really need some advice in FL

[airbucket]

Hello,

 

I dont belong to other forums or parents groups so i am going to throw this question out here. my son is 9 years old now and only now are we really seeing whats going on with him. his diagnoses over the years have been many and varied, and the latest docs and psychs we have been to have said themselves that his case is particularly complex and confusing and needs to be understood better. Right now, we have been seeing my son deteriorate again since august. This type of down slide happened also last Fall. the worst part is that he will be "ok" for a few days or a week, then will display this just deterioration which presents as almost a kind of crazy acting. its gotten scary lately at times as well. i am understanding it better, though i still dont know the source, i.e., if its caused by neurological problems, if its a developmental disorder issue, a possible psychiatric issue, or what. it truly seems that his melt downs (which are NOt like a tantrum, they are like someone losing their mind) are a time when he has zero awareness of how he feels, who is is, what he thinks. he is just in a fury, but not a fury that makes any sense. its sooo hard to epxlain especially if i am trying to be brief. i have feel literally like the only parent on earth with a situation like this. every parent i meet is at peace to some extent knowing their kid has "X", and this is what you do to treat "X", etc. i mean i know thats an oversimplification, but to be at this stage and not know #1 what is really wrong with my son, and #2 what to do....i keep reading that parents have these great psychologists for their kids who really understand their child and are helpful in treatment or figuring things out or suggestions. Right now, we have a new neurologist who we saw who is going to do a battery of complex blood testing and a new MRI. in the mean time he told me he will see us in 3 months! what i dont understand is how am i supposed to wait 3 months? shouldnt i have someone to go to at times of crisis like this where my son is having these freak outs. Thats the thing, we dont have anyone to go to. I found someone who was supposed ot be a top notch PhD psychologist here where we live and i went several times and spent $1000 hoping this lady would gather all the info i painstakingly compiled and the time she spent with my son and help me out! tell me what she thinks, what we can do, help me get to the bottom of all this complexity that no one can figure out. she did nothing! she agreed that he has ADHD and the tourettes and the OCD work together and he is a little immature yet for CBT and thats it. what about this crisis? where are all these great professionals who dig in and really help you figure out whats going on. my kid doesnt live in a text book. if i was jenny mcarthy would i then get the attention we need to unravel all this? Just looking for some advice, particularly in Florida, if anyone knows of any psychs or therapists or anyne GOOD they know or have used, or any suggestions. its such a wierd feeling to have a child with neurological disorders and be in a crisis and no one does anything, no one is there, its not a big deal to anyone, etc. If this was god forbid a disease people could SEE like cancer or diabetes, wouldnt someoone rush to help him? i know i may not be making much sense here in trying to just describe what this is like when you havent found a good professional in your childs life to turn to for help figuring things out. thanks for listening!

 

clara

[myrose]

airbucket.....gee I feel so badly for the way you feel. You just about made me tear all up . Unfortunately I think many, including myself feel like you do. I was left after our first neurology appointment with the same....see you in 3 months! In the meantime my daughter continued the tics in which then turned violent. It was unbearable to see this and hear her crying to me for help to make it stop.

I felt even after all the doctors we had been to....I was STILL alone. No one to talk to it about, no one to understand just what this whole ordeal is and was like. I live in Florida as well, you never mentioned where but I will say in here that I am in East Orlando.

I am planning to head to a place in Melbourne....this is my next step. I think you should check it out.....you need to check it out.

One of the posters Pmoreno can help with more info in regards to the place...... Please don't give up. I did this at the end of my rope and it just made me angry....so angry inside that I could not concentrate and just layed in bed for weeks.....its not good....

If you are close, maybe we can go together to this place...how old is your son?

 

Check this place out now..... I know you will get some answers and not just meds......I will add you in my prayers....just know you are not alone...but I will say that I know it feels like that most of the time.

 

http://www.creationsown.com/

[airbucket]

myrose:

 

thank you! its so ironic you mention creationsown because thats just who i contacted, Dr Bradtreets office. my only uncertainty is whether he is the right person for what we are dealing with. i thought more like a pyschoneurologist or something, i dont know! what if whats going in with him is NOT related to a biomedical issue? because its not the tics we;re struggling with now, though he is having some. i am still going to talk to their office and explain my situation and see what they think. i have applied for DAN funds from two different sources to go see him, otherwise we cant really afford it, at least not the whole she-bang. i dont feel like giving up, but this frusturation of feeling so alone is nuts! for a child as complex as mine with all his symptoms and issues and every school is a disaster for him etc etc, should we have "someone" to turn to? im afriad im seeing like early bi polar or something, i dont know. myrose thank you so much, just reading your post is comforting and i will call bradstreet and look into what they do further. when are you going there?? do you know what you want to do there? the whole protocol? i also dont remember your sons age, mine is 9.

 

airbucket.....gee I feel so badly for the way you feel. You just about made me tear all up . Unfortunately I think many, including myself feel like you do. I was left after our first neurology appointment with the same....see you in 3 months! In the meantime my daughter continued the tics in which then turned violent. It was unbearable to see this and hear her crying to me for help to make it stop.

I felt even after all the doctors we had been to....I was STILL alone. No one to talk to it about, no one to understand just what this whole ordeal is and was like. I live in Florida as well, you never mentioned where but I will say in here that I am in East Orlando.

I am planning to head to a place in Melbourne....this is my next step. I think you should check it out.....you need to check it out.

One of the posters Pmoreno can help with more info in regards to the place...... Please don't give up. I did this at the end of my rope and it just made me angry....so angry inside that I could not concentrate and just layed in bed for weeks.....its not good....

If you are close, maybe we can go together to this place...how old is your son?

 

Check this place out now..... I know you will get some answers and not just meds......I will add you in my prayers....just know you are not alone...but I will say that I know it feels like that most of the time.

 

http://www.creationsown.com/

[Char]

Airbucket,

 

As I read your post, it brought tears to my eyes!!! I too have felt the same feelings as you. I felt there were no doctors who understood my problems that I was having with my son. They basically said to just ignore his tics and maybe he'll grow how of it. I felt also no one really understood how I was feeling. Even in my own family because no else in my family or relatives has had tics before. I just wanted to let you know that your not alone and you can write me anytime. I may not have the answers your looking for but I feel it's nice just too express your feelings to people.Who understand some what of what your going through. I'm thankful too have found this forum because now I don't feel so alone!! I think if all of us members here,just give a ear and support each other,we can find a little peace of mind. When,maybe things aren't so great. I believe that when doctors say there is nothing you can do too help your child, I think there is always hope for a better tomorrow. And as parents we know are children and we have that MOMMY or Daddy instincts that we have to trust over doctors opinions. I hope your son finds some relief soon. As parents, its so hard to see your child struggle. Remember there's always hope for a better tomorrow!!!!

[airbucket]

 

char:

 

your post brought tears to my eyes! thank you so much, how kind of you to take your time to write that. every little communication helps that feeling of isolation. i do have hope, i would never give up hope. i think if everyone on this forum was an M.D. we would find the answers we seek because we understand so much, its just we are not doctors and cannot know all about the body. but we know our children like no doctor can thats for sure. i feel like i do so much "complaining" on this forum but sometimes its hard not to! you never know if theres that one person out there who might know something that could help you. thank you char and all the best to you!

[CSP]

Hi airbucket,

 

Among other reasons I have been taking a break from the forum, one is I finished a book by James Patterson: (Against Medical Advice.) For those who don't know the book, it is about one family's struggle with their son's Tourettes/OCD. I have to say it was a such a good story, but hard to read if your going through the same as this family. I felt after reading everything this family had to go through and the love they showed for their son, is so remarkable.

 

I think alot of parent hear would really connect with this book and you will cry with this family, and at the same time give thanks that your child is not as bad as this boy's story.

 

I really loved it and came away with a whole new look on what my son is going through, as the story is told through this young man. I'm so thankful because what I can not get my son to tell me how he feels I think now I can get a good idea through this boy's heart breaking memories.

 

Some of the other reasons you all would enjoy this book, is to read how medication had distroyed this boys life. I know most of you will come away feeling good about all you are doing to keep your child drug free, or on very small doses.

 

airbucket, I really think you will understand this boy's feelings, and I think this would give you more peace then any Dr. ever could. The most wonderful part of his story that takes you through his ######, is there is a happy ending.

 

God Bless,

CP

[Chemar]

(((((((((((((Clara))))))))))))))))

 

I am so sorry for the anguish you are experiencing and sure understand those feelings.

 

not sure which part of Florida you are in but have you emailed Sheila to see if she has any recommendations? she lived in se florida for many years so would possibly know the docs in that area.

Dr Robbins, the environmental doc, is in south Florida I believe. I know carolyn saw him for a long time

 

I wish I had personal recommendations for you but sadly the only good psych we ever found is now in New Zealand, and, apart from our acupuncture therapist, my son is doc free at present. The team of physicians we initially used are no longer in this area ( I am north of Orlando) We have a DO as primary care doc, but my son pretty much manages his own healthcare now

 

I did recommend a pediatric Integrative Doc to myrose (she is the one that did the dry blood test etc) but we havent seen her in years and so I honestly dont know where she is "at" in terms of treatments etc now....myrose would know more about her at this time. I liked her very much when we saw her in 2000-2001 and she started my son on the acupuncture and suggested I read up on supplements. It was shortly thereafter that I found a copy of Latitudes magazine and the info on Bonnie's program............

Her name is Dr Cornelia Franz at the Franz Institute in s Orlando and she is an MD with an integrated homeopathic practice, so most insurance covers her.

 

I think that the website myrose posted is where a friend of mine from church has been with her autistic son, with high praise for it...I would need to check tho to be sure that is the same one

[Tracey111]

Clara,

 

I am near St. Petersburg. I have been looking at USF/All Children's Hospital. There is a Dr. by the name of Tanya Murphy. She specializes in TS and OCD. You can google her name and you will find the USF page. Here is her email address. tmurphy@health.usf.edu I emailed her and they contacted me right away. I have not yet made an appointment, but liked what I read on her.

 

God Bless and I hope you find the answers you need!!!!!!!!!!!

[patty]

Myrose & airbucket,

 

It breaks my heart to hear what you are going thru and feeling so alone and helpless. I can truly understand. I just want to let you know that things will get better but will take time. Because you are mothers with good intentions, it will lead you to the right path.

 

God bless and a hug to you.

 

Pat

[Chemar]

Clara,

 

I am near St. Petersburg. I have been looking at USF/All Children's Hospital. There is a Dr. by the name of Tanya Murphy. She specializes in TS and OCD. You can google her name and you will find the USF page. Here is her email address. tmurphy@health.usf.edu I emailed her and they contacted me right away. I have not yet made an appointment, but liked what I read on her.

 

God Bless and I hope you find the answers you need!!!!!!!!!!!

 

we saw Dr Murphy when she was at Shands, Gainesville FL and it was her psychiatric intern who my son bonded with and who helped us re CBT etc. My son saw him for a year and we drove the 2.5 hrs each way as he was so helpful. It was he who informed us on the morphing of OCD/tics (tourettic OCD) and also he who helped wean my son off the meds. He is in New Zealand now

 

Dr Murphy is a wonderful doctor but her speciality is more PANDAS, altho she does treat TS/tics/OCD and other psychiatric pediatric disorders

However, she used to treat with prescription meds rather than alternatives. As we last saw her almost 9 years ago I am not sure what her protocol is now