Hi, new here, Mom of son with crohn's

[TimsMom]

I am a Mom to an 18 year old boy with Crohn's. He was diagnosed at age 12 and has been hospitalized so many times I have lost count. TPN is often is best friend. His biggest problem does not seem to be crohn's itself but rather, EIM's and consequences of treatments. He has turned 18 now and we are starting to look for an adult GI. His PedGI was so wonderful that I am not sure if anyone else could ever live up to our standards now...LOL. We have time, she will keep him until 21 but we would like to start looking now and maybe find one closer to home. His PGI is 120 miles away.

Sometimes I get mad that this disease has stole my son's childhood. Since diagnosis, he has made it through one year of school with only 90 absences that year! Since he has tried but usually just gets a few weeks in a year. In the meantime has had homebound tutoring, online classes but mostly has just missed school and all the experiences that go along with being a child and teen. Surprisingly he is fairly positive but the last year finally started antidepressants as this all caught up with him.

He has a very short list of meds that he can take as he is either allergic to others or the ones that worked at one time no longer work or cause severe side effects.

As far as other things besides crohn's inflammation in the small intestine, colon and stomach, he has been diagnosed with the following: secondary adrenal insufficiency (result of steroid use), kidney stones (has passed over 50 since diagnosis), gallbladder destroyed by flagyl and removed, c diff, psuedotumor cerebri (most likely from steroid use), osteoporosis (so far has broken 3 vertebrea), IBS, visceral hyperalgesia, bile gastritis, gastroparesis (resulted in gj tube feeding for a year), and pancreatitis (side effect of med). I am sure I am forgetting something but I think this is enough. He is always nauseated and vomits almost daily...why? could be just about any of the above reasons. He now takes Marinol twice a day which helps keep the nausea down a notch but it never goes away. I hope that one day he will "get better" but all we can do now is go one day at a time and embrace the "good days".

 

[DustyKat]

Hi TimsMom and :welcome:

Oh my, your son certainly has been through the wringer. I'm so sorry to hear that all he has had and is suffering with now.

We have a parent's forum here so please pop by there...

http://www.crohnsforum.com/forumdisplay.php?f=49

Perhaps a look at the threads regarding Stem Cell Transplants that some of our members have had may be of interest to you. David has put all the links together here...

http://www.crohnsforum.com/showthread.php?t=22259

I'm glad you have found your way here, you will find information, support, laughter and understanding here Mum. Thank you for sharing your son's story with us and I hope and wish more than anything that he is able to find long lasting relief, he deserves nothing less. If you have any questions please don't hesitate to ask.

Welcome aboard...:hug:

Dusty. xxx

 

[xJillx]

Hi and welcome! I am sorry your son has struggled so with his Crohn's and has many other health issues as a result. What treatment is he currently on? Is it working? As Dusty pointed out, Stem Cell Transplants are a new and groundbreaking treatment. But we are hearing more and more about it, and really postivite things at that! It may be worth looking into.

I hope you can find your son a good adult GI, and I hope your son has more good days than bad.

 

[Dexky]

Welcome TimsMom! Wow, he has certainly had it tough! Glad you found us and hope you stick around!

 

[TimsMom]

Hi and welcome! I am sorry your son has struggled so with his Crohn's and has many other health issues as a result. What treatment is he currently on? Is it working? As Dusty pointed out, Stem Cell Transplants are a new and groundbreaking treatment. But we are hearing more and more about it, and really postivite things at that! It may be worth looking into.

I hope you can find your son a good adult GI, and I hope your son has more good days than bad.

Currently he is on weekly Humira (Remicade wore out its welcome a long time ago and now Humira is "kind of" still working), Bentyl, Cortef (small dose for adrenal insufficiency), Marinol, Nexxium, Urosodoil, Neuronton (sp?), Androgel, HTCZ, Prozac, Vitamin D, Zofran (as needed which is usually daily), Ativan (as needed). In the past he has been on steroids (they try to avoid those now), Cipro (can't use now, brings on C Diff), Pamidronate (year of infusions), Colozal (no longer effective and he tried others in that drug family too and the other ones caused reactions), 6 MP (got pancreatitis from it) and other meds for various conditions along the way.

 

[xJillx]

Oh boy, that is a long list of meds. I am sorry to hear Humira is only "kind of" working. What do his doctors suggest would be the next step if Humira is no longer doing its job?

 

[Loriebird]

Wow. That is a lot for one kid to take. I'm sorry your family is going through this. Is he going to be able to graduate on time?

 

[TimsMom]

Oh boy, that is a long list of meds. I am sorry to hear Humira is only "kind of" working. What do his doctors suggest would be the next step if Humira is no longer doing its job?

Experimental drugs which up until now he wasn't eligible for but he just turned 18 so now it may be an option.

 

[TimsMom]

Wow. That is a lot for one kid to take. I'm sorry your family is going through this. Is he going to be able to graduate on time?

He has an IEP under the Special Ed. category of Other Health Impaired. Because of that, he can graduate based on his IEP goals rather than credits. So his plan is to graduate based on the IEP. We did take him to a local technical college and he took their placer test and passed it all so that was good news. We are fortunate that he is very bright and seems to pick up stuff on his own. The limits with graduating on an "IEP" rather than by required credits is that getting into a 4 year college would be nearly impossible and he would have to start out at a technical college or community college. If he was successful at those places, a 4 year college could accept him. That is fine because truthfully, the way he is now, he could never do full time at a college. His dream is to become a nurse and our local technical college has a 2 year RN program but he has to be well enough to attend regularly. So, his plans at this point is to go part time to the technical college and work on his associates degree and go from there.

 

[DustyKat]

Wow, these kids never cease to amaze me. Life throws so many obstacles in their path and still they see past them and continue to be determined to achieve their goals and dreams.

Dusty.

 

[Dexky]

Why is he on Ursodiol? My son takes it for his PSC.

 

[DougUte]

He has an IEP under the Special Ed. category of Other Health Impaired. Because of that, he can graduate based on his IEP goals rather than credits. So his plan is to graduate based on the IEP.

Welcome TimsMom. I am glad you found the forum. I am glad they could use the Special Ed IEP for your son's situation. Most of those kids in Special Ed are the kids with mental deficiency. Alot of them have physical issues as well. My wife and I have fostered 2 special needs kids. We are in our 12th year now. The IEP route does make it impossible to go to a 4 year college, but he should be fine with going to a trade school, getting his associates their and then transfering to a 4 year college.

Your son has been through a whole lot of hell. I understand, and the only meds I have been on specifically for Crohns are Sulfasalazine, Asacol, and Humira.

Good luck to you. This is a good place to talk to people who understand what you are going through.

 

[Loriebird]

I agree, Dusty I'm sure your son has a bright future ahead of him. I'm glad that he will still be able to graduate high school and pursue his goal of becoming a nurse! And what a great nurse he's going to be, too. I just know that he's going to be able to use all of this bad and turn it around to help people who are going through similar problems. We all know what a difference a genuine, compassionate medical professional can make! I wouldn't worry about starting at a community college - a lot of kids do that anyway just for financial reasons. All 3 of my siblings have Associates degrees, and all 3 proceeded to Bachelors and graduate degrees. Your son has plenty of time ahead of him. It sounds like he's doing the right thing - worrying about his health first - and taking things at a pace he can manage.

I'm sorry it has been such a difficult road. I know it's really hard to watch someone you love be sick and to not be able to help them. I always worry about my family because they worry so much about me! I really hope your son's doctors can work with him to give him a healthier life.

 

[TimsMom]

Why is he on Ursodiol? My son takes it for his PSC.

He takes it for bile gastritis.

 

[dannysmom]

Hi. Welcome to our forum and thank you for sharing your son's story. My son became ill at the same age as yours, but is not officially diagnosed yet. He also has been too sick/fatigued to attend school and also does home instruction. I really hope your son can get some lasting relief soon. Does he have headaches with his pseudotumor cerebri? I am curious as to how that was diagnosed and if treated. Danny has a constant headache that I think sounds like a slight high-pressure headache. (My older son had CSF pressure issues but is doing fine now.)

 

[David]

Greetings and welcome!

I'm sorry your son has been through so much

Out of curiosity, is he on any supplements and are his vitamin and mineral levels being monitored? For example, when was the last time his vitamin B12 and magnesium levels were checked?

All my best to you and your son.

 

[TimsMom]

Hi. Welcome to our forum and thank you for sharing your son's story. My son became ill at the same age as yours, but is not officially diagnosed yet. He also has been too sick/fatigued to attend school and also does home instruction. I really hope your son can get some lasting relief soon. Does he have headaches with his pseudotumor cerebri? I am curious as to how that was diagnosed and if treated. Danny has a constant headache that I think sounds like a slight high-pressure headache. (My older son had CSF pressure issues but is doing fine now.)

Yeah, when he gets an episode of psuedotumor cerebri, he gets bad headaches and eye pressure, will often have a swooshing sound in his ears. It was diagnosed through the special eye test and has been treated with diamox and lumbar punctures. The diamox really does a number on him though by increasing his kidney stones.

 

[TimsMom]

Greetings and welcome!

I'm sorry your son has been through so much

Out of curiosity, is he on any supplements and are his vitamin and mineral levels being monitored? For example, when was the last time his vitamin B12 and magnesium levels were checked?

All my best to you and your son.

The endocrinologist monitors his vitamin and mineral levels. I forgot to put that he does take a supplement for B12 as that is usually low along with Vit. D. Occassionally he has had to take magnesium too.

 

[David]

The endocrinologist monitors his vitamin and mineral levels. I forgot to put that he does take a supplement for B12 as that is usually low along with Vit. D. Occassionally he has had to take magnesium too.

Wonderful. I am so glad to hear they're on top of this

Are his vitamin B12 levels low almost every time he's tested? Do you know what the levels are? I ask because you said "usually low" and we'd want to see them in the "Always ok" or at the very least, "Almost always ok" level. Higher or different forms of supplementation (such as injections) may be warranted if he is indeed "usually low". And those prolonged low levels of B12 could be causing some of his current symptoms INCLUDING being a major contributor to the depression.

 

[TimsMom]

Wonderful. I am so glad to hear they're on top of this

Are his vitamin B12 levels low almost every time he's tested? Do you know what the levels are? I ask because you said "usually low" and we'd want to see them in the "Always ok" or at the very least, "Almost always ok" level. Higher or different forms of supplementation (such as injections) may be warranted if he is indeed "usually low". And those prolonged low levels of B12 could be causing some of his current symptoms INCLUDING being a major contributor to the depression.

In May his B12 was 146. I didn't know that about depression. We are going back to the endo next month, I will ask him to do that test again if he doesn't already plan on doing it.

 

[David]

In May his B12 was 146. I didn't know that about depression. We are going back to the endo next month, I will ask him to do that test again if he doesn't already plan on doing it.

Whoa. Did they give him B12 injections when he printed a 146? They sure as heck should have! Normal values are 200 - 900 pg/mL and in many other countries the lower end is MUCH higher (500 in Japan for example). From our vitamin and mineral deficiencies thread:

Symptoms of Vitamin B12 Deficiency: Premature grey hair, tinnitus [16], subacute combined degeneration of the spinal cord, weakness, tiredness, light-headedness, rapid heartbeat and breathing, pale skin, sore tongue, easy bruising or bleeding, including bleeding gums, stomach upset, weight loss, diarrhea, constipation, tingling or numbness in fingers and toes (peripheral neuropathy), difficulty walking, mood changes or depression, memory loss, disorientation, and dementia.

 

[DustyKat]

David is right Mum, they are very sub therapeutic values.

 

[David]

I'm reading everything you said ever more carefully...

The HTCZ, is he on that for high blood pressure? Or edema? If high blood pressure, has he had his potassium levels checked? Here's what Prednisone does:

Prednisone causes decreased absorption of calcium and phosphorus from the small intestine. It also causes increased losses of calcium, zinc, potassium and vitamin C. With continual use of high doses of prednisone, the result may be bone loss and development of bone disease. Protein needs also are increased for people taking prednisone because it increases protein breakdown in the body.

Potassium deficiency causes elevated blood pressure even at minor levels of deficiency. AND you need magnesium to process potassium and you've said he has been low in that.

 

[TimsMom]

I'm reading everything you said ever more carefully...

The HTCZ, is he on that for high blood pressure? Or edema? If high blood pressure, has he had his potassium levels checked? Here's what Prednisone does:



Potassium deficiency causes elevated blood pressure even at minor levels of deficiency. AND you need magnesium to process potassium and you've said he has been low in that.

No they never gave him shots...I thought that was unusual but the endo said the GI would treat the B12 and even though she has been very good through the years, she did not seemed to concerned about the B12 she just had him take B12 loaded vitamins. As far as the HTCZ, that was prescribed by the nephrologist for his kidney stones...she explained how that worked but I really can't remember it all now. He does have every two week urine and potassium checks since starting.

 

[David]

Good deal. Well, I would certainly demand b12 injections. They're cheap and easy and it should make a large difference in his quality of life. Once they get his serum levels up and liver stores of B12 repleted with shots, then oral supplementation can maybe be discussed again.

 

[TimsMom]

Good deal. Well, I would certainly demand b12 injections. They're cheap and easy and it should make a large difference in his quality of life. Once they get his serum levels up and liver stores of B12 repleted with shots, then oral supplementation can maybe be discussed again.

I think instead of going through the GI I am going to ask his pediatrician about the shots. His pediatrician is a wonderful doctor and is generally willing to try anything I suggest. He trusts me and knows us well. I am so glad he is willing to keep my son on his caseload even though he has turned 18.

 

[David]

Sounds great. Please keep us updated on that

I actually had trouble sleeping last night because I was thinking about all of this. That he is constantly nauseous and vomits all the time bothers me. When he is on TPN does he still feel nauseous? He's on so many drugs I just wonder if the nausea is a side effect.

 

[TimsMom]

Sounds great. Please keep us updated on that

I actually had trouble sleeping last night because I was thinking about all of this. That he is constantly nauseous and vomits all the time bothers me. When he is on TPN does he still feel nauseous? He's on so many drugs I just wonder if the nausea is a side effect.

The doctors have looked at that and he was on even more drugs and they took some away but so far we have not found a med that is doing this to him. It is so frustrating because so many of the things he has can cause the nausea. I can't imagine how awful he must feel all the time. I can't stand nausea, I don't know how he does it actually. He is better on TPN. It could be his gastroparesis, adrenal insufficiency, crohn's, bile gastritis....it is always so hard to know what is causing what. Sometimes I feel guilty because I just get so tired of dealing with this everyday...I think how can a mother feel this way? He is the one suffering, I shouldn't feel this way but it is hard when doctors can't even help. More than once, our pediatrician has been in tears apologizing to us that he can't fix him. He feels so helpless too much of the time.

 

[David]

I'm so sorry if I'm doing more harm than good by bringing all of this up, I can't imagine how emotional this must be for you.

*hugs*

 

[DustyKat]

Oh Mum...:hug:

We know our children are suffering and we hate it, we would give anything to have this disease and not them and that only makes the feelings of guilt, the feelings of blame, the feelings of inadequacy and feelings of helplessness all the more real and overwhelming. It is normal, natural and just to have the feelings you do, it doesn't make it any easier knowing it but it also means you are not alone, count me in when it comes to feeling this way!

You are doing a wonderful job Mum and are a fabulous advocate for your son...:hang:

Maybe have a look at this thread...I call them my black dog days...

http://www.crohnsforum.com/showthread.php?t=22520

Dusty. xxx