WWYD?? (This is LONG)
Have a seat cause this is gonna be long.....So in my struggles with dealing with Cooper and his many needs I find myself completely frustrated with the medical community.
So lets start back a few months ago...after being told by the pedi that he didnt want to start testing for ADD on Cooper til he was in kindergarten. So I waited at his request...then Cooper's behavior started going downhill..and fast. So back to the pedis office I went. This time he walked in and said..."well what are we seeing Cooper for today..." and I lost it. Crying and begging him for help. So he finally agreed to start ADD testing....I was handed a lab slip and told that I would hear from his staff about getting an EEG done. 3 flippin weeks and multiple phone calls from me later we finally have an order for an EEG. Get that done...its normal. Labs done and normal for the most part.
So off to the neurologist we go for a consult. We have a good first visit with him. We bring up the fact that Cooper will stay up late at night regardless of lights on or off, tv on or off...also tell him that Cooper has bitten all of his fingernails off and has now taken to biting his toenails and the skin on the bottoms of his toes....He tells is that Cooper has ADHD( they no longer dx ADD alone), Anxiety, OCD and a "touch " of Aspergers. So off we were with a Rx for Clonidine. According to the Neuro Cooper's anxiety is such that his body cannot relax enough to fall asleep even though it wants to. So he stays awake till nearly midnight.....Ok I can buy that. So we start the Clonidine at night and yes it does work. Cooper is now asleep by 9pm at the lastest. Hooray!
Time for a follow up with the Neuro about 6 weeks later.....After waiting in the waiting room for 1.5 hours (how you expect special needs kids to wait that long is beyond me) he comes in...ask how things are going..I plopped Cooper on the table ripped off his shoes and socks and showed the Dr his feet and said...while he is sleeping better...THIS is not changing. Cooper has hamburger looking feet. He is constantly chewing the skins off. So much that they bleed now. He said..."oh well I didnt know it was this bad....." Cooper has Severe OCD and Severe Anxiety....ok great..what are we going to do about it. He looks me in my eyes (as I am tearing up) and says..let me help your child....Here is a Rx for Prozac. I was flabbergasted..I asked about OT, behavioral therapy, mental health, a nutritionist...he tells me that Cooper is too young for mental health but that OT may be warranted. He gave me the Rx for Prozac and for OT and Behavioral Therapy. I held the Rx for Prozac for over a week cause I really do not want my 5 year old on it. I faxed the OT/Behavioral Therapy to our pedis office amd asked that they please get this started. A couple weeks went by...and finally I called and left a message for the Dr to call me. He phoned that evening and said that OT was basically not gonna happen because of insurance reasons per his staff....um ok? So I (being a medical insurance specialist and a biller for the past 10 years) called the kids Health Net through Healthy Families (DH is unemployed which is why we have this coverage) to find out that yes, OT IS A BENEFIT! Just needs to be authorized through the medical group (Hills Physicians). So I call the main office in San Ramon to find out to see what the problem is...do they not contract with any OT's? Cause if they do not and it is a benefit then I can go outside of my network and they have to authorize it......The nice woman tells me that they have lots of contracts...she asked for my zip code and gave me the names of 7 places nearby..and offered more if I wanted them. I called the first one on the list....they do not do pediatrics..ok fine. I called the next one...yes they do see pediatric patients....and they can get me scheduled within a week. This is great news.....So I called the pedis office back and spoke with the girl who does the authorizations and asked her what exactly the problem is and why did Dr W tell me that OT wasnt gonna happen.. She said that Berger PT does not have the pediatric contract. Well no *** sherlock......I asked her if she was aware that she has more than one contracted facility? That Mercy Outpatient Rehab does pediatrics and can get me in within a week. I told her I wanted that referral done and approved within the next 48 hours cause I was tired of waiting. Ok fine...so it is done because I did all the legwork. We go to see the OT...she tells us that Cooper has very poor muscle tone. It is like placing a 20lb backpack on a normal child and watching him/her do his/her daily tasks. That is how hard my little boys body with working to function each and every day. Heartbreaking! That was on March 8th. The OT was going to try and get some visits authorized so she can work with Cooper. So here we are on March 29....According to the medical group a request for OT wasnt even submitted til the 18th and is now at a second level review....
But oh wait....there is more...
Cooper has been faithfully taking the Prozac every morning for almost 2 months now. I am not really seeing any changes in him. We have had 1 more follow up with the Neuro and he said to keep him on it for a little while longer and let it fully take effect. The chewing is getting worse...he now bleeds often througout the week, still doesnt have proper behavior at home, pushes little brother down for no reason, hits the animals, throws objects at DH and flat out doesnt listen at times. Let me add that he is very good and on task at school. He is not bad 100% of the time at home..but a good 65% of it is very trying....This past weekend the boys stayed the night at my parents house and when DH went to go pick them up from there....they were all hanging out and Cooper was chewing on the wrist/palm of his hands (this is his new spot to chew) when he tore the skin so much that he started to bleed. He got very upset and said "This is all my fault, I cannot believe I did this. i am bleeding....OMG...I just want to kill myself off" OMFG! My 5 year old just said that he wants to die. Now I know that the pharmacist said to watch out for suicidal thoughts. I never really thought that it would happen though. So I left a message for the Neuro to call me asap cause I want my kid OFF the Prozac. He called last night at 745pm and left me a message to stop the meds immediately and to make a follow up appt.
So here I sit...feeling like the medical community has failed us. My son still chews....I do not know where to turn. I do not know which type of Doctor he should be seeing. I am still waiting for OT, does he need a psychiatrist, psychologist, behavioral therapy, a nutritionist, a new primary care that will take some control over his staff? We are limited because of the health insurance. I have the option to change medical groups and doctors...just need to find a good one and hope that they are aggressive in helping our boy.
What would you do? Where would you start?
If you read this entier thing.....I owe you a cup of coffee or a drink of sorts...and please take me up on the offer!
Re: WWYD?? (This is LONG)
I'm going to call mental health (I have a contact there) - he is not too young for mental health services.
Let me see what I can do. I will message you on FB.
Hi, I am going to offer some of my personal findings from the last 6 years dealing with my son's ADHD and other behavioral issues. They may or may not be of help to you, but this is what I have found. Please keep in mind that my family fights a battle a lot for most tasks- eating, getting dressed, personal hygiene, homework, ect. But, there is help available and there are good doctors out there. I just don't want you to be falsely hopeful that I have found some miracle cure for the issues that I deal with.
I think first and foremost, you should get yourself to a parenting support group for special needs children. You can not do this by yourself or really even with the help of well meaning friends who have no idea what you are dealing with. Try looking up your local CHADD chapter or PHP. They offer online & in-person groups for parents trying to navigate all of this.
Also, I am really confused why a neuro is prescribing any of this medication, and you are not under the direct supervision of a psychiatristst. We have Healthy Families as well, and through Kaiser, I have been able to get access to all types of doctors as well as group therapy for my son for a variety of issues like anger management and anxiety. I know open enrollment is coming up, so maybe you could look into another type of HF that might be better suited to your needs?
Along with a Psychiatrist, we regularly see therapists in a family and one on one setting. This helps a lot for me and my son.
We have a consult with a nutritionist in two weeks to attempt an elimination type diet to verify that food sensitivity are not causing any of his issues, as the Psychiatrist thinks that a mood stabilizer may be beneficial. I am terrified to try it, due to all of the side effects, so I am going through everything else first.
I am so so sorry that you are going through all this. It is so incredibly hard, and at times, it feels so incredibly frustrating. I still have times where I feel completely out of control and that the dr's aren't doing enough, but every time, they listen to me, and address my concerns with compassion, and provide me with helpful reading information or links to other references. If your doctors aren't doint this for you, I would start shopping around.
If you ever want to talk about things or get more info, feel free to PM me at any time.
C, I have a few calls out and waiting for them to call me back. I talked to a program manager at mental health and she recommends a multi-disciplinary team to assess Cooper. I have a call out to a group that does this type of stuff. The person I contacted focuses on children ages 0-5, I'm crossing my fingers that she's able to help you.
In the meantime, I want to send you huge hugs and tell you how sorry I am that the medical community is failing you and Cooper. This must be beyond frustrating.
First, huge huge hugs to you. I can not imagine what you are going through.
Is the doc who is prescribing the meds a neuro, or a neuropsychologist? It seems a bit odd that a neurologist would be prescribing those meds without at least confering with a psychiatrist. I'm a kaiser gal, so I'm not familiar with the process for getting approval from other insurance companies (outside of workers comp), but it seems crazy that the delays are so long.
Can you seek info/help from 211, I know they deal with helping people get health care.
Hopefully Carmen can get you in touch with someone who can help.
Hugs.
First of all, big, big hugs. I wish I were closer so I could take you out for a drink or come watch the boys for you so you could have an hour or two of quiet.
I couldn't tell by searching if Healthy Families has any Developmental Pediatricians on contract, but I wouldn't be surprised if they don't. A lot of them don't take any type of insurance but HF may have some type of option for paying for a needed eval. I found one private practice DP in Davis that has good reviews and then there is the M.I.N.D. Institute at Davis Medical Center which has an incredible reputation.In your shoes I would get in with the first DP I could and get on the list for MIND since they may have quite a wait. If you have to pay out of pocket, I totally get the feeling of there is no where to pull it from but maybe you're family could help out or something, IDK, but I really think he needs the overall approach of a developmental pedi.
MIND also has clinical studies which Cooper may be eligible for regardless of insurance issues.
https://www.ucdmc.ucdavis.edu/mindinstitute/
https://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/Stephen-Nowicki-MD-B4192629.cfm
Please let me know if there is anything I can do to help, even if it's just listen. My email is nest name @ yahoo.com and I am always here for, even if it's just a vent.
Please call me. I can put you in touch with people who can help point you in the right direction. Your poor little guy has been failed by his pediatrician. Since you're in San Ramon, you have a number of local options. Many of them don't work through insurance unfortunately though.
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Harmony Doula
I am so, so sorry you are dealing with this - you've both been failed on so many levels. I hope the ladies on here that have resources can help get Cooper the attention he needs. If I had to pay out of pocket to see the right person, I would. We did when we were in IF treatment eventually.
I'm so sorry honey, the stress has got to be completely unbearable. Big hugs.
Thank you. I am glad I am not the only one who thinks their heads are shoved in no mans land
Carmen...thank you so much. I know you have given me great resources before. I hate having to air all my dirty laundry onhere but I need help...my DH and I are clueless at this point. I look forward to your info....Hugs to you!
I'm so sorry. You are doing an incredible job as Cooper's advocate, and I really feel like that is what's necessary. The drs aren't moving as fast as you need them too, but your pushing is really helping. Its long and hard and trying (for you), but if you look back at what you've written, you HAVE accomplished a lot in the last months.
You are doing a terrific job in a very difficult situation, and you have my respect and awe. HUGS.
Ditto what bunch said! Give yourself a big hug and room to breathe - you're doing an awesome job as his advocate.
Actually I know a child psych who take insurances -- a friend of mine studied with him. Robert Root, at CPMC in SF. His specialty is children with anxiety disorders. He'd be able to tell you probably if you're looking at a sensory integration issue as well. It's a Dx that is finally on the books and can be parsed out from OCD.
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Harmony Doula
I am saving your email address...thanks. I will also look into the MIND institute....I already tried to get Coop in with Alta Regional and he didnt qualify cause he is not full blown autistic. As for the Developmental Pediatricians.....I do not think there is any. Thanks for the links
C, I am so sorry you are going through this! I hope you are able to connect with a team who can help and support you. I can offer no advice, but you do not have to do this alone. There are services and organizations that can guide you through this. I am so glad Carmen chimed in. She is the first one who came to mind, to offer you local advice.
Also, I would talk to his teachers about what is helping in the class room. It may be beneficial to you to continue at home.
Lot's of hugs and thoughts for you and the family. I need to take a trip up to Sac and meet up with you gals again. You're all a blast.
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C, I'm glad you have an outlet to let it out. I just wish I could do more. I'm still waiting to hear back from the lady that focuses on 0-5. As soon as I hear from her (hopefully tomorrow), I will talk to her and see what she can do. Huge hugs to you!!
I am so sorry. It makes me cringe to see this because I hate to hear about getting lousy treatment from doctors.
1. I am pretty sure I mentioned the MIND institute the last time you posted about this, so I agree with that rec completely. They do a thorough eval of all the issues in one place if you can get in there.
2. Cooper should be seeing either a developmental pediatrician or a psychiatrist. I am more in line with the psychiatrist at this point since the issues seem to be a little more complex.
3. Please feel free to email me,(bumpname at gmail dot com) I don't like to post where i work on this board but it would also be a great place for Cooper if you were close enough to come and I do believe some forms of HF are accepted. We have many resources and I regularly refer to departments of OT, PT, Psychiatry, psychologist (BTW, a psychiatrist will not do therapy they work in conjunction with a psychotherapist). I don't even know why an EEG was done. We also have nutritionists.
4. Generally children are given Zoloft, not Prozac if it is deemed appropriate treatment because it was the only SSRI that was not given a black box warning for suicidal ideation.
I do see you have gotten some great advice here but I am also available if you need more help.
Huge hugs C, I know you are doing everything you can and I know its gotta be completely exhausting . Please let me know if you need anything !
hugs
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Please forgive me for not reading your whole post - or all the replies as I'm at work and can only skim.
So I hope anything I said is relevant.
I have a diagnosed ADHD/Asperger's son. I never went to the Pediatrician abut it ever, or a hospital or any kind of medical DR.
We were first diagonized by using California's First Five program - it's free for kids under 5! Paid by your county. Look into it!
Then of course you need a behavior therapist. Not pills or some medical dr. From the first 5 assessment you'll get all the therapies rated (like OT etc) - and then they'll give you guidance where to go.
My son is in Group Peer Therapy right now, and it's great. Then find a Nuritionalist that understand ADHD and go through an elemination diet to find his triggers (like Gluten etc) His diet will help keep his chemical in balance.
HTH
Easter 2011