Warning Rant Time

[tigger]

Warning moan time

I am completely confused.
Today we went to see the consultant for a check up but feel like it was a complete waste of time.

We keep the dairy which to me has shown lots of things happening over the last two months. You can also see a pattern . I even went to see my GP because I got worried and he said it was about time to put J on anti-epileptic drug as she clearly has E.

I gave the consultant her dairy which he looked at and no real response. Dont get me wrong I would rather J not go on med's. The white patches were completely ignored so I had to ask him about them and all of a sudden it's nothing .

I was told to tell him about anything like the absence that she had in school which lasted a minute or so and the blood stains on her bed which he thinks is a nose bleed . When J woke up I checked everything and no bleed from anywhere.

She is clear of diabetes which is good . I feel like I want to video one of her outbursts

Everytime we go he asks if anyone else in the family have E and I say yes my mums side and my fathers side and their behaviour was like J.

Just feel like we are getting no where.

I give up .

When things happen the OH agrees that it's not right but in front of the doctor he plays everything down so I feel like a mother that is being really pushy.

I'm not I just see my daughter has changed so much

[speber]

In my opinion, of course!

Don't let anyone tell you how to feel...

...your senses and keeping a good diary (which your keeping so far is AWESOME by the way and way ahead of many people!)...should tell any doctor 'worth his salt' something's not right. Any doctor who thinks things are fine after that is missing something or doesn't really care...again, IMO!

Good Luck!
Speber

[Georgiagirl88]

Hi Tigger,

Hope J is doing well.

I have said this so many times..always go with your gut instinct. Especially your Mom instinct. For yrs. I went to many ,many Drs even hospitals..all different kinds.. explained everything that was happening and went undiagnosed for yrs. My sysmptoms fell right in line with seizures and they kept telling me I had anxiety or panic attacks. It was very frustrating and so hard on me. I knew it WAS NOT the case. Nobody would really listen to me and I finally had to be my own advocate and last last Dr. told me to go to a Psychiatrist and I about lost it. I went to my Primary Dr. and was sent to a Neuroloist and was finally Dxed. I really feel for you. I have 2 children as well..
when they were little I kept taking them back and forth to the Dr sick...without answers. We were in a small town. with an old Dr. It turned out they both had asthma/pneumonia. We switched Drs. Just go with your Mom voice. It won't fail you!!!! Best of luck to you and your child!!

Michelle

[BuckeyeFan]

I agree with Speber. It is time to find a new doctor/consultant. If they can not even converse with you and answer your basic questions, they will never be able to give J proper care.

Best of Luck!

[Bernard]

Hi Tigger, I don't really understand the way the system works over there in the UK, but here in the states, I'd pull a Donald Trump on that doctor - "You're fired!" He didn't even order tests (video EEG, etc.) to confirm (or deny) the possibility based upon your valid concerns? Shame on him.

[skillefer]

Hi Tigger! Don't give up! You are your child's best advocate. And if the doctor is stupid enough to not even order tests, especially after you showed him the journal, than I would definitely find or request another one. Keep up the fight.

[tigger]

Thank you all for your support .

I think I will go back to my doctor and have a chat with him and see what he feels.
My own doctor has been so good and he was the one to fight for us to be seen. We are not using the NHS instead we are going private this must be the only time that I wished we hadn't done so.

I will try to get an appointment next week and will keep you up to date with what he say's.

Once again thank you for taking the timeto listern to me.

[Loudmouth]

Have You heard of patient choice?You are entitled to ask for a referral to another specialist,even one that is out of your PCT's area,it's how I'm now under a unit with a neurologist that specialises in Epilepsy and has Epilepsy nurses that is 40 miles away from me and out of my PCT are,we dont have anything in our area.I have my first appointment there at the end of July.You can ask for this for your daughter and they cannot refuse you.Off my soapbox now,but trust yourself,YOU know best what's wrong,she's your daughter,it took 10 years for the doctors to beleive that my daughter was suffering absence seizures,she's just been diagnosed.It wasn't until her school started saying that they beleived she was having them...GOOD LUCK and I hope you get some answers soon.

[RobinN]

Such a shame that the health of our children can be in the hands of those that are so out of touch with what is needed.

[tigger]

I do agree. I'm off to see my GP tomorrow to see what he thinks about it all.

[RobinN]

I too was told by a well respected facility that the heterotopia in Rebecca's frontal lobe was nothing to be concerned with, and yet two others told me it was.

I feel like I want to video one of her outbursts

It was suggested to me to have someone with a cell phone camera, take a short video.
It might or might not help.

I personally learned not to expect much from the medical world. Tests, and a place of clarification, but even when I asked some of the harder questions, they simply did not "know". However, when I went on the internet and did a search, I came up with mulitple pages with medical references. I photocopied them and took them in for discussion.

For example: One doctor said that hormones could not play a part in seizures. I took in the information. He told me if I wanted her to be seen for that, I needed to go to a GYN or a Endocrinologist. He had no idea how hormones were connected. This was a neurologist that is referred to by many doctors on our insurance. Nutritional research was treated the same way.

Again, from my personal experience, a drug will only make the matters worse. Try to approach it from another route. Beginning with diet, you might see the absence seizures eliminated. Certainly worth a trial while you are waiting to see the doctor.

[tigger]

Thank you Robin so much.

I really don't want the little one to go on drugs if we can help it. I guess I just want to be listerned too. I know something is not right. Going to ask for her to be tested for thyroid gland as she drinks for england and sweats alot. This would explain her moods and some other things but it still wont explain the seizures.

I have started to watch what she eats. The funny thing is I just spoke to a couple of her friends who said in school she can get very hyperactive and after dinner she can be moody. He explained it just like how she is at home.

I wanted to print of some things to show my consultant but thought he would think I was cheeky so haven't.

Loudmouth Thank you also

[RobinN]

You are on the right thought process. When you see something out of the norm, research it and check it out. Request tests that they might not think about. Sometimes I have to pay out of pocket, or go through different labs, if my insurance won't pay for tests. But it is all worth it in the long run. I have been talked out of doing certain tests, and others my doctors don't even know how to read. The good labs have people on staff that will help you interpret the tests.

I wanted to print of some things to show my consultant but thought he would think I was cheeky so haven't.

I understand this concern, however, you have to put aside what others think about you when you are searching for answers for your child. Let them think what they want. She is sick and the goal is health.

Thyroid dysfunction and seizures

[Meetz1064]

advocate for your daughter. Please, trust your instinct, and go to a different neurologist. This one is obviously not paying attention to you. And you AND YOUR DAUGHTER deserve to have a doctor that's paying attention to you.

If you think that diet is part of the problem, keep track of what she's eating in the journal.....a pattern should start to show up then. And then, you can start to eliminate the foods that are causing the problem(s). It's not easy, and does take a while, but quite a few of us have done it. But, if that changes the seizure frequency, so much the better.......

Good luck, and keep in touch,

Meetz

[tigger]

I went to see our doctor today. He said that he would send for a second opinion if thats what we really want to do. However I really don't want her being pulled about anymore. Her seizures seem to happen at night so I'm going to use a monitor and see what happens . If we see a seizure I will call for an ambulance and then it can be sorted out.
She has only seen a neurologists once for five minutes when she had a 20 minute EEG.
Her consultant is normally very good . I will see what happens and if I'm not happy I'll request the second opinion which will be up london. Maybe that is not such a bad idea.

I just feel like I am fighting everyone at the moment the only ones that listern to me is you guys so thank you for being there for me .