotherapists you're saying it's ok that he acts like this. Everyone who hates shots gets used to it after a few times, I have seen adults get totally stressed from shots, after 2 or 3 shots they are used to it and relax. Each time he avoids getting a shot he knows it's possible to get out of it, and each time he'll become more and more frightened. Do as you like, but the last thing you should do is have patience with something like this, crohn's disease doesn't wait.

 

[xmdmom]

It sounds like a really difficult situation for the both of you. (((HUGS)))

Has he tried EMLA cream http://www.uwhealth.org/healthfacts...lexMember-Show_Public_HFFY_1126660673362.html or buzzy pain control http://www.buzzy4shots.com/Latest/needle-phobia.html?

I don't know if these would help if anxiety is the main issue but if he hasn't tried them, he might want to read up on them and consider it.

 

[Astra]

I replied to you in the other thread about buzzy
Just a long shot here, but sometimes this can be a control thing, he's not in control, so....
would he inject himself?
An alternative to Infliximab is Humira, self injected using a needle or a pen. no infusions.
I use a needle and it's dead easy, doesn't hurt at all.
good luck xx

 

[my little penguin]

We use buzzy here too .

 

[Hope345]

CDJ,

Kiny is a very matter of fact person which we all need in our lives too. It is good to get all kinds of advice.

My guess is you have already tried the tough love approach with no results.

I love the idea of him being able to do it himself. Is that a possibility?

12 is old enough but not quite old enough to understand everything.

What are is symptoms right now? bleeding, losing weight, jaundice, pale, diarrhea, pain?

 

[Jmrogers4]

12 is also close enough to that teenage state that even though they know the big picture, they live in the here and now and that is the only thing that is important is what is happening at that moment, so regardless of him going in before hand saying yes I will do this when the moment comes that is all that matters not the after effects of this will make me feel better, this will help.
I agree with Kiny in that after several time he will get used to it and it sounds like you can agree with that. There is something in his brain that is blocking that and it needs to be helped.
It could be a control issue even subconciously we are dealing with that and have tried to give Jack control in how/when he drinks his EN but not if he does. There is so much more in their lives that is out of their control that even a little bit of semblance to control it helps. At least that is what the child psych I work for told me to give him the choices of those things he can have a choice in regarding his care and to just listen before I go to the you have to or else, find out why he can't or won't comply.
I know it is not much help and I truly hope you can find a way to make something work he can comply with. Sending lots of hugs!

 

[parentnj]

Our son is 13 and hates needles as well. he would get nauseas and throw up when getting blood drawn. At the last blood drawing we had him lie down and the nurse used the "butterfly" method to draw the blood while he looked away. Once it was over, he remarked that he got himself worked up over nothing. He no longer dreads needles though he certainly doesn't look forward to it. I can only say that not getting blood drawn wasn't an option for us, he was so sick and had lost so much weight that if we didn't get his treatment going he was going into the hospital and was going to get an IV and intravenous nutrition. It is so difficult but I don't think you have a choice but to insist the tests get done. There are ways to make the procedures much more comfortable. I do like the idea of self injection, one worth trying. My son now prefers IVs to injections so remicade is our next step if MTX doesn't do it alone. I would also try discussing the situation when he is calm and explain what not getting treatments could mean (surgery, growth impairment, etc) in a calm and rational way. It will certainly take more than one discussion, and won't be easy. I hope all this turns out well and he gets the treatment he needs.

 

[Coltyn'sfamily]

My son is 12 also and is on Humira. He's been dealing with Crohn's for a little over a year now and he also has autism. We used to literally hold him down to give him needles. we were rough. and the Humira is still a challenge. But i would def say a psych dr will help. Good luck! And I will be praying for you! I'm sorry youre feeling so alone. but I know someone is out there that can help. Don't give up. sometimes when youre mad enough things happen! ((HUG))

 

[CarolinAlaska]

I've been dealing with this a little differently in my 13 year old daughter. She didn't want to do the NG tube after 4 tries created a negative experience. She made the choice to drink it. Our docs are on board that if she can't do it, they would have her put under to have the NG tube put in. The drinking it hasn't gone well, and our daughter came to me yesterday and today and asked for the NG tube to be put in so we could change formulas. She insists that we put her under for it. Is your medical team willing to do this, or to sedate your son for the procedures he needs? Lots of people are claustrophobic and get sedated for MRIs and CT scans... Our doctor has prescribed EMLA cream for us to use prior to blood draws. One day I practically had to physically pull her out of the back of our van for a simple blood draw. EMLA cream was a solution that has really helped. Ask your son if he has any suggestions as to what would work for him. I hope you can find a solution soon.

 

[kimmidwife]

I would suggest trying hypnotherapy of you have not tried that. We had so e very good success with phobic patients using hypnosis to overcome fears. I know you said you are in the UK so I don't know if it might be hard to find a hypnotherapist. If you had to pay for it maybe they would let you pay it out or if you explained the situation give you a discount. There are also hypnosis tapes and programs you can buy online which might work as well.

 

[Marni's mom]

CDJ, I completely understand that you are in situation where your child is so very afraid that he will fight to his death to avoid the source of that fear. He has definitely developed a phobia of needles. All the advice you've been given here is good. And I agree that if he is forced to have an injection, he will see it's not as bad as what he has built up in his head and he will allow it afterwards. I think we've all been through some sort of similar situations with our kids. On the other hand, maybe you should insist he be seen by a psychiatrist (not a psychologist), who can treat the phobia for the time being with medication like an anti-anxiety med or an antidepressant....just until he's over the fear. Another idea that came to mind as you described how you can't even get blood tests on him is having a port placed under general anesthesia so that blood can be drawn and meds be given through that whenever necessary. The only drawback to that is that there still will be a stick through the skin as access to the port is made. It just won't require anyone "searching around" or "digging" for a vein to access after the stick. That's the part that really hurts. When my daughter started her Remicade infusions, getting an IV started was horrible for her. It often took six sticks to find a vein, and often required a specialty team to come in to get the IV started. If we had not determined Remicade wasn't working for her and ceased the infusions, I would have insisted a port be placed. And EMBLA could be used to numb the skin over the port before any stick occurs.
I hope this helps.

 

[Tesscorm]

What a tough situation to be in!!! It's certainly not as serious but, to a degree, I can understand the 'refusal'... Stephen was such a picky eater when younger (a bit better now, finally, at 18!) and my husband always said it was some sort of 'fear'. When we would insist on a food (and I truly mean a sliver that he wouldn't even taste or feel), he would 'try' but would get so worked up that he'd be crying, nauseated, etc. I know he really was trying but just couldn't get past whatever it was that was stopping him. But, my heart goes out to you because you certainly can't afford to wait for him to outgrow it...

Has anyone tried to actually show him what happens to the needle once it's inserted? When I'm at the dentist, I have a stupid but horrible fear that those picks/utensils will get caught in something and pull out all sorts of tissue! :lol: I know that can't happen but it's always in the back of my mind! Perhaps your son is envisioning how 'deep' those needles go, he may be afraid of the needle 'hitting' something painful inside or puncturing something (when your imagine starts running, anything is possible!). Perhaps if he could be shown a cross section of the skin/tissue and then shown exactly where the needle would reach (perhaps only illustrate a subcutaneous injection), he will realize that it doesn't go far, that it's far away from bone or tendon or whatever may be in his imagination. It may be the unknown that is fearful for him???

If you can get him to agree to a needle, another trick I used with my kids during unpleasant procedures was to have them start counting backwards from some random number like 58 but in multiples of 3... it's something that takes some thought and takes the focus away...

Good luck...

 

[Bubbly]

Sorry i cant offer any help in a very stressful time for you and your son, but i didnt want to read and go.

We are also UK based, i feel i am very lucky that my 14 year old son is very good with bloods, always has the cream on his arm, very laid back about it. Mind you he can also sulk big time, he had to have an nj tube put in during the scopes for an mri the following day, he had this procedure last year and sadly it had to be repeated a couple of weeks ago, when we told him he sobbed and sobbed, didnt want it at all, the nurse spoke to him, he refused, however in the end he did accept it, and afterwards he said it wasnt at bad!

I appreciate this doesnt help you or your son, but i really feel for you at such a difficult time, and i really hope you get some help and support from the right people to help your son through this, he sounds like a strapping son who is also very well informed about his condition.

Notice that you also meet up with others, have you ever looked up 'Over the Wall' group, they are on facebook and also have a website, they offer holidays for children with illness, my son attended last year the Dorset camp in Summer, he wasnt sure, we just dropped him off, didnt no anybody at all, the staff are amazing, and he had a fantastic time, fingers crossed it gets in this year also, just an idea that might help and not many people no about the group, they break is funded, and they can also provide transport to the camps, supported by doctors and nurses.

Anyway, sorry rambling away, as usual for me! I really really hope you get the help and support for you both and look forward to hearing back from you x

 

[Devynnsmom]

(((((hugs)))) I have no real advice for you. My daughter was also terrified of needles when we first started on this journey. The first time they took blood at our childrens hospital, they had to hold her down. That broke my heart, seeing her held down screaming. The next time was easier and now 3 years later she doesn't bat an eye. I hope you can figure something that works for your son. Have you tried Emla or the buzzy bee? If not, maybe they would help. I know my daughter refuses Emla, she says she hates the feeling and would rather feel the poke.
Stay strong. I would ask your dr to refer you to a psychiatrist if at all possible. They may be able to figure out what is causing the phobia and work with him. Good luck

 

[xSophiexx]

hiya dont know if they do this where you live but i am also in the UK and they have numbing spray for children or "special cream". if you explained that this would COMPLETELY numb the area?? put headphones on, look away etc

Also you said your boy was knowledgable on the disease .. does he realise what could happen if it goes untreated??

another thought - he is 12 and seems to have a high level of understanding.. could you show him this thread??

failing that ... bribery? just kidding.

Sorry to hear this.. im 22 and only after being diagnosed did i get over my fear - the fear for me is similar to your sons its the thought of it going in me and the veins that freaked me out!! i fainted each and every time!! but once i got into the mindset that this is Necessary i dealt with it and just look away and try to ignore its happening.

i think your son will pick up that this is a big deal - could be negative and hype him up more as for me the fear and adrenaline was worse than the blood test!

good luck xx

 

[1tiredmama]

Honey, I know just how you feel. I have a 12 year old daughter with severe anxiety. She sees a child psychiatrist who can prescribe medication. I have used Valium on an "as needed" basis to get my daughter to the orthadontist. Have you considered trying a calming medication to be used just for blood draws? Maybe the doctor who orders the blood draws would be willing to prescribe something for your son.

I'll also add that I need the same type of help to get on an airplane. It really works when nothing else will.

Good luck! You have my sympathy.

 

[CDJ]

Thank you all again for the replies and the help and understanding.
We have used the emla cream many times, but he says he still feels a lot of pain and now won't let them put it on. I think what he "thinks" is pain is actually just pressure, but he can't work the difference.
Bribery --- has been tried many times, cost me a fortune But that didn't work either, so I don't do that any more.

TessCorm, I like much of what you say and it does make some sense as to how my son feels. I had exactly the same thing with food with him too when he was younger.

I have asked them about prescribing some sort of anxiety medication while going through these procedures, but no one is willing to try it, saying that don't do that. But I would have thought, at least for a few times, it would be prefferable to a very frightended child.

We are seeing a child psychiatrist this Friday, someone I am told gets good results, so fingers crossed.
The hospital have also decided that they will start him on a course of steriods for now until we can get things more under control.

I only came across Buzzy Bee yesterday, I had never heard of it before. I have managed to find a UK stockist and ordered one. Maybe it is the answer we need.

Bubbly, I haven't come across the "Over the Wall' group, I will look them up.

 

[Bubbly]

Good luck for Friday, wish you both well and hearing back from you.

We hadnt hear of 'Over the Wall' either until his IBD nurse suggested it, they had space, so very last minute for us, they really helped our son, he was feeling very down with everything, feeling alone as had been so ill, however when we picked him up, he was smiling, singing, didnt want to come home at all, begging to go again. They do fantastic activities, his favourite fishing due to the fact the fish pooped on his hand!! They are charity run, we where amazed we didnt have to pay, staff out of this world, is approx 1 to 1, some cases 2 staff per child, always singing silly songs, they even wrote a book, which has been published, a whole book of their own, so he is a titled author!! If you cant find them let me know and i will attempt to post a link for you.

Wishing you both well for Friday, and also good luck with Buzzy x