New here with new diagnosis and medical issues

[OneSweetWorld]

Hello all

I am new to this board and really glad I found this site. I hope someone can help me understand all of this as it is new to me. I was not sure where to post this, so please direct me to the right forum for the future if you can. Thanks

First off my name is Christine, I have two children, Hannah 8 and Jakob that will be 7 next month and we live in MA. I am here cause of my Jakers.

Give a little background on Jake without writing a book. My son has alot of chronic GI issues going on. He had a surgery done three years ago that caused major damage to his stomach, and now is solely feed thru a J-tube ( a tube that bypasses the stomach and goes directly into the small intestine) Due to weight issues, we had him put in the hospital in July of 06, we worked real hard on getting his tube feeds up, and within 24 hours, Jake was puking 24/7...needless to say, here we are 17 months later and his medical issues just grew. He was later diagnosis with Cyclic Vomiting Syndrome...for the last 17 months, he has bee in and out of the hospital, at least 50 times due to the CVS. He has a central line for quick IV access, which has helped, but he vomiting gets so bad he needs to be sedated and pumped with fluids.

During this time, Jake's behavior issues were getting worse. We were doing time outs and such in the hospital, even had his doctors, GI and neuro often speak with him on how he was acting, but things only got worse. We chalked alot of this up to being in and out of the hospital so much, but finally in Sept we took him for outside of the school that is, Neuro psychiatric testing. We are in the process of getting the core testing done at school now.

We were dealing with issues of chronic temper tantrums that will last for hours, he would often do things to hurt his sister such as taking the TV remote control and bashing her on the back of the head with it for no reason, and admit he could not help it. He would have massive melt downs if I say no, so we avoid taking him to public places. He interrupts when I am talking, even though he knows not to, he destroys his sister's stuff on purpose cause he is mad. My child is like an engine, he gets off the bus at 3pm and does not stop moving until I give him his night medications that literally make him sleep...the problem is at school he is a whole different kid. They can not pry a word out of him. He often goes to the nurse or the bathroom when he is board..and let him go due to his medical issues. He is behind in school, and they are working with him, but he is not making progress like they were hoping. He did go to half day kindergarten last year and missed most of it...so this is his first year having full day school.

Due to his medical issues he is able to get extra help after school, which we are currently working on to get going.

As for the testing, he was diagnosis with ADHD, Anxitey disorder and ODD. We have a neuro who is waiting for the full report before we start looking at medications with him. I wanted to do the Fine Gold Diet, but due to the fact that most of his food comes from a medical formula, this is not an option. I would love to do more natural ways vs medications, but to be honest I am not against medications at this point, if I know they can really help.

Does anyone else have a child that causes no problems at school, but comes home and turns into a whole different child? How do I get him to do one page of homework without a fight? How do I get him to stop running around the house and jumping on the couch and beds for hours at end?

I know our situation is different due to his GI issues, but I need some help, advice on what to do next.

We do have a neuro that knows Jake very well, so again he is just waiting on the report to be sent to him before we try medications.

Any help or information would be appreciated

Thanks
Christine

 

[nvts]

Oh Christine, you have your hands full! I'm glad you found us and I'm sure many can help.

Unfortunately, difficult child 1, 2 & 3 are a hand full every minute of every day! I have seen many of the parents on here though describe the same things that you are experiencing.

Take a look at the book "The Explosive Child" by Ross Greene. He gives a lot of insight as to how our kids see things as opposed to how we do. The best part is that it isn't a whole bunch of lingo, it's written so that the everyday person can enjoy it. Even if you don't choose to use his methods, at least you have an idea as to what's going on in his head.

Sorry I couldn't be much help, but there'll be plenty more coming a long!

Welcome!

Beth

 

[I'm going crazy!!!]

Hang in there I'm sure there will be lots more people coming along soon in the meantime my prayers are with ya'll

 

[Hound dog]

Welcome to the Board! :flower:

You want an IEP at school to deal with his dxes as well as his GI issues. If you haven't done so, request one asap. There is lots of info on this and more over in the Special Education forum.

Odds are that your son is saving the bulk of his behavior for the home front because he feels safe there. He doesn't know how the school would react to the same behaviors. Which probably explains the refusing to speak, going to the bathroom to avoid work ect.

Beth recommended a book used by many parents here, they've found it very helpful.

Both my difficult children saved the bulk of behaviors for home. Nichole didn't really begin to act out in school until high school. It's not uncommon. (unfortunately for us)

You certainly have your hands full, and I'm sure his GI issues don't help things.

I'm glad you found us.

(((hugs)))

:santa:

 

[Big Bad Kitty]

Hello there! Welcome to the board. You found a very safe place to land. I am sorry that you had to seek us out, but am very glad that you found us.

My daughter, who will be 7 this week, is an absolute angel at school, but walks in the door at home a different person. I have had 3 meetings at her school to get her an IEP, but they won't give her one because she has no issues there. Nobody can believe what I tell them about her behavior at home.

You are DEFINITELY not alone.

On one hand, it stinks that she saves the worst of her behavior for me. But on the other hand, I read here every day about someone getting notes and phone calls from the school, "come pick up your child. he hit/bit/yelled/swore/etc." I'd rather she does it at home.

You will find a lot of good advice and wisdom here. May I suggest the book "The Explosive Child" by Ross Greene? Excellent read. Lots of great advice for reprimanding a difficult child.

So sorry that you have the GI issues to deal with on top of it! Again, welcome.

 

[BusynMember]

I wonder how much just not feeling good could be a part of this.
For behavior issues, though, I'd give him a neuropsychologist evaluation. ADHD/ODD often is something else--has a lot of mimickers. NeuroPsychs are the best evaluators in my opinion. They are very intensive. It could be that he needs interventions rather than medications. Maybe medications would make his stomach worse--many do--and that may not be what he needs anyways.
Others will come along. Welcome to the board and sorry you have to be here.

 

[smallworld]

Christin, welcome!

I'm somewhat familiar with the issues you're dealing with because my father is a gastroenterologist and my daughters suffered with GI issues until we got them stabilized on mood medications (which I know is NOT your case -- I have a strong suspicion your son's behavior issues are exacerbated by his medical issues, and when you get the medical issues straightened out, the behavior issues will improve).

Sorry for all the questions, but your answers will help me point you in the right direction. Is your son on any medications for his GI issues? Has he been diagnosed with gastroparesis? What is the neuro recommending for his CVS? Has he had a neuro workup including MRI and EEG?

I've read that CVS is tied to migraines. Some of the migraine preventives (such as amitriptyline) actually treat anxiety so you may have a win-win situation using certain medications. Furthermore, anxiety often presents with ADHD-like symptoms so it may be wise not to treat ADHD first. The stimulants that treat ADHD frequently exacerbate pre-exisiting anxiety.

Again, welcome.

 

[OneSweetWorld]

Hello and thank you all for your comments

Jake had the neuro testing done, that is where the ADHD and ODD diagnosis came from.

As for his GI issues, he is diagnosis with nerve damage to his stomach and small intestine, he is currently not on any GI medications due to Zelnorm being off the market now...nothing else had worked except proplusid, but was taken off that when the CVS started, right now since is not vomiting all the time, we may have a chance to go back into the protocall program.

He has had an EEG done, that showed abnormal, no sezuires, but spikes thru out the whole test. They than repeated when he was in a cycle and that EEG was normal. He has been treated with every preventive medication for CVS, is now is on Topamax....he has been on Amitrip to depakote to propanal...while the cycles are now 4-6 weeks apart vs every two weeks, it is still runs his life.

He is battling weight issues, that we are going to address next week. He is 45 inches tall and weights 37lbs...we too have tried everything for weight, with no luck.

I do not know if medications are the answers or not, but I do not know what else to do.

I have my meeting tomorrow..he has a 504 in place now, but it is based on his medical stuff, until I get the final report for the Neuro testing, we can not move forward with that.

Thanks again for everyone's input.

 

[Marguerite]

Christine, in your first post you said, "Does anyone else have a child that causes no problems at school, but comes home and turns into a whole different child?"

Oh yes. It's surprisingly common. Also the homework battles. Is there any reason for not home-schooling? One HUGE advantage of that, was no homework. Or, ALL homework. But it all gets done during school hours. And feeling sick is no way out, because I get difficult child 3 to work in bed, if necessary. The only way out is if he is so sick he just wants to sleep. Then I let him sleep, because for him to sleep in the daytime, he must be genuinely sick. Goldbricking (aka "plumbopendulitis" or "swinging the lead") does not get him out of schoolwork. We're now beginning to move from "schoolwork during school hours" to outcome-based, by using a reward system - if he gets two units of work done COMPLETELY within one school day (he may continue working on it outside school hours if he wishes) then he gets a reward, which he and I have both agreed on in advance.

We stopped punishing. It wasn't working. Instead, natural consequences. And reward. Works for us. So does "Explosive Child".

If you're concerned that home schooling is not going to be good for him socially - he needn't miss out socially simply because he's home-schooled. If he finishes all his work by the end of the school day he will be free to have a friend over to play, or to go to an after-school activity, or go visit someone - with no homework to worry about. Very freeing.

difficult child 3 is autistic, which meant educational authorities were VERY resistant to us pulling him out of mainstream - concerns mostly that he would miss out on social contact. What has happened - he's now doing much better socially and a lot of the really nasty social habits, such as hitting other kids, losing his temper and lashing out, shouting at adults - rapidly disappearing. Many of these already gone. Because his work is getting done, he's in charge of his own intellectual stimulation, he doesn't get to play on his ill-health with school staff, he can freely mix with other kids when the work is done, HE gets to control his interactions much more effectively and hence feels far less anxious.

If your son is ADHD and on medications, he will work much better if he is given the work while medications are 'on board'. Too often though, we try to get our ADHD kids to do homework when the medications have worn off. No wonder they have trouble! And they've been trying to hold things together at school all day, they more than most kids need to kick up their heels at the end of the school day and not have to do even more work, especially if now they find it much harder to concentrate.

I hope you can get some more answers. There are so many factors here, including the functional overlay resulting from his physical health problems for so long. It's not easy. For you or for him.

Let us know how you get on.

Marg

 

[Sara PA]

He has had an EEG done, that showed abnormal, no sezuires, but spikes thru out the whole test. They than repeated when he was in a cycle and that EEG was normal. He has been treated with every preventive medication for CVS, is now is on Topamax....he has been on Amitrip to depakote to propanal...while the cycles are now 4-6 weeks apart vs every two weeks, it is still runs his life.

My EEG was pretty much the same as your son's first one but I was having tonic-clonic (grand mal) seizures as well as unidentified partial seizures. My son has partial seizures but his EEGs was "fine" according to the psychiatrist who was treating him at the time. (I never did get a report on what "fine" meant. We fired her shortly after that.)

EEGs can rule in but not rule out seizure activity. Partial seizure activity can cause behavioral problems especially when that activity is located in the temporal or frontal lobes. The temporal lobes are deep within the brain and very hard to get a good reading on. It is estimated that only about 50% of TLE is detected by EEGs; one has to wonder how much higher that would be if people were more knowledgeable about what behaviors partial seizure activity can cause.

My own partial seizures included what I described as explosive colitis. Partial seizures can affect the controlling mechanism of the digestive system just like they affect everything the brain controls.

Many drugs used to treat other diagnoses can lower the seizure threshold. Among those drugs are antidepressants which includes Amitriptyline.

If he's underweight, Topomax may be problematic considering it causes weight loss. I understand Lamictal is almost as good for partial seizures and is more neutral for weight. Have you tried that? And the Depakote....was he on just that or was he taking medications that could lower the seizure threshold when he tried that? Depakote could help him gain weight.

ETA: Is he taking medications for the ADHD?