About our Daughter

I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.

How Did You Know She Was Bipolar So Young?

I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Never change, start or stop a medication without the approval of your child's physician!

Wednesday, December 2, 2009

Intuniv Continues to Make a Big Difference

Mae's general disposition continues to improve dramatically. The Intuniv ADHD med is a miracle drug, I've decided! I don't think we had a single meltdown yesterday, which is a record. She wakes up pleasant and happy, gets dressed without being told, packs her bag for school, and when I pick her up from school she is again pleasant and happy, so unlike what these two scenarios were like for years, when she has been snappy and ugly, yelling at the drop of a hat. Her brain is obviously getting what it needs now to function. I feel myself relaxing more around her. Hopefully this will have the desired effect on all of us, instead of that walking-on-eggshells feeling. Thank you, God.

(I have put the link to this med website in my "Great Resources" tab below)

35 comments:

McKenzie said...

Hi, it's me Amy again. Your website is so encouraging and helpful to me. I feel like there is finally someone who really understands that does not live in this house. Thank you!
About Meridell-how in the world did you pay for it? I hope you do not mind me asking that question. I was shocked at the price per day! We do not have any mental health benefits on our insurance so we would have to pay out of our pocket unless we can get creative.
Also, I am going to try and get our pediatrician to prescribe the intuniv. She is on vyvanse. Does Mae take another drug for her ADHD along with the intuniv? I noticed on Dr. Parker's website that you can take a stimulant with the intuniv so that is why I was wondering. Thanks for all of your help.
Amy

Megan said...

Hi Amy. I am glad you find encouragement here. We are all in this together, aren't we? Our health insurance paid for Meridell, which was a huge blessing. Honestly, if they didn't pay for it, we would have found some way to do it, maybe a second mortgage, or even borrowing from my parents, or me going to work full-time. It had gotten to the point that if she didn't go to an RTC, she was going to truly self-destruct. Mae isn't on any other ADHD med because all of the rest of them we tried made her angrier. Intuniv seems to do both the focusing job and the mood job.

I really wish there was a fund to help people pay for RTC treatment through CABF or something. Meridell does do an outpatient evaluation and recommendations for treatment, including the brain scans. This is second best I guess if you can't do the residential. Ask about Amantadine too, because this was the first drug that Caroline said helped her to actually think before reacting.

I really hope you can get the help your daughter needs!

carla said...

Thank you for blogging about your daughter and Intuniv. I have a "ring of fire" 12 yo, and am about to try it as well. Please keep updating---I am reading!

Megan said...

Hi Carla! I am so glad that the info may help you. Every year there is some new advancement in psych meds and I am so grateful! Now if there were just a cure for bipolar and ADHD!

McKenzie said...

Thanks Megan again for replying I know you have your hands full.
I hope you don't mind me asking some questions. We are so confused and just don't understand what God wants us to do exactly. We know He has a plan for McKenzie and the rest of our family but we just aren't sure what that looks like. But we are trusting and we are moving forward. With that being said, I am researching, searching, asking lots of questions to try and figure this all out. So here goes my questions...
How long was Caroline at Meridell? Did you all look at any other RTC program for Caroline? And if so, what did you discover? We are trying to decide between a more long term (7-9months)program that is not as medical as Meridell but they still have a psychiatrist that works with the girls to get their meds. right. The two I am looking at are Sunrise and Falcon Ridge Ranch-both are in Utah. Have you heard of them? They all have their pros and cons. McKenzie sounds a lot like your youngest more than Caroline. But she has anxiety as well(OCD type). Sometimes I wonder if the vyvanse doesn't make her more angry. When we have taken her off of it, she is extremely impulsive, but less moody. Have you heard of impulsive control disorder? They said she had that at Hope Ranch the last place she just came back from. Any advice or help you can give would be greatly appreciated. Also, is it hard to start a blog? I think it would help me tremendously. Well, I hope you have a good day and God Bless you for being on here.
Amy

Megan said...

Amy, you can certainly ask me as many quesitons as you need to. I am so happy to be of any help.

Caroline went to Meridell around the end of April and came home the end of August, so about four months. We did look at several other RTCs around the country, but our insurance limited us to certain ones, and none of the Utah ones were on there. We narrowed it down between Meridell, which is a three hour flight away, and one in Georgia called Inner Harbour, which would have been a seven or eight hour drive. Both had the QEEG brain scan technology that we wanted her to get because she had been so difficult to keep stable and had been on so many meds. We decided that Meridell seemed to be the top one in the country, and they had a bed open before the other one did, and she was in crisis, so sooner was best. We saw her once a month, sometimes just one of us, sometimes both, and we LOVED the therapist she had. You can look back at my blog from April thru August to get a feel for how everything went. It was really hard at times, but we needed the break as much as she needed the intensive treatment. It was healing for all of us.

I would make sure that the place you send her is cutting edge as far as psych meds go. Amantadine was given to her as soon as the results of the QeeG showed that she had an electrical abnormality, and the difference was amazing. It was not a bipolar problem, but an impulse control thing entirely unrelated.

Starting a blog is easy. Try Googles blogger or I think Yahoo has one. It has been my sanity at times.

Caring for children like we have is so confusing and exhausting. Many people don't get it and will question your judgements. Just keep trusting God and recognize that He has allowed these disorders and has also provided amazing medicines and therapies to help our special kids. I don't understand suffering, but He uses it to make us something more beautiful than we would have been.

Mae didn't handle any of the ADHD stimulants well at all. She likes Intuniv a lot because she still has an appetite. I was getting ready to send her away in September, not really, but I felt that desperate. She isn't bipolar, but had some similar behaviors.

I hope this helps. Keep writing!

McKenzie said...

Thank you Megan-I have tears in my eyes-you are so helpful and encouraging. You are right-we do need each other because no one understands. I was telling a doctor on the phone about the intuniv and said I heard about it from a friend. My daughter heard me and said she is not your friend, mom you are lying! Well, I told her she is wrong. You are a friend and I am so thankful that God led me to you. I found you because I was looking for any other info on Meridell and your blog came up. What a blessing! My husband is thrilled I found you. He keeps telling me that I need therapy but I think I have found a way to get it without paying lots of money and going somewhere to get it. Again, Thank you! Amy

Megan said...

You are so welcome! And yes I would love to be a friend!!

carla said...

We are beginning INTUNIV tomorrow (I can't wait for Christmas break!) Was wondering if you've settled on a "final dose" for your dd, and if so, do you mind sharing what it is? Our doc gave us a script for 3mg to use after the starter kit is finished. Hoping that will be the "magic number!"

Thank you!
Carla

trwhiteley said...

Megan...do you mind if I ask you about Mae and her Intuniv dose. Did she still seem explosive on the 3 mg. I am thinking that my 8 year old, 58 pound little boy can go up to the 4 mg. He is still taking his concerta (27 mg) with his Intuniv, but he is still explosive right now, in fact he seems a little worse. he was taking the Tenex 1mg twice a day until the Intuniv came out and then we switched him over. Why is ADHD so tricky???
Thanks,Rene'

Megan said...

Rene--
I am happy to answer questions about Intuniv. I am wondering if your son doesn't do well on stimulants. My daughter didn't tolerate Concerta or anything like that. She does best on 4mg of Intuniv. It makes her sleepy, so we try to give it at night. If your son is more explosive on stimulants, be careful. Sometimes latent bipolar disorder is triggered by ADHD med use. Just watch for weird behavior.

Ryansmom said...

Hi there,

I found your blog by Googling Intuniv and bipolar. We were just prescribed the titeration sample of Intuniv for my 7 year old son who has been dx bipolar I, ADHD, sensory integration disorder,PTSD and anxiety disorder. He is currently on Lamictal ODT and Melatonin and previously been on Ritalin and Clonadine. I'm so glad to have found your blog! We are really struggling with reactivism and impulsivity and opposition, as well as sensory seeking behaviors and inattention. It's been rough. I hope we have as much success as you have had with Intuniv!

Take care,

Dawn

Megan said...

Hi Dawn! I am glad you found me. Your son's multiple diagnosis sound a lot like my daughter's. I hope Intuniv will be helpful for him. Do you have a blog too? Hang in there. When Caroline was seven, that was such a hard year. It seems like we went through so many combinations of meds. Our daughter is stable now, but always a missed pill away from mania or depression or both.

Ryansmom said...

Hi again. Yes, we do have multiple complex dx too,(and still trying to sort it all out) but my little guy, who we fostered for a year beginning at age 3 1/2 and adopted at nearly 5 years old, has come so far already! We've been through years of therapies, medication trials, multiple dx, and still not "there" yet, but we do the best we can. Insurance is our biggest thorn right now. Plus I can only work part-time as my son's needs are so high at this time. I'm praying that this new med (Intuniv) will work for him.

I do have a blog where I write a little bit about our roller coaster ride. It's been therapeutic for me to journal, and I have even linked my son's therapist to entries that I think she needs to see, saving valuable time in the office. ;-)

http://doodlebugditch.blogspot.com/

I'm looking forward to reading more of your blog.

Take care,
Dawn

Stephennie said...

My 5 yr old son was just put on Intuniv, He was out of control I had to put him in MDO so I could have a break 2 days a week. He started this the week of Christmas and YES its 200.00 a month BUT WOW it works! He is yes Mam no Mam and please and thank-You... He even said today,mommy thank-you so much for giving meds I like being good! Our life is simple now!

Megan said...

Hi Stephennie, I am so glad that the Intuniv is working for your son! That's great. What is MDO?

Kim said...

I need help! Our son is taking Intuniv 3mg and it makes him so sleepy during school. So bad his teachers are calling. He takes it at 7pm and it still doesn't help. Has your child had the same problem and what time did the trick for you? Is there any vitamins or supplements they take that worked as well? Any help would be GREATLY appreachiated!
Thank you,
mom of a very sleepy son

Megan said...

Hi Kim. I am so sorry that your son is so sleepy with Intuniv. I know that over time the sleepiness can wear off as their bodies adjust. How old is your son? Is this the first ADHD med he has been on? I wonder if a little caffeine would actually be ok in the morning, like tea or something, even a bit of coffee with lots of cream and some sugar. Caffeine is actually calming for someone with ADHD in moderate amounts because it is a stimulant. Let me know. Megan

Lisa said...

Hi,

I found your blog by googling "Intuniv and sleepy". My 6 year old is on day 5 and it is making him so sleepy as well. The doctor advised us to take it in the mornings but I like your advice of switching to a night time dosage. I'll call the dr. today and see what she thinks. I'm not against "waiting it out" and seeing if his body will adjust but I'm not sure how long that would take. Our story seems similar to yours in that other meds that he's tried only made him angrier! Anyway, thanks for your blog and sharing information!
Lisa

Megan said...

Hi Lisa. I hope that the nighttime dosing will work for your son, or even a split dose like we are doing, 2mg in the am, and 2 in the pm. I know that 4mg in the morning was too much for our nine year old.

StephanieRN said...

My son has been on Intuniv for 2 1/2 weeks. He is still taking Vyvanse with it. We tried Intuniv alone this past weekend and he was still bouncing! Is there any financial assistance besides the $50.00 coupon the doctor gave me and the one I will get after joining the program? My insurance does not cover it and with the Vyvanse I am paying over $200.00 a month.

Megan said...

Stephanie, I am not sure about other discounts for Intuniv. I know that some psychiatrist will give as many sample kits as they can in situations where insurance won't pay for a brand name medicine. Also, many pharmaceutical companies have a program where if you cannot afford the meds you need, they can get you the meds free or at a reduced price, but there is some paperwork involved. I forget who makes Intuniv, but you may want to ask them.

Bobby said...

Hi All!

I just wanted to put in a hopefully helpful comment. I'm 27 and I was diagnosed with Bipolar disorder when I was very young. About 7 or 8. I've struggled my entire life and my teen years were a nightmare, which were also a time when my psychiatrists were trying to get me on a combo of meds that worked. Eventually I was put on Lamictal and it helped tremendously with Bipolar. I'm also a diagnosed ADHD/ADD and I was on meds for that, but it messed me up so bad that I quit. Now that I'm older, my ADD has really effected my career so I went back to a psychiatrist. He kept me on Lamictal and added Lithium. Apparently Lamictal only keeps you from dropping but Lithium keeps you from getting manic episodes. The only problem is over the past month we've tried almost all the stimulant based ADD pills. vyvanse works the best, but when it wears off I get irritated really easy and become kind of a zombie. The irritation I could deal with, but I have the sweetest girlfriend imaginable and I get so irritable even she can annoy me and that's not at all fair to her. I love her way too much to make her have to deal with that even if it's for a short time of the day. It also makes my blood pressure dangerously high, and because I do athletic training, this is very dangerous for me. We think I may just not be able to tolerate stimulants so today he gave me Intuniv to start. I've read nothing but good things about peoples kids on it so I'm hoping it will help. Anyways, since you said your daughter is bipolar, if you haven't already tried it I would highly recommend the Lamictal/Lithium-Carbonate combination. It helps so much. I started seeing my therapist when I was 16 or so, and about age 14 thru 19 were my worst years of battling bipolar and everything. Though I don't see her regularly anymore, when I saw her last a couple years ago she said every therapist has a patient who is the highlight of their career and I'm hers. I thank Lamictal for getting me on track. Also, balance is EXTREMELY important. Exercise, diet, sleep, social events are all very important. Once you get balance and the right combo of meds, it is an absolute miracle. I used to be shy and have extreme anxiety, now I'm in Business Development and Technical Recruiting which requires the ability to be very personable. Never thought I would reach this point but hopefully my words will help you and your daughter :) I wish you all the luck in the world. (Sorry this was pretty long)

Megan said...

Thank you Bobby so much for your helpful input! We think that the Lamictal-lithium combo is a great one too. We haven't added Intuniv into our bp daughters mix (yet) because she seems to be so much more able to focus with the amantadine. Our youngest takes Intuniv and it has been the miracle drug for her. She still is very moody, but not as explosive and spacey. Thanks for your comments!

Bobby said...

Oh ok. I didn't realize you were talking about 2 separate daughters :) Well I'm glad the Lamictal and Lithium work for her. I'm just hoping I can get my ADD under control without physically damaging my body with stimulants. BTW What is an amantadine and how does it work? I've never heard of it before. Thanks for the feedback!

Bobby said...

Also, the teen years are the worst especially with people suffering from bipolar. There will be some really, really tough days ahead for her but speaking from experience, even though she may feel like it will never get better, it will. It'll take a while to get through the teen years, but once she does she'll realize it was all worth it and may even be thankful she had to go through it. Kind of like a learning experience :) I don't know if she will have as tough a time as I did, but I had a lot of help from my parents and you and your husband sound like great parents and it's really good you recognize her problem and are able to help. That makes a huge difference. I've met people who are bipolar and never got help, and it's hard to believe that I have the same illness that causes a person to be like that. Keep doing what you have been and I'm sure she'll continue to make progress and be very successful in life :)

theresa said...

Megan, are you having the moodiness because of the Intuniv? we just took my daughter off of it because she was so miserable. My son is still taking it, but honestly he is a grouch!!!

stephanie said...

Megan,
Thanks for your response. We are waiting for a spot at Merridell but need to place our son somewhere in the interim. He is no able to function in the home safely. Were there any other places that you found to have the reputation that Merridell has? His anger is so out of control and he is not sleeping well at night and refuses to go to school. Are there any places in Va? It's overwhelming. did you find a list of treatment facilites somewhere? How do you know if they are good facilities? Our doctors are not much help here at all which is so frustrating!!

Megan said...

Virginia doesn't have the greatest RTC here, I wouldn't recommend it. There is one in Georgia called Inner Harbour, I believe, that looked really good. My husband found another one in Texas that isn't as well known as Meridell. I will ask him if he remembers the name. Have you thought of taking him to the nearest psychiatrist children's unit/hospital for the meantime? Our daughter stayed more than a month at once for acute in patient before she went to Meridell. It was the VCU Children's Treatment Center in Richmond and it was very good.

kristy said...

Amazing...I have a 14 yr old daughter with Bipolar,ADHD Sensory Integration and Aspergers! The Dr. handed me the sample box of Intuniv today and I am nervous, but this post makes me feel better!

-Kristy

Leigh said...

I just saw this blog because I was trying to see just how low a child's blood pressure could go being on Intuniv. My 10 year old son has taken 1mg/day for 2 days and his BP is around 80/40. He says he feels "weird"and doesn't want to take it anymore.

We have tried antidepressants, then added stimulants to no avail. The ADHD specialist referred us to a child psychiatrist due to her inability to find a med that would work. I have bipolar II and it is looking more and more like my son has rapid cycling bipolar...but it is all hard to tell. We tried Abilify yet it gave him nausea. We still tried to keep it low and added ridalin...but he still felt sick. He begged to come off the meds so we gave him a break. After a week he seemed depressed so the doctor put him on 25mg Zoloft...and then he seemed to ramp up and up and up. A therapist mentioned Intuniv (Tenex) b/c she had seen it help explosive kids like mine. The doctor said we could try it but he did not seem hopeful stating that in 10 years he had only seen it work with 2 kids.
He wants my son to try Lamictal as he states it will "protect his brain" if he is on a mood stabilizer. This is all soooo darn frustrating. I really want to help my soon but i hate trying med after med...I know I hate it and I am an adult.
I guess I am just putting it out there as I know you can relate. I just want some peace in our home and for my son.
Thanks

Megan said...

Leigh, I am so sorry that your son has been so difficult to figure out. We've been there and it is frustrating. The fact that he ramped up on Zoloft makes me highly suspicious that he is bipolar, and not tolerating stimulants could be another sign. BP kids usually cannot handle stimulants or antidepressants unless they are also on mood stabilizers. I agree with your doc that Lamictal, or another mood stabilizer, would "protect" your son's brain because if early onset bipolar goes untreated for too long, it can be worse in the long run than if they are stabilized while young. I would refer you to the book The Bipolar Child by Demitri Papolos for more information on all the medication options. Hang in there! But I would not leave him on Zoloft if he is displaying mania , as he could become so manic that he harms himself or others. You can read about what happened to my daughter under a March 2009 posting about how we figured out she was bipolar.

Sarahlynn78 said...

I see that ur blog is a couple years old... But... I just wanted to know if ur still happy with intuniv? My son is 14... With ADHD and cyclothymia. He is currently taking vyvance 60mg. And 7.5 abilify.He is has been on vyvance since 2007. We are now having major violent outbursts. I am at my witts end. :/. He smacked me in the face the other day. Our family doc has always prescribed for him but now he thinks he is not "stable" so he is uncomfortable altering meds. YET I can't get him into a physiatrist for over a months.. And I have called everyone in a 100 mile radius :/. I am thinking about asking the dr to try this since this isn't a stimulant. We have tried everything for shayne... Concerta, adderall, focalin, the patch, u name it :/...

Megan said...

Sarahlynne, I haven't posted for months, but I do try to read comments and answer. You need to get your son off of all stimulants fast, in my opinion. He sounds like he may be something more than ADHD, and if he does have a mood disorder, whether bipolar or mood dysregulation, a stimulant will make him irritable, and possibly violent. I would take him to a psych hospital for an immediate eval since he hit you. Lots of kids and adolescents end up admitted not because they are "crazy" but often because they were on the wrong meds that made them seem crazy and then they get on the right meds in acute care and are released and are required to be immediately seen by a psychiatrist within a short period of time. Find a really GOOD hospital (find reviews if you can ) because there are some that are not so great. But a great psych unit for adolescents can be a lifesaver. Don't be afraid to look into this. We were until things got way too out of control. Now we know what to do before it gets too bad, and a psych hospitalization can truly be a watershed.

Intuniv would be a far better choice for your son. Sometimes if mood stabilizers help significantly, a stimulant can be added later to the mix, but not often.

I wish you the best and peace for the holidays, which can be so hard to come by with a kid with a mood disorder. Prayers for you, my friend!

Anonymous said...

I have a grandaughter thats 6 who lives with me and was diag with adhd and they started her on intuniv. Fir 5 days now but i believ theyr still evaluating her threw counsling for other things..shes been a lil grouchy n morn but i think as day goes on it gets better..i think dhe may have bipolar but im not sur what fiff grim adhd to look for..