No doctor will care for Jon | ADHD Information

randyjim, do you think they need to see Jon monthly, or would it be equally good for the dr.s to hear your description of how things are going and then decide if things need to be adjusted? This could be done via email or phone. If they want direct contact w/ Jon, could they talk to him on the phone? Do they really need the visual observation? Just some thoughts to consider. I'm not saying never see them in person, but maybe it could be every three months or so once things are stabilized.

At this point, I'm in weekly contact w/ my child's dr. If it's a straightforward progress report, I send an email. Anything more complicated will be a phone conversation. I should explain that we're on weekly contact b/c ds just started Zoloft, and dr. wants to keep close tabs of how he's responding to it. My point is that there are ways around in-person visits where the dr. still gets all the info. he/she needs.

I asked my Jon's doctor if they could give us more than one month's prescription and they said no, unfortunately.

Reta- Naples is a lot closer. If you have the name of a doctor- please let me know. thanks. Have to run. the children are hungry!!

Hey There,

First of all I am new to the board but needed support and I noticed your post. We have our Dd that has ADD/Severe Anxiety, it has been a roller coaster for us in knowing how to treat, trust doctors, find answers...you know the drill. Anyhow, I noticed that you moved like we did recently and I left a wonderful, and I do mean wonderful Pediatrician, I cannot find anyone that will treat my Dd either and we were given enough meds to give us time to find someone. We are running out of time and the prospects are slim. The problem is she is not on the straight one medication for ADD that the docs only want to treat, otherwise they want her with a Psych. but trying to find one in this area with our insurance has been exasperating. We cannot change plans until open enrollment and than it does not take affect until Jan., because there are some docs on the list for our area we are not qualified to change. It is a plan that services mostly North Florida and we are now in Central Florida, there is a doc that treat ped. cases but she is not on our current plan and so we have to wait. When I finally did get an appt. with a Psych. and gave them our insurance at the time and they take it, the appt. was booked 3 months out...they than called and I missed the window to call back as the message did not get to us in time..therefore they cancelled our appt. So we are back at square one.

Our Dd is very bright but has a definite case of ADD/Anxiety. We had started her on meds. when she was 5 but she had a very bad reaction and we chose to pull her off, not to mention it was her Kindergarten year and a horrible one for her..her teacher was to say the least abusive and has no business teaching. The complaints are all the same in her classroom, she loses interest and goes off into her own world and than shuts them out...we had her repeat Kindergarten and it was a great year for her and medication free, when she entered first grade we went back down hill again because it became more structured, sitting at a desk etc. We tried a private school, but it really was no better and to be honest they turned to the Public System for assistance and testing etc. It made no sense because being private the Public Schools put them on the back burner, delaying any testing for learning disability etc. She struggles in Math. The anxiety manifested itself this past year and the sign were there early on before the big ones showed, but we just did not realize what they were at the time. We have three small children...it started with her rubbing the top of her head one day.. her finger when she would get anxious we now know would be what she used to rub her head, in public she looked like she was out of place as we could not get her to stop scratching her head, I looked for lice, treated her, tricked her with what I called magical shampoo to get rid of whatever it was, but it was a nervous condition. We now know that ADD comes with other conditions generally. She than began to worry herself over things, nothing we said or did could help ease her anxiety. She worried she would poison herself, obcessed on it to the point of really beginning to concern us. One day it was out of control and she thought she had drank gasoline, but was sitting in my lap the whole time, she just smelled the odor as we were riding in the back of our truck to go get gas for the mower, that was it I called the ped. and he spent over and hour with me on the phone on a Saturday going over what had occured. Than an episode happened at school and scared the teacher and us to death. She thought something in her mind was telling her to touch a dead bug....she cried hysterically and I called the ped. That was when we went back to meds. At first we thought we were going to end up in a Pshych Unit, but she quickly reacted well to the meds. One was fast acting and the other had to build up in her system and would take 30 days or so. She began to socialize which before she felt no one liked her, her self esteem was so low and as parents...

OOps I will come back, gotta go see the Fire Works.. Will come back...

I am in North Florida and my son goes to see his doctor every two months. His doctor writes us two prescriptions. On one he put a "do not fill before (date)". I have other friends that were given three prescriptions by their doctors with the same instructions on them. It can be done.

Have you tried Naples? My son's doctor has an office in Coral gables. I could ask if he knows anyone that might take Jon's case on your side of the state.

I am sorry for all that you are going through. I have been following you and
your family for some time now. I truly hope you get the help you guys need
and deserve.

The reluctance of doctors to treat your son can be traced to fear of
malpractice suits. It is sad but true. (I have several doctor friends whose
malpractice insurance premiums cost as much as my first house.) Anyway, I
feel for you guys and hope you find the help you need closer to home.

Hello there,

I am praying for you and your family. I'm am so glad that Jon is doing better on his meds. Don't give up trying to find an MD to take him on.

Here in Massachusetts our state laws recently changed. Our son's pyschopharm writes for three months. This law may be federal, not state. I would check it out.

Oh and by the way, even our pharmacy wasn't aware of the new law put into affect last spring, so not everybody seems to know.

Best wishes!

Thanks for the suggestions, y'all. I told my husband today that driving so far is very stressful for me. I am so afraid of having an accident. He told me to tell him when the next appointment is and he will ask his sergeant for the time off so he can drive us.

His doctors in Miami don't know of any here in Fort Myers. So, I still have to go to Miami. Plus- I have gotten an appointment with another neurologist for the middle of August but I know I have to start from the beginning with all of Jon's records.

I had to take Jon to his pediatrician today because of his cough. I thought it was his asthma acting up. It was worse. His lungs were not working at all to move air out. His doctor explained that our passages are the size of a large tube and jon's were the size of a small straw. She said his lungs could be damaged if he is not treated. So he had a breathing treatment there to open up his 'tubes' and now I have to get a breather with a spacer and give him allergy nose spray every day. Poor Jon. But he is doing so well otherwise.

You are all such a blessing to me! You lift me up and help me feel as though I am worthwhile!

I called yet another doctor here and can't get an appointment until almost the end of August and then it is just a preliminary appointment. They want records of all the doctors also so I know they will not take Jon on as a patient.

The psychiatrist in Miami said that Jon needs to come every month for them to write medication rx's. I think that is actually good because I feel better with Jon being monitored so closely just in case there is a change. He is such a darling but he is having a lot of allergy issues and I may have to take him to the pediatrician tomorrow. He is doing so well socially and at homeschool. I have school six days a week from 9am until noon or one during this summer. If they finish their work by Friday then Saturday is a Field Trip in the morning and a report during quiet time (which is one hour every day).

Today I went a little nuts and when Jon did really well on his writing assignment (neatly, also) I took my stamp with the 'thumbs up' stamp and stamped him up and down his arm. He loved it!! Isn't it amazing what peace there is inside us when our children are doing OK.

Again, thank you everyone. I could not have made it without you!

Randy

Randy......... isn't your DH a state trooper? If worse came to worse and you had to move closer to a larger city to get Jon the proper care and monitoring, could he transfer locations? I know many families who have a child with serious or complicated medical cases, and they had to pick up and move to a location closer to better care. Is that a possible option?

Okiemom
Could they not mail the Rx to you and maybe visit every other month? Just a thought...

Randy,

It's great to hear that Jon is doing so good. You sound like you are such a great mom. I wish I had half the patiace that you do. I don't know how you drive that far for a doctor's appointment with gas prices the way they are. Hopefully you can find some one closer that can take him on so you don't have to drive that far all the time. I really wish all the best for you and your family. Our prayers are with you!!

Jamie

Willsmama, I had the same thought. I know my son's dx offers to each month.

My son was on Concerta and maybe this is a State law but they wouldn't mail the script or post date one because it's a controled substance and we had to go sign for the script. Maybe Florida is the same?Our Psychiatrist writes for 1 month and mails the one for the 2nd month then we see him 1 month later.

Two thoughts - first - can the psychiatrist that is writing the prescriptions in Miami recommend someone closer to you? I find this maddening - they won't take on your son because they need all the records? Can you have a heart to heart with this Dr. and see if he can make a phone call for you and get you treatment.

No 2 - contact a lawyer - sounds like you have a medical practice case with all the misdiagnosis. I'm not one for law suits - In fact, I work for a lawyer who avoids them at all costs but your son seems to have been seriously hurt emotionally. Typically these cases are done on contingency basis so you would not have to front a fee - the lawyers would get 1/3 of the award. It's worth talking to one - consultations are free.

Good luck. My heart goes out for you.

Please know that our prayers are with you and your family!!

I really feel for you and hope that things get better!!

What has been done to your Jon is criminal. I also went throuth the mental health system as a teen. they misdiagnosed me mistreated me and to say my parents had to pay for that is criminal. iI think that once he is stabilized a littlle longer there should be a doctor(psychiatrist) who would be willing to take him on. Call your ins for refferals or just start calling people(that's what we did and he is not on our insurance but we only have to come every couple of months and he is reasonable.) I find it hard to imagine Noone will take him. You might have to get some recods, but I would feel better going in Doctor knows some history. and you have a med combo that works. Jon has serious issues and some medication will be necessary, but you need the minimal amount for the maximum effect. What he is on now sounds like a better combo. I wish you luck in finding a closer doctor.

So sorry for all that Jon, you, and your whole family have been through. It truly is criminal. Have you asked the dr.s in Miami if they know any psychiatrists in your town? Perhaps with their recommendation, someone would be willing to take on his care? Or, maybe a local dr. would be willing to take on the monthly checks if you continued doing phone consults with the Miami dr.s?

Like Vickie said, at a worst-case scenario, w/ a long period of being a "simple case" then local dr.s should be willing to take it on. That doesn't make things better now as you have to go all the way to Miami once a month, though.

If you can't get a local dr., is there any way to do local labwork and a phone consult w/ Miami? I'm not saying never go there, but maybe you could decrease it to every other month?

Also, for how long do they anticipate Jon needing to see them monthly? Maybe this is only a short-term problem?

I am so sorry for all you have been through. I am fairly new to this board but I have followed your story- it is so wrong for any child to be put through that. I'm glad that he's in a better place now- that is SUCH a victory compared to where he was a short while ago, and I truly hope that a professional, if not in your immediate area than at least somewhere closer than Miami, will the the full situation and take over Jon's case.

The local lab work and phone consult is a good idea. Does he go to Miami for therapy? Is that why every month? Sounds like they know their stuff. Have you had a heart to heart witht he doctor in Miami? Maybe he or she has a contact in fort Myers or maybe they'd be willing to communicate with a doctor in Fort Myers to get them to take Jon on as a team thing. It is so hard to read your story but not beable to be there to help. I wish I had money to send you! I know that's not what oyu are looking for. I know you were just venting but it's hard not to care and worry about peolpe here even though we don't really know each other.

Hi y'all. Jon is my 8 1/2 y/o adhd son. He has had a frightening several months that are behind us now. He was misdiagnosed by a child psychiatrist and put on meds that made him lose all control of himself and any semblence to a human being was gone. After trying to protect him (and others) from himself we made the decision to hospitalize him at Ruth Cooper Psychiatric Facility in Fort Myers. He was misdiagnosed at Ruth Cooper, given lab work which was never looked at ant showed dangerously high elevations of his liver enzymes from the mis-prescribed meds. Plus- they treated my son, who has never been away from home like a criminal. When he started crying after we left he was told if he didn't stop we could not visit him anymore. They locked all the children in their rooms. He was around teenagers with severely disturbing and graphic language. He had an ear infection and I bought in his medicine and they did not give it to him. After a week, they said he was stabilized and we took him home.

He was not stable. He was off the wall crazy. He was on Depacote, Zoloft, Clonidine, Risperadol. He tried running in roads, tried jumping out of moving vehicles, jumping off second story balconies, was like a wild person spitting, scratching, biting himself (and me) and he kept up with a keening wail that was horrible. He kept snarling (yes snarling) that he was going to kill himself, his brother and sister, his friends, his friends parents. He threw himself on the floor at the psychologist and was flailing around. I took him to his psychiatrist who took one look at him and called the sheriff to take him back to Ruth Cooper. He was Baker Acted. I had to sit on him while I was waiting for the sheriff because when he threw me off (he was strong) he would run outside and up to the second story and threaten to kill himself by jumping. When he got to Ruth Cooper a nurse or tech there told him that the sheriff should have taken him to jail because he was a bad boy. The attending psychiatrist did not look at his labs again and did not do anything to help my son. She kept the diagnosis as bipolar, major depressive, odd and whatever. I had Jon transferred to Jackson Memorial Hospital in Miami where a team of 6 professionals including psychiatrists, doctors, psychologists, social workers etc worked with him. First they took him off all the meds- both to get a baseline of his behavior and because of the liver enzymes being so elevated. Then, after observation, testing, and consulting, they diagnosed him adhd, mild depression, odd. They put him on a minimal dose of focalinxr (10mg) and .25mg of risperadol. Jon was so improved when he came home 9 days later and he has continued to improve so much that he is now acting better than his non-adhd brother and sister.

The problem is- no one here in Fort Myers will care for Jon and take over his meds from Miami. So once a month I have to get care for my two other young children and drive to Miami and back with Jon. We cannot afford the almost 0 each trip for gas and food. Plus, it is 6 hours or more round trip just driving. All the doctors say his case is "too complicated". They want all his medical records from the time he was originally dx'd at age 4 1/2. And even then they say they won't take him on because of his hospitalizations which were only caused by mis diagnoses and mistreatment.

Jon still talks about Ruth Cooper Center almost every day. When I tell him he will never go there again he says, "that's today but I don't know about tomorrow". And he is only 8! He has nightmares about that place. He still comes into my room to sleep on the floor because he is afraid of his dreams. It is horrible! And--- we have to pay Ruth Cooper 00!

Needed to vent.

Just sending a hug .

I hope that with longer stabilization, a local doc can take over treatment to make things easier for you and Jon.

I also want you to know that it will get better with time. My youngest went through violent tantrums, wanting to die, school and life failure prior to starting treatment and with the right meds, she is doing wonderful. We still need to make adjustments (was on risperdal for a while and may go back to it if needed) but it is managable and those past horrors seem like some movie we saw.

vickie39630.8750462963

Randy you are amazingly strong! Just to let you know we live in Central Florida part time and I know walgreens will give me one month of focalin and then tells me my date of the next pickup. It seems really odd that they wont give you more than one month. Also could you ask your doc to script it to 20mg. for the month using 10 mg pills. That way you would get 60 10 mg pills. and your child would just take one a day.I am not sure of the legality of that..but it was just a thought. Anyway I am glad he is doing better. You have really been put through so much! You are in our prayers.GOOD LUCK!

Hi- recuperating from Miami trip. Jon did not see his regular doctor- this is just a med clinic where they give you the script for the meds. The clinic misplaced Jon's files but i got the prescriptions anyway because I took photocopies of his med bottles and always keep them with me. They will not give more than one month at a time.

I was on the phone today with the psychiatrist up here who wants Jon's ekg's and lab reports from Miami (but the files are misplaced) She also wants to talk to the ped here who won't call until I get the hx from Jon's old ped in Gainesville. The ped in Gainesville charged me today to make a copy of his chart and send it to me. So i spent over an hour on the phone to various doctors. This is so crazy but I have to put up with it.

Meanwhile- we went to the behavioral psych appointment for Jon today and he told me Jon is doing great and there is no need to see him except once every three or four weeks!

Thanks again everyone.

Randy

I'm sorry to hear about all the run around your getting. But it sounds like things are going great for Jon!! How great!!

that's great news! A little too much work on your part but good thingd are happening.

Thanks for the info. I am going to the DEA website and printing this out. Maybe she will do this tomorrow for us.

randy

I'm glad to hear your son is doing better with these doctors. My ped was taking care of prescriptions for my son while he was just on the regular ADHD drugs. After we saw the pysch and she wanted to add tenex, my ped said she could still follow him and prescribe his meds. She just wanted documentation from the psych because she was uncomfortable with some of the other drugs. It is not her area of expertise. I decided to stick with the psych for the prescriptions because I know she is better at treating ADHD etc. My psych is only about a 15 minute drive farther than my ped. If she was very far away, I would have had the ped do it with the psychs approval.

Maybe you can get Jon's doctors in Miami and his ped to cooperate. Let the ped write the scripts and follow up with the dr's in Miami every 2 or 3 months. It could be they are not willing to do this until they feel he is stablized for a while longer.

Good luck, you and your family are in my prayers.

jigsaw39636.9650810185

Just an FYI-

The DEA is now allowing physicians to prescribe up to a 90-day supply of Schedule II controlled substances during a single office visit The prescriptions are only written for 30 days at a time. You can verify the informaiton on the DEA website. Jon's dr can do it if he wants to.

we just got 90 days of methylin ER twice day by mail order. I do this to save on copay as I only 2 months copay for three months of meds. We had NO problem. Then we see the doc in three months for a new script and weight BP check. If we need him in between we just call. We have to call in to have the 'scrip mailed to us or to stop in and pick it up, but we only have to see the doc every three or four months. Maybe after a significant amount of time on a stable dosage they will allow the same for Jon.BPQW39636.6270949074