thinking too hard, medications and weight, ramble

Discussion in 'General Parenting' started by buddy, Dec 2, 2011.

  1. buddy

    buddy New Member

    Ok, Q is not huge, but he is now 5 feet and weighed 107 at the doctor today (had to go he said his heart hurt, I think it is heartburn but not sure so had to check).

    He is averaging 1.5 to 2 lbs per week. I have to get his height from d/c at hospital and the last two doctor appts to see if height is changing enough that this is ok, because even if he grows 6 more inches over the next 6 months, 48 more lbs would not be healthy.

    At what point is a weight increase too much? is the bmi you need to look at?

    He has always been so little that I have never had to worry. I am ok if it is growth spurt stuff, but if the medications are causing this, not ok with me...I dont think there is enough evidence this is working at this point. But he has only been on this dose for 4 weeks. They said we should see benefit in a couple but not for sure know until 6 weeks.

    I feel like he still gets agitated at times.... usually associated with something physical that sets it off like the rash, tired, hunger... but if the hunger is being caused by the medication then that would be eliminated without it....

    A difference from the lamictal reaction is he will act like he is really mad, hold his fist etc. but there has not been any except for one day when he had the rash terribly and could nto keep from falling apart all day. That was the day too that we had the IEP meeting and the public health nurse came so he was super stressed. Compared to when he was on and coming off the lamictal, that is huge. But his agitation does not seem less. I guess that is better than aggression but I dont know.

    so I have been doing lots of research on medications in brain injury for agitation and aggression. seems the most successful medications are Ritalin and Clonidine.... well well, what do you know.... those are the main ones I always thought worked. the studies I found said that in brain injury, clonidine or any beta blocker medication used for this only has worked in large doses, again.... exactly what is going on with Q.

    Says lithium in a brain injured person with no mania has not been shown to work, but that was only one research review and I think it was a limited number of studies.

    Another said that in prolonged aggression lithium worked dramatically for 5 out of 6 of the patients. But he didn't have prolonged aggression, it got dramatically worse after the lamictal, but the only times he had more than brief times more than once month or so...even less most of the time.... it was when he grew and we had to increase the clonidine or ritalin and that fixed everything...would completely stop for a long time again.

    It stinks so bad that he is at such high doses that this is not an option for him anymore.

    What to do???? I am sure there is not an easy answer... research sure stinks for this. When it is not a brain chemistry thing... seems to be so different.

    I am glad we are going off the prozac. the only ssri I found positive research on was zoloft. That was in adults, but not huge success.

    anti psychotics and atypical anti psychotics were again not shown to be so great for many....

    well, we saw that for Q too and it actually was ugly for him to be on them. AFter seeing those kids on 20/20 I am not thrilled to try them again anyway.

    I sure hope that the extra therapies I am trying will help.

    I posted on FB maybe only...not here, if so I am sorry for saying this twice:
    Courage center called me back, the counseling part. they asked if I would be ok with Q working with therapy dogs. What was so strange about that was that I had in my search engine at that very moment.... therapy dogs for children with autism.....

    That was weird.

    thanks for letting me ramble...
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Therapy dogs... what a great idea!
    Given that he's already around horses... dogs are the other major animal group that forms a strong bond with people.

    The whole medications thing... ya. I hear you. Its so hard to know if you're better off with or without, or if you need more or less or something different or... !@!! And yet - you know that "nothing" is definitely NOT an option. How to find the balance for him, without losing YOUR sanity?
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Weight gain... difficult child went through that - in SHORT bursts. Like, 4-6 weeks, maybe? And then "leveled out" at a pound a week... How else do you get from 100 to 150? (and add 9+ inches...)

    Its not just height, its bone structure - shoulders start to get broader etc., which provides more frame to hang weight from and more skin to cover it all...

    BMI is a better metric to track than just weight/gain.
  4. buddy

    buddy New Member

    yeah thanks IC, that pretty much sums it up...

    I thought the same thing.... he really loves dogs. He gets VERY nervous if they are big and jumpy or fast. They said these doggies are slow moving and calm and sweet to teh kids, but can handle loudness and rough housing since they are trained on kids with autism. I was pretty psyched. the lady who owns them called me.

    And the clinic I first went to, we are on hold for Occupational Therapist (OT) because there is such a long wait list...this place has openings for everything! They are much bigger. they do residential for people just coming out of the hospital for rehab. MY cousin went there when he was 19 after breaking his neck diving into a river drunk... he is 50 and paralyzed from the shoulders down and still doing well.... they said it would never happen. But he still loves courage center and says they were the best. They actually have their own horse back riding program, but when I called years ago it was only for physically impaired kids. they seemed shocked thinking it would work for autism. but times have changed and they use it for at risk kids, ptsd, etc...maybe they have different criteria now. Still, I love where we go so would be ok driving out there ...and my mom helps with that.

    I am excited to see how that might work. maybe put him in that calm state that he is in when he CAN talk to me about his feelings and what has happened during the day. And if he could follow directions to do with the dogs, wouldn't that be cool?
  5. InsaneCdn

    InsaneCdn Well-Known Member

    I read a story once... probably in the last 10 years. About service dogs and the range of things they do. And one of these was a mid-sized dog (don't remember the breed) with a multiply-handicapped kid in a wheelchair. This dog... would fetch things that dropped, help pull the wheelchair uphill (manual chair!), watch behind so nobody could sneak up on him (the kids loved to tip him out of his wheelchair)... AND snuggle up with him whenever he was anxious. The kid didn't have to ask for this - the dog KNEW, and jumped up. Which then told the teachers that something was up...

    Not that Q needs or would qualify for or you would want the work of... but I thought it was a neat picture.
  6. buddy

    buddy New Member

    I talked to one lady in an organization out east. most of them are very expensive, even when they say they are no cost to the family. they have you fund raise at last half and that is five thousand to twelve thousand dollars, but I would certainly try if this ended up being a good thing. she said they train the dogs to screaming/rage sounds.... they get a treat for going to the person doing it...the dog is to distract the child,,,licking snuggling etc. they have learned they get treats for this.
    She said if a child has aggression the dog may get upset, depends on the level so they do an individual plan, if just minor, then distraction. if not then they have them learn to follow a command from the adult or carer to kennel up. She said they only do it with kids like Q who are always with a care giver. And of course if they improve, which she said many do then they can start doing independent little things.... I can't imagine that for Q but maybe sitting on the porch alone etc. he can do that.
  7. Hound dog

    Hound dog Nana's are Beautiful

    medications do affect weight, but you'll need to continue to watch his growth and development. At his age, teen boys can suddenly plunge into growth spurts that will cause your jaw to drop, the appetite for such spurts will cause you to faint. Travis was ravenous from about 13-20 yrs of age, seriously ravenous. (only medications he was on were seizure related)

    As per the therapy dog, not to be a downer but be prepared for it not to work. He may love dogs (Travis does) but that is a far cry from being around one 24/7 and it being his "buddy". We adopted Rowdy hoping that he would be Travis' buddy dog, sort of a pre-therapy dog type deal. Now Mr Rowdy has no formal training (well not much) but he makes up for it in personality and is as patient as the day is long ect. But we discovered despite his love for dogs, Travis can be very out of sight out of mind type person. And although Travis loves was an utter failure as far as the buddy dog thing. But it did tell us Travis could never have a therapy or seeing eye dog unless he lived with someone else willing to care for the dog. Otherwise it would starve or die of thirst and be terribly neglected. (we discovered this the hard way much to my horror) Mr Rowdy is now 12 yrs old, despite being starved a few times (I do mean really bad too), terribly neglected at other times, he still has his awesome personality. (and yes the rest of the family just stepped in for the poor dog's sake) Travis wasn't deliberately being cruel......Rowdy just didn't occur to him except once in a while, even with being reminded. He was too into his own world. (still is)

    Q might do better, but I thought I'd warn you just in case. It was a huge let down for us that it didn't work out the way we'd hoped.

  8. buddy

    buddy New Member

    Thanks Hound, we actually already have a personal pet dog. Q took on feeding him and watering him himself! Just does it. (actually he eats some of the dog food to this day, yuck). He loves his dog and anyone who has a dog. Likes to walk him etc. In any event, Q would never be the one left to be responsible for a therapy dog....too valuable and too much training involved. He always has 1:1 watching him anyway. I have no plans to do it now, just was investigating. I think it we see signs of the courage center dogs working well with him it might give us some insight if it is worth the extraordinary effort we would have to go through to get one.

    So I guess my question about the weight (now that it is morning...sigh) is, how do I know the difference between the normal shocking growth spurt (yeah, you and IC are is shocking but kind of cool too) and if it is an unhealthy weight gain. I mean if he keeps gaining 2 lbs a week he will more than double his weight in a year. That can't be good. from a tiny kid to a kid who is over 200 lbs in a year, wouldn't that be really unhealthy? Do I just watch the height/weight ratio and bmi? or is the rate or both?

    Lisa, does Travis live with you? I forgot.... Your posts mean a lot to me, I know you understand so much of what I say....
  9. timer lady

    timer lady Queen of Hearts

    Buddy, sweetie, for all that's going on weight gain would be the last of my worries. The best I could do for kt & her weight gain on seroquel (which leveled off, by the way) was put healthy food on the table & encourage lots of fruits, veggies & exercise.

    As to the therapy dog I'd definitely go for it. Would one of the organizations you're working with help you with the process in attaining this very special helper? kt is definitely calmed by Lenny & he works for me. Even tho Lenny is trained as a hearing dog he really helps kt self calm & stay focused on the here & now.

  10. buddy

    buddy New Member

    yes, true, but wouldn't an aggressive 200 lb kid be worse than a 100something kid? I know he will be a man some day...just in one year...too much for me, unless the medications work. THAT would be a different story. I am worried he will have this side effect and the lithium will not really help. So glad to hear it leveled out. did that happen during a growth spurt for her too?

    I am going to let the therapy dog thing play out... it is great they have them at courage center so we can see if it is good for him. the horses are magic so who knows?
  11. Chaosuncontained

    Chaosuncontained New Member

    In third grade, Carson weighed aprox 58# (weight when he moved to my house full time and started seeing a doctor here). He had zero appetite from the stimulant medication he was on. We used to take him to the store and tell him to pick out WHATEVER he wanted to eat and we would buy it. He rarely did.

    We took him off of the stimulant. He started gaining a little weight.

    Then we started Abilify. BOOM. Changed to Risperdone. BOOM BOOM. He recently gained 6# in 4 weeks.

    In 18 months he went from 58# to 74#. He wore size 8 pants last year--with the adjustable waistband pulled as small as I could make them. Now he's in 10's...with no adjustable waistband. And there are getting SMALL. His butt will soon require it's own zip code. He wants to eat constantly. No fruits. No veggies. I let him have a sandwitch or popcorn. I try to distract him with another activitiy...but it's always "I'm hungry. I'm hungry."

    I am OK with him being "fluffy"...but I'm not OK with him getting obese. ;)
  12. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I had to laugh at his butt requiring its own zip code...omgosh...dying here.

    Poor carson...he and I must live in the same zip code!

    Cory gained a lot of weight on the psychiatric drugs. Jamie and Cory were skinny growing up. They were on ritalin until Cory went off at 11 and Jamie went off at 14. Jamie stayed very thin until he got out of the Marines. He still isnt fat but he could be thinner. He is 6'5.5 and weighs 225-230 given the week. Cory's highest weight was up to 260 when he was 15 but that was on depakote and zyprexa or seroquel. When they put him on lithium he started losing weight and he is now a very thin 165-170 any given week. Oh he is 6' tall.

    Now unfortunately, I do gain weight on the medications which is why I am leery of so many of them. I hate the AP's and wont take them anymore. I know about 30 of my current pounds are due to seroquel. They tried me on lithium and that made me gain weight. That was right after I had lost almost a hundred pounds. Now I have gained it all back. I cant blame all of that on medications of course.

    Im wondering...I know he cant take certain medications but is there a possibility for those really aggressive times could he take a melttab of klonopin to just take it down a notch. I used to get my klonopin in these meltaway tabs and you just popped them in your mouth for quick release in really anxious situations. Worked great if I was in a bad situation like fixing to go over a horrible bridge in bad traffic!
  13. rdland

    rdland New Member

    I would not worry about the weight gain right now but keep an eye on it. Right now he is in the 25th percentile for weight and below 5th on height. He could very well just be gaining because he is having growth spurts. Boys that age can gain quite a bit and all normal. Yes, the medications can cause extreme weight gain but for now try to put it in the back of your mind and just monitor for the next 6 months and see how he trends.

    His bmi is in the normal range right now which is good. You can get a growth chart for bmi and plot his progress if you want.
  14. buddy

    buddy New Member

    that's what I was thinking.... the reason this is so dramatic for us is that he has always been under the chart.... at most he has popped up into the 8th percentile ever, for height and weight. So this is a huge change for us. None of the pants I bought in Sept fit. It is fine for him to be what he is now, no biggie, just worried I wont be able to help him if it continues so fast, and since changing medications has resulted in two hospitalizations, I am a little over protective right now.
  15. TeDo

    TeDo Guest

    Take it easy for now and enjoy the growth. difficult child 1 has gained 7 pounds since his hospitalization (weighed 68 lbs then) and it is GREAT to see him getting a belly (as opposed to showing ribs). He has also grown 1/4 inch since then because he is finally getting ALL the nutrients he needs. I haven't had to buy new clothes for him in over a year....until now. Part of it is the medications but the other part is puberty eating.

    Keep an eye on it but it's not bad enough to worry about yet. There, now BREATHE and RELAX.
  16. buddy

    buddy New Member

    That is a great idea. We did have a prn order for ativan at the hospital, it didn't TOUCH him. They were like...holy heck, it didn't make a dent. That is when I told them to just get the doctor to order prn clonidine, even though he is at a high dose...fact is he has never had low blood pressure on it, and no fluctuation at all really. All his heart and lab work are really good. They did it and it worked, only had to like three times in three weeks. We have no ttried klonopin.. I gave him teh short acting ritalin today instead of concerta, and tonight since he is just watching his sports, I have him half dose. He took a nap and is being sweet. i know if we tried to do anything it would be too much, but he has always been happier on less ritalin.

    I am hoping the dr is right, he is at an age where his brain may need less instead of more ritalin. she said at some point it usually starts trending the opposite way as the frontal lobe develops. It happened that way for my nephew. Last year at this time he needed three times the dose he is on now. He is happier, eating more and doing his work! School still needs a 504 to help with organization but will be interesting to see how it turns out.