Jon’s New Adventure | ADHD Information
Oh lethy proud mom, I am so sorry. You must be going out of your mind with worry! Let them take care of his heart first and then work with the specialists about the other.
We parents should form an alliance to get research into helping our children. Their voices need to be heard and heeded!!! Their cries for help need to be listened to!! I would love to march on Washington DC and DEMAND that money that is being spent overseas should be spent on our children who are the future of this country- FIRST!!!
God bless you and your son. We will all be praying for you!
Randy
i am happy and scared and upside down and tired!! If any of you have a child and are needing help the hospital in Miami might be just the thing. I know I am rambling so please forgive me....
We got up so very early this morning and drove the 3+ hours to Miami to get to the intake team meeting at the Jackson Memorial Hospital children's mental health inpatient unit.
We met in a tiny room with the director of the children's unit who is a child psychiatrist, another child psychiatrist who would be leading Jon's team, a psychologist or two, a medical student, social worker etc. They interviewed my husband and me for an hour asking questions about Jon that no one has asked before- very pointed and direct questions and they took his history with the first med he every took, his first diagnosis, the ADHD clinic at Shand's hospital etc.
Then, with us out of the unit they interviewed Jon and asked him specific questions, observed his behavior and asked questions about it, got with the nurses and asked them questions about specific behaviors they saw etc.
Then the team met with us again. They had their diagnosis and treatment plan. They said that Jon was NOT bipolar, he was diagnosed with ADHD, hopefully temporary ODD and he was very depressed. They also said the combinations of medications he was given had totally knocked his emotional and mental and physical system off kilter and pretty much caused the decompensation (I think that is their word) we saw. In other words the medication made him lose his marbles.
The action plan: they took Jon off ALL the medication he was on. They intend to give him 5mg of focalin to see how he reacts to it. They will give him risperdal if he has anger issues but only if necessary and they can't talk him down with the information we gave them (Jon loves fishing and talking about black tipped sharks). If he gets extremely agitated and tries to hurt himself or anyone else they will, as a last resort, give him a shot of benedryl.
They are giving him an EKG and testing his heart to see if the very high doses of adderallxr and clonidine has done any damage. If they think he needs an mri of his brain they will give it to him but they don't think he needs it.
James and I feel as though he is in great hands and is getting the best care. We also feel that the doctors and psychiatrists and crisis stabilization unit here in Fort Myers did not do one thing correctly. We are going to use the doctors in the hospital there to follow his treatment after he comes home. If we have to drive to Miami once a month it will be worth it because Jon is worth it.
OK. Jon was so very teary and missed us so much. The team told us that Jon loves and trusts us and his attachment to us is normal. He feels terrible about hurting me and so they will work with him on his feelings. I told him that he was not responsible and I accept his apology and will always forgive and love him. He is our smoosh. he did not want us to leave and knows we can't visit him each day so it is hard for him. I did xerox my hand for him so he can put his hand on it and 'be' with me. He thought of this first- he traced his little hand when he was in Fort Myer's crisis center and gave it to me so I could press my hand against it when I missed him. He said that would help me not cry.
So- I am so hopeful and so afraid. I am afraid to hope that the worst might soon be over. I pray that it will be over. I am still getting calls from various professionals from the hospital asking me questions about his education: what I am most concerned about if he goes back to his school (they are going to speak to his school and may decide it would be best to not send him back). I had calls asking me about Jon's siblings and what I think can be done to help them all integrate together again and what they feel should be done.
When Jon told the nurse that he was afraid to go to sleep at night, they told him that they would have someone stay with him or he could take his mattress and bring it to the nurses station and sleep there if it would make him feel better. They are all about HIM and his feelings. I am so glad he is there.
Excuse my rambling; I am so so very happy that he is being cared for and loved during this very difficult time for him and I am so thankful that he may be home sometime next week. We are incomplete without him!
Randy
randyjim39556.7517476852oh Randy, you must feel so much better just knowing he is with people who actually care about him. Sounds like exactly where he needs to be. wow, I am so very happy for you. My son whom we were so happy with has had a huge set back today. We are in the childrens hospital where we are from. He had his normal monthly visit with his physch today when my jd told his dr. That his chest was hurting him very bad. He told him it felt like a screwdriver was being drilled into his chest. They did an ekg on the spot and it came back very abnormal. His phsych told us to go immediately to his pedi. His pedi checked him out and had him rushed to the childrens hospital an hour away. The dr states that the meds that they said he needed to take to keep him from taking his life are slowly killing him. Those are his words not mine. I am so sick with worry. I thought that all of our bad days where over. How can I give him meds that will kill him, but how can I let him go back to the child he was before his meds.Unreal! I thought Jon was doing so well in the crisis stabilization unit even though he was just there last week. Well, I called the unit to speak to the psychiatrist there and asked about the extremely high liver enzyme levels in the lab results from last week. She did not remember pulling the labs and I had to tell her the labs were in his file from last week. So she decided to wean Jon off the depakote starting immediately. She also told me that Jon is not stabilized, that his mood swings from highs to lows and he gets very agitated and angry- exactly opposite of what I have been told.
Jon also called me very teary and told me that one of the techs there that had been nice to him last week told him he was really bad to have to come back so soon and she did not want him to speak to her!!!!!
After over 35 phone calls in a 30 minute time frame, Jon was released from the crisis center and we drove him down to Jackson Memorial Hospital to the children's inpatient mental health unit in Miami. We just got home and have to get up at 4:30am to drive back to Miami for a meeting with the director of the unit, the unit psychiatrist and others to plan what evaluations and solutions are possible.
Jon was so excited to be out of the Fort Myer's crisis unit but was so sad and afraid of being down in Miami. He was jumping up and down, down and up and you could see him cycling. I know that he will receive much better care there- I just wish it wasn't so far because I won't be able to visit him every day. So, we have new hope for Jon. I only pray that he is still the soft young 8 year old when all this is over and he is not hardened by these horrible experiences.
(((((randyjim & Jon & Family))))You and your family are in my thoughts and prayers. You are a great mom and doing everything you can for your son.Hopefully Jon will now get the help he needs. Hang in there. I know this ride has been rough. We are praying for you.You must be emotionally and physically exhausted. You and your family arein my thoughts and prayers.
lethy proud mom: how is jd today?
Jon cried the entire time I visited him today. It took me almost 6 hours round trip. I am wondering if it is better if I do not visit him for a few days. He seemed to be doing well except for the crying- he is homesick.
RandyJim and lethy mom your families will be in my prayers. May everyone lift these families up.
randyjim and lethymom I'm hoping this thread can be for both of you. I've thought about you both today and hope you'll both keep us posted on your little guys. My heart breaks for all of you.Thank you so much randy. I agree with you 100 percent. Thanks for your support. My prayers are with your family as well.
randyjim,
Such good news! I can only imagine your relief. It will still be a long haul for all of you. Prayers continuing.
randy and lethy proud mom~My thoughts and prayers are with both of you....
Jon sounded great when I called him today- actually I called three times and each time he wanted to get off the phone to 1. watch King Kong, 2.Play a miniature pool game, and 3.Play a game boy that they have there when the children get bored. So i am happy that he is adjusting but he still keeps asking me when he can come home. He told me that when they tell me it will take three hours to get there and why can't I fly because then it would be faster!!!
Tomorrow I will speak with the doctors, I hope, and see what is what.
That is great news randyjim. Your son is starting to come around. Yes they do let me stay with him. I would have it no other way. They also have a aid in the room 24/7, because he is so severely adhd and bipolar along with his odd and aspergers. At first I thought this would be uncomfortable but it is not. It is kinda nice. He is so very hyper active. His autism makes him scream loud for nothing when he gets stressed. I am bipolar so the noise realy gets my nerves rattled. I think I will have to increase my meds j/k lol. When I feel too overwhelmed I go to hallway for a few minutes to regroup. So that he always sees me fresh. The last thing he needs is for me to have a meltdown myself. I love him sooooo much and can't wait to hear he is okay. I need this kid in my life. I could NEVER go on without him. He has to be okay. And I feel in my heart he will.randyjim, my prayers have been with your family.
I think you are doing right by having your other two children see a therpaist. May I suggest they see a play therapist. Play therapy will allow them to express themself through play. Play therapists are wonderful and have special credentials on top of their counseling degrees. Take care and God Bless. 
Randyjim it is so great to know that your jon is getting the help that he needs. I can only imagine how tough this time is for your family. Just stay strong. About going to see him everyday or not just do what is best for your family as a whole. Remember you can't outlive God's grace. My pastor always tells me that. It helps me to know that I don't always do the right thing but that I am honestly doing my best. I may not of always do what I am suppose to do. But I am where I am suppose to be. Sending lots of love and prayers to you and your jon from me and mine.lethy proud mom39557.935474537
Thanks for your prayers and thoughts everyone. Lethy proud mom- do they let you stay with jd? I can only see Jon for an hour or two a day. Today he had such dark circles under his eyes. I know I can't visit him today, Sunday, I just can't drive back and forth again because I have been unable to sleep all night thinking about Jon all alone and wanting to come home so much. I miss him.
I am hopeful that his heart is OK and his liver enzymes are becoming more normal. I am going to ask his doctors about natural alternatives: such as Omega 3,6, 9's.
Come this week I am going to see about counseling for my 6 and 9 y/o. This has been so hard on them and my 9 y/o son is very weepy and my 6 y/o very screamy if she can't get her own way. They need someone besides my husband and me to talk to about their feelings.
Hope jd is feeling better. Are the docs giving him any heart meds? My prayers are with both of you.
Randy
Lethy proud Mom and Randyjim.
Thinking of you both and praying that all continues to go well for you. You are both very strong women and I know your hearts are aching for your little boys..
It is sooo wonderful to have my smoosh back the way he is supposed to be (Jon, that is). I had forgotten how handsome, what a wonderful sense of humor, how sweet and helpful and obedient he is. Without the anxiety of school he is starting to blossom and want to do many more activies.
He also wants to sue all the doctors that made him so ill by misdx'ng and mismedicating. Every day he tells me he is OK today but tomorrow he doesn't know if they will make him go back to the hospital. i told him no one is making him go back to the hospital and that he can trust me to know if his meds are not right that we can go visit the dr in Miami and come home the same day.
He is trying so hard to be good. He still needs a little more structure for homeschooling but that is slowly being built up as far as learning time. I am not pushing him as he is still pretty fragile.
Happy Mother's Day.
We have seen the best and the worst that doctors and medication can do and each day is a gift now.
I am finally home with Jon. We go back on Tuesday for an appointment (outpatient) with his lead psychiatrist.
Jon is testing testing testing. I had to stop to get his meds and he was running up and down and touching everything. I finally grabbed a box of benedryl and gave him 2 (children's). Didn't help a bit. He is happy to be home and enjoyed dinner.
Do you all think his talking back, sticking his tongue out at me and other horrible actions (such as mooning me) are just due to his anxiety? His doctor said he has a great deal of anxiety and I think this is the way it manifests itself. I told him there were behaviors that were not permitted and I know he knows that he is not supposed to do them but he is very adhd right now although he is in bed watching his TV.
I am so happy to have him back here. Everytime he does something wrong he asks me if I am going to bring him back 'there'... so I guess I answered my own question. I think he grew 6" in the almost three weeks. He is so tall for 8. He is about 4'8".
Tomorrow I am letting the children off from school and we are going to the beach to run around and relax and just have fun. Our family is complete again.
jRandy
I am so glad to hear that he is home. Jd is also testing me. My sweetie could only get 1 worksheet done today. His dr. Told me to make him take it easy and not to exert him self. Don't they remeber he is adhd. Lol. We all do our best.I haven't posted here for such a long time. I drove to Miami today for Jon's appointment. It took so many hours because I got very tired on the way there and pulled into a rest stop and fell asleep for a few minutes.
Great news! The doctor was thinking she was going to have to raise Jon's Focalin since it is such a low dose but since he is doing well she is leaving it at 10mg XR in the AM and 5mg at noon. She is afraid of the damage to his liver that the strattera and depakote did and so she stopped his Risperadol in the evenings and hopefully his liver will repair itself.
I actually told the doctor that I wished my 9 and 6 y/o were as good as Jon - what a change from a month or so ago when he had to be hospitalized. I notice that Jon gets very angry when people are confrontational with him- so I am careful to state the behavior that needs changing and not attribute it to him. I am trying to get my husband to do the same thing. for example: if Jon leaves his clothes and towels all over the floor, instead of saying: "Jon, pick up your clothes and towels. You left them on the floor." I now say, "Jon, one of our safety rules is to make sure there is nothing on the floor to trip on. Please help me look and check like a good boy." He will run from room to room and pick up everything and then he can be rewarded with a hug or a treat such as frozen yogurt.
When he gets angry I don't engage him, I hug him and tell him when he is calm we will find out what to do to help him. it usually works. Tonight, my daughter spilled a quart of soap in the garage and my husband started yelling at Jon to 'get out there and clean your mess all up.' Jon went ballistic and I hurried to him and held him tight until he stopped thrashing around and then I told my husband it was our daughter. he appologized to Jon but he said he just assumed it was Jon (which was just as bad). I told him that Jon is trying hard and while he makes mistakes he needs to find out who messed up and not accuse anyone. We still have a lot of work to do but we are slowly moving toward letting the children take control and responsibility for their actions without fear of reprisals.
Well, we had to give Jon his Risperadol this evening. I will call Miami on Tuesday to tell his doctors down there but he has two doctor appointments up here on Tuesday, also.
Without the Risperadol Jon did not sleep until after 2:30am. He had been going to sleep just fine on it at 8:30-9pm. Also, he had started to go bonkers at night destroying things and writing on carpets etc. The worst was that he kept calling himself horrible names and saying he was going to hurt himself. I believe he said it because when questioned he told me he didn't want to hurt himself but that his brain wasn't working right. Poor boy! The risperadol works fairly quickly in calming him down. 30-40 minutes after taking it he was smiling and ready for bed. It makes me so sad to know how off kilter our kids can be when the medication isn't right.
I'm glad things are looking up for Jon. So exciting to hear
[QUOTE=randyjim]
It makes me so sad to know how off kilter our kids can be when the medication isn't right.
[/QUOTE]
DITTO!
This week my daughter hs a cold along with her allergies and her meds are not quite cutting it, she looked at me in tears one day saying sometimes my head is all fuzzy and I cant think or know what to do 
. Breaks your heart. I am heartbroken it's this way for her, but also thankful it does pass and we do have meds that work most of the time.
--- wasn't it when there was a change (or continual changes) in Jon's medication dosage etc. that Jon's brain got overwhelmed last time? perhaps he, particularly, finds the changing dosage really hard on his brain... the introduction or the withdrawal. and maybe the stability is, for him, the most important or, at least, the easiest thing for his brain.
may be of no relevance or just coincidental - but i suppose it could be that his brain might be more susceptible to the sudden influx or reduction of these chemicals... in which case there might always be a period of violent unsettledness when change is introduced.
We drove to Miami again this morning. Jon is starting to really enjoy himself there although he still can't wait to come home. We met with his team- a doctor, psychiatrist, social worker, etc and he is progressing well. We were asked pointed questions about how the stimulants affected him and rebound problems. They are also going to take our insurance for outpatient visits although they have not done this before.
So- they will fine tune his meds and teach him a few more coping skills and he should be able to come home at the end of the week with us then taking him back for a checkup next Tuesday.
I am so happy he will be coming home.
Sounds like good progress is being made and that Jon is being well caredfor. Enjoy your visit! Hope Jon gets to come home soon!
Randy, I am so glad that Jon is in a truly helpful and healthy place....you made a great decision. I have been thinking of you and yours often.
Lethymom....I am so sorry to read about your sons health issues. Keeping you in my thoughts.
I spoke to Jon tonight. I was unable to talk to him all day. He asked me if I was dead....because he hasn't seen me for several days. Oh, my poor son. Then he told me that a man scared him very much. I asked what happened and he said the man told him that he "hangs bad little boys by their toes". Jon's voice was so little and frightened. I asked him the name of the man and then I told him to let me speak to the nurse. I told the nurse what happened and they were not very happy and said they would take care of it immediately. I told the nurse I did not want that person near Jon again and I don't want to hear that the man retaliated against Jon. Thank GOD we are going there tomorrow. I am going to pursue this with the team then.
Two steps forward and now how many back???? I am feeling so sick about this. I am glad my husband is going tomorrow. If that man is there I will make myself heard LOUD AND CLEAR to him,.
[QUOTE=lethy proud mom]
wow, I am so very happy for you. My son whom we were so happy with has had a huge set back today. We are in the childrens hospital where we are from. He had his normal monthly visit with his physch today when my jd told his dr. That his chest was hurting him very bad. He told him it felt like a screwdriver was being drilled into his chest. They did an ekg on the spot and it came back very abnormal. His phsych told us to go immediately to his pedi. His pedi checked him out and had him rushed to the childrens hospital an hour away. The dr states that the meds that they said he needed to take to keep him from taking his life are slowly killing him. Those are his words not mine. I am so sick with worry. I thought that all of our bad days where over. How can I give him meds that will kill him, but how can I let him go back to the child he was before his meds. [/QUOTE]I too had this happen to my daughter she had heart problems on both adderallxr and focalin but we found out early because each time we start a new med we get an ekg. She is now on dexadrine and her last ekg was normal. My daughters Pysch. said that there are enzymes in these meds that kids with adhd can't break down and thats why they can cause these problems and that dexadrine didn't have them so there for they are easier to break down. Im sure that Im not totally explaining that 100% but that is the jist of it. My heart goes out to you and I hope that your son gets the help he needs this is such a hard thing to go through.
Randyjim you too are in my prayers.
oh Randy I am so happy for you all that Jon is coming home. I hope that you can all now begin to build and move forward! I'm keeping my fingers crossed this transition goes fairly smoothly for you all.
I am driving down to Miami tomorrow. Jon is finally coming home! Then we have to drive back with him for a visit on Tuesday to make sure his meds are working as they should be.
I am excited and nervous. I am praying we never have to go through this again. Poor Jon. This is tough for an 8 year old. I hope he understands that he is a good boy and that the meds made him lose control of himself!
Yeah!!!!!I know that you are so glad. I am tickeled pink for you.You have both been through so much! I am praying for you as well.What would we do without each other and our understanding friends?
good news!! Hope all works out for you !
Such good news! I'll be thinking of you guys.Hi y'all. An update on Jon. I spoke to his lead doctor this morning. His ekg is Normal except for some arrhythmias. The doctor said that she knows his liver enzymes will still be very high so she did not test for them this time. He is on 10mg of focalin in the morning and .25mg of Risperdal in the afternoons. His severe depression is probably re-active: that is, situational. He had a better day yesterday and participated in some of the activities.
This week they are having a teacher come in and school him and will see how he does (concentration, hyperactivity, anxiety, irritibility etc). My husband and I are driving down again tomorrow for a meeting with the head doctor and I think other members of his team. They want Jon to go for behavioral therapy once a week so I called our psychologist here and we are setting that up plus setting up appointments for our 9 y/o and 6 y/o and the family.
I told the doctor in Miami that I would bring Jon to Miami for all his follow-ups. She is happy with that and said she will personally see Jon 1x per month and we will have labs work done every three months. But, so far, they have not set up anything for him to come home. I believe they want to make sure he is stabile before that happens but I will know more tomorrow. It will be a long day but we will be able to see Jon after the meeting!!