worried about my son and exausted

[carrieandcam]

I am a single mom of an 8 yr. old boy who , after two years of MIS diagnoses, was finally diagnosed at age 5 with Spina Bifida, a lipoma, and tethered spinal cord at the base of his spine. He underwent a "detethering" in 2007.
Before the dignosis and subsequent surgery, my son Cameron simply
could not be "potty-trained". I took him to a pediatric urologist when he was 3 yrs until he was 5 yrs. old. I was repeatedly told that my son was "stubborn" , "just a boy", or that he would "outgrow it".
When my son started Kindergarten his teacher noticed that he "walked funny" and "tripped a lot". I took him to a neurologist. They assured me that he was fine.
His school basically accused me of child abuse because he peed and pooped in his pants all the time.
His own dad ( whom I got rid of ) would literally hold my son on the toilet and demand and yell at him to use the toilet and stop "being a baby".

My son was only diagnosed by "mistake" when I took him to the ER because he was having symptoms of appendicitis. I asked the ER Doctor if while they gave him a CT scan of his appendix, could they please check his bladder because I could not get him "potty-trained". ( he was 5 yrs. old and still wearing diapers)
It was only after that CT scan that the ER Dr. came to me and gave me the devastating news. I didnt understand what the hell he was talking about so I had him write it on a scrap of paper from my purse. He wrote " lypomyelomeningocele with probable tethered cord"
The Dr. said that he was "so sorry".
I raced home with my son and googled those words. I will never forget that day.
Within 2 weeks of that day, my husband, ( Camerons dad ) left us, and 2 weeks after that Cameron had his surgery. The surgery took over 6 hours. The neurosurgeon told me that it was one of the most difficult cases he has ever seen.
Cameron and I stayed in the hospital for 21 days. He had many complications due to spinal fluid leaking from the incision site and severe headaches.
My son suffered terrible pain. It was the worst time of my life.
OK, fast forward to the present....
My son is now 8and 1/2 yrs. old. He is STILL wearing pull-ups. He still cannot stay dry . ever.
He occasionally poops in the toilet, but usually in his pull-up.
He is chronically, severely constipated, despite a daily dose of Mirilax.
He suffers daily leg pain, and occasional severe back pain.
He is getting teased at school by some little ass**** bullies on a daily basis.
Cameron is a great kid, but he can be very stubborn when it comes to "getting changed".
I am a single mom, struggling to keep it together financially, as well as emotionally.
I have to change his sheets and wash his blankets almost dailt due to him "leaking" out of his nighttime pull-up. I have tried all brands. and yes, he pees in the toilet right before bed. ( I was told that he has a "large capacity bladder??)
I work full-time and my boss is not very understanding when I have to take time off to either take care of Cameron, or take him to his many Dr. appts.

Honestly, I am exhausted and I feel like NONE of his Doctors have ANY answers or solutions for me.
Is there ANY way that Cameron could possibly wear underwear? What about catheterizing? Would that be extremely painful??
What about "ditropan"?

Cameron has a pediatric Neurologist, Urologist, and Orthopedist.
I just took Cameron to the hospital on, 1/12/09, for a brain and spine MRI. I pretty much demanded it, due to Camerons increasing leg and back pain. I will get the results in 2 weeks.

I am so worried all the time.
Thanks for listening.
Carrie[/B][/B]

[smoop]

Carrie,
I'm so sorry to hear of all the heartache you've been through and are still facing.

My daughter, Analise, is 3.5 years old. She was diagnosed via ultrasound for myelomenigocele, Chairi, Hydrocephalus. She does have a neurogenic bowel & bladder. Currently she takes ditropan 2x/daily and is cathed 5-6x/day. To be honest, her urodynamics have always looked pretty good-- relatively speaking. Once we started cathing she has stayed pretty much completely dry between. She goes all night without being cathed and still staying dry (about 12 hours)- thanks to the ditropan. As far as bowels, we do a capful of Miralax daily along with 2 tsp of Benefiber and probiotics. Two times a day we do a Magic Bullet suppository (1/2 each time- after lunch & dinner). This has been working pretty well for us. She went an entire week with only one BM accident.

Obviously every child is different.. this works pretty well for us.

[angel]

Your son sounds so much like mine althought my son was diagnosed at birth with Spina Bifida Occulta. The reason they found it was because they were looking for ANY possibility of SB anywhere. I have SB myleo level L4/L5. Had he not been diagnosed at birth a lot of my story would be the same as yours. He was almost IMPOSSIBLE to potty train. It is called a neurogenic bladder and let me tell ya they have a mind of their own most of the time. There are ways to deal with it many different ways. The constipation problem my son has a very very severe case of. he takes mirilax daily and has for 4 years. It don't work on it's own. He uses a cone enema every other day the two together work pretty good most of the time but he still gets impacted a lot.
If i didn't know what was going on with him i can see where a lot of his probelms could have easily been blamed on something else. He also had his tethered cord that was fixed right after he turned 2 years old.
My advice to you is take it as it comes. By that i mean read what you can find out what you can educate yourself. Talk to us ask any question you want to. Ask your doctors all the questions you can think of. If they don't have time for you then it is time to find another doctor! I know it sounds like i am being simplistic when i say take it as it comes. I raised my son alone for 8 years. I know all about how it feels to be you to a point. I knew what SB was hell i have lived it. But his symptoms were not exactly like mine and i was blindsided by how much harder it is to watch your child go through these things. It is a MILLION times harder than it is to go through them yourself. BELIEVE ME I KNOW!!! I remember the sleepless nights wondering just what the :connie_mini_lalalal i was going to do. How we would get through this together. Wondering how the hell my mother survived because i was the youngest of 3 she had to raise alone and i had myleo so there were A LOT more doctor's appointments, in my early years, proceedures you name it.
You are not alone I am sure other mothers have been in the same place as well. We are here if you need us so feel free to jump in.

Angel

[LisaJoy]

Carrie,

I'm so sorry for what you & Cam have been through. Your story is just heart wrenching. I have the same type of sb, but my incontinence problems were not as severe as your son. I'm 44; had my first surgery in 1966 and didn't have another until 12/31/97.

First of all, Angel is an awesome resource for you -- she has walked that road. I want to second her advice. You need to educate yourself as much as possible, especially about neurogenic bladder and bowel.

Do you mind sharing what part of NC you are in? Do you take him to Duke? If you are in the southern or western part of the state, you need to be aware that there is a Shriners hospital in Greenville, SC, and you might want to investigate it.

You need to make sure that the urologist is experienced with neurogenic bladder and bowel. There are LOTS of options, but you need to find someone who will work with you to find what works best for your son. I catheterize and find it neither difficult nor painful, but then I'm a girl. Some of the guys might be able to help you there. I'm willing to bet that the discomfort of catheterizing would be a lot less than getting bullied for the incontinence. Ditropan has been a godsend for many of us, but it doesn't work for everyone. However, there are other options in terms of medication, both oral and injected. As far as bowel control, there are several threads on this site that talk about it -- check out the "children" section. There are several approaches to establishing bowel control and, from the experience of people on this site, it is a matter of trial and error to find the right one.

I can tell that you are overwhelmed right now, but you will get through this. Please take heart; I assure you that there are lots of options for your son.

[carrieandcam]

Thank you so much for your support. You all are really helping me with all of your ideas and experiences.
Thanks again,
Carrie

[Dodger67]

Hi Carrie
Just want to welcome you and Cam here:happy065:
I'm not going to bore you with my history - I've posted it many times all over this forum.
I'm wondering why the detethering was such a huge experience? 21 days in hospital is almost unheard of! Of course we can never know for how long Cam was suffering the consequences of an undiagnosed tethered chord.
I suppose the tethering actually gets progressively tighter and harder to undo, the longer it is left untreated.
I have never had tethered chord (yet!). When I asked my parents about it, they didn't even know what it is!

[Sheena51985]

Hi Carrie! Welcome to our little online home! I'm Sheena, 23 years old, born with SB, Myelomeningocele (level L-5 i think), and Hydrocephalus. As for the bladder and bowel problems, although I do have issues with those things, mine dont seem nearly as complicated as your son's. I have an artificial urinary sphincter and I catheterize every 3 hours. Recently, the sphincter stopped working, so if I don't stay on top of the cathing every 3 hours, I leak, of course. But other than that and occasionally at night, I generally stay dry most of the time. As for the bowel issues, I'm unable to go on my own on a regular basis. I drink prune juice 3 times a week and, unless I get the flu or something, I don't have accidents.
First off, I'd liek to say..wow!! your story is amazing. don't lose hope..stay strong and as the others have said, educate yourself as much as you can..you WILL find the answers you're looking for..it just may not be today or tomorrow..

secondly, where in NC are you? I'm originally from Monroe, NC and I had some awesome doctors..I'm sure most of them are retired by now, as I'm 23 years old, but I wish you could have had them for your son.

Have you ever been to Shriners Hospitals? I've been to the one in Greenville, SC and it's AMAZING!! the atmosphere, the doctors, and just the entire place in general is an awesome experience. You should look into it. I HIGHLY recommend it!! Good luck with everything and remember, we're always here if you need us!!

~Sheena

[dahliafaolan]

Hi Carrie!

My name is Ashley and I'm 23 with lipomyelomeningocele at T-12, I believe. I am sorry to hear all the difficulties you've been having in regards with your son. Please, hang in there! As most of us will tell you, Spina Bifida is at its most difficult when the child is small. As we grow older, most of the problems seem to level off.

As to your son's incontinence problems, I can think of several solutions. For the bladder incontinence, I would definitely suggest catheterizing. It might be uncomfortable the first few times, but believe me, you get used to it. Before long, it becomes normal. And I would definitely suggest Ditropan to anyone. I've been on the medicine since I was old enough to talk and tell them where the pain was. Does your son ever describe the pain he feels in his legs? I complained of pain in my right foot for years (even though I'm paralyzed from waist down) and it took them quite a long time to figure out that the pains were stemming from bladder spasms.

As to your son's bowel incontinence, there are a few options that might help. There's always the medicinal and enema methods. I myself am not a fan of those methods. I always remember them being annoying and not very effective, but that was my case, not your son's. Every case is different. What I found that worked for me was a cecostomy. A cecostomy is where they insert a tube into the top part of the colon, called the cecum. This tube is connected to what my family calls a button that stays on the outside of the body. The button looks rather like the thing that's used for feeding tubes. Anyway, the button is used by opening up the flap on it and inserting a very thin tube into the opening that the flap covered. A catheter tip syringe is then loaded with water and that water is flushed through the intestines out through the rectum. It's basically just an enema coming from the top instead of through the bottom. With that, your son might be able to wear underwear one day. If not, as he gets older, the diapers that they make for adults nowadays are almost exactly like underwear.

And Dodger, it can happen, especially when spinal fluid leaks are involved. After my second to last rod surgery, I had a CSF leak as well. It took months for it to get fixed. It took an 11 hour reconstructive surgery to fix it and then six months for the wound left over to heal.

Carrie, if you ever need any help, you can always find it here.

[carrieandcam]

Thank You for your advice.... I have heard of the different "surgical" solutions for Cameron, but I guess I have been waiting to see if there would be any other way, w/out surgery. I am calling the Urologist about the Ditropan tomorrow, however I am leary about the constipation side effects, as Cameron struggles so much to poop.
I have a question.
If Cameron takes Ditropan, will he just stop wearing pull-ups and wear underpants? It is that easy? Or is there some kind of "program" that he has to be on? He does NOT catheterize.
Can the Ditropan work with out cathetering?
Thanks to everyone, you all are so nice!
Carrie

[carrieandcam]

Hi Rodger,
Thanks for your advice. I know 21 days in the hospital for the dethethering was WAY longer than the Dr. expected. He told me 4-5 days..... What happened was that, well, first of all, after the 6 hour surgery, the Neurosurgeon came out and told me that Camerons Lipoma and tethered cord was one of the "worst cases he has ever seen".
From that point on , it was a nightmare.
The very first day, a dumba** incompetent nurse was turning Cameron over and she literally dropped him flat on his back. He had 39 stitches and a tube that ran inside his back to supply direct pain medication. Well, when she dropped him, the medicine IV pulled completely out of his back. Since it was placed inside his back during surgery, they couldn't "put it back in".
Then, to try to control his excruciating pain, they gave him too much morphine that it almost killed him.
I remember that Cameron would scream so loudly in pain that people from the halls of the hospital would look in and ask me if everything was alright.
The second day was when the spinal fluid started leaking. right out of his incision.
not just leaking but DRIPPING, running down his back. On the third day they tried to sit him up. He got such a bad migrane ( from the csf ) that he passed out.
He had to lay completely flat for 5 days.
Just when the leaking appeared to have stopped, as soon as Cameron would sit up, it would leak again. And he would get a migrane again. and he would have to lay flat again.
I dont know if you have kids, but having a 5 yr.old boy lay flat for days and days was like torture for him.

Then the Dr. decided he would "superglue" the incision over the stitches...
Cameron STILL leaked through that too.
Well on day 18, the Dr. told me that he had to "go back in" to find the leak. But that it would be very risky and he didnt even know how he would repair the leak, because as he described it " Camerons lipoma and Dura is like sewing through butter" The Dr, told me that Camerons "dura" was incomplete"..... He was VERY worried about the outcome of "going back in"...
OK, I will preface this next part by telling you that although I am Catholic, I am a lazy Catholic. I Have always believed in God, went to church occasionally, and said prayers pretty much only when I was very desperate. I only half-heartedly believed in "miracles".

The Dr. had Cameron scheduled for another surgery the next morning at 8:00am.
I had checked his bandage right before he went to sleep at about 10:00pm the night before. It was soaking wet, and I could visibly see spinal fluid dripping down his back.
I told everyone who was there ( family members, nurses) to leave the room so I could be alone with Cameron.
I was more scared than I have ever been in my life. I took out my Rosary Beads ( which I never used before), and I layed next to Cameron and I prayed. I prayed harder than I have ever prayed. I prayed all night long. I asked God to , actually, I BEGGED God to please stop the leaking, and to heal Camerons back. I cried, prayed and begged all night long.
Well, I woke up at 5:00 am. The first thing I did every morning was change his dressing.
I took the old dressing off. I looked at it and it looked dry. I felt it and it felt dry. I ran over to the bright light over the bathroom sink and examined the dressing for ANY signs of wetness. I looked at Camerons back/inciscion site , and where it was always wet or damp, it was completely dry.
I immediately called the Neurosurgeon who was supposed to "go back in" at 8:00am. He arrived at 6:30 am.
He could not believe it. He even called in like 3 more of his collegues to look at it. He told me that there was "no medical explanation" as to why that dried up and stopped leaking after 20 consecutive days of leaking.
I never told him of my little "prayer vigil". It was actually a long time before I told anyone. I thought they would think I was wierd or imagining things.....
But the honest truth , is that God actually heard my prayer, and He answered it for me and my son.
Thats the only explanation.
It was that very day that Cameron was supposed to have the "second" surgery that he got out of bed and walked for the first time since his surgery. He was able to sit up, and walk for 2 more days with no headaches, no leaking from his incision.
I took my son home after 21 days of a lot of pain and suffering.
Well, I hope that explains how our hospital stay was so long.... You are right , that is rare to be in the hospital that many days.
I guess I just have a "rare" kid! :) I Love him so much!!

[dahliafaolan]

Thank You for your advice.... I have heard of the different "surgical" solutions for Cameron, but I guess I have been waiting to see if there would be any other way, w/out surgery. I am calling the Urologist about the Ditropan tomorrow, however I am leary about the constipation side effects, as Cameron struggles so much to poop.
I have a question.
If Cameron takes Ditropan, will he just stop wearing pull-ups and wear underpants? It is that easy? Or is there some kind of "program" that he has to be on? He does NOT catheterize.
Can the Ditropan work with out cathetering?
Thanks to everyone, you all are so nice!
Carrie
Well, you can also try dietary methods of controlling the constipation. Bit of advice: LOTS of fiber. I used to have severe constipation myself till my mom figured out that my body really cannot process fiber too well. Anything more than a handful of nuts or more than two fruits and I'm on the potty for hours. It's been annoying over the years, but it's easier on my body than the laxatives. My suggestion is to make the fiber part of a daily activity somehow. With my family, my father and I were big movie buffs. So every night, he would make a bag of popcorn and we would sit down to watch a movie together. For years I thought it was just a Daddy/daughter bonding experience. Then one day as I got close to adulthood, I realized that while the movie watching might have been part of our bonding experience, the popcorn was my Daddy's way of making sure I had my fiber for the day. So you might want to work in such a thing into your daily lives.

As for the Ditropan, every case is different. If your son can empty his bladder completely, the Ditropan should probably be enough to stop the leaking. However, if he does not empty completely, you might be looking at catheterizing your son. Has he undergone any urodynamic studies yet? If not, you might want to consult his urologist about receiving one.

[LisaJoy]

Dodger -- tethered cord surgeries associated with lipomyelomeningocele can get extremely complicated depending on how large the lipoma is and how deeply the nerves are entwined in the lipoma. I don't know how long my surgery was back in 1966, but my two adult surgeries lasted in excess of 6 hours. The last one was an "intradural" procedure and I was in acute care for 7 days and in-patient rehab for 7 days. It was also extremely painful. Younger kids usually bounce back faster, but with a csf leak and an extremely complicated lesion like Cam's, all bets are off. I was lucky not to experience a leak, although I did get a touch of pneumonia immediately post-op.

Carrie,

Your story is certainly amazing. I'm a firm believer in the power of prayer, myself, although I know we have several skeptics or agnostics who participate on this site. (Be nice, everyone!)

I'm sure Ditropan can be used without catheterization, but please don't be too worried about cathing. It really is no big deal and can make for HUGE improvements in quality of life (although it will probably seem like a big deal to him and may take some time). You are right that Ditropan can make constipation worse, but there are other options they can try. And it might not make it any worse than it already is. My constipation problem was not made any worse by the Ditropan (I'm on a low dose, 10mg, of the extended release -- I don't know how dosing works for kids).

Hang in there! We are pulling for you (and some of us are praying for you :)).

Lisa

[Monique]

Peridiem works pretty well for constipation, but it is a small pill & I know some kiddos don't do well swallowing pills. If your son likes apples, those sometimes help with constipation, as well as raisins and prunes. Bananas can cause constipation, so only those in moderation.

[Gymp]

Hi Carrie,
I've just read through this whole thread,you've been through a lot.What You and Cam have been through couldn't have been easy to say the least I just wanted to add that self catheterization for a guy is relatively easy to do and it isn't painful at all,it just feels a little weird the first few times.I used to do it when I was a young teen.Cam could master it at 8 years old with no problem I would think.

& I'll be saying a prayer for you and Cam as well.
Gymp

[Sheena51985]

Hi again Carrie. I just wanted to add to the constipation issue. I used to have enemas 3 times a week when I was younger. That worked, but it reguired my parents help. As I got older, I needed my independence, so out went the enemas and we tried EVERYTHING...suppositories, laxatives, etc..nothing worked like the enemas did..finally, one day, my mom was drinking something and she made a nasty face like it tasted gross. So i asked what it was. She was drinking prune juice because she also has somewhat of an issue haveing a bowel movement on her own. not because of a disability, but just because she has a strange stomach that likes to do what it wants, when it wants lol. Anyways, so she told me how well it worked on her and that maybe I should try it. So, I did just that. Here we are I dunno how many years later (at least 7 years ago), and it's still working for me! I do it 3 times a week, same days every week to stay on a schedule and it gives me my independence and it'd do much better than the enemas, laxatives, etc. The only downfall is that it tastes horrible. But, I guzzle the entire glass of it and then I guzzle another glass of juice or something else that washes away the taste and all is well!! Just a thought! Not sure if it could work on your son, but it might be worth a shot!! Good luck!!

~Sheena

[Ashsmom]

I was reading what Cams mom had written about being alone, exhausted, and I feel like I am battling with everyone. Ashton was diagnosed at birth, had surgery at 4 months and has done remarkably well since then. His father and I divorced not too long after the surgery and we cannot agree on anything when it comes to our son....anyway...recently the little one has been regressing. He was pretty much potty trained before he started kindergarten. Actually that was more of scheduling. His teacher (and school) have been aware of the situation and thought a 504 plan would not be necessary due to the size of the school...very small!! Recently he has been complaining of pain in his back and leg, lots of belly aches and his left leg seems to give out sometimes. He has always had some sensory deprivation issues with his feet so that is nothihng new. We have been to his regular pediatrician alot lately about the bellyaches and the fact that Ash is either constipated or has diarrhea, there is no happy medium. He has been having "accidents" at school everyday and the teacher won't change his clothes or, even call me to do it!!! Today he walked around in sh***y pants all day!! Kids are starting to pick on him and the teacher does nothing to help the situation...UUUGGGHHH!!!
I have a feeling he may need another surgery soon. I am by no means a DR but, it seems as though he has all the signs of retethering or, perhaps I am being paranoid (as his father says).
I guess through all this venting, what I am really trying to get at is....I can't seem to get his Dr to understand my concern...I think he needs another MRI so I should just demand it be done...right??? HELP...please

[Barb]

I would def. get him in. There can be many causes but anything out of his ordinary should be looked at. I am sorry that you two are going through all of this. If it is constipation, you might want to look into a cecostomy or a MACE which will help him stay bowel continent throughout the day.

[Dodger67]

I agree that he needs an MRI to check for tethering. Changes like you describe don't just happen for no reason.

Have you considered Mace or Cecostomy for his bowel? What is his current bowel management program?

[LisaJoy]

Ashsmom - anyone telling you you're being paranoid is just plain crazy. You are right -- a change in bowel continence is absolutely a neurological sign to be concerned about. He needs an MRI.

By the way, I have a nephew named Ashton! He'll be 4 in May.

[angel]

GET THE MRI!!! My son was 2 years old and his bowels just stopped working. He almost died because it had become so severe with him and everyone was looking for a gastrointestinal problem. His cord was tethered. We found that out only because it was time for his yearly MRI. His neuro did one on him every year because we knew the cord was tethered but it wasn't causing any problems. His doctor liked to check yearly to catch it early if it did become a problem. I never would have thought to put bowel problems with spinal cord. I was told to look for decreesed movement as a sign his cord was an issue. That was not the way it worked with him. His bowels were severly affected. It never hurts just to rule it out!!

Angel

[Ashsmom]

I "spoke" with his Dr. this morning and things are finally going the way they need to. His MRI should be scheduled very soon. He hasn't had one for a couple of years. He continually has xrays done to check his bone development. We recently went to a neurologist who seemed to think his bowel and bladder issues were due to the fact of him being lazy or too involved in something else to get up and go. I never totally agreed with that. The surgeon told us from the beginning he would more than likely have bowel/bladder issues simply due to where the lipoma was. The neurologist did talk about different medications to help with those issues but thought it wasn't necessary and maybe at the time she was right. BUt, things have gotten worse and now he complains of pain in his back or left leg and, anyone can see from time to time how his leg will just give out on him. Like I said, things are going in the right direction and after his appt. tomorrow I will let you all know more. Thank you so much for the advice!!

[LisaJoy]

It sure doesn't sound like his neurologist is very knowledgeable about tethered cord syndrome! You are right to be hypervigilant -- tethered cord is insidious and particularly a problem in a growing child.

Do you have access to good SB related care in West Virginia?