Hannah Update

[lisajean]

Hey All,
I wish I had something wonderful to post but sadly life still sucks. The meds they put Hannah on for seizure and pain made her totally nutso and it was a VERY BAD TIME. She is now off Keppra and tapering off methadone.
I HATE MEDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Seriously, the meds were so awful. She was suicidal and out of control. She is slowly gaining ground and thankfully doesn't remember much.
Any idea why Hannah responds so poorly to almost all meds? We are back to the ones she can tolerate which is a very short list.
She has a shuntogram on Monday here locally. I am torn between this local hotshot and taking her somewhere else (Frim or Rekate). At least this guy cares and wants to do something.
I am so burnt out. It is hard to keep searching for answers. Hannah has given up all hope and wishes to die so she can escape her pain. I find it hard to keep telling her that life will get better when I can't promise her a thing.
Her future is not bright.
Thanks for listening,
Lisa
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[GardeniaGirl]

I am sorry to hear what you and your daughter have been going through. I can understand the frustration.

I think I am very similar to your daughter in that my body cannot tolerate drugs very well.

I desperately need to be on stronger doses of the meds I take but the side effects are just horrendous.

So I really have an idea of the frustration you are facing. It is hard to retain hope in the face of circumstances like these.

Like your daughter, I have gone through many times of wishing that I was not here anymore because I felt I could not tolerate any further pain and frustration. (I did not and do not want to die - but there are times when I don't want to live with this suffering anymore- to me, those are different)

There is no simple, pat advice for something like this. There are no easy answers.

If there is anything I can share, it is that for over 10 years, I have never stopped trying any and every medication and supplement that either my doctors have suggested or I have researched and learned about myself.

And by never stopping, I DID find some things that help.

But those "successes" came in between many days, weeks, and months of much suffering and hopelessness.

I can't imagine what it must be like to watch your own child suffer in that way.

I hope that with perseverance, you will find some things that are effective for her.

take good care, GG

[spoiledbeth]

I really wish those had worked out for her, I know it's tough. Do they know which med was making her react this time, or just pull her off of both of them immediately to stop the reaction? I don't know what all drugs she's been tried on, but they are always coming up with new ones, so don't give up hope. I have days when it's really hard for me to find my hope, like today, where the pain is overpowering me and makes me not want to eat because it hurts to much, but the important thing is to not give up. Hopefully they will be able to find something that will work for her. I will keep you guys in my thoughts.

[jena1225]

Hi Lisa. I have been thinking about you and DD. I am sorry things are just not working :(

Stupid question, since you daughter has probably already tried it, but what about Demerol, or something in the same category? Or, is that category of drug very short acting? I know it is impossible to function on, but even if it's just to keep her sane? I mean, it sounds like her pain is just so unimagineable and unrelenting, I feel so bad :(

How is she able to fall asleep, or even stay asleep? Does she ever get periods of relief?

Is the Dr going to keep working with you until something is found that works? I really hope so, I know you have had trouble with that in the past. Thank god she has you.

[Mark N]

Lisa, I am so sorry that hannah doesn't respond well to medications. My wife is like that but doesn't need them like Hannah does. GG said it so well in her post and I don't want to repeat it.

There isn't an easy way to say hang in there and things will get better. I strugle each day and wonder if they will get any better and I know I am doing better than Hannah. I pray that both of you can hang on until they come up with a new med or new procedure to give her pain relief. What is most of her pain? I don't remember other than to know she is in pain.

[lisajean]

Thanks Everyone,
The seizure thing has me very confused. As far as we know Hannah has only ever had the one seizure, a grand mal 4 weeks ago. Her doctors think it was med related. Most of the meds she was taking at that time she had been taking for almost a year, however she had just increased the dose on a newer med (Opana LA) and had tried a scopolamine patch, which I took off after 24 hours due to her strange behavior.
She had the seizure the next day.
So it could have been the scopolamine, or the increased med, or meds she had been on for some time known to reduce seizure threshhold (tramadol and serzone). Or it could be something new and/or shunt related.
Her PCP thinks the strange behavior the day before was a form of seizure but the neuro wasn't convinced. Of course we only saw him for a brief visit and won't see him again until this coming Friday. Hannahs new PCP has been very proactive during this whole ordeal so I am taking her word against his . She doesn't think Hannah needs to be on seizure meds and was the one to make the med changes. My gut says it was the Keppra as Hannah is still on a very low dose of methadone and seems to be tolerating it ok. She was only taking Keppra 250 mg BID however so I'm not sure.
Clear as mud, eh!
Anyway.... each day is a little better. She is almost back to her baseline, which as you know, is not so great. But I tell you..... she was a MESS for a short time. Her depression/mood swings were wicked. Thankfully she doesn't remember a thing.
So, the shuntogram is Monday. Don't know what it will show but we have to try. I'm not sure what next. I am trying to figure out what medical facility can handle all her issues. We need NS, neuro, psych, pain, cardiology, rehab, GI, sleep specialist.....is that it?? The Mayo was a total bust so I am at a loss as where to turn. I thought that was where you went when no one else could help but I was wrong. Any suggestions??
Well, thanks for letting me ramble. Your support is always so appreciated. I hope to someday give back all that you have given me!
hugs,
Lisa
PS. Jena, Demerol does nothing for Hannah. Her pain is 24/7 with NO relief ever. She manages to sleep some if she takes klonopin, dilaudid and ambien right at bedtime. But she only get a bit of sleep and she has horrible nightmares so it is not good sleep. :(

[suede]

Lisa,
I'm sorry that Hannah wasn't able to tolerate the meds.
I know how hard this has to be in you as well as Hannah, two of my three children had very life threatening issues when they were young.
One of my twin granddaughters has had the problems with seizures and meds, all though her seizures were the silent ones where she would just space out and quit breathing, she was able to take the meds they gave her but they had terrible side effects on her, mostly mood disorders.
I hope that you are able to find something to help her soon, your so right this is so unfair for one so young and so hard for a loving parent to see a child suffer like this.
Know that you are both in my thoughts.
Linda

[Mark N]

Lisa, many people have found the Mayo clinic not to be all it is cracked up to be. I know they do some really good things in medicine but they can't be an end all for every medical condition. Have you found anything on your web research for her condition. There should be a doctor or a group of doctors that focuses on her condition in the country. I wish you luck finding the right doctor for Hannah to make your life better.

[GardeniaGirl]

On finding the docs who will help you--

I will just share based on my long experience with this.

Try to find docs who are comfortable with complex cases. Who feel challenged by them and enjoy that type of challenge. This means that their baseline response to the difficulty will be "challenge = good" rather than "this is hard = frustrating".

Some docs DO like challenging cases, others are not cut out for it.

Because my rheumie likes complexity and the challenge it affords him, he enjoys having me as a patient and he isn't bothered, irritatded, or annoyed when drug after drug after drug fails. He lets me cry, gives me a tissue, and then we discuss the next step.

Also, there are docs who are very "think outside of the box" types. These will be the ones who can help you try everything because they are open to the idea that the right solution might be the least likely. their thinking transcends rigid rules about how to use meds or how meds interact.

Among the specialists you need, I would try to find out who possesses those qualities, and then just invest in a long relationship with them. These types tend to be open to your own ideas, intuitions, and research. So you feel like you are a team tryingg to generate and try as many options as possible.

The best care I've recieved so far has been with a rheumatologist who prefers complex, non-straightforward cases, and he thinks outside of the box. He never rejects an idea I bring in - after reviewing it, he will say, well, let's give it a try and see what happens. He knows we are on a quest to turn over every stone.

I met rheumatologists who were not like that in any way shape or form and i can't imagine how much worse off I would be now if I had been stuck wtih them.

This "type" is out there - I think its more of a personality type - and I think they are what you need to treat the sorts of complex issues your daughter is dealing with.

not sure if any of that helps or is relevant --

I just hope you have ways to keep getting more ideas, ruling things out, developinng hypotheses about how the symptoms and medications are reacting to each other, etc.

[photonut]

Hi Lisa:
Have you heard about the Cleveland Clinic in Cleveland Ohio. I do not know where you live but I have heard they do wonderful things there in relation to peoples treatments with meds, allergys and so on.They also help if you haven't the $ for treatment. I hope this might be of some help. I can keep you both in my prayers that you find a solution for Hannah's situation.

[curiousforever]

Hugs.... I wish I could do something more for her.....