Lots of ? about 4 yo DS. LONG post, sorry

Discussion in 'General Parenting' started by shutterbunny, Mar 28, 2007.

  1. shutterbunny

    shutterbunny New Member

    I'm basically very new here. I found the forum via a google search about abilify and toddlers. I ended up joining and posting in the topic that the google search turned up, but I have seen so much good advice on this board that I thought I'd throw my hat in and see if you might share some of that with me.

    Little bit of background. My son (only child) is now 4 years old. My son was a preemie and did say in the NICCU for 4 weeks, but after overcomming some apnea of prematurity issues, and having a long battle with severe reflux, he seemed physically fine. (The reflux was severe enough to cause esophogitis and he had internal bleeding due to this as well as several ear infections caused by reflux and a few bouts with pnuemonia due to aspirated stomach acid. He was under the care of a pediatrician. gastro until the age of 3 but has been in good control of it since the age of 19 months) At six weeks old, my son was unable to soothe himself or be soothed. He would scream for hours on end and he slept a total of 6-7 hours in a 24 hour period at the age of 6 weeks...certainly not nearly enough. We do feel that a good part of his screaming was due to his pain from the extreme reflux, but after several months of it being controlled, he was still unhappy for much of the day. by the age of 5 months, we were unwilling to blame all of the issues of discontent and lack of sleep on reflux, so we saw a neurologist.

    Developmentally, my son was way ahead of schedule and when his age was corrected for his premature status, he was amazingly ahead of schedule. He was using three words appropriately by the age of 5 months of age (adjusted for his preemie status, 3.5 months) and other things of this nature. By 12 months, he had less vocabulary (or at least used less vocabulary) than he did at 9 months. He was, however, very social and responded appropriately to hearing his name called, engaging in appropriate play, etc. But he was still extremely volatile. His eeg's has turned up a "rare abnormality" in his left temporal lobe. They explained the term "rare" as meaning of the thousands of electrical impulses recorded during the eeg, they saw some abnormal spikes less than 1/10th of 1 percent of the time. However, being in that region of the brain and his issue with rage and impulsivity, it was something we wanted to continue to keep an eye on.

    He was involved in early intervention programs and then cpse programs (still is with cpse) which involved/involve behaviorists, family trainers, Occupational Therapist (OT) (for sensory issues), and an integrated classroom setting for preschool. He is a very intelligent little boy who "snaps" at the drop of a hat with no real provocation or antecedent and certainly out of proportion to whatever people thought might have set him off. We used to say that he "went away" when this would happen because he was completely unreachable and unresponsive when he'd have these fits of rage. They could last anywhere from 15 minutes to 2 hours and they could consist of "simple" screaming and crying to screaming added to physical or verbal aggression. We have gone through doctor and specialist after doctor and specialist and everyone says the same thing..."we believe you, but he's so well behaved when we see him." I would bring in video of him raging and they'd say, "no that's not normal, but we just don't know."


    He has been on 350mg of depakote bid (starting at 125mg Sensory Integration Disorder (SID) and slowly increasing between last April and last December) with a theraputic level being reached but no positive change in rage control. Finally, three weeks ago, we found a neuropsychologist who started him on Abilify 2mg Sensory Integration Disorder (SID). Obviously, this dose is subject to change but the neuropsychologist asked us to give it 3 weeks before we ask about any changes in either dose or type of medication. He is still on the depakote along with the abilify.

    We have seen what we think is improvement due to the abilify. We've had an entire week with only one severe outburst and a few very managable (perhaps age typical) little outburst. We're holding our breaths...when do we relax, when do we say this is as good as it can get, at what point do we feel like we've got a grip (3 weeks, 3 months, 3 years)? How do you guys deal with going for several good days and then having a monster day? We've walked on eggshells for 4 years, so 2 weeks seems like an eternity to us but also seems like something we can't start relaxing about at the same time. The neuropsychologist said at this point he is diagnosis'ing him as unspecified mood disorder but we think he's leaning toward early onset bipolar. I'd like to know how some of you are dealing with these issues.

    Finally, I'd like to know if any of you have had success in getting insurance to lower the tier cost of the medications you might use. Between the depakote and abilify we are looking at $100 a month in medications for our son as well as $400 for neuropsychologist visits that insurance doesn't really cover (even though they have none listed in the plan.).

    Any help would be truly appreciated. Thanks for reading my long post.
     
  2. jal

    jal Member

    Welocme. I am on the new side too! We too have been walking on eggshells for 2.5 years. My difficult child is 4.5 and has been diagnosis with-early onset bipolar. He is on 7.5mg of Abilify. Luckily, insurance wise for Abilify my co-pay is $25, but I am in a several months long battle for reimbursement for a behaviorist who provided in home services (and was out of network) and now currently his new psychiatrist (who is also out of network). Luckily, his play therapist in covered.

    when do we relax, when do we say this is as good as it can get, at what point do we feel like we've got a grip (3 weeks, 3 months, 3 years)?

    I don't really have an answer for that one other than taking it day by day, because this is the beginning point. If this is truly what they have (Early Onset Bi-Polar (EOBP)) than life is going to be a series of ups and downs.

    How do you guys deal with going for several good days and then having a monster day?

    You are thankful for the good days and wade through the bad. I know it sounds "corny", but it's all I can say, as each day is a new adventure with our difficult child's.

    Luckily now, thanks to the Abilify, we are in a good place. No more calls from preschool to have him picked up. So we have been able to "relax" a bit. Oh, we still have our battles, but things have greatly improved.

    Good luck to you.
     
  3. shutterbunny

    shutterbunny New Member

    Jal,

    thanks for your thoughts. Amazing how the answers to something that seems so illogical is actually pretty logical. If I may ask, did your son start at 7.5mg of Abilify or did you work up to that, and if so, how long between dose changes. Friday is 3 weeks which is what the neuropsychologist told us was the shortest wait time and I don't want to call first thing Friday morning but at the same time I feel like there might be a bit of room for improvement...I would just like to hear from people at what point they felt the need to ask for a change vs. hold out and see how things go.

    Thanks again for your response.

    Michelle
     
  4. jal

    jal Member

    Michelle,

    We worked up to the 7.5 mg. We originally started on 2 mg for 1 week and then we moved to 4 mg the second week. We went to 5 mg for two weeks and now 7.5 mg. This will be the second week. We see the psychiatrist tomorrow. He felt on 5mg that we still had not seen the ultimate effects of Abilify, so we will see what he suggests tomorrow.

    When you are in the midst of this "storm" it is sometimes hard to see things logically. I, like you, know that first hand. These kids get you so turned upside down and inside out that you can't see straight, but we hang tight and just keep plugging away for them!

    On another note we have kindergarten orientation tonight for our difficult child. :nonono: The last 2.5 yrs have been long and exhausting, it just kills me that I kind of feel we missed out on some things and he's almost ready to go off to school.
     
  5. SRL

    SRL Active Member

    I don't know about the insurance question so I'll pass on that one!

    I know you are probably looking for a better answer than this but the best advice I can give you is to take one day at a time. Heck, I've been at points where an hour without disruption seemed like the best gift ever! There simply is no one sized fits all when it comes to medications: many start seeing some escalation of noticable negative side effects after initial improvement at around 2-3 weeks though. We saw almost immediate improvement with an SSRI but then in the weeks and months to come saw a gradual increase in side effects so we traded off anxiety for rages and hyperactivity 9 months later!

    How is he doing socially now?
     
  6. shutterbunny

    shutterbunny New Member

    We worked up to the 7.5 mg. We originally started on 2 mg for 1 week and then we moved to 4 mg the second week. We went to 5 mg for two weeks and now 7.5 mg. This will be the second week. We see the psychiatrist tomorrow. He felt on 5mg that we still had not seen the ultimate effects of Abilify, so we will see what he suggests tomorrow.

    wow that's our neuropsychologist won't move that quickly...perhaps because DS is a new patient to him. I will call him on Friday and ask him about increasing the dose and we'll see what he has to say about that...Thanks for the run down.


    On another note we have kindergarten orientation tonight for our difficult child. The last 2.5 yrs have been long and exhausting, it just kills me that I kind of feel we missed out on some things and he's almost ready to go off to school.

    Yes, I hear you on the missing out front. difficult child is our only child and I cannot have more so we've kind of wondered what it might have been like to have a more typical child. Meanwhile, I wouldn't trade difficult child for anything, but in the past couple of weeks we've had some good days and husband and I have looked at each other and said, OH, so that's what being a parent is like...that's nice.

    Thank you again for your help, I appreciate it.
     
  7. shutterbunny

    shutterbunny New Member

    I don't know about the insurance question so I'll pass on that one!

    That's ok, I am sure it is a weird kind of question

    I know you are probably looking for a better answer than this but the best advice I can give you is to take one day at a time. Heck, I've been at points where an hour without disruption seemed like the best gift ever!

    Yep, I hear you. I remember we used to get 15 minutes of no screaming when he was a baby and we'd just get to the point of relaxing a bit and then WAIL, it would start all over. We've been like that with the rage/outbursts ever since.

    How is he doing socially now?

    That's a tough one to answer...when he's having a "good" day, he's a very funny, very sweet, very kind child. He's very much the ham/class clown when he's "on." Though, he's always very intense, happy is intense, angry is intense, sad is intense...he's intense. As for how other children perceive him, I'm not really sure. I'm not sure what "typical" peer relations look like for a 4 year old. I do see that other children seem to have banded together and he's not necessarily included. I tend to think it is because he has some pretty major outbursts and I'm sure that the children are both afraid to be in the path of one of his rages and naturally warey of someone that can be very different from them. I also know that he tends to attach himself to one little friend at a time and he can overwhelm that person by being so possessive of them. On the other hand, his teachers love him, they admit he has 'his moments' but they think he is just the greatest little kid when he's 'on.' They seem to feel that he isn't completely left out, but they do see some issues of him being possessive and/or bullying *by manipulating kids for attention* and they think that he could have better peer relations than he does if these things would come under control. He has some major issues with transitioning and we see him as having some anxiety about transitioning *from the bus to the school, or from activity to activity* as well as we see him struggling so hard to keep it together and I think he lives in some fear of "losing it" around his friends. I'm not sure that answers your question, but that's my take on it. in the past couple of weeks, he seems to have been able to sit and play with some kids with-o getting angry and stomping off to be by himself. He used to do this quite often. He'd stand in the middle of a room and scream that everyone was to stop looking at him and stop talking to him and he'd demand to be left alone to play in a corner by himself. We have not seen that in the last week or so. So, we're either making progress with the medications, or he's just in the "up part" of his cycle and we'll have to see how low the rollercoaster might take him.

    Thanks very much for your remarks, I truly appreciate the help.
     
  8. Ltlredhen

    Ltlredhen New Member

    Hi Michelle and welcome to the group!

    My difficult child is a 5 year grandson whom we are raising. At the age of 2 1/2 years I definitely knew he did not fall within the "normal" behavior range. Right at 3 years we started our journey of psychiatrists and medications. One of the first we tried was Abilify and he is currently still taking it.

    In our situation, Abilify has been the best at curbing aggression and anger. Now, don't get me wrong, he has his moments, but <u>nothing</u> like it was before being on this medication. There have been 2 times we (and psychiatrist) have tried to lower the dose and within a couple of reduced doses the awful aggression comes right back.

    We started out on 2.5 mg and worked our way up. Each time the aggressive behavior returned psychiatrist would increase the dosage. Finally after 3 different psychiatrists, we finally found one that prescribed lithium carbonate to work with the abilify. That is when I knew that we has indeed reached stability. My difficult child has been at Abilify 15 mg for 1 1/2 years now.

    This past fall, I finally began to realize what life was like with a stable bipolar child. He was stable for the first time in his life. No longer was he rapid cycling during the day/night. We could actually have days with no big outbreaks.

    In the last few weeks, he has shown signs of mania but I believe this is related to growth spurt and spring.

    If you have any other questions about Abilify, please just ask, I'll be glad to answer if I can.

    Donna
     
  9. shutterbunny

    shutterbunny New Member

    Originally Posted By: Ltlredhen
    Hi Michelle and welcome to the group!

    We started out on 2.5 mg and worked our way up. Each time the aggressive behavior returned psychiatrist would increase the dosage. Finally after 3 different psychiatrists, we finally found one that prescribed lithium carbonate to work with the abilify. That is when I knew that we has indeed reached stability. My difficult child has been at Abilify 15 mg for 1 1/2 years now.

    Donna


    Donna, Thank you for relating your story. It really does help. I do have a question re: the lithium carbonate. Our neuropsychologist mentioned this as something might help my son, but then he said he wouldn't give it to a young child...it wasn't that he was vague, it's just he dismissed it because of possible long term damage he said it could do-he was specific with what he felt the damage might be. I never questioned this as he's the guy with two medical degrees and I'm the mom desperately seeking stable ground for my son and our family to walk on...but that your grandson is on it at pretty much the same age as my son makes me really question the validity of the neuropsychologist's concerns. If you have a chance, could you please let me know if your psychiatrist said anything about being able to keep your grandson on the lithium long term? I am now going to do some major research on this medication, but I'd like to hear first hand from someone who has had a child who has been prescribed this medicine. I know from my own experience with different pain medications that I take for a chronic condition, that one doctor will say one thing and another will say the opposite and 9 times out of 10 the truth lies in the middle of the two, but I'd truly like to hear if your psychiatrist mentioned any possibility of negative consequences of long term use of lithium carbonate or if perhaps it isn't his intention to keep your grandson on it long term...or if our neuropsychologist is using outdated/incorrect research.

    Again, thanks so much for sharing your story, I'm so astonished to see so many people who are battling this same thing. I've spent the last four years feeling very isolated and alone and I'm seeing now that there are many kids out there like my son and that they are finding their way through...which means he can and we can as well.
     
  10. Ltlredhen

    Ltlredhen New Member

    I believe after my difficult child practically took apart the psychiatrist's office he was able to see we needed big time help.

    As with any medication, you have to weigh the good against the bad. I believe there are docs that hesitate to prescribe anything that has not been FDA approved for kids (or whatever the term may be) due to malpractice issues. Others don't want to subject the kid to multiple blood draws or side effects that come with the medication.


    As you can see in my signature below, lithium was not one of the first medications we tried. My difficult child trailed quite a few before we considered lithium. To me, I had a harder time putting difficult child on Abilify than lithium.

    In our house, lithium has made life livable with our difficult child. Since being on it he has been able to maintain a full day at prek and his teachers all say he does "great". Now, once home that's different story but he has managed to have a full day away from home, be around many many people, noise and lots of transitions. Before the lithium this would have been impossible.

    I see you are seeing a neuropsychologist...maybe that is the difference. We are seeing a child psychiatrist.


    No, you are not alone, there a quite a few of us in the same situation and we do understand what it is like to live with a child such as ours. In my case, I raised my two easy child kids, worked in daycare, even ran a daycare out of my home for years. When difficult child came along :smile: I knew something was not right. Never in all my years have I seen anything like that. His mother could not deal with him and a newborn so we (Nana and paw-paw) took him and he has been here for the last 3 years with no intention of going anywhere. We have legal custody of him.

    Take care,
    Donna
     
  11. shutterbunny

    shutterbunny New Member

    Donna,

    Thanks, I appreciate it. Yes, I'm sure the difference is more one doctor vs. another instead of specialty...though maybe not. I'll tell you what he said to us and I'm not really coming up with this on the searching I've done, so IF we don't get desired results with the abilify, I will revisit this with him as it was the first medication. he mentioned as maybe being the one that would really help--that's why we were surprised when he "took it off the table" as quickly as he put it on...but his reasoning was kidney involvement...but he seemed to indicate that this came with very longterm use, like 10 years, and he rattled off some statistics that I didn't pay attention to because he'd already said he would Rx the medication. He's not shy about Rx'ing medications not approved for kids or approved for particular illnesses with kids. Basically, most medications used for mood disorders in children are off lable use so he's fine with that. Because my son is on depakote, he has to have quarterly blood draws, so that isn't an issue. I'm sure he has some reason he didn't mention as I know a lot of docs feel strongly about using or not using certain medications with any patient. Thanks for letting me know, I appreciate it. Right now, the depakote and abilify are giving us some improvement whereas depakote alone did nothing...I don't know if the "cocktail" is working or if it is the abilify alone, but if we don't see sustained improvement with the abilify/depakote cocktail, I'll start asking this doctor serious questions.

    Thanks so much for your support...I truly appreciate it.
     
  12. totoro

    totoro Mom? What's a GFG?

    Hi Shutterbunny-
    Well I just wanted to welcome you and add my support... this is a long journey... we are going to start K next year as well and I feel the same way. We held difficult child back last year before we realized whaet was wrong with her and thought she needed some time to develop, per her pre-school teacher... oh well!!!
    Yes this has been frustrating but each step we have learned and she is doing better... maybe if we had the help early on she would be doing better but I can't think that way and let it get me down... I have to move forward!!!

    Anyway she is on Abilify as well, we believe in the slow and low mantra... and difficult child has had some adverse reactions to other medications, Risperdal and Trileptal. Severe tummy aches, toungue thrust, drooling, severe agitation, etc...

    Anyway despite a not so great psychiatrist our pediatrician. is aware of all of this and her and I work with difficult child's doses and go very slow... our psychiatrist is OK with this but she is new for us and has not seen the side affects... nor has she returned any of my calls!!! UGH.. (another story)
    ANyway we started at 1mg abilify on March 8th and then watched her moved it up to 2mg, 6days later. We did have to switch it to evenings because it was making her sleepy. One week later we moved it up to 3mg, 1mg in am and 2mg in pm.
    So in 3 weeks we have bumped up from 1mg to only 3mg. We will likely go to 4mg as of next week... so no changes this week. It is long and slow but she has seen some affects and the best part no bad side affects!!!

    After she is doing really well on this we will try to add back a different mood stabilizer... we are looking at Lamictil... slow and low.

    For us as long as her aggression is curbed we feel it is doing something... we will increase as the doctor's and we see fit depending on how she is acting... she is still very aggitated but not like the aggitation we saw in the side affect from Risperdal.
    I am sure you do this but make sure you document all of this, the medications, doses, reactions etc. It is so easy to forget... even phone calls to whom and when.

    Good luck and welcome!!!
     
  13. totoro

    totoro Mom? What's a GFG?

    One more thing I would suggest if you don't have it already-
    "The Explosive Child" by Ross Greene

    Great helpful tools- some don't always help for all difficult child's but it will help with your thought process and it does take time and effort... it can't hurt. We use it as much as possible, but our difficult child is not that capable of negotiating... but other aspects of the book work well for us.
     
  14. shutterbunny

    shutterbunny New Member

    Totoro,

    Thanks for you input, I really appreciate it. Well, I talked to the neuropsychologist today and he said increase to 4mg if we wanted, or if that worried us, go to 3mg instead. We're contemplating until tomorrow morning.

    Our son had the fatigue from the abilify, but that eased after a week...first week, he would be wiped 3.5-4 hours after he got his dose and sleep for an hour...I mean SLEEP, if we didn't wake him for preschool, he'd have slept for hours on end, I am sure. We went through this with the depakote, so it didn't really surprise us, however, he seemed to shake this particular side effect much faster than he did with the depakote. I'm guessing we'll see it again if we increase for at least a week...if it doesn't subside, I'm sure we will consider pm dosing as well.

    The cost of his two medications are what is killing us, but we'll do what we have to do if it makes him feel like a kid. I got a call from the head of the county cpse program...this used to be the really dreaded call...the preschool teacher was a bad call, but I had grown used to them. As it is a cpse class, it isn't as if they can "kick him out." Maybe move him to a more restrictive program, but not as him to leave as he is there due to behavior. But, when the head of the county program calls, it is never good...except for today. She called to tell me that she'd been in his class twice this week and he seems like a completely new child. She said she was so happy for him (because he seems at ease and happier than he used to be) and she was thrilled for us because she's been crossing her fingers for something to work for us. She would always tell me how she wanted something to work for us so we could understand what it meant to be a happy family (we were always happy, just stressed, tired, frightened and happy) and since we have no other children and he'd been like this basically since birth with no help from anyone we took him to, she felt we were really missing out. I do kind of think, hey, I wish I had "this kid" years ago...this is fun, and happy, and amazing. I always knew he was an amazing child, but I could never relax...I've been able to relax in the past couple of weeks--my husband and I have enjoyed being a family and we've been happier with each other...amazing how the calm just helped our marriage seem better as well...but I am on a tangent here...anyway, it was the first time I got a call from someone in the school system that wasn't to tell me that we had to figure out something, go to a different/new specialist, get new help, try something different, look at a different school, etc...this was a call to tell me that they see a little boy who is amazing and funny and really smart...and that's it...usually we'd hear amazing and funny and really smart and then the dreaded "but" would come in to play, but this time no "but." It was AWESOME :smile:

    So, I will have to watch for bad side effects...I do think we see some bouncing off the wall times but I can't figure out if it is him just having the same amount of energy that he always had and now he's channeling it into being happy or if we're seeing some mania or what...we'll have to keep a very close eye on him.

    As for your thoughts of "what if we'd started looking for help sooner." DON'T GO THERE! I could tell you a thousand stories (as I'm sure every mom/dad here could do as well) but the fact that we're finding help means we're doing the right thing.

    Again, thanks for your help.
     
  15. totoro

    totoro Mom? What's a GFG?

    I am glad you had some good news and are seeing some positive results!!! We have lots of bouncing off of the walls in the afternoons as well... difficult child does the "I love you" countless times... which can drive you crazy after a hundred times! Especially in between the "no one loves me" and "fine! I will go and just be alone!!!"

    Glad to read the good news, hope it lasts!!!
     
  16. jannie

    jannie trying to survive....

    What a great phone call !! I'm so happy they called to say something positive. I'm thrilled for your family and difficult child that you are seeing positive improvements in many settings !! I hope this is the new trend !!! :bravo:
     
  17. shutterbunny

    shutterbunny New Member

    Originally Posted By: totoro
    I am glad you had some good news and are seeing some positive results!!! We have lots of bouncing off of the walls in the afternoons as well... difficult child does the "I love you" countless times... which can drive you crazy after a hundred times! Especially in between the "no one loves me" and "fine! I will go and just be alone!!!"

    Glad to read the good news, hope it lasts!!!

    First of all, thanks, and OMG, I have to tell you, you've described my difficult child "non one loves me" and "fine! I'll go be by myself" are his mantras, so VERY close! I'm not laughing at the difficult child's, just that there's another mom out there who hears how "I very much love you mommy" a thousand times which with no provocation becomes, mopey sad and then boom, FINE...then again, I know "typical" kids who have those moments, so I am happy to have him communicating with me, even if it's a little off some times. In the past week he's even put on his own shoes (something he could do, but always refused and something that always sent him into a rage)--it has been a good couple of weeks.
     
  18. shutterbunny

    shutterbunny New Member

    Originally Posted By: jannie
    What a great phone call !! I'm so happy they called to say something positive. I'm thrilled for your family and difficult child that you are seeing positive improvements in many settings !! I hope this is the new trend !!!

    Thanks Jannie, it really is night and day...I can't believe it. Thanks to everyone here. You have all been so great. I can't wait to be further down the road and maybe help someone else feel as relaxed as you've all made me feel.
     
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