My son has adhd anxiety and some ocd symptoms on top of cystic fibrosis in the past we tried different extended release adhd meds and they didn't seem to work sometimes the did when he took enzymes. He is on resperidone, guanfacine, and wears the daytrana patch but nothing seems to be working his on task time at school is only 7 mins and at home a lot less. I was wondering what has worked for others I am ready to wipe the slate clean and try something different because this is not fair to him at all. On top of it he hardly eats and throws at least one fit/tantrum a day and he is 6 years old. Please help he has an appointment with his psychiatrist on June 10th. Will need ideas for then we have also tried lexapro too on top of everything else and it made it worse.
CF and adhd
- Thread starter BrycesMom
- Start date
My son has cf, ADHD, anxiety disorder, and autism and i can relate. My so is now 16 so I can definitely relate to what you are going through. He is also n the daytrana patch, takes Zoloft, and Buspar for the anxiety. Attention span has always been an issue and getting school work done in a timely manner. In my sons situation, medications could only do so much. After trying different things we did find a reward system worked at school and home with stickers. My son loves video games and what he loved most when he was in elementary school was renting video games. So if he did what was expected at school and home he was given a sticker. At the end of the week if he had 8-10 stickers, we went right after school to rent his game that he could enjoy over the weekend. This really worked for him. It also started putting him in charge of his behavior and by giving him choices, he was the one who would choose to sit at the table and finish his homework with me or choose to not participate and not receive his reward on Friday. We usually let him pick what he wanted for dinner on Friday too. I'm sure your child would like a different reward. The trick is to find something they really value and are willing to work for. It's not full proof and there were times he did not earn his reward and there would be a melt down, but those were far and in between. Just whatever you do, don't cave and give in or this system will not work. They need to know exactly what the rules are and there are no exceptions!
We still use this with my son because he does have autism and is developmentally delayed. This is one of the best things we have tried. All kids are different so this is just a suggestion. Good luck
We still use this with my son because he does have autism and is developmentally delayed. This is one of the best things we have tried. All kids are different so this is just a suggestion. Good luck
B
bookworm
Guest
Hello,
You mentioned that enzymes helped, and I thought about the enzymes that have been used with people who are somewhere along the autism spectrum and/or experiencing ADHD.
You may want to take a look at the first webinar on this page http://www.houston-enzymes.com/learn/web-seminars/
This is a field that is not without controversy, but seems to have a lot of pages out there written by parents who have found changes in their children, through enzymes and diet. Here's a good example:
http://healingautismandadhd.wordpress.com/diet-2/digestive-enzymes/
I was looking into some of these enzymes for another reason and I learned that no-fenol enzyme by Houston Enzymes is also used by naturopaths to reduce Candida (often a factor with multiple doses of antibiotics) and help get rid of biofilms.
You mentioned that enzymes helped, and I thought about the enzymes that have been used with people who are somewhere along the autism spectrum and/or experiencing ADHD.
You may want to take a look at the first webinar on this page http://www.houston-enzymes.com/learn/web-seminars/
This is a field that is not without controversy, but seems to have a lot of pages out there written by parents who have found changes in their children, through enzymes and diet. Here's a good example:
http://healingautismandadhd.wordpress.com/diet-2/digestive-enzymes/
I was looking into some of these enzymes for another reason and I learned that no-fenol enzyme by Houston Enzymes is also used by naturopaths to reduce Candida (often a factor with multiple doses of antibiotics) and help get rid of biofilms.
He takes pancreatic enzymes due to him being pancreatic insufficient. My sons psychiatrist thinks he maybe on the autism spectrum. He also enjoys video games. He gets stuck on and idea and just keeps repeating the same question over and over again he wants games all the time or to play outside with the neighbor but when it comes to stopping all hell breaks lose and he starts crying and throwing a fit and sometimes gets to the point where he starts having a panic attack or hypervenalating (sorry about the spelling)
Where are you from? Check to see if you have wrap around services in your area. It sounds like there are specific behaviors you want to work on and a trained therapist would be greatly helpful. They will come for a apt amount of hours each week and work one on one with your child on goals that you want to work on. They are also able to attend school for set hours each week to work on behaviors there. It is a lot of work but something we did with my son when he was about your sons age and it helped.
Does he have an aid at school? That may also be helpful if he isn't mainstreamed. From what you are describing it sounds more behavioral and medication isn't going to fix these behaviors. Like most kids with this much going on they need to learn new ways to deal with their feelings. I sympathize with what you are going through, it's a lot of work, but it does get better.
Does he have an aid at school? That may also be helpful if he isn't mainstreamed. From what you are describing it sounds more behavioral and medication isn't going to fix these behaviors. Like most kids with this much going on they need to learn new ways to deal with their feelings. I sympathize with what you are going through, it's a lot of work, but it does get better.
LittleLab4CF
Super Moderator
Don’t be too quick to either apply a psychiatric label or allow your psychiatrist to hand you labels based on early impressions. I was born in 1950 when ADHD, autism and a host of other behavioral problems were generally worked out between the parents and teachers. No further resources existed. Had there been a diagnosis for ADHD or dyslexia, I might have qualified as a poster child.
My father had CF and he was very “high strung” or hyperactive. He was perfect age for the draft in WWII but was mustered out after Basic Training due to “Neuro-Gastric Disorder”. I imagine today a doctor would be seeing him after his second bad report card rather than living under the threat of greater punishment if a third report card came in low.
My belief is that a significant number of CFers are hyperactive, considerably more common than one would find in the general population. Call it hyperactivity resulting in attention deficit or a 110 volt motor accidentally wired to 220 volts, there is a correlation between hyperactivity or ADHD and the effect of CF on the body.
From my experience the issues of CF put the body into an excited mode so that pain and infection are most efficiently addressed. Before effective antibiotics, doctors could treat infection with steroids to help the body fight or use adrenaline in the most urgent situations. Amazingly it worked then and works now although both are very hard on the body long term. The use of these agents was probably a logical extension of observing sick patients. We produce incredible amounts of adrenaline with pain. It doesn’t just shut down if the pain continues, the adrenaline along with a number of metabolism boosting hormones continue to be produced. So what happens to the rest of the body and mind when it is in hyper-drive? If the usual drugs (like Ritalin) for ADHD don’t work, chances are fair that it isn’t true ADHD, the brain condition. Not a lot of babies, infants or for that matter, adults live with chronic disease that is all the worst characteristics of disease. It’s a thought.
LL
My father had CF and he was very “high strung” or hyperactive. He was perfect age for the draft in WWII but was mustered out after Basic Training due to “Neuro-Gastric Disorder”. I imagine today a doctor would be seeing him after his second bad report card rather than living under the threat of greater punishment if a third report card came in low.
My belief is that a significant number of CFers are hyperactive, considerably more common than one would find in the general population. Call it hyperactivity resulting in attention deficit or a 110 volt motor accidentally wired to 220 volts, there is a correlation between hyperactivity or ADHD and the effect of CF on the body.
From my experience the issues of CF put the body into an excited mode so that pain and infection are most efficiently addressed. Before effective antibiotics, doctors could treat infection with steroids to help the body fight or use adrenaline in the most urgent situations. Amazingly it worked then and works now although both are very hard on the body long term. The use of these agents was probably a logical extension of observing sick patients. We produce incredible amounts of adrenaline with pain. It doesn’t just shut down if the pain continues, the adrenaline along with a number of metabolism boosting hormones continue to be produced. So what happens to the rest of the body and mind when it is in hyper-drive? If the usual drugs (like Ritalin) for ADHD don’t work, chances are fair that it isn’t true ADHD, the brain condition. Not a lot of babies, infants or for that matter, adults live with chronic disease that is all the worst characteristics of disease. It’s a thought.
LL
We are from cedar rapids, ia. He has a remedial therapist come two times a week to the house and he does have a para at school but I really don't think they are consistent in giving him the same para all the time which I think can make his focus worse. I need to get him back on the waiver that will help with some respite services as well. Just is not easy I work third shift monday-thursday so I am not there to work with routine in the morning and by the time he gets home I am still exhausted because I get maybe 2-5 hrs of sleep wish there was some legit work at home job so I can change my focus on him to get things figured out
C
Carol H
Guest
I have a question.. is it common for kids with CF to have ADHD? My grandson is having problems but I think it is due to issues he had with last time he was in the hospital. He was very afraid, he was in a lot of pain, and all of the procedures seem to be unbearable. He had stevens Johnson syndrome 
That was 5 months ago but now he does have a lot of anxiety and fear has become much more timid around kids and strangers, but his teacher said although he is very smart he is having a lot of trouble focusing at school and being able to complete a task? The teacher told her to talk with docs about ADHD.. the pediatrician said no, she knows my grandson very well and did not think he had ADHD, recommended he talk to child life therapist he has seen her once but I am not sure? So I was just wondering I can understand why kids would be scared and have more anxiety but is there more to this?
That was 5 months ago but now he does have a lot of anxiety and fear has become much more timid around kids and strangers, but his teacher said although he is very smart he is having a lot of trouble focusing at school and being able to complete a task? The teacher told her to talk with docs about ADHD.. the pediatrician said no, she knows my grandson very well and did not think he had ADHD, recommended he talk to child life therapist he has seen her once but I am not sure? So I was just wondering I can understand why kids would be scared and have more anxiety but is there more to this?
Hi Carol H, you did not mention how old your grandson is. ADHD is tough on the kid and the parents. Kids typically are not timid, they are actually quite the opposite. They are hyper, have severe difficulty with concentration and paying attention and are impulsive. They act like they run by motor. They never stop. They have difficulty making and keeping friends and just cannot sit still. Sleep is also usually affected and they have a lot of difficulty falling or staying asleep.
these are just some if the things you would definetly see.
In order to be diagnoised the child must display the symptons in atleast 2 settings, (home and school). There are assessment forms that are filled out by the parents and the teacher if you think these behaviors are appearing in your grandson. But if the peditrician does not feel he has it, she may not decide to give you the forms to fill out.
it does sound like he has a good bit of anxiety, and who could blame him. It sounds like he went through a very scary experience 5 months ago. Kids with ADHD are thrill seekers, it is like they have no fear.
Since he has only seen the child life specialist once, it nay be worth giving it a chance. Play therapy is amazing for kids, and he may feel more comfortable talking while playing rather than sitting in a chair answering questions. I think once the child life specialist spends some time with him, they will be able to help you all find out the root of his problem and help him.
talk with the specialist and see if this is something she is qualified to do. If not get a referal to a child psychologist who specialuzes in play therapy.
be careful with teachers trying to diagnois your grandchild. Some of them push for you to put them on medication because it is easier for them. My son must be on medication, and a few yesrs ago his teacher called stating i needed to take him back to the doctors to have his medication increased. He was doing great at home. I told her he is on medication to benefit him and not us, and she wanted a zombie in her class, and thst was not going to happen.
i hope you soon get the answers you need and i wish the best for your grandson
good luck, jshet
these are just some if the things you would definetly see.
In order to be diagnoised the child must display the symptons in atleast 2 settings, (home and school). There are assessment forms that are filled out by the parents and the teacher if you think these behaviors are appearing in your grandson. But if the peditrician does not feel he has it, she may not decide to give you the forms to fill out.
it does sound like he has a good bit of anxiety, and who could blame him. It sounds like he went through a very scary experience 5 months ago. Kids with ADHD are thrill seekers, it is like they have no fear.
Since he has only seen the child life specialist once, it nay be worth giving it a chance. Play therapy is amazing for kids, and he may feel more comfortable talking while playing rather than sitting in a chair answering questions. I think once the child life specialist spends some time with him, they will be able to help you all find out the root of his problem and help him.
talk with the specialist and see if this is something she is qualified to do. If not get a referal to a child psychologist who specialuzes in play therapy.
be careful with teachers trying to diagnois your grandchild. Some of them push for you to put them on medication because it is easier for them. My son must be on medication, and a few yesrs ago his teacher called stating i needed to take him back to the doctors to have his medication increased. He was doing great at home. I told her he is on medication to benefit him and not us, and she wanted a zombie in her class, and thst was not going to happen.
i hope you soon get the answers you need and i wish the best for your grandson
good luck, jshet
Aboveallislove
Super Moderator
Oh, Carol. Steven-Johnson’s!!!!! No wonder he is so scared. That had to be petrifying for him (and you and his parents). Before DS’s diagnosis a co-worker’s son had a SJ reaction and knowing what that meant, antiobiotics freak me out!
Re the ADHD. I think there was a recent thread on the same question, connection with CF, etc. I’m vaguely thinking there was a tad indicating it might have a higher prevalence, but it isn’t any strong correlation that I know. But as the other mom said, teachers should diagnosis and if the doctor doesn’t see an issue, it might well be that his inability to concentrate is more related to the anxiety from the hospitalization. And it should be seen in two different settings. DS’s speech therapist said she sees ADHD with DS and not "normal" 5 year old behavior and I totally see it at home and during his homeschool, so I wonder if the mom sees it too, or if not, then again maybe the anxiety. (I don't think they medicate at that age, though I wouldn't at this point anyway). I do agree re talking to the clinic folks and hopefully they can give your daughter some ideas to work on at home as well as what they do. Also, I wonder if it might help for him to learn some relationship exercises. I’ve gotten DS to watch me do some yoga dvd relaxation breathing, stretches with the hope he will want to do with me. Good luck!
Re the ADHD. I think there was a recent thread on the same question, connection with CF, etc. I’m vaguely thinking there was a tad indicating it might have a higher prevalence, but it isn’t any strong correlation that I know. But as the other mom said, teachers should diagnosis and if the doctor doesn’t see an issue, it might well be that his inability to concentrate is more related to the anxiety from the hospitalization. And it should be seen in two different settings. DS’s speech therapist said she sees ADHD with DS and not "normal" 5 year old behavior and I totally see it at home and during his homeschool, so I wonder if the mom sees it too, or if not, then again maybe the anxiety. (I don't think they medicate at that age, though I wouldn't at this point anyway). I do agree re talking to the clinic folks and hopefully they can give your daughter some ideas to work on at home as well as what they do. Also, I wonder if it might help for him to learn some relationship exercises. I’ve gotten DS to watch me do some yoga dvd relaxation breathing, stretches with the hope he will want to do with me. Good luck!
I have to agree with LittleLab. ADHD does seem to be diagnosed rather quickly sometimes! I had a brother who was probably ADHD under todays guidelines when he was little. My mother couldn't even keep him still long enough to eat dinner. He absolutely terrorized me as a child! Today, he is a physician with extensive board certifications and has concentration abilities unequalled by anyone I've ever seen. That is not to suggest that ADHD doesn't exist, or that many children aren't helped by medications and treatments. I just tend to see it as a last resort. And I personally believe that it needs to be diagnosed by those with excellent qualifications in the specialized field only. I'm uncomfortable with general pediatricians making the final diagnosis, although they are certainly well trained to see it as an potential diagnosis.
I will add this, since you are looking for other suggestions. My little CFer is hyper as well. And has had some significant challenges with attention span at school and homework. We found a major contributing factor for him was actually his eyes, despite passing the standard eye exams. We had him checked by a developmental optometrist at the suggestion of one of his teachers. They said he was too smart to be having the problems he was having. We found that in fact his eyes were not tracking properly, among other issues such as being uneven muscularly speaking, so he was frustrated when he tried to focus on things. The behaviors were often extreme. He was fitted with a special kind of glasses - although they look perfectly normal. When we put his glasses on him for the first time, we were all shocked to hear him explain that something was wrong with the glasses because things were now in a straight line and bigger. He didn't know they were supposed to be that way. The glasses calmed him down considerably - to the point that his teacher insisted he have a pair in her desk in case he forgot them at home. Now I will not suggest that this is the answer to all your child's behaviors, or even to my little guys behaviors. It certainly does sound like some of your problem behaviors are autistic or something else. But, CFers are complicated creatures. I've even often wondered if all the time my little guy spent in hospitals, NICU, etc didn't interfere with some development. And the field of developmental optometry is controversial, in part because many people want to explain dyslexia and other issues away with eye therapy, which is in my humble opinion, totally inadequate. They are all different issues. But I am also totally convinced through experience that vision issues otherwise undetected by normal vision testing cause kids a lot of behavior and academic problems that can be helped. (Oddly enough, even my hyper brother wound up with an eye patch at one point much later). It may be a piece of your puzzle and I think certainly worth an hour of your time. You can generally find developmental optometrists in your area by visiting their database online at http://www.covd.org/. There is a link on that page for you to locate a trained optometrist by zip code. It's a idea anyway! Hang in there, work it through. It will get better.
Blessings.
I will add this, since you are looking for other suggestions. My little CFer is hyper as well. And has had some significant challenges with attention span at school and homework. We found a major contributing factor for him was actually his eyes, despite passing the standard eye exams. We had him checked by a developmental optometrist at the suggestion of one of his teachers. They said he was too smart to be having the problems he was having. We found that in fact his eyes were not tracking properly, among other issues such as being uneven muscularly speaking, so he was frustrated when he tried to focus on things. The behaviors were often extreme. He was fitted with a special kind of glasses - although they look perfectly normal. When we put his glasses on him for the first time, we were all shocked to hear him explain that something was wrong with the glasses because things were now in a straight line and bigger. He didn't know they were supposed to be that way. The glasses calmed him down considerably - to the point that his teacher insisted he have a pair in her desk in case he forgot them at home. Now I will not suggest that this is the answer to all your child's behaviors, or even to my little guys behaviors. It certainly does sound like some of your problem behaviors are autistic or something else. But, CFers are complicated creatures. I've even often wondered if all the time my little guy spent in hospitals, NICU, etc didn't interfere with some development. And the field of developmental optometry is controversial, in part because many people want to explain dyslexia and other issues away with eye therapy, which is in my humble opinion, totally inadequate. They are all different issues. But I am also totally convinced through experience that vision issues otherwise undetected by normal vision testing cause kids a lot of behavior and academic problems that can be helped. (Oddly enough, even my hyper brother wound up with an eye patch at one point much later). It may be a piece of your puzzle and I think certainly worth an hour of your time. You can generally find developmental optometrists in your area by visiting their database online at http://www.covd.org/. There is a link on that page for you to locate a trained optometrist by zip code. It's a idea anyway! Hang in there, work it through. It will get better.
Blessings.
Aboveallislove
Super Moderator
Gammaw,
Excellent points! I re-read my post and see I forgot a "not!" A teacher should NOT diagnosis. And your point re a specialist versus a ped is a great one! I trust our ped and think he would refer before diagnosing, but frankly it doesn't matter from my perspective because I would not medicate. But my point was that if the little one's ped didn't see, I would not be concerned. I agree with both you and LittleLab. And strangly also have a younger bother who fit that pattern (and I'm pretty sure the doctor/teachers were pushing to medicate because I remember after one appointment my mom changed his sugar intake substantially (not that we had a lot but we had a wonderful mom and pop bakery and had a donut fairly regularly). Anyway, he too is now a doctor with two specialties!
Excellent points! I re-read my post and see I forgot a "not!" A teacher should NOT diagnosis. And your point re a specialist versus a ped is a great one! I trust our ped and think he would refer before diagnosing, but frankly it doesn't matter from my perspective because I would not medicate. But my point was that if the little one's ped didn't see, I would not be concerned. I agree with both you and LittleLab. And strangly also have a younger bother who fit that pattern (and I'm pretty sure the doctor/teachers were pushing to medicate because I remember after one appointment my mom changed his sugar intake substantially (not that we had a lot but we had a wonderful mom and pop bakery and had a donut fairly regularly). Anyway, he too is now a doctor with two specialties!