Seriously frustrated

[Denae]

You all know that in the past we have had a few issues with call backs, but for the most part we do love Dr. Parrott, he has been an awesome neuro.

Today I have had it....

Leigh called, Rileys Topamax level is 12.2, in August it was 8.2- she was on nearly 75mg more of it then...

We have no idea what to do, Dr. P has left for the hospital and will not be back in the office until monday. Until Leigh can get intouch with him we are in limbo... this is insane, she knew the levels yesterday- why did she not find out then?

She and I discussed the other meds Ri has been on and why each one didn't work in the past. She and I were discussing the Zonegran and that it was the only one that gave her any control for any length of time... I really don't want her on keppra any longer- it is making her very irritable.

Leigh agreed that was one of the side effects....

I told her Ri is miserable... really miserable- I don't know how much more I can take, and I know she is at her limit too.

Leigh said she would talk to him and call me back....... Monday...

So her we sit another freakin' weekend that Ri will be miserable and tired, and seizurey...

Today she woke up with a 2 minute TC... school called she has had 2 partials each less than a minute...

:( (sigh)

[just laurie]

I'm sorry Danae. That stinks.

Laurie

[Mother's Heart]

I'm sorry, I wish I could come hold...one of you.

does he never take on-call calls? or is it always an other neuro? If he goes on-call I would be so tempted to call tomorrow. :D

[Tylersmom]

The on call thing sounds good. If he does it. Im sorry Denae. How frustrating. It is awful that she knew the results yesterday and didnt say anything till today.When the dr wasnt in.

[Fayelle]

Ick!

How old is Riley?

Xander is on Topamax and the docs at Emery said when he was on 25 mg's that the mg level was doing literally nothing for him....They took him up to 150 mg, 75 twice a day....Then they weaned him off of dilantin and he is solely on topamax now.....

Xander is 6 and weighs about 58 pounds.....He started with partials that generalized into tonic clonics.....

I can't believe there is not someone on call who can address this issue! It is my understanding that it is important to at least minimize the seizures and try to get them under control altogether so the brain does not run the risk of mapping towards a seizure pattern.....If there is not someone to address your issues after hours I would look at another neuro in all honesty! It's too important to be able to get help at any hour!

I also hate seizures :(!

Sorry to hear of this!

Fay

[wheeliebird]

I'm so sorry, sending {{{HUGS}}} your way!

Robin

[LeighB]

I can't remember if you said he is an epileptologist or not. Sometimes the regular neurologists(as well as their staffs) are spread too thin with other medical conditions. Is there an epilepsy center in your city where they could review Riley's case? This might help both you and Riley. I don't know, it's just a thought. I wish I could have a better answer.

LeighB

[CoolAngel28]

I can't remember if you said he is an epileptologist or not. Sometimes the regular neurologists(as well as their staffs) are spread too thin with other medical conditions. Is there an epilepsy center in your city where they could review Riley's case? This might help both you and Riley. I don't know, it's just a thought. I wish I could have a better answer.

LeighB

A local epilepsy center might be a good thing for you to look into..Good luck.

[langansmom]

(((((Denae))))) I hated to see this message. Seems like you and Riley just can't get a break these days. Ugh.

Here are my thoughts on the level difference:

-were they taken at different times of day? I know when we check Langan's lamictal level we try to take it at the same time so that we can get a good comparison of the level in her system. I don't know much about other meds, but lamictal has a relatively short half life, so if I take a level 2 hours after her morning dose and a level 10 hours after, they are decidedly different. I wonder if that's part of the answer here?

-another thought is that maybe it is something metabolic going on. With Langan, we have long suspected a metabolic disorder that hasn't been named or identified yet. Our neuro said that the metabolic kids have real problems with the meds because their metabolisms just don't process them consistently. I know I have definitely seen times when I can give Langan her melatonin, for example, and she acts like she never took it. Then, two days later she is super sleepy and I suspect that her body somehow just didn't process it for that period and then all of a sudden it hit her system. Maybe that's what is going on with Riley?

These are just my random thoughts and I know they don't give any answers anyway, but I wanted to throw them out there. I hope you get a response soon. I agree that someone on call should be able to help. That said, I am really hesitant to use on call docs with Langan. When our neuro was out after a surgery, the on call doc gave me instructions that I didn't agree with. I held out, and sure enough our neuro agreed with me. If your doc knows Riley better than they do, then I would worry about them basing a decision like this on just looking at her chart. At the same time, a weekend of waiting is no good. Ugh. Maybe see what the on call has to say and then take it from there.

Sorry I'm no help. Just know that Langan and I are here thinking about you guys and hoping sweet Riley gets some relief soon.

(((hugs)))

[taft]

I can't remember if you said he is an epileptologist or not. Sometimes the regular neurologists(as well as their staffs) are spread too thin with other medical conditions. Is there an epilepsy center in your city where they could review Riley's case? This might help both you and Riley. I don't know, it's just a thought. I wish I could have a better answer.

LeighB

Ditto we see a pediatric epileptologist, He knows his stuff I can't remember but do you live in wi???? if so we should chat.;) Hang in there

[RathyKay]

(((Hugs))):( The weekend wait definitely makes everything worse. Wish I had some answers for you.

[mama sue]

I don't have any advice, just wanted to send some (((HUGS))) your way

[Mother's Heart]

((((Denae))))

how are you and Riley this morning?

[Denae]

We made it through the day today, it was one of the best days she has had in a while....

Friday night was Victorias homecoming game, they performed after the game.. Riley was restless the last quarter and during the bands show I knew something was up. One the way to her dads house we had to stop and give her diastat- at least it was one of her regular nasty partial clusters.

So far the awnser seems to be diastat every few days... not a real option though...

I did consider taking her to Levine Childrens where Dr. Parrott is, since I knew he was there and he would HAVE to do something... just didn't seem necessary, I mean if she got to where she was last weekend I would, but it isn't like that... I simply have a hard time waiting- and I don't trust the random neuro on call to look at her chart and make such a vital decision about her meds and what to do.

~Wendy

Dr. Boyd has felt for a while that Ri has something metabolic going on... just can't pin point it. I know that in the past she metabolized Depakote at odd rates which is why she became toxic on a high dose then was never able to be on it again with out becoming toxic at even a "regular" dose...

She is happy, laughing, and playing so for now all is good.... How about she has not had a SINGLE seizure today ... NOT ONE!!!

If she can make it until 10:30 then it will be 24 hours seizure free... :D

_I have got to get my internet back at home....


Thanks everyone!