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: DESPERATE

Submitted by ekoorb on Sat, 2007-01-20 - 13:59

I am sorry you are going through this. My 6 year old daugther has Benign Occipital Childhood Epilepsy (BOCE). I do not have experience with the questions you pose. But, it seems everyone is wasting their time asking you questions as if you might not have given her the meds instead of focusing on the real issue of what is happening with your daughter. Is it possible she is spitting it out without your knowledge? My daugther takes a small dose of Topomax each night and it tastes terrible but she takes it very willingly in a spoon of applesauce. It is just a thought to look into. Also, I would contact your local drugstore where you bought the meds and ask for a record of the last year which shows you were purchasing the meds. Or maybe you can get the info. from your insurance company who will have the processed insurance claims (possibly even in a computer database) Not that you have any obligation to do all this but they are on the wrong focus. When you show this to the doctors, logic will dictate that you were not buying the meds so you could flush them down the toilet. Then they can stop wasting their time making you feel like you are under a microscrope when you clearly are a conscientious parent who tends to your child's illness by taking to a neurologist at a Children's Hospital. The waiting is tough. If you are really that desparate and afraid, you should demand in a nice way speaking to the doctor's assistant/nurse who probably knows you and your child by now and ask him/her to help you get before another doc. They have to understanding that making you wait another 10 days may make you go crazy. I think a lot of these people who work in a children's hospital are kind and have a caring attitude toward the parents. Don't let someone tell you no. It is easy for an attending doc who does not know you who is very very busy to say you have to wait but there must be someone there who will help you. How long has she had E? What are her seizures like? With BOCE, they mostly occur during sleep.

Re: Re: DESPERATE

Submitted by pava3297 on Sun, 2007-01-21 - 00:42

Thank you Thank you Thank you....FINALLY someone understands. I have developed a zero tolerance for people and professionals that treat me like an imbisole OR look at me like this could be a result of something I did. Over the last eight years, she has been hospitalized 62 times....MOST, being from 14 months old to 4years. Now she averages a trip or two a year which I have accepted as a norm. After what I went through, my defense mechanisums have built a stone wall around me which at times, I guess I should be a little more understanding of people because they DON'T know how different she really is And they hey are just following protocol; but my reactions are caused by people who are so quick to make accusations, BUT not so quick to give me answers that could potentially relax me a little. THAT is what my concern is. I've always been forced to go with my gut instinct because it is the only thing I have to base my reasoning on.... my daughter has proven over and over again that it is necessary to prepare for the unexpected and keep an open mind that NOTHING is impossible. Yeah..... try getting someone to listen to that. It is easier to deny than it is to accept the "UNKNOWN" could happen. Alot of people assume I am over reacting and it's not really a big deal to wait two more weeks. Thses 2 weeks are going to be agony for me and no one wants to hear what I am saying. anger and frustration is putting it mildly as to what i am feeling. BELIEVE ME, I have tried to hit this on every angle. And no one wants to touch this situation. If I take her to the local hospital, they are going to check her levels and tell me she needs to be adjusted on her meds...that is a given. I want to know WHY they are passing the buck on her. As far as I am concerned, it is not unrealistic to feel the way I do especially when it says right on the med label, ANY SIGN OF A RASH THAT IS UNEXPLAINABLE REQUIRES THE MED TO BE STOPPED IMMEDIATELY. for precationary purposes at least. I don't expect doctors to drop everything to caterer to me BUT if you read about LAMICTAL and the rare side effects that could be potentially life threating...why aren't the professionals admitting her in the hospital or at least ordering more blood work to rule out any potential toxicity. It dosen't make sense to me. BUT.....AFTER ALL OF THAT......LOL...at least there is some form of an outlet for me to discuss my concerns with people that can, at best, relate to the stress something like this can cause. With that I thank you for at least reading and responding to me. OH....YEAH.....bye the way...my daughter dosen't have epilepsy, she has a seizure disorder from an unknown trigger. Infantile Spasms were the start of her seizures and you name it from there and she has had the type. At one point her seizures became intractable and we thought we were going to lose her. She is sooooo unpredictable and complicated...which makes her all that more special to me and i will not give up regardless of how crazy I may sound. AGAIN THANK YOU....EXPRESSING MYSELF HELPS WITH THE STRESS.

Hi There, Follow your

Submitted by mama bear on Sat, 2007-01-20 - 15:09

Hi There, Follow your instincts mommy! you are doing the right thing. If you read my response to another mother on the forum writing about her 2 1/2 year old and her seizures ( titled: my daughter just started having seizures) you will see what I wrote about pyridoxine (vitamin B6). I can see you are going through a tough time right now. I just wanted to let you know about the B6 2 week trial just in case you have not tried that in addition to your daughters other meds. We are one week seizure free! Previously my son was having horrible clusters of seizures. This may not be the solution, of course it is a very long shot, but I think you would agree it is worth it to look into everything you can right now. Our thoughts are with you, I hope you get to the bottom of this very soon. Best of luck, Tresa (mama bear)