DESPERATE

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Iam in desperate need of help/advice. I have an 8year old daughter on three different anticonvulants. Dilatin, lamictal, and tranxene. Her medical history is extremely rare. NO ONE has yet to be able to give me a diagnosis...I've been through it all...anyway due to the fact she remains a medical mystery, so does her treatment. My latest problem, which is causing me extreme uneasiness is she recently had her levels checked for dilantin and lamictal. The results for the lamictal came back with absolutely NO trace of medication in her system. She has been on this for four years, after speaking to her neuro, he said HOPEFULLY it was a lab error and she needed to be retested. Again, I received notice that her level was undetectable.....almost impossible....Unfortunately, her neuro is on vacation and after speaking to the urgent neuro on call at Children's Hospital of Philadelphia, they told me there is nothing I can do until he comes back on the 29TH of Jan. I 've had no choice over the course of her eight years but to rely on my gut. I have been uneasy since the middle of December. I KNOW something is not right. After being interrogated as though I could have possibly missed her medication or not given it to her at all{ABSOLUTELY NOT POSSIBLE) I called the makers of the medication...Glaxo.Smith& KLINE...who might I add also felt the need to interrogate me told me there is NO records in their medical database suggesting this is possible. She also developed a rash which again NO ONE knew what it was...only that it was not the life threating one Lamictal can cause. I am at my wits end...my nerves cannot handle these UNKNOWN ANSWERS anymore. No one wants to help me. my nerves cannot handle another 2 weeks of worry. IF ANYONE HAS EXPERIENCED THIS, OR IS FAMILIAR WITH A LIKENESS TO THIS CAN U PLEASE HELP ME. I know it sounds very rambely, but I am at a loss. I would have expected them to put her in the hospital and discontiue the meds but they told me that no one can order these "special test" except for the prescribing doctor. PLEASE PLEASE HELP..I AM DESPERATE WITH NO EVIDENCE THIS IS HARMFUL OR BAD EXCEPT FOR MY INSTINCTS TELLING ME. I just need to know someone else may have experienced this problem before and I am not alone.

Comments

Re: Re: DESPERATE

Submitted by copabeat on Sun, 2007-01-21 - 06:28

Wow, I wouldn't hesitate to have this Doctor contacted while She/he is on Vacation. This is not 1980 something, he doesn't have a cell phone? I can only try to imagine how you feel, if it were my kid, I don't know how I would react. Probably not nice either. I wouldn't get to upset about the interrogation questions either, it is part of the bigger picture and they must be asked. I get that myself from Doctors once they hear I have pancriatic problems they all jump to conclusions that I am an alcoholic, I don't drink. Maybe you should take the advise of asking to speak with the Doctors nurse, they usually know as much as, or more than the doctor anyway. They are usually not as full of themselves either. If nothing else at least they will know how to get in touch with the doctor. You also said you are in Phily, ever think about crossing that bridge into Jerzey? I know they have that major teaching hospital in Camden, "UMDNJ", I think is the name. They have others in Newark and New Brunswick too. Good luck, God Bless the Child! ( and you too)

Re: Re: Re: DESPERATE

Submitted by pava3297 on Tue, 2007-01-23 - 00:00

Hey everyone, thank you all for the information, if for nothing else, it is making the days a little easier awaiting the return of my daughter's doctor. Just so I am not misunderstood, I have no qualms about CHOP.. the (hospital) that my daughter goes to. I don't want to seem as if I am blaming them. CHOP is a fabulous hospital, had it not been for them, I would have lost my child a few times. It is a teaching hospital and they also have a program dedicated to epilepsy. PREP--Pediatric (R)I forgot that one...lol Epilepsy Program. They have reasearch studies and have many different neurologist that consult with one another, especially when a complicated medical history such as my daughter's comes about. You see, I have a local hospital that I use to stablize my daughter, they are worthless, because they all think they are (when need be) and if severe enough, CHOP flies in and brings her to philly. I do live in Jersey and have been to quite a few well ranking hospitals on the east cost, I chose CHOP to continue seeing her because no one else was making any progress. In my rambling, I guess I didn't explain that. Her neuro's nurse practioner was the one that called and told me her second test consisted of undetectable med levels. When they spoke to the neuro on-call that particular day, she said due to the uniqueness of my daughter's past, only HER neuro could make a decision on what should be done. They told me she would be fine until them. And GLAXO.S.K was my next option because I felt like something wasn't right. They did tell me that the Dilantin could cause her liver to metabolize faster and as a result burn up the Lamictal BUT- they were the ones that told me they were reporting the info I gave because they had never heard of a case where meds were not even slightly in the system of someone that has been on it for so long. My instincts are telling me something is going on with her....and I keep replaying the conversation that her neuro and I had the first time her results came back undetectable. You see if I am not right on top of her paying close attention, she has a tendency to go from great to near death rather quickly....maybe deep down that is where all of this anxiety is coming from, I am afraid of the "waiting game." When I feel something with her needs to be addressed, it is ususally for a reason , which destroys me when I need to ease my mind and the medical pros overlook my concern. But thanks to all of you, I now know that this has happened before and I have been a little less tense awaiting the arrival of the neuro. I am greatful for all of the responses. At least I have a place to share my concerning thoughts...with people that HONESTLY understand....

Re: DESPERATE

Submitted by Anonymous on Sun, 2007-01-21 - 07:35

A child's levels can come back low or not detectable for many reasons. Drug interactions can be one. Another, which you can check right now, is to make sure the pharmacy has given you lamictal. This drug name gets confused easily with a few other drugs and there have been errors in people getting the wrong drug. The pharmacist can check this for you.

While waiting for a few weeks can be very hard, changing a drug without knowing what is going on can be very difficult too. And some drugs like lamictal can't be changed quickly. Talk to the covering doctor and nurses about what to do in your situation.

Take care,

Epi_help