View Full Version : confused mom, with 9 year old son


krissy k
01-16-10, 02:49 PM
I've been a member here for awhile, and lurked prior from time to time. I wasn't sure if this should be in this section or the intro new members section. But finally decided to put it here. It's time to make that first post.

Like many of you I have my own story to share.

My son is 9 year old now, and we noticed something was different just after he turned two. He was extremely hyper (literally jumping off furniture) and he never slept and I was at my wits end every night trying to get him to sleep. Before he turned 4 we had him into a psychiatrist to be evaluated for ADHD. We opted for medication and what a shock that was to see such a change right away. He was put on sleep meds and for the first time, things were looking up. But that didn't last very long.

Soon we needed to try other meds, and the clonidine he was put on for sleep needed to have the dose increased. Until we needed to stop it. Unfortunately everything else we tried had no effect or the opposite effect.

The local psychiatrist decided that our son needed someone who specialized with children more and more complicated cases of ADHD. So we changed doctors to one that he recommended. We tried a few different medications we found one that actually worked for the his ADHD. Dextroamphetamine worked the best of all the ones we had tried. But the doctor was like talking to a brick wall, he didn't talk to our son at all, and ignored me when I suggested that I thought there was more than ADHD going on. But we did find something that worked for sleep, zyprexa even though it about broke us trying to afford it, but later had to quit it because of the side effects for facial ticks.

We changed to a wonderful doctor (another psychiatrist) is beyond amazing. She listens to us and talks to our son and asks him questions. If i have concerns I know i can call and talk to her nurse and she will talk to the doctor. When necessary the doctor will call me to talk to me.

In the mean time we have noticed enough symptoms of aspergers with our son to raise red flags. In talking to our schools new principle yesterday as well, she mentioned that she also notices a lot of autism like behaviors with him. She didn't know him until before this year so it's nice to have to make that observation since so many others are use to him being that way and may not notice them with that view. Since that's how he's always been. Very different than his peers. His doctor also talked about bi-polar but his symptoms are year round and not seasonal.

He has a lot of anxiety as well. Which he takes meds for that and it helps some. But he still has a lot of unusual fears. Sometimes he wakes up at night and for a short while while he was off of the anxiety meds. Which is why we put him back on them. Was because he was waking me up at night because he seriously thought his little sister was dead. He could hear his older sister snoring softly but not his youngest. He tried to wake her but she was in such a deep sleep that she wouldn't wake up easily. Many nights I had to wake her up to prove to him that she was ok and that he could go back to sleep.

But in school they have been noticing changes. He can't focus and concentrate. It never has been really good but it's now gotten really bad. He does get support staff in class as needed. He's had an IEP since kindergarten and I can't thank special education enough for going the extra mile for our son. All his work in class is modified to meet his needs. He needs a lot of one-on-one help. He has motor skills problems and has trouble processing information.

He wants to please people and make them happy. He's not a mean child at all. But at home is when I notice more of the negative behaviors. He cries at the drop of a hat. He blows up (total melt down) at anything that he disagrees with. Which makes trying to discipline him because i try to avoid anything that will make him cry or cause a melt down. With two other kids in the house I hate that they need to deal with his behaviors as well. It's been getting worse lately and I'm frazzled as well.

Our youngest daughter is PDD-NOS (autism spectrum) as well so she has her own "quarks" as well call them. Which doesn't help with our son.

Since his med aren't very effective anymore something we had tried several meds since the first part of December without success. His doctor decided yesterday to get a fresh start. Last night i drove him to the hospital to admit him to the peds psych ward. There they will take him off all of his meds and observe him and talk to him and try to figure out what is really going wrong. I have no idea how they will do that but that's there job. We have a family meeting set up for monday so i'll be asking those questions then.

I'm really upset over this, but I guess what upsets me the most is living so far from where he gets his medical care. It's a 3 hours drive (one way) to the hospital so it's not very practical for me to stay down there. And I feel so helpless living so far and being home. And not being able to see him daily. Although i plan on calling and talking to him 3 times a day during "breaks". And driving up every other day I'm thinking...... I know it's for the best but it saddens me that we had to be this drastic. Is this common to do for ADHD? Especially when there is something else going on, but what is the question. Obviously there is something more than just ADHD or else would would have had better success with other medications.

Thanks for letting me talk and rant a little. I just feel lost not knowing what is really going on, and why medications aren't working. His list of medications that he's been on seems like it's a mile long and we have tried just about everything without success.

Does anyone have words of advice or questions i need to ask. It seems like we have been down this road so long, that I don't know what normal is anymore. I'm sure I left out a lot of details....

leapofaith
01-16-10, 04:06 PM
Wow, it sounds like your plate overflowith. Sounds like your are doing anything and everything you know how to also. You've done all the right things so far too. It isn't easy to find a Psychiatrist who fits and has a vested interest in your son and family. Good job! I also have a 9 y/o son who is profoundly effected by his ADHD. Much of what you described sounds familiar, though not all.

I was wondering if the hospital he is in is one his psychiatrist works out of? Continuity of care is paramount in cases like your sons. Too much information gets lost in translation between different doctors.

I was also wondering if there is a possibility for family members and friends to "take over" at home for you. Since your son is so far away maybe you could just stay there with him. There are ALWAYS free accommodations made for parents with minors admitted. Just check with the hospitals patient advocate. They will know how this works there.

It must be agonizing to know he is alone so far away. He would certainly benefit from you being there too. Kids with ADHD are very emotional and have deep uncontrollable fears that they obsess about. If he is anything like my son, this may be an issue.

I would like to hear of any new information you learn about whats going on. We all need each other to get through raising kids like this. It is soooo hard.

Sending you BIG ((((((HUGS)))))))
Hang in there and keep posting, we are here for you!!

krissy k
01-17-10, 06:22 PM
I was wondering if the hospital he is in is one his psychiatrist works out of? Continuity of care is paramount in cases like your sons. Too much information gets lost in translation between different doctors.

Yes the hospital that he is at is where his doctor works. That was one of the positive things when I was checking him in. That I didn't need to sign a release of information since all his info would be in the hospital computer.

I was also wondering if there is a possibility for family members and friends to "take over" at home for you. Since your son is so far away maybe you could just stay there with him. There are ALWAYS free accommodations made for parents with minors admitted. Just check with the hospitals patient advocate. They will know how this works there.

I am more or less a stay at home mom. I am going to ask tomorrow at the family meeting to see if there is somewhere to stay locally. I would have to pull my youngest daughter out of school since she is just 6 in kindergarten. I've already told her teacher that she will be missing a few days this week because I'll be going to visit my son and that isn't a problem. She also taught my son so she is very familiar with him and the issues that we have had in the past.

It must be agonizing to know he is alone so far away. He would certainly benefit from you being there too. Kids with ADHD are very emotional and have deep uncontrollable fears that they obsess about. If he is anything like my son, this may be an issue.

I do feel like i'm abandoning him, but the nurses there seem to be really good. He's underweight so they are making sure all his meals are ones that he really likes and will eat. And they play games with them as well. Yesterday when i called they just got done playing bingo. But then at that time there was just my son and an older boy there, so that makes a difference. But I do call him three times a day. LOL today when I called she mentioned that he's really getting HYPER. That he's also having problems staying focused on tasks as well. LOL We were wondering how soon we would hear that. On the phone i have to remind him to slow down talking so I can understand him. So the plot thickens.

They did do a blood draw this morning. Tomorrow at the family meeting, I plan on asking about what their plan of action is to determine just what is going on. Since there is more than just the ADHD going on. I have no idea how they will figure this out and come up with the right meds in a week though.

I would like to hear of any new information you learn about whats going on. We all need each other to get through raising kids like this. It is soooo hard.

It's not easy at all, and I don't have a good local support group. My parents think it's a discipline issue and while he can get a little wound up, so can other boys. But the few times they have watched him, they do give his meds. Even though they think the answer is to get the kid outside and have him doing things. In other words, just wear him out physically and that will cure everything.

Sending you BIG ((((((HUGS)))))))
Hang in there and keep posting, we are here for you!!

Thanks I'm glad I made that first post and stopped lurking. It's comforting to know that i'm not alone in having to cope with this. But I do think I need to learn better parenting techniques as well and finding out will work better with my son.

fancherml
01-18-10, 01:51 PM
I just wanted you to know that you are NOT ALONE.

~Michele

Dizfriz
01-18-10, 02:01 PM
krissy k

I have seen this done several times with difficult to diagnose cases. It has always worked out with a much better feel for what is going on, and at least in those cases, led to better treatment.

It is rough on the parents though. All of the parents felt much the same feelings of hope and guilt pretty much in equal quantities with some fear of the unknown mixed in.

It can be rough but hang in there. Although difficult and a little scary, it is often be the best way of helping a child.

Good luck and keep us up on what is happening. People here really do care.

Dizfriz

Lunacie
01-18-10, 03:23 PM
I also want to let you know that you're not alone. My daughter and two granddaughters and I all live together (with a dog and a cat). The oldest has been diagnosed with severe ADHD, unfortunately a couple of years later than I could have wished, but it still beats not being diagnosed until she was 57 like her gramma. :rolleyes: She's 12, she takes Concerta, she started middle school this year, and she's doing great now. Big turn around from the start of 5th grade last year.

The youngest one has been diagnosed with PPD-NOS by our family therapist, we've been seeing him once a week for the last 2.5 years. He's been really helpful in suggesting resources for us. One of the best has been the county mental health association. The case manager usually takes our little one out for an hour once a week, just spends time with her, observing and working on helping her learn ways to cope with life. They also provide a couple of after school groups, one is Fit-Rhythm and one is Drumming. These have really helped with her social skills.

Last summer they provided a day-camp 4 morning a week so the transition from school to no-school and then back to school wasn't so rocky. Transitions have always been very difficult for her. They even put together a winter camp at the last moment when they realized our winter break was going to be two whole weeks this year.

Like you, we don't live near a major metropolitan area, so it's been very hard to find someone qualified to diagnose the whole shebang. We thought we found someone last year who works with children with developmental disabilities, but after the initial meeting he pulled up roots and moved away. The other psychologists in our area either don't work with children or have a waiting list of more than 15 months.

We now have an appointment to have her seen in May at KU Med Center in Kansas City, which is almost a 3 hour drive for us. I'm in the process of trading cars so that we'll have something that can hopefully make that trip safely. The initial visit is only for 2-3 hours, so I suspect we'll be making the trip again at least one more time before we have the answers that will help our little one. We're starting now to see if the older girl can spend the night with a friend so she won't be bored - and bugging us.

I hope the doctors evaluating your little guy can provide some answers and some help for him and the whole family as well.

MGDAD
01-18-10, 04:27 PM
You asked on question in Bold. "Is this normal for ADHD kids." No, not for kids that just have ADHD. It is good that they are taking your child off all meds to get a baseline. Then they can assess well, to see if any of the meds are making the behaviors worse.

I too had a child that was very difficult to discipline, because of the fear of the huge meltdowns. She is much better now that I have found a new doctor, and we have found much better meds for her.

Since it is pretty clear there is more than ADHD going on, hopefully, they will try a get the mood dissorder, and/or the anxiety under control, before going back on stimulants.

Good luck with everything.

krissy k
01-19-10, 11:40 AM
Yesterday we had a family meeting with the psychiatrist and a social worker which was really helpful. My husband also has ADHD and it's far from being in control for him. So in talking with the social worker he is going to go back to the doctor and find a med that will work with him. His mood swings are through the roof as well which doesn't help things at home either. He's been on strattera but it did a number on his stomach and he tried adderall but it made him even more moody and hard to live with. So he gave up. But now he realizes he needs to get his ADHD under control because if he doesn't we can't fix the family as a unit. So he's going to keep going back until he finds the right medication or combination for him.

They are going to be looking at bi-polar but also ODD for which I'm glad. But it's pretty much decided that he is also on the autism spectrum. There are just way to many red flags to dismiss it as just him being quarky or something. So that will help us a great deal in finding what methods will work the best with him. He little sister is also ASD (PDD-NOS) so it will be a lot easier to find one method that will work with her as well. Since as much as i hate to admit it, i've been coping minute by minute for the last while so i haven't been using discipline as much as I should have. I would do anything to avoid a conflict or a meltdown just because I was so tired of dealing with it. So getting both of them on a better routine will help a great deal. It's also possible that my hubby might be ASD as well. He has some of the "symptoms" as is also a big toe walker even as an adult. Which was a red flag for doctor as well. Not that he would ever go to have it formally checked out, but it might explain a lot of things about him just for his own knowledge.

But one of the things that surprised the doctor was the fact that he's was on dextroamphetamine 10 mg (two tabs in the am and 1 tab at noon) which should have been out of his system 4+ hours after he took the med. His last dose was on Friday noon (at school) but when they did a UA on sunday morning it was still showing up that it was still in his system. So his body wasn't processing the medication. Which would also explain all the problems we were having with getting him to sleep. LOL This morning when we called to talk to the nurse she told us that last night he went to sleep without problems and even got 9 1/2 hours of sleep. I don't remember the last time he slept that long.

His doctor is unsure what medication to put him on to try because of the way his body processed the dextro. She wonders if other stimulants will have the same result. So it's possible that she might not put him on anything. Personally I would need tranquilizers myself if that happened. I don't think i could personally deal with how the two youngest "play". That would drive me absolutely insane. My daughter thank goodness isn't ADHD or even ADD, but she is very strong willed and refuses to do many things at home if she doesn't want to. (Sadly she gets away with it most of the time because I'm frazzled.) But the two when they play get soooo wound up it drives me crazy and will be even worse if my son is not medicated. They gave a good demo of playing together in the hospital and that was without toys involved.

One of the things that I think we will be doing is getting a wii. We already have a PS2, but at the hospital he is spending his free time playing a lot of games that require physical activity. We live in North Dakota so winters can often be really cold where I would rather he not play out side and we do get rain in the summertimes. Often he gets into trouble when he plays outside unsupervised. So this would be a way for him to burn that excess energy but very limited and controlled not just to play when he feels like it. I got tired of the kids (not so much my son) not listening and only wanting to sit in front of the TV, so in my frustration I threatened if they didn't do what they were told I would cancel the satellite. They ignored my threat so I did follow through. So my husband and i talked and we don't think we are going to return the service. We are going to get that "thing" to watch the local channels though. Then watch movies (DVD's) and we also have netflix and the little box to watch shows on TV through that. We like this better because they are limited on what they watch and they can only watch what we approve. So we plan on getting a better schedule that is very structured by time. If they don't do what they are told they won't earn video games or TV time or computer time for that matter. And hopefully that will help some to have a better routine and discipline. Then later down the line if we feel we want to get the satellite back we can. But for the moment i think we are better off without it.

Sorry if i have been babbling.......

MGDAD
01-19-10, 12:20 PM
Again, as my doctor says. You need to get the mood dissorder under control before trying to get the ADHD under control. If your husband has wide mood swings, he should not be taking stimulants. Same with your child.

Interesting about the way your child processes the amphetamine. I have never heard of someone testing for it like that.

Good luck.