We may not all walk the same, but we all walk together.
Medicine - A Love/Hate Relationship
Since Emily was five days old she has been on seizure medications. More specifically Emily has taken Dilantin since she had her first known seizure. And since we found out about the side effects of Dilantin we have been searching for a way to get Emily off of that mediation. The following is an extensive list of the medications we have tried Emily on in hopes to control her multiple seizure types. These are medications that have been prescribed to her by her neurologist and the side effects are ones specific to Emily. I am not stating that these side effects may or may not happen to someone you know. I am only putting this information out here to state how Emily reacted to specific medications. Please consult your physician and do your own research before deciding if one of the medications is right or wrong for your situation.
Emily's Current Medications are:
Dilantin - Dilantin was originally prescribed to go after Emily's tonic-clonic seizures. Dilantin is a very difficult medication for us to maintain a therapeutic level on for Emily. The therapeutic blood range for this medication ranges from 10 - 20 and Emily likes it to be around 18 - 20 for her specifically. The known side effects of this medication for Emily are: gum overgrowth, excessive hair growth, negative effect on her motor skills and ability to make sounds, high levels cause more seizures and significant dystonia (movement disorder), thick tongue, quick drops in levels cause increase in seizures, and much more.
Diazepam - Emily takes a small dose of Diazepam in hopes to control clonic seizures. For the first 2 years of her life she was on regular doses of Lorazepam (Ativan) when we got to higher levels of Ativan it made Emily super cranky, so we switched to Diazepam (Valium) and she has been much better on it the past three years. Too much Diazepam tends to make Emily crabby and overtired. So when we have to administer Diastat (emergency Valium) for seizures we can pretty much guarantee that Emily will be a mess for at least two days or more. We have multiple forms of Diazepam for Emily - liquid suspension, pills, IV form, sublingual, and Diastat.
We use the IV form the most in case where Emily's seizures are starting to spiral out of control. We have found that if we can give Emily a smaller dose of the IV form of Diazepam early on, then we do not have to use the higher dose of Diastat later. We draw up the IV form with a small syringe and needle. We then discard the needle and administer the medication rectally. It absorbs faster than the oral form and we get better results of shutting down the seizures this way.
Celontin - Emily was prescribed this medication about a year ago. It has been a wonder drug for her! She was having upwards of 1600 clonic seizures in a day. This medication went after her clonic seizures and at times has even gotten the tonic-clonic seizures to just be tonic seizures. Emily is beyond therapeutic level in this medication. The therapeutic range is from 10 - 40 and Emily is at about 45 and happy.
Neurontin - Emily takes very small doses of this medication for unknown neurological pain. Every time we take her off of it she has major crying fits and when we put her back on low doses, she is fine. She took this medication initially in hopes of using it as a seizure medication, but high doses made her too sleepy and she had urinary retention with no better seizure control.
Vimpat/Lacosomide - Emily has now been on Vimpat for about 2 months. It seems to be working well to help keep her tonic-clonic and clonic seizures under decent control. Emily is still having seizures with this medication, but we are hoping to eventually replace her Dilantin with this medicine. It was and still is very hard on her tummy every time we increase it. She gets really bad gas pains and the constipation has not improved on this medication - if anything it has gotten worse. So far we have been pretty happy with this medication.
Past seizure medications both tried and taken:
Vigabatrin/Sabril – Emily has been on Vigabatrin (Sabril) since she was about 4 months old. This medication was great for her and shut down her complex partial seizures. We have taken Emily to get the routine Electro Retinal Grams required for this medication and they have always come back fine. We have opted to not do any more ERGs on Emily because of the risk of being put under anesthesia and intubation that is required for the procedure. We have attempted to get Emily off of Vigabatrin multiple times and each time we fail, so we know that it does some good for her. However, too much of this medication makes things much worse for Emily.
Emily officially came off of Vigabatrin in late August 2011. We had attempted to get Emily off Vigabatrin six times prior to this final and successful try. Emily took Vigabatrin for over six years to help control her complex partial seizures. Since being off of Vigabatrin we have seen Emily become more alert and happy. Emily is using her vision so much more and is really beginning to communicate more with the world around her. We have not seen any fallout or breakthrough seizures as a results of stopping this medication!
Topamax – We liked to call this medication dopamax because it made Emily’s brain fuzzy and her tired. We also feel that it was the main source for Emily’s recurring urinary tract infections. Emily took this medication on three different occasions. The first time she was an infant and she kept going into acidosis every time her Topamax levels got too high. The second time she was given this was for a spell of infantile spasms for about 6 weeks. The medication seemed to work, but again the metabolic acidosis reappeared. The third time we tried it, Emily was almost 2 ½. This time the medication worked well for Emily and she had one of the best EEGs ever. Emily took Topamax for almost 2 ½ years and we found a local pharmacy that would compound it into a suspension form for us. We recently took Emily off of it because we felt it was not working anymore. As Emily came off of Topamax she really began to wake up and became much more alert! You have to really watch getting too doped up on Topamax and also keep really hydrated to ensure not getting kidney stones.
Phenobarbital – Works great in loading doses, but turned Emily into the crabby child ever! Not a medication we care to try on a regular basis.
Vitamin B6 – we tried this when Emily was 6 months old with no benefit from it.
Clobazam - Another medication that we had to get from Canada as it was not approved by the FDA in the USA at the time Emily tried it. This medication falls under the class of Benzodiazepine's which Emily seems to love - (like Ativan and Diazepam). The thought behind trying this medication is that it is supposed to have less sedating side effects. So in desperation we tried Clobazam in hopes of getting better control over Emily's clonic seizures. At first there was the typical honeymoon period where we thought it was doing great things. Then about four days into it, the world fell apart with Emily's seizures. She began to drool excessively to the point that she was begininng to choke on her own secreations. I guess what happens with this particular medication is that it really helps relax the throat muscles which caused Emily's to not be able to swallow well and thus the drooling and choking. Since Emily already has low-tone and the VNS she does not need any more strikes against her in the area of swallowing. Emily's dystonia got so bad on this medication that we were giving her Diastat three times a week plus some. We wanted so badly for this medication to work and that we could swap it out for Diazepam, but it clearly was not a good fit for Emily. This medication has an unbelievablely long half-life so it took weeks to get Emily back to her baseline after this three week trial. I was not a fan of it, but glad we at least tried it.
Lyrica – This is the sister medicine to Neurontin. We gave this to Emily when she was about 9 months old and she literally slept for days and it caused major worsening of her hypotonia. We tried it in lower doses for about 4 months with no such luck.
Lamictal – We tried this one three time with negative results each time. It caused severe irritability and mood swings with Emily.
Keppra – Keppra has also been tried three times with Emily. Each time we have tried it is has made Emily’s seizure worse and she gets very crabby on it.
Depakote – Just about killed Emily! Need I say more? This medication put Emily in the PICU with her liver shutting down.
Trileptal – Emily developed an allergic reaction to this medication under three months of age. She had a severe rash and fever.
Zonegran - Emily developed an allergic reaction to this medication under three months of age. She had a severe rash and fever along with hives from head to toe.
Felbatol - did not work and put her liver into complete overload!
Ketogenic Diet – This diet was tried when Emily was one years old and was not successful after 4 months so it was discontinued.
Vagus Nerve Stimulator – This was placed in Emily on September 12, 2008. It seems to make Emily feel better and it seems to have helped somewhat in controlling her clonic seizures. We rarely use the magnet to stop a seizure as we have found it really does nothing to help Emily. She does not tolerate a high rate and frequency of the VNS.
We turned off the VNS prior to Emily having her tonsils and adenoids removed in January 2011. Since we have turned off the VNS Emily's swallowing has significantly improved and she does not cry as much anymore out of discomfort. Turning off the VNS has not had any negative impact on Emily's seizures and in my opinion made Emily happy that we turned it off.
ACTH Injections – we tried this treatment for Emily when she was about 2 ½ months old. At the time she was on Dilantin, Depakote, Felbatol, Ativan and then ACTH. It is believed to be the cause of her pneumatosis which almost took her colon and her life. She only got 10 shots of this hard core medication and we will never try it again!
Emily's Current Medications are:
Dilantin - Dilantin was originally prescribed to go after Emily's tonic-clonic seizures. Dilantin is a very difficult medication for us to maintain a therapeutic level on for Emily. The therapeutic blood range for this medication ranges from 10 - 20 and Emily likes it to be around 18 - 20 for her specifically. The known side effects of this medication for Emily are: gum overgrowth, excessive hair growth, negative effect on her motor skills and ability to make sounds, high levels cause more seizures and significant dystonia (movement disorder), thick tongue, quick drops in levels cause increase in seizures, and much more.
Diazepam - Emily takes a small dose of Diazepam in hopes to control clonic seizures. For the first 2 years of her life she was on regular doses of Lorazepam (Ativan) when we got to higher levels of Ativan it made Emily super cranky, so we switched to Diazepam (Valium) and she has been much better on it the past three years. Too much Diazepam tends to make Emily crabby and overtired. So when we have to administer Diastat (emergency Valium) for seizures we can pretty much guarantee that Emily will be a mess for at least two days or more. We have multiple forms of Diazepam for Emily - liquid suspension, pills, IV form, sublingual, and Diastat.
We use the IV form the most in case where Emily's seizures are starting to spiral out of control. We have found that if we can give Emily a smaller dose of the IV form of Diazepam early on, then we do not have to use the higher dose of Diastat later. We draw up the IV form with a small syringe and needle. We then discard the needle and administer the medication rectally. It absorbs faster than the oral form and we get better results of shutting down the seizures this way.
Celontin - Emily was prescribed this medication about a year ago. It has been a wonder drug for her! She was having upwards of 1600 clonic seizures in a day. This medication went after her clonic seizures and at times has even gotten the tonic-clonic seizures to just be tonic seizures. Emily is beyond therapeutic level in this medication. The therapeutic range is from 10 - 40 and Emily is at about 45 and happy.
Neurontin - Emily takes very small doses of this medication for unknown neurological pain. Every time we take her off of it she has major crying fits and when we put her back on low doses, she is fine. She took this medication initially in hopes of using it as a seizure medication, but high doses made her too sleepy and she had urinary retention with no better seizure control.
Vimpat/Lacosomide - Emily has now been on Vimpat for about 2 months. It seems to be working well to help keep her tonic-clonic and clonic seizures under decent control. Emily is still having seizures with this medication, but we are hoping to eventually replace her Dilantin with this medicine. It was and still is very hard on her tummy every time we increase it. She gets really bad gas pains and the constipation has not improved on this medication - if anything it has gotten worse. So far we have been pretty happy with this medication.
Past seizure medications both tried and taken:
Vigabatrin/Sabril – Emily has been on Vigabatrin (Sabril) since she was about 4 months old. This medication was great for her and shut down her complex partial seizures. We have taken Emily to get the routine Electro Retinal Grams required for this medication and they have always come back fine. We have opted to not do any more ERGs on Emily because of the risk of being put under anesthesia and intubation that is required for the procedure. We have attempted to get Emily off of Vigabatrin multiple times and each time we fail, so we know that it does some good for her. However, too much of this medication makes things much worse for Emily.
Emily officially came off of Vigabatrin in late August 2011. We had attempted to get Emily off Vigabatrin six times prior to this final and successful try. Emily took Vigabatrin for over six years to help control her complex partial seizures. Since being off of Vigabatrin we have seen Emily become more alert and happy. Emily is using her vision so much more and is really beginning to communicate more with the world around her. We have not seen any fallout or breakthrough seizures as a results of stopping this medication!
Topamax – We liked to call this medication dopamax because it made Emily’s brain fuzzy and her tired. We also feel that it was the main source for Emily’s recurring urinary tract infections. Emily took this medication on three different occasions. The first time she was an infant and she kept going into acidosis every time her Topamax levels got too high. The second time she was given this was for a spell of infantile spasms for about 6 weeks. The medication seemed to work, but again the metabolic acidosis reappeared. The third time we tried it, Emily was almost 2 ½. This time the medication worked well for Emily and she had one of the best EEGs ever. Emily took Topamax for almost 2 ½ years and we found a local pharmacy that would compound it into a suspension form for us. We recently took Emily off of it because we felt it was not working anymore. As Emily came off of Topamax she really began to wake up and became much more alert! You have to really watch getting too doped up on Topamax and also keep really hydrated to ensure not getting kidney stones.
Phenobarbital – Works great in loading doses, but turned Emily into the crabby child ever! Not a medication we care to try on a regular basis.
Vitamin B6 – we tried this when Emily was 6 months old with no benefit from it.
Clobazam - Another medication that we had to get from Canada as it was not approved by the FDA in the USA at the time Emily tried it. This medication falls under the class of Benzodiazepine's which Emily seems to love - (like Ativan and Diazepam). The thought behind trying this medication is that it is supposed to have less sedating side effects. So in desperation we tried Clobazam in hopes of getting better control over Emily's clonic seizures. At first there was the typical honeymoon period where we thought it was doing great things. Then about four days into it, the world fell apart with Emily's seizures. She began to drool excessively to the point that she was begininng to choke on her own secreations. I guess what happens with this particular medication is that it really helps relax the throat muscles which caused Emily's to not be able to swallow well and thus the drooling and choking. Since Emily already has low-tone and the VNS she does not need any more strikes against her in the area of swallowing. Emily's dystonia got so bad on this medication that we were giving her Diastat three times a week plus some. We wanted so badly for this medication to work and that we could swap it out for Diazepam, but it clearly was not a good fit for Emily. This medication has an unbelievablely long half-life so it took weeks to get Emily back to her baseline after this three week trial. I was not a fan of it, but glad we at least tried it.
Lyrica – This is the sister medicine to Neurontin. We gave this to Emily when she was about 9 months old and she literally slept for days and it caused major worsening of her hypotonia. We tried it in lower doses for about 4 months with no such luck.
Lamictal – We tried this one three time with negative results each time. It caused severe irritability and mood swings with Emily.
Keppra – Keppra has also been tried three times with Emily. Each time we have tried it is has made Emily’s seizure worse and she gets very crabby on it.
Depakote – Just about killed Emily! Need I say more? This medication put Emily in the PICU with her liver shutting down.
Trileptal – Emily developed an allergic reaction to this medication under three months of age. She had a severe rash and fever.
Zonegran - Emily developed an allergic reaction to this medication under three months of age. She had a severe rash and fever along with hives from head to toe.
Felbatol - did not work and put her liver into complete overload!
Ketogenic Diet – This diet was tried when Emily was one years old and was not successful after 4 months so it was discontinued.
Vagus Nerve Stimulator – This was placed in Emily on September 12, 2008. It seems to make Emily feel better and it seems to have helped somewhat in controlling her clonic seizures. We rarely use the magnet to stop a seizure as we have found it really does nothing to help Emily. She does not tolerate a high rate and frequency of the VNS.
We turned off the VNS prior to Emily having her tonsils and adenoids removed in January 2011. Since we have turned off the VNS Emily's swallowing has significantly improved and she does not cry as much anymore out of discomfort. Turning off the VNS has not had any negative impact on Emily's seizures and in my opinion made Emily happy that we turned it off.
ACTH Injections – we tried this treatment for Emily when she was about 2 ½ months old. At the time she was on Dilantin, Depakote, Felbatol, Ativan and then ACTH. It is believed to be the cause of her pneumatosis which almost took her colon and her life. She only got 10 shots of this hard core medication and we will never try it again!
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