Help I need help with my 3 year old!!!

karif

crazymomof4
As far as reimbursement goes, our insurance company won't do that. Very frustrating. This is the second day on Respridol, he seems happier. STill crazy busy and a little less aggressive but happier. He is eating alot wich is great because he never has eaten very much. Eating with him is always a battle now I can't get him to stop eating. Has anyone had problems with excessive weight gain?:D
 

smallworld

Moderator
Like most atypical antipsychotics, Risperdal causes increased appetite and weight gain (listed as a side effect in the package insert). My son gained 12 pounds in a month on Risperdal.
 

totoro

Mom? What's a difficult child?
Hi Karif I just wanted to tell you to hang in there! I know how hard this road is! Some days are much harder than others.
For us in the beginning the best thing was our Occupational Therapist (OT). She was the first therapist who our pediatrician could get us into. We started with a Sensory Integration Disorder (SID) diagnosis and had therapy once a week. The Occupational Therapist (OT) was the first person who worked with us and K. She saw that she was way in over her head! But it was a start and it was documented. We learned a lot from her as far as treatment for any sensory issues.
She knew there was more going on and pushed us to get more testing and more evaluation's.
Things move slowly in our worlds. It feels even more so when our kids are struggling and hurting. I have only bee on this journey with K for 2.5 years, I knew something was going on since she was 2 though.
But I feel like I have been doing this forever.
I look at those on the board who have adult G'SFG and am in awe.
Pace yourself and hang in there. Since coming here I have really learned that if something isn't working for my kid, change it. Whether that is my reactions/actions or my child's healthcare team, school, almost any situation can be altered.
 

Marguerite

Active Member
I"m coming late to this thread. I tend to not post much here because my kids are now all so much older and this thread seemed to be getting plenty of response - but I just want to say, karif - you sound like a really great mother, you are working so incredibly hard for this little boy and you seem to feel that there is something there in him that is needing this help, to be able to find a way out and show the world that he really is a good kid inside.

He's been through the wars, it seems. So have you. Right now, while you're trying to get a handle on what is wrong as well as trying to find ways to help him, this is perhaps the worst time of all, I feel. It's the time you feel most alone, most bewildered, most frustrated - once you begin to get a sense of direction and of something that seems to be working, I think it does begin to get a little easier.

It is very difficult to get experts to give you confirmed labels at 3. Mind you, we succeeded. Also, labels often get changed as the child gets older - other signs or symptoms become more apparent later on, understanding changes - although generally this is only medical science trying to get a handle, the child is still the same person with the same difficulties.

Something else to consider - whatever gets diagnosed, there can often be other conditions with it. Or if not, if your child is diagnosed with a syndrome (I see Pervasive Developmental Disorder (PDD) is listed) then you can find a range of problems all under that umbrella, a lot of problems with themselves can also have their own labels. You can end up feeling like you're drowning in alphabet soup! Also, because there is generally no such thing as a magic bullet, a one-pill-heals-all treatment, there can be many different ways to treat a condition. And maybe different times as well. For example, we've had difficult child 3 on medications since he was 3. We've also had him in various different therapies - occupational therapy, speech therapy, psychological counselling, cognitive behaviour therapy, remedial educational assistance, early intervention - we do what we can, when it seems appropriate.

We have had experience with risperdal, we've also had experience with stimulants. We have not had experience with Abilify.

With our two boys, both took risperdal. The older one found even a tiny dose (quarter of the smallest tablet) sedated him and also made him hungry. He doubled his weight in six months. The younger one was on a whole tablet which later got increased even further - no sedation. And he stayed skinny. Mind you, when he went off the risperdal (it was making little difference and costing a lot for no gain) he lost weight, which panicked the doctor. difficult child 1 also lost weight when he came off risperdal, but because he'd also grown older and bigger, he didn't lose all he'd gained. But any fat turned back into muscle and he's back to what I think he would have been anyway, in terms of his physical appearance.

So yes, weight gain can be a problem but not always. And if/when he comes off risperdal, the weight should re-stabilise. If you're concerned, give him healthy food that is lower in fat, sugar and refined carbs. Plenty of fresh vegetables and some fruit in moderation. But I wouldn't limit his overall intake, especially if you're happy that he's eating at last. Maybe grab the chance to expose him to a wide variety of foods? We've had a rough time with all three of our youngest kids having Sensory Integration Disorder (SID) issues as part of their Pervasive Developmental Disorder (PDD). Plus Obsessive Compulsive Disorder (OCD) - oh, delightful! Three of them, each with their own different obsessions, phobias and sensory issues, all clashing! But it did work out, we all kept our sense of humour.

What I'm saying - even in the same family, drug reactions can be very different.

I hope you can get to the bottom of the vomiting. There are so many possibilities. difficult child 3 had nausea and vomiting but in his case we're fairly sure it was entirely due to anxiety. This was after exhaustive medical investigation to rule out a physical cause - necessary, I think.

Something else we observed - our Pervasive Developmental Disorder (PDD) kids have taken longer to mature, and to reach various milestones. This doesn't mean they are "retarded" to use a word that is no longer politically correct. It's quite odd. But our boys are both very bright, well above average. However, they took/are taking a lot longer to do things like sleeping through the night, toilet training (which seemed to happen in reverse order!), doing some things independently. But sometimes in other areas - they were way ahead, almost freakishly. Less so with difficult child 1.

I said earlier, we're a lot further down the road now. Both our boys are doing so much better than we ever thought possible. It's been hard work, I've got a lot more grey hair now, but I'm beginning to relax a lot more now.

Be good to yourself, don't feel bad when things go wrong. Here's hoping the risperdal keeps things a bit calmer in your household for now.

Keep us posted on how you're getting on.

Marg
 

karif

crazymomof4
difficult child is still very aggresive. Now he is more engaged and less mellow. STill eating us out of house and home. With Abilify he seemed shy and afraid of everything. With Respridol he seems more alive, which is good and bad. Good because I feel lilke my little boy is back, but bad because my little boy is back with the aggression and temper tantrums. I think we need more medications. Or a vacation. :D I am trying to keep my sense of humor in this all so please don't get offended. Thanks to all the positive reassurance from everyone. That is what I really need right now is love from experienced moms and dads.
 

Marguerite

Active Member
Something else that may happen, karif - I found that my boys were often worse as their bodies were changing in any way. For example, if they were coming down with a cold, recovering form a cold, adapting to a new medication (other than stims)... the uncertainty of how they felt and how they could control themselves (or not) seemed to throw them off a bit. It's not directly a drug reaction or side effect, it's more an adaptation issue. There has been a change - they are trying to adapt to that change.

If this is a factor for your son, then hopefully a period of a few days on the same medications after the dose is stable in his system, should see him getting back to a more even keel.

Again, an example where diary keeping can help you see patterns in his behaviour, and anything which can cause either positive or negative changes in his ability to cope.

And by all means hang on to your sense of humour - it's what gets us through!

Marg
 

karif

crazymomof4
Now I am convinced that the Respridol is not working at it's current dosage. .1 mg in the am and .1 mg in the pm. I put a call into the doctor and let them know we are back to all day tantrums, screaming, hitting, etc. We are also back to not sleeping at all during the day and having a very hard time going to bed at night. Alll of this wears on a persons soul after a while.:tongue:
 

Marguerite

Active Member
It's rough when you're fine-tuning. Here's hoping the doctor keeps in close contact while you're getting the medications adjusted.

Marg
 

karif

crazymomof4
Why is it when I tell someone what my difficult child has they back away and say oh that is sad and then stop talking to me? I think his medications need to be adjusted again. Just having a bad morning trying to get ready for church and hoping that I don't get pulled out of service for him.:tongue:
 

BusynMember

Well-Known Member
I've been through the mill and back, especially with my foster/adopted son. medications will not solve everything. You need more than that--including that complete evaluation. At best, medications are hit or miss--a doctor's best guess. All the medication tweaking on earth will not solve the underlying problem or totally fix the child. It's something he needs to help him, but it's not going to change him completely because medication alone doesn't work and he probably needs interventions for his other disorders, still undetermined, that are causing his behavior too. There is no pill to fix it all. ((((Hugs))))
 

Marguerite

Active Member
I hear you on the negative reactions from other people. It's almost as if they are afraid it is contagious. Although to a certain extent, misbehaviour IS contagious with small children, they see another kid "mucking up" and take it for permission.

Now is when you find who your real friends are. Don't feel too sad - these people always were going to react like this. All that has happened, is your current situation with your child has simply brought it out into the open. It needn't have been a problem child that showed you, it could have been a crisis in your physical health, for example. Also unfortunate - sometimes church congregations, the ones you most rely on for compassion, can be the ones to let you down the most. Don't take it as all of them, or even as representative of Christianity (or any other religion). This can happen with any group of people gathered together for any one of a number of purposes. Under everything, they're still just people, with all the usual flaws and weaknesses. The religious bit just says they're supposed to try harder, that's all. There's nothing to say they're supposed to succeed.

It DOES get better, with other people. They take longer to come on board, that's all. We stopped going to church every week, we don't go very often at all these days. Partly due to a busy life, partly due to health problems (mine, husband's, mother in law's) and partly due to not overloading difficult child 3 or the congregation.

We did in the end keep difficult child 3 out of Sunday School. For a while, I would go sit in with him, he also had older siblings in there. I considered myself or easy child as his aide in Sunday School. I actuallly led Sunday School (on a roster basis) and would take him on the weeks when I was on duty - that way I could keep an eye not only on difficult child 3, but on the other kids, some of whom were being mean to him. However, once he started "big school" the 'mean girls" actually became his protectors and reported EVERYTHING to me or easy child. Even incidents of teachers bullying difficult child 3 were reported by the kids. Mind you, the school never accepted that these incidents happened, but they never happened again after I reported it.

SO you COULD also view Sunday School as an indication of how things are likely to go, in "big school" with the same level of support. USe it to practice, maybe set yourself in place as an aide and see what you need to do to help him, and where you can back away and leave him to do things for himself. Observe, see what he can manage and see where he flounders. This gives you advance warning.

Again - keep that diary. Here is where you need to write down what you did and what you observed as a result. It is all information that his doctors and therapists will value immensely. Even doctors and therapists you've not yet met. In ten years time, this information will still be of value. You can't be expected to remember it all - you need your brain cells for more important work!

Tweaking medications may help to a certain extent, but whatever is underlying here, is always going to be there. medications just make it easier for him to adapt and cope, sometimes.

If you really feel angry at people's behaviour, make yourself a badge. Or a t-shirt. Put on it something like, "My child has Pervasive Developmental Disorder (PDD). No big deal. You can't catch it."

I saw a group of young teen disabled kids and a couple of them were wearing t-shirts that read, "I'm disabled. Not stupid." Another shirt read, "I'm disabled. What's your excuse?"
The kids in difficult child 3's drama class are amazingly supportive of one another. They are generally happy to be themselves, some of the bright ones can be a little too smug about being Pervasive Developmental Disorder (PDD) but otherwise they are great kids. There is an honesty about them and about how they express themselves - when one of these kids voluntarily gives you a hug, you know they mean it. When they greet you with, "Hi! Lovely to see you!" you KNOW they are really glad to see you. These kids trust one another as they never can fully trust 'normal' people. One of these kids was a former schoolmate (a year ahead) of difficult child 3. When they attended study days together, the older boy would look after difficult child 3 like a little brother, steering him away from bullies and telling him the same advice he had always been told but had never fully taken on board. By being able to help difficult child 3, it was the final part of the puzzle and he was then able to see how he could make these strategies work for himself. He now goes to a Special Education unit in a mainstream setting, a unit for very bright Pervasive Developmental Disorder (PDD) kids. It was a long process to get him there, a process which has required support and careful consideration of placement all the way through.

You and your son are at the beginning of a long journey, but the end of the journey is adulthood, independence and a satisfying, fulfilled life.

Marg
 

karif

crazymomof4
So I went down to the school district to register my little guy today. That was really hard for me since I homeschool my other kids. We had his IEP yesterday and they did put him in a 4 day a week class with a really great teacher. We start November 3. Anyways when I went down to the school district Josh was running around in circles as usual with no shoes or socks on. Now he was being really good for him, he wasn't bothering anyone and he could not of hurt himself. The lady at the desk looked annoyed, and said " he is goind to have to stop that!" I said alright and held him with one arm while he was kicking and screaming saying, " I a good boy let me go!" With the other hand I was filling out the paper work this same lady was giving me. NOw I didn't say it but I really wanted to say now wouldn't it have been alot easier for both of us if you had just let him run around. Just venting and I didn't get mad or frustrated I actually thought it was funny. Either I am losing my mind or keeping my sense of humor. Maybe a little of both. I just think how God deals with my own judgemental ways. Years ago I would have been that woman behind the desk judgeing my parenting, wondering why I don't deal with my son. NOw when I see children like ours my heart just goes out to those parents. Hugs to everyone oh by the way I think going up to .2mg twice a day on Respridol is finally starting to work.:D
 

karif

crazymomof4
I think we are making some progress. We increase his Respridol to .2 in am and same in pm last week. He is much more loving and responsive. We still have behavioral issues but overall he is making some progress. I hope.:D
 

karif

crazymomof4
ok one step forward and 10 back. We were making some progress earlier this week but since then all behaviors back including not sleeping. I think we got 3 hours of sleep last night. Which makes things worse. I tried to sleep while he napped but my phone wouldn't let me. I also think I need to get him evaulated for some kind of seizure disorder. He is still throwing up at least once a week. He cries and says he wants to go to the hospital then a few minutes later he throws up. Somedays I feel like all I do is make doctors appointments. Just having a bad day.;:bloodshot:
 

Lothlorien

Active Member
Has the school district done the evaluation? Did you send them a letter asking for a Multi Disciplinary evaluation?

Are you still titrating the Risperdal or is he at the highest dose yet?

I don't know what to tell you about the abdominal pain...is it always after he has milk? Perhaps trying Soymilk could help?

My difficult child has terrible problems when she has food coloring and/or corn syrup. Have you tried to eliminate those? She becomes extremely agitated and/or very emotional when she has either.

After you've eliminated those, try keeping a diary of the foods he eats during the day. It very well might be that he's allergic to something.
 

karif

crazymomof4
Yes we had evaluation by the school district. The thing is they don't evaluate for mental or behavior problems. Only for speech delay or severe autism or down's. We had our first day at school yesterday and the teacher said he had an amazing day. That is great but when he came home he was sick and then he bounced back in the afternoon after a nap. I am tired and stressed all the time. I hope things get better soon.:tongue:
 

susiestar

Roll With It
Hi! I have read some of this, and I think commented on some. Would it be possible to start a new thread? So much has happened during this, it is hard to keep track of everything. Usually each new event gets a new thread, so we can all comment more easily. I hope this is not upsetting, I just wanted to ask.

Susie
 

karif

crazymomof4
Sorry I am very new at posting on a board so I am not sure of the rules and what to do. I hope all my rambling didn't confuse anyone. I thought it worked more like an online diary but I can start a new thread for each event.:D
 

Mandy

Parent In Training
karif~ I went back to read your entire thread and I must say I DEFINITLY understand how frustrating all this is when you have never dealt with it before!! I came to this world of psychologists, psychiatrists, neuropsychs, insurance issues... and the list goes on!! I was so suprised to find out how few child psychiatric's there are and that some states only have 3 or 4 for the whole state:surprise: The first place I called wouldn't help my son either because he was under the age of 6! I was floored that someone seeking help would be told NO!! It is hard to figure out the "system" of how to get help for your child and it sounds like you are doing a wonderful job!! HUGS to you and you can PM me anytime!!!:D Oh, and I look forward to reading your online diary so I can come look when I need the info!!!
 

karif

crazymomof4
Well we went to neuro this week and also therapy. Neuro doctor put him on Depakote sprinkles 125mg in the morning along with his Respridol. I wanted to get an MRI and EEg but the doctor thought I was crazy. He said that there is no reason for it. I think that having a 3 year old on these very strong medications is reason enough. I have to think about researching another Neuro doctor. I am just spent. My relationships are suffering and most days I can't even hold a conversation with anyone. I am however understanding more and more that this is "normal" for kids that have a history like Josh. He is doing better in some areas but I would really like to see more impovement in behavior and potty training would be wonderful. Thanks for listening to me ramble on.:tongue:
 
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