ACTH Treatment - Week 1
Today is Jenelle's 7th day on the ACTH injections. Poor little thing is starting to get track marks on her thighs, but she is still taking the shots well and has only cried once or twice. We had a scare on Sunday with her blood pressure reaching 190 over 160 - too high even for an adult. We are using just a hand pump blood pressure gage with a stethoscope, but I asked my next door neighbor who is in nursing school to come check me. She happened to have a friend visiting who was a Nurse at CHOC for 12 years and she checked it as well. Both got similar readings. So, we went to the emergency on Sunday night at the request of the doctor. We didn't even wait to get in, and wouldn't you know her pressure dropped to 109 over 64 when they first checked it. They monitored her in the ER for two hours and sent us home. Better safe than sorry!
Jenelle is still having seizures. Yesterday she had more than any other day on the injections so far. While this is discouraging, I am being told by fellow "IS parents" I've met on an internet support group for Infantile Spasms that it could take the full two to three weeks to stop the seizures. In fact, one parent said their child had a very bad day of seizures before she stopped completely the following day. The "grand finale", or so she described. Hopefully yesterday was that for Jenelle.
Other than the blood pressure, Jenelle is doing well. She sleeps a lot, and seems to be more withdrawn, but she does have her playful moments when she turns into a cooing chatter box, and rolls across the room. I will keep posting update weekly.
Tuesday, October 07, 2003
Thursday, October 02, 2003
Jenelle was released from the hospital today at around 5:00 p.m. Brett and I now know how to give shots, and we each gave Jenelle a shot before she was released. She didn't cry for either of us, and hasn't cried for a shot since! Jenelle will be getting her ACTH in "gel" form through "intra-musclular" injection twice a day at home. The needle is an inch and a half long! If all goes well and she doesn't have serious side effects, her next hospital stay will be in two weeks for another Video EEG. She has only had 4 injections so far, but seems relatively unphased. She has been a little sleepier than usual, but that is all we've noticed so far. We also have to check her urine for protien and sugar, her stool for blood, and her temperature once a day while at home. We were given little "testing" devices for all of this, and instructions on how to do each as well (the urine and stool that is). We also need to check her blood pressure twice a week, and we purchased a stethoscope and infant blood pressure meter thingy (not sure what its actually called or whether I can pronounce it) A home health care nurse is going to visit us the next two days, then once a week to make sure all is well. Jenelle also needs to see our Peditrician once a week and the Neurologist every two weeks so they can monitor her progress. Needless to say, she is being well monitored, and we hope things remain the same (knock on wood.)
She is still having seizures, and some seem to be bigger than usual, but the same thing happened when we started Phenobarbitol, so we hope it is a trend. Ironically, Jenelle's only day with very few seizures was the day after the B6 treatment, and before we started the ACTH. The nurses at CHOC were absolutely wonderful. We had the same day nurse for 3 days, and she paraded Jenelle around the nurses station before we left. We hope to see her again in 2 weeks.
Big brother Jack is doing well and seems very happy to have Mommy home (I stayed at the hospital overnight the entire week.) He seems a little confused because things are obviously different, but is really holding up well. He has moments when he reminds us that he is 2 (ie: tantrums) but as long as we keep him active and playing, he seems to be at his best. Brett's parents brought him to the hospital on Tuesday and he cried at first and immediately wanted to go home. When he realized Jenelle was in the crib, he wanted to touch her, and eventually threw his sippy cup onto her head to wake her up! We thought it was important for him to see Jenelle in the hospital, so he could realize where she and Mommy have been. Overally, he's scared and confused, but glad things are somewhat normal with Mommy and Jenelle at home. He's picked up on my "pet name" for Jenelle and calls her his "Baby Girl!"
So now, we are at home and keeping things clean and sterile. We've made Jenelle's room at the "sterile zone" and plan to keep her in there as much as possible, or in her pack n play outside in the living room. She will be out of daycare for 6 weeks, and hopefully not back in the hospital too soon. Brett and I are holding up well. We have our moments - its not easy to see your child be poked and proded while they are screaming! These next few weeks will be difficult, but we'll get through it, and hopefully our little girl will be a new person!
She is still having seizures, and some seem to be bigger than usual, but the same thing happened when we started Phenobarbitol, so we hope it is a trend. Ironically, Jenelle's only day with very few seizures was the day after the B6 treatment, and before we started the ACTH. The nurses at CHOC were absolutely wonderful. We had the same day nurse for 3 days, and she paraded Jenelle around the nurses station before we left. We hope to see her again in 2 weeks.
Big brother Jack is doing well and seems very happy to have Mommy home (I stayed at the hospital overnight the entire week.) He seems a little confused because things are obviously different, but is really holding up well. He has moments when he reminds us that he is 2 (ie: tantrums) but as long as we keep him active and playing, he seems to be at his best. Brett's parents brought him to the hospital on Tuesday and he cried at first and immediately wanted to go home. When he realized Jenelle was in the crib, he wanted to touch her, and eventually threw his sippy cup onto her head to wake her up! We thought it was important for him to see Jenelle in the hospital, so he could realize where she and Mommy have been. Overally, he's scared and confused, but glad things are somewhat normal with Mommy and Jenelle at home. He's picked up on my "pet name" for Jenelle and calls her his "Baby Girl!"
So now, we are at home and keeping things clean and sterile. We've made Jenelle's room at the "sterile zone" and plan to keep her in there as much as possible, or in her pack n play outside in the living room. She will be out of daycare for 6 weeks, and hopefully not back in the hospital too soon. Brett and I are holding up well. We have our moments - its not easy to see your child be poked and proded while they are screaming! These next few weeks will be difficult, but we'll get through it, and hopefully our little girl will be a new person!
Monday, September 29, 2003
It was a long weekend and Brett and I seemed to have changed our minds hourly about which treatment to begin for Jenelle. After much thought we decided to go with the FDA approved ACTH treatment as our first choice. We still have a prescription of the Vigabatrin coming from Canada in case we eventually need it. Basically, although the potential side effects of ACTH will be difficult, they are not permanent. Brett has had poor eyesight all his life, and he said he didn't want to risk that for Jenelle, in that the vision loss from Vigabatrin is permanent. Also, we know what the long term results are with ACTH, whereas there are no long term results from the Vigabatrin, so we just didn't want to regret using it 20 years from now unless we really needed to use it (i.e.: if ACTH doesn't work.)
Jenelle was admitted to Children's Hospital Orange County and we started another Video EEG for her B6 treatment. Once they were ready to do the B6, Jenelle had to be taken to the PICU for the treatment. Apparently if she had truly been B6 deficient, the injection of B6 would throw her system into shock, and make her stop breathing. Better safe in the PICU than sorry! Jenelle did fine with the B6, and obviously, it didn't stop her seizures.
Jenelle had her spinal tap done the following day. The resident that performed the procedure said it went very well, and she got everything on the first "poke" with very little blood! We won't have those test results for at least 6 weeks. We will start the ACTH on Wednesday. Most likely, she'll stay in the hospital until Thursday or Friday at the latest. She has a private room which is nice, but also it was given to us because the ACTH will weaken her immune system. If all goes well and she is home on Thursday, she will go back in another week or two to repeat the 24 hour Video EEG to see if the seizures have stopped. If at that time, she is still having seizures, we'll wean her off the ACTH and start Vigabatrin.
Jenelle was admitted to Children's Hospital Orange County and we started another Video EEG for her B6 treatment. Once they were ready to do the B6, Jenelle had to be taken to the PICU for the treatment. Apparently if she had truly been B6 deficient, the injection of B6 would throw her system into shock, and make her stop breathing. Better safe in the PICU than sorry! Jenelle did fine with the B6, and obviously, it didn't stop her seizures.
Jenelle had her spinal tap done the following day. The resident that performed the procedure said it went very well, and she got everything on the first "poke" with very little blood! We won't have those test results for at least 6 weeks. We will start the ACTH on Wednesday. Most likely, she'll stay in the hospital until Thursday or Friday at the latest. She has a private room which is nice, but also it was given to us because the ACTH will weaken her immune system. If all goes well and she is home on Thursday, she will go back in another week or two to repeat the 24 hour Video EEG to see if the seizures have stopped. If at that time, she is still having seizures, we'll wean her off the ACTH and start Vigabatrin.
Thursday, September 25, 2003
We traveled to UCLA to meet with Dr. W. Donald Shields who is in the Pediatric Neurology Department and is the head of UCLA's Epilepsy Program. While we were joking that we were there to check out UCLA as a possible college for Jenelle, we were very anxious to get some answers about her diagnosis of Infantile Spasms. Everyone at UCLA was absolutely wonderful, and we got a lot of straight-forward answers, as well as some choices to consider. Dr. Shields did not "sugar-coat" any of the information and spent lots of time talking with us. We also met his nurse Sue, and she spent a great deal of time with us answering lots of questions. She was absolutely wonderful and so very understanding and supportive. What a great team they were.
First, the "hard" facts... Dr. Shields confirmed that Jenelle's diagnosis is Infantile Spasms. We were not really questioning the diagnosis, but he pointed out two of Jenelle's EEG patterns, and said that unmistakably, those were signs of IS. In a way, it is comforting to have such confirmation and know what we are fighting. Dr. Shields considered Jenelle's history, and felt that her global delays were fairly severe. Because of this, he felt Jenelle has a strong chance of being a part of that "bad" 50% of patients with IS... those with the "bad" prognosis as well. Basically, for Jenelle to be in the "good" 50%, we need to hope that her seizures were there from day one, and that we just didn't recognize them, then this would be the cause of her development delays, and once we stop her seizures, she will develop "normally." He also felt that Jenelle has a 30% or greater chance of being Autistic, and a 30% or greater chance of developing another form of Epilepsy around the age of two called Lennox Gastaut Syndrome (LGS), which is similar to Infantile Spasms, but the prognosis is even more severe. If her seizures had gone unnoticed or untreated, she would definitely develop LGS. So, those are the "hard" facts based on Jenelle's history, from the nation's leading expert in the field. Dr. Shields treats only patients with this diagnosis, so he knows the statistics well.
So, we now have to make a decision between two drugs. One drug is the ACTH steroid. ACTH is FDA approved (and covered by insurance), begins in the hospital, is an injection that must be given twice a day for 6 weeks, has serious, life threatening side effects (including decreased immune system) and has a 50% chance of working. Once treatment begins, we'll know within 2 weeks if it is working, and if it stops her seizures, she is done with the drug in 6 weeks and may never need it again, unless she has a relapse. The side effects are reversible. The other drug is called Vigabatrin (Sabril) which is not FDA approved and must be obtained in either Canada or Mexico. Vigabatrin comes in pill form, and does not have the severe side effects associated with ACTH (including the fact that it will not alter her immune system, and she does not need hospitalization.) Vigabatrin has been in use everywhere except the US for 10 years, and has not been approved by the FDA because there is a report that some patients (1 in 3) experience partial and permanent vision loss (most end up with tunnel vision). When describing this "side effect" of Vigabatrin, Dr. Shields said basically we're choosing between a "mentally retarded brain" for life, or "vision loss", which of the two, the vision loss is acceptable if the brain can function normally. If it works, Jenelle could remain on Vigabatrin for as little as 3 years, or the rest of her life.
Both drugs have about a 50 - 70% success rate, and often times, one drug does not work for a patient, but the other will. So, it is possible that we can choose one drug, but end up needing the other two weeks later. Dr. Shields says he also has patients using both drugs at the same time. It just depends on what works for the individual to stop the seizures - sometimes each person needs a different "mix" for it to work. Dr. Shields agreed with our neurologists (Dr. Phillips) plan for treatment for Jenelle, starting with a B6 treatment, and the low dose of ACTH, if we didn't want to use the Vigabatrin. Dr. Shields also recommended doing a spinal tap to rule out three other rare metabolic disorders that can only be detected in the spinal fluid. He also recommended that we would be more comfortable treating Jenelle at CHOC since it was closer to home, but offered that they were a phone call away if we needed anything in regards to the Vigabatrin, if we go that route.
We spoke to Jenelle's Neurologist, Dr. Phillips on the ride home and again the next day about our options. Dr. Phillips does not want to start with Vigabatrin, and will not provide a prescription for it- he is just not comfortable with the ethical issues concerning his license and we understand. His reasoning for this is that Vigabatrin does not have any long term studies so there is no evidence that Jenelle's seizures could not return at age 5, and so on. ACTH has been used for about 50 years, and there is evidence that if it stops the seizures, it does so permanently. He said if we could get the Vigabatrin, he would help us use it. The plan as it stands today is that Jenelle will be admitted to CHOC on Monday, September 29 for a spinal tap, a video EEG and a B6 Treatment. We need to choose which drug we plan to start by Monday.
Brett and I realize that there is no "wrong" choice here, in that both will help Jenelle, but there are many things to consider with both drugs. We spoke to Dr. Shield's nurse Sue a few times since our appoitnment and she is making arrangements to fax a prescription to Canada for us to get the Vigabatrin - in case that is our choice. It would be so much easier if it were as simple as "it is a tumor and it needs to be removed", but with the choice of two drugs, with completely different and complex things to consider involving each, we really have a tough decision to make this weekend.
First, the "hard" facts... Dr. Shields confirmed that Jenelle's diagnosis is Infantile Spasms. We were not really questioning the diagnosis, but he pointed out two of Jenelle's EEG patterns, and said that unmistakably, those were signs of IS. In a way, it is comforting to have such confirmation and know what we are fighting. Dr. Shields considered Jenelle's history, and felt that her global delays were fairly severe. Because of this, he felt Jenelle has a strong chance of being a part of that "bad" 50% of patients with IS... those with the "bad" prognosis as well. Basically, for Jenelle to be in the "good" 50%, we need to hope that her seizures were there from day one, and that we just didn't recognize them, then this would be the cause of her development delays, and once we stop her seizures, she will develop "normally." He also felt that Jenelle has a 30% or greater chance of being Autistic, and a 30% or greater chance of developing another form of Epilepsy around the age of two called Lennox Gastaut Syndrome (LGS), which is similar to Infantile Spasms, but the prognosis is even more severe. If her seizures had gone unnoticed or untreated, she would definitely develop LGS. So, those are the "hard" facts based on Jenelle's history, from the nation's leading expert in the field. Dr. Shields treats only patients with this diagnosis, so he knows the statistics well.
So, we now have to make a decision between two drugs. One drug is the ACTH steroid. ACTH is FDA approved (and covered by insurance), begins in the hospital, is an injection that must be given twice a day for 6 weeks, has serious, life threatening side effects (including decreased immune system) and has a 50% chance of working. Once treatment begins, we'll know within 2 weeks if it is working, and if it stops her seizures, she is done with the drug in 6 weeks and may never need it again, unless she has a relapse. The side effects are reversible. The other drug is called Vigabatrin (Sabril) which is not FDA approved and must be obtained in either Canada or Mexico. Vigabatrin comes in pill form, and does not have the severe side effects associated with ACTH (including the fact that it will not alter her immune system, and she does not need hospitalization.) Vigabatrin has been in use everywhere except the US for 10 years, and has not been approved by the FDA because there is a report that some patients (1 in 3) experience partial and permanent vision loss (most end up with tunnel vision). When describing this "side effect" of Vigabatrin, Dr. Shields said basically we're choosing between a "mentally retarded brain" for life, or "vision loss", which of the two, the vision loss is acceptable if the brain can function normally. If it works, Jenelle could remain on Vigabatrin for as little as 3 years, or the rest of her life.
Both drugs have about a 50 - 70% success rate, and often times, one drug does not work for a patient, but the other will. So, it is possible that we can choose one drug, but end up needing the other two weeks later. Dr. Shields says he also has patients using both drugs at the same time. It just depends on what works for the individual to stop the seizures - sometimes each person needs a different "mix" for it to work. Dr. Shields agreed with our neurologists (Dr. Phillips) plan for treatment for Jenelle, starting with a B6 treatment, and the low dose of ACTH, if we didn't want to use the Vigabatrin. Dr. Shields also recommended doing a spinal tap to rule out three other rare metabolic disorders that can only be detected in the spinal fluid. He also recommended that we would be more comfortable treating Jenelle at CHOC since it was closer to home, but offered that they were a phone call away if we needed anything in regards to the Vigabatrin, if we go that route.
We spoke to Jenelle's Neurologist, Dr. Phillips on the ride home and again the next day about our options. Dr. Phillips does not want to start with Vigabatrin, and will not provide a prescription for it- he is just not comfortable with the ethical issues concerning his license and we understand. His reasoning for this is that Vigabatrin does not have any long term studies so there is no evidence that Jenelle's seizures could not return at age 5, and so on. ACTH has been used for about 50 years, and there is evidence that if it stops the seizures, it does so permanently. He said if we could get the Vigabatrin, he would help us use it. The plan as it stands today is that Jenelle will be admitted to CHOC on Monday, September 29 for a spinal tap, a video EEG and a B6 Treatment. We need to choose which drug we plan to start by Monday.
Brett and I realize that there is no "wrong" choice here, in that both will help Jenelle, but there are many things to consider with both drugs. We spoke to Dr. Shield's nurse Sue a few times since our appoitnment and she is making arrangements to fax a prescription to Canada for us to get the Vigabatrin - in case that is our choice. It would be so much easier if it were as simple as "it is a tumor and it needs to be removed", but with the choice of two drugs, with completely different and complex things to consider involving each, we really have a tough decision to make this weekend.
Wednesday, September 17, 2003
I spoke to Dr. Phillips today, and I informed him of our appointment with Dr. Shields at UCLA next Thursday. Upon hearing this, Dr. Phillips said that he wants us to wait on treatment until we see Dr. Shields, and at the very latest, check Jenelle into CHOC on Friday the 26th to begin treatment. Dr. Phillips said that Dr. Shields is one of the top 5 Pediatric Neurologist in the country, and probably the best of everyone in regards to Infantile Spasms. He was very excited, and wanted to hear what Dr. Shields recommends. Dr. Phillips also told us that Jenelle's case is so interesting, he would have no problems if Dr. Shields wanted to keep Jenelle at UCLA for treatment, but either way, he wants treatment to begin as quickly as possible after our consultation. This is very comforting to hear. We didn't really want the second opinion to confirm her diagnosis, but we think it will be very comforting and beneficial in helping us choose the best treatment for Jenelle.
We also spoke about the various treatment options, and he explained how we will begin the ACTH, if that is the route we choose. Most likely, Jenelle will be admitted to the hospital on Friday, September 26th, and he will start an IV first with a Vitamin B6 injection along with an EEG running. He said within an hour of the Vitamin B6, we should know whether or not Jenelle's seizures are from a Vitamin B6 deficiency, and if so, we may not need ACTH at all. This is also very encouraging. So, we are in a holding pattern until next Thursday! We plan to enjoy the weekend with Jenelle and get the home organized for this long road ahead whether or not it be UCLA or CHOC.
We also spoke about the various treatment options, and he explained how we will begin the ACTH, if that is the route we choose. Most likely, Jenelle will be admitted to the hospital on Friday, September 26th, and he will start an IV first with a Vitamin B6 injection along with an EEG running. He said within an hour of the Vitamin B6, we should know whether or not Jenelle's seizures are from a Vitamin B6 deficiency, and if so, we may not need ACTH at all. This is also very encouraging. So, we are in a holding pattern until next Thursday! We plan to enjoy the weekend with Jenelle and get the home organized for this long road ahead whether or not it be UCLA or CHOC.
Tuesday, September 16, 2003
Brett spoke with Dr. Phillips on the phone today, and he informed Brett that after reviewing all of the results from Jenelle's 24 hour Video EEG, he is now convinced that her diagnosis is Infantile Spasms. He wants Jenelle to start the steroid treatment as quickly soon as possible, and spoke to Brett about our treatment options. Our choices are either ACTH (steroid injections) or Topomax. He believes the ACTH is aggressive and has the best overall results, however unfortunately, it also has the worst side effects. If we start Jenelle on the ACTH, it is possible to do another EEG in a week, and we will know that quickly whether or not it is working. Though the side effects are risky, Brett and I feel we should give Jenelle every possible chance to beat this and we are inclined to go with the aggressive ACTH. We still are still deciding though.
Regardless of which drug we use, Jenelle's immune system will be decreased, and we will need to limit visitors at the house, and our activities during this time. Jenelle will be out of daycare for at least 7 weeks so that she is not exposed to any sickness at daycare. CHOC hospital encourages visitors, but they should be healthy, and use precautions so as not to expose Jenelle or other patients to any sickness. Dr. Phillips gave us a day to discuss our options, and because I had some more questions, we planned to talk the next day about our decision.
Regardless of which drug we use, Jenelle's immune system will be decreased, and we will need to limit visitors at the house, and our activities during this time. Jenelle will be out of daycare for at least 7 weeks so that she is not exposed to any sickness at daycare. CHOC hospital encourages visitors, but they should be healthy, and use precautions so as not to expose Jenelle or other patients to any sickness. Dr. Phillips gave us a day to discuss our options, and because I had some more questions, we planned to talk the next day about our decision.
Friday, September 12, 2003
Brett and I have been overwhelmed by the many calls and emails of support, love and prayers for our family. We are still trying to come to terms with our emotions and with trying to make such quick decisions for Jenelle. This has all happened very quickly, and it helps to know we have so much support and love. Thank you.
Jenelle's 24 hour Video EEG began on Thursday, September 11, 2003 at 11:00 a.m.. She was released the next day about the same time. It was a little weird checking her into Children's Hospital on such an emotional anniversary as September 11. The test went well, and I stayed with her the entire time, and Brett only left that night to take care of Jack. I "marked" many, many "events" that may or may not have been seizures - over a hundred I believe. Dr. Phillips arrived the next morning and met with us before releasing Jenelle. He studied some of my marked events for about 10 minutes and felt some were seizures, and that some were not. He is still not certain if she has Infantile Spasms which means he was not ready to start the aggressive treatment that day. The VEEG results will take two days to process, and we will talk with him again on Monday. Because we confirmed that Jenelle is having seizures, he placed her on Phenobarbital which is an anti-seizure medication common for patients with Epilepsy. Jenelle definitely has Epilepsy, what form we are not certain. True "IS" will not respond well to the Phenobarbital (meaning the seizures will continue) so that may help us in the diagnosis.
Through another Mom friend from daycare (the same who suggested Jenelle might be having seizures) we were given the phone number for a parent who's daughter is a patient of Dr. W. Donald Shields at UCLA. Dr. Shields is the leading authority on the West Coast (if not the nation) for Infantile Spasms. She gave me a private number for his personal nurse assistant, I left a message with her during the night of Jenelle's VEEG. The nurse called us back minutes after Dr. Phillips left Jenelle's hospital room. We mentioned UCLA to Dr. Phillips, and he was all for us contacting them as well. Dr. Shield's nurse got some more information about Jenelle and her history, and said she would speak to Dr. Shields that afternoon to see if he wants to personally see Jenelle. She promised to get back to us that day, and she spoke to Brett later in the day informing him we would be seeing Dr. Shields on Thursday, September 26, 2003 at 1:00 p.m. When I originally spoke to Dr. Shields's nurse, she said they knew Dr. Phillips, and we were already seeing one of the best in regards to Epilepsy. That was comforting.
So, we had some more time to wait, and now an appointment for a second opinion. It is still very possible that Jenelle could be back at CHOC next week sometime to start the steroid treatment. Regardless, we do know that she is having seizures, and we need to stop them in any way possible so we can avoid any type of brain damage. At least we know have some idea of the direction we need to go.
Jenelle's 24 hour Video EEG began on Thursday, September 11, 2003 at 11:00 a.m.. She was released the next day about the same time. It was a little weird checking her into Children's Hospital on such an emotional anniversary as September 11. The test went well, and I stayed with her the entire time, and Brett only left that night to take care of Jack. I "marked" many, many "events" that may or may not have been seizures - over a hundred I believe. Dr. Phillips arrived the next morning and met with us before releasing Jenelle. He studied some of my marked events for about 10 minutes and felt some were seizures, and that some were not. He is still not certain if she has Infantile Spasms which means he was not ready to start the aggressive treatment that day. The VEEG results will take two days to process, and we will talk with him again on Monday. Because we confirmed that Jenelle is having seizures, he placed her on Phenobarbital which is an anti-seizure medication common for patients with Epilepsy. Jenelle definitely has Epilepsy, what form we are not certain. True "IS" will not respond well to the Phenobarbital (meaning the seizures will continue) so that may help us in the diagnosis.
Through another Mom friend from daycare (the same who suggested Jenelle might be having seizures) we were given the phone number for a parent who's daughter is a patient of Dr. W. Donald Shields at UCLA. Dr. Shields is the leading authority on the West Coast (if not the nation) for Infantile Spasms. She gave me a private number for his personal nurse assistant, I left a message with her during the night of Jenelle's VEEG. The nurse called us back minutes after Dr. Phillips left Jenelle's hospital room. We mentioned UCLA to Dr. Phillips, and he was all for us contacting them as well. Dr. Shield's nurse got some more information about Jenelle and her history, and said she would speak to Dr. Shields that afternoon to see if he wants to personally see Jenelle. She promised to get back to us that day, and she spoke to Brett later in the day informing him we would be seeing Dr. Shields on Thursday, September 26, 2003 at 1:00 p.m. When I originally spoke to Dr. Shields's nurse, she said they knew Dr. Phillips, and we were already seeing one of the best in regards to Epilepsy. That was comforting.
So, we had some more time to wait, and now an appointment for a second opinion. It is still very possible that Jenelle could be back at CHOC next week sometime to start the steroid treatment. Regardless, we do know that she is having seizures, and we need to stop them in any way possible so we can avoid any type of brain damage. At least we know have some idea of the direction we need to go.
Subscribe to:
Posts (Atom)
Posts
