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Old 10-17-2004, 06:41 AM   #1
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beckybeck61 HB User
Unhappy Help, 11 month old in ICU with terrible seizures

My 11 month old grand-daughter is currently taking 375 mg. of Topamax, 31 mil. of phenabarbotol, 6.4 ml. of Keppra a day and is still having seizures. She had one Wednesday for 2 hours and was put in ICU on a ventalator. She was doing good so they took her off of the vent and put her in intermediate ICU the next evening. Just starting to come around on Friday and gaining back some of her muscle control and smiles and had an hour one hit her again on Saturday morning. I know new meds and higher doses were added after her one on Wednesday and she still had another one. She is back in ICU and in on a ventalotor with a feeding tube. They did surgery also in put in a central line so they could get meds to her faster if need be. She is a very very hard stick-her veins blow all the time. They also mentioned on Wednesday that her liver was a little enlarged due to her meds and eventually they might have to make a choice and decide to leave her on the meds and try to control her seizures even though the meds are hurting her or take her off of the meds to help her liver and let her have the seizures even though they are getting very dangerous with length. Not any good choices. She does have very aggressive seizures, they started at 3 months of age.
Does anyone know of the #1 hospital for pediatric epilepsy? We are trying despartely to get the help she needs before it is too late for her.

 
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Old 10-17-2004, 10:01 AM   #2
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tkdmom96 HB User
Re: Help, 11 month old in ICU with terrible seizures

Hi,

Where are you located?

Johns Hopkins, Columbia/New York Presbyterian, Cleveland Clinic, University of Texas-Houston...are some I know of...

Do research under "Pediatric Epilepsy Centers", "Comprehensive Epilepsy Centers", "Comprehensive Epilepsy Clinics", "Epileptologist" or any combos of words to get the info you need. An Epileptologist is a specialist that deals specifically with Epilepsy and is up on all new meds and treatments. I HIGHLY recommend this!

We searched for a specialist for our daughter, who was diagnosed at 9 months and is now 16 years old. She recently had surgery to remove the area where the seizures were starting from. So we had been through 15 years of seizures and 7 different meds that did not work. The hospital we decided on was Children's Hospital of Wisconsin, Dr. Mary Zupanc (Epileptologist).

If you have any further questions, please don't hesitate to post...all my best to your granddaughter...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 10-17-2004, 06:18 PM   #3
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beckybeck61 HB User
Re: Help, 11 month old in ICU with terrible seizures

We live in Peoria, Illinois, but we also take her to St. Louis Children's Hospital in Missouri. She does have a neurologist (pediatric) We just feel like they are missing something somewhere--they are getting spaced further apart but are longer in length. The shortest one she has ever had was 25 minutes the longest 2 hours. They are talking about putting her on the Ketogenic Diet--I hope this works, it seems like our last resort. Right now surgery is not an option because they are coming from all over her brain. Please keep Rayvn in your prayers, we could use all we can get. Thanks for the info, you have been so kind.

Becky

 
Old 10-17-2004, 09:09 PM   #4
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Phoebe HB User
Re: Help, 11 month old in ICU with terrible seizures

I am so sorry this is happening. I do not understand how the hospital, an ICU no less, is allowing her to seize so long when the time for action is 5 minutes not the great lengths you mentioned. After 30 minutes of seizing nonstop, permanent brain damage can occur. Sinvcethey are not stopping her seizures in anything close to a timely manner, they are doing her harm in that respect. Too much meds can cause seizures too just as too little camn. She seens to be on a good bit of meds and Topamax is a heavy med. If they do not seem to be beneftting her, then seems as thought they would try others. I don't know what tyoe of seizures your Gd has but do you know if the med are specific to her type of seizures? Also you mentioned a pediatric neurologist was treating her. Is this doc an Epileptologist as mentioned above? A neurologist is not as trained as the EPileptologist and a neuro will very often miss what an Epi may not. There are many causes of seizures, and some are metabolic, cardiac, etc so the neuro prob not be as up to date on these. You really need a Comprehensive Epilepsy Center that has a Pediatric Epileptologist, SOON. A Pediatric Neurologist is NOT the same thing. I did a Google Search and then Searched Within those Results to narrow it to Illinois. I found some Comprehensive Epilepsy Centers in Illinois. I have heard Rush mentioned by others on forums I visit. You do want a doc who has done the Fellowship in Epilepsy or Neurophysiology to see your Gd. I did not see the Ketogenic Diet mentioned on Rush's website. I encourage you to do a search and then talk to them to see if they have all components you need and want before choosing. You are looking for: 1) a Comprehensive Epilepsy Center with 2) a Pediatric EPILEPTOLOGIST who has done the Fellowship in Epilepsy or Neurophysiology, 3) that offers all treatment modalities including the Diet 4) has years of experience behind them in this area, and 5) is patient oriented and is able to provide you with former patients parents to talk to. I hope this helps, but please do a lot of research. Keep us posted. I wish you and your Gd the best. There is no excuse to allow anyone to seize that long!Phoebe

 
Old 10-18-2004, 04:47 AM   #5
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Re: Help, 11 month old in ICU with terrible seizures

I can not understand alot of things that are going on right now! They (ER staff & ICU) try to get her seizures to stop but nothing they seem to do works. They state that she has a very aggressive seizure disorder. None of them have ever been under 25 minutes, That is why we are so afraid that brain damage or death will occur. When she starts at home-her mom and dad gave her the Diastat (5mg.) right at 5 minutes which just seems to be like giving her nothing, waited the 15 minutes like they say to do and then gave her another dose, another 15 minutes and then 1/2 of another dose. We live 40 miles from the hospital and our ambulance was intercepted with Advanced Medical (staffed with Life Flight doctors and nurses) and They gave her more then and it did not stop--they got to ER and just started loading her with drugs to stop it, they had to take a big needle and shove it into her bone in her leg to get the meds to her and nothing was working so they had to intubate her and paralyze her to get it to stop--(which took a total time of 2 hours)
Her livers is starting to get enlarged because of the medication and on top of the seizure the other night they discovered that she now has a Heart murmer. We are waiting until she really comes around to see if any damage has been done to her this time. She did manage a little bit of a smile yesterday when she opened her eyes for the first time and mom and dad were talking to her. she is a tough little bird.
I will definately be checking on the web site mentioned above-- I would think that the doctors at St. Louis Children's Hospital are epileptoligist since they have 22 Epilepsy doctors on staff there. They are the ones wanting to put her on the Ketogentic Diet, they say she will be hospitalized for 3-4 days while they start it and train mom and dad and me (g-ma and whoever else may be watching her) on the diet. We do know that she has to fast for 2 days and all meds stop. You have been very helpful and thank you for the info. Becky

 
Old 10-18-2004, 08:34 AM   #6
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tkdmom96 HB User
Re: Help, 11 month old in ICU with terrible seizures

Hi Becky,

The above post (Phoebe) is the person who is Katie's mentor. We found a post of hers here, a little over 2 years ago that sent us looking for a Pediatric EPILEPTOLOGIST. It made a huge difference in their approach to Katie's care.
I realize not everyone is a surgical candidate but the type of care is what brought us to this point. Had we not found an Epileptologist, Katie would still be uncontrolled.

I highly recommend looking further. DO NOT worry about anyone's "feelings" or loyalty issues. Your first concern is your GD and her quality of life. It sounds as though she needs AGGRESSIVE action immediately.

Please remember this...many "specialists" (including pediatric neurologists) think they know everything and can be quite errogant at times. Especially when you question them. We have seen this personally, over 15 years. If you feel uncomfortable or are not sure about what is going on, MOVE ON.

As Phoebe mentioned: too much medication and the wrong medication for her seizure type can cause more seizures. It is a balancing act. Also, the info she gave on different reasons for seizures is important. Especially now that you mention she has a HEART murmer. Is there a cardiologist involved now? There should be, to work with the neuro.

Please check to see what doc there has a fellowship in epilepsy. That will tell whether or not they are an EPILEPTOLOGIST.

We are in Milwaukee, that is where our EPI (short for Epileptologist) is, at Children's Hospital of WI. Not all Chlidren's Hospitals are the same as far as care and specialties either. Epileptologists are far and few between yet. They are trying to get more neuros to go for the extra training. By the way, our EPI has been doing this for 20+ years and is one of the most noted across the country, along with Dr. Wylie from the Cleveland Clinic in Ohio. There are others as well.

We will add Rayvn to our prayer list...she is at a critical time of brain development, up to the age of 8. Please take care of yourselves and our thoughts & prayers are with you...post if you need us for anything

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Last edited by tkdmom96; 10-19-2004 at 07:08 PM.

 
Old 10-19-2004, 02:27 PM   #7
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beckybeck61 HB User
Re: Help, 11 month old in ICU with terrible seizures

Rayvn's doctors in St. Louis are Epileptologist, thanks for having me check though because I was not sure. Here is the update on Rayvn---she was moved out of ICU and placed in intermediate ICU yesterday (Oct. 18th), she is off ventalator, but still has feeding tube. She is slowly being tapered off of her Topamax (remember she was taking 375 mg. a day) so that she can start the Ketogenic Diet down at St. Louis Children's Hospital. She is having surgery tomorrow to put in a permanent Central Line, with the tapering of the topamax they are expecting more seizures (hope they are wrong). the topamax needs to be out of her system before they can start the diet. When she is off of it they will transfer her to St. Louis by ambulance or Life Flight. Have you ever heard of anyone on this diet for seizures? If so did it help and was it hard to do? I am really curious- I have been doing a lot of research online but would like to hear from people personally that have done it. Thank you for being here with info--I appreciate it and please keep her in your prayers, she has a tough road ahead of her.

Becky

 
Old 10-19-2004, 07:23 PM   #8
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tkdmom96 HB User
Re: Help, 11 month old in ICU with terrible seizures

Hi Becky,

Happy to hear an Epi is involved!

If you look back in the threads you will find discussion on the keto diet. It is MUCH easier when started young. That way food "favorites" and memories about food haven't been formed. It is a crude diet to follow. Lots of cream and very high in fat. That is the reason it works. I don't know alot about it, but have seen kids that were on the EMU (Epilepsy Monitoring Unit) start the diet. They were in for 3 or 4 days to start the diet. We saw at least 4 or 5 kids over the different times Katie was up there for her testings.

There is a movie that was on tv about a child with E who went on the keto diet and has been seizure free for years. Meryl Streep plays the mom, I forgot the title. It was made over the last 5 years. The producer of the movie made it to bring the info to the forefront. The movie is about HIS so's journey. I believe the boy is now 15 or 16. See if you can find it online. I know in the movie they went to Johns Hopkins to start the diet because there is a lady (nurse practitioner) that is amazing with the keto diet. She has been doing it for 30 or 40 years. She is very well known and has tried to retire a couple of times, but she is so good, they won't let her.

It is an exact science. You have to constantly adjust the diet as the kids gain weight and grow. You have to weigh things to the gram/ounce etc. And only so much food is allowed for each meal. Period. Pay close attention to the sugar info you find as well. I think it's a no,no as are many carbs, like Cheerios.

Start a new thread and someone should answer you on the keto diet. What I gave you above is just what I have learned from parents at the hospital and what I have heard.

All my best, your GD is lucky to have such a devoted and loving Grandma to help seek info for her treatment,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 10-20-2004, 09:23 AM   #9
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Phoebe HB User
Re: Help, 11 month old in ICU with terrible seizures

I am happy that she seems to be making some progress and that there is an Epi involved too. The name of the movie about the Diet is called, First Do No Harm with Meryl Streep as the Mom. It was a made for TV movie so you may have to order it from the Video store, but I think you can get it. They may even have a copy of it. It is very realistic. It is about the real life difficulties that family had before the Mom decided to take matters into her own hands. She did her research and found the Diet. There have been many people who have tried the diet and may were successful. As the Dietician in the movie said, 'no parent that she has worked with regrets having given it a try, Win Lose or Draw.' You also can do a Google search for Ketogenic Diet. There are many links there for your use, and the Charlie Foundation is the website re the Diet that goes with the movie. You choose if you want Frames or No Frames when you get to the Charlie Foundation website. Lots of good info there too. I also want to tell Vickie what a great job you are doing at mentoring to others now. Your information is great and your compassion and desire to make a difference shines through. Wonderful job! Phoebe

 
Old 10-20-2004, 03:12 PM   #10
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beckybeck61 HB User
Re: Help, 11 month old in ICU with terrible seizures

You have all been so helpful through all of this! I can not thank you enough. Rayvn (my grand-baby) had surgery today to put in a permant central line and everything went well. When she came out of recovery she looked at me and gave me a big smile-she is my little hero!! I will check into that movie, it is one I difinately want to see. Thanks again and I will keep you posted as she transfer to St. Louis Children's hospital.

Becky

 
Old 10-20-2004, 07:32 PM   #11
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tkdmom96 HB User
Re: Help, 11 month old in ICU with terrible seizures

Thank you (K) Phoebe...I appreciate it very much...

Thank you for remembering the name of the movie and the foundation name. When I saw the movie for a second time, ALL the way through, I thought it was a well made movie and very informative.

BECKY, please keep us posted on Rayvn and hopefully she's feeling the power of prayer. So HAPPY to hear she smiled today and that the surgery went well!

All my best,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 10-20-2004, 08:24 PM   #12
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bboz27 HB User
Re: Help, 11 month old in ICU with terrible seizures

I am taking my 4 month old to th University of N Carolina - Dr. Robert Greenwood. He is very good! I heard Phila******a is the best. You might also try Arkansas Childrens Hospital in Little Rock. See Dr. Greg Sharpe. He is the cheif neurologist of pediatrics.

 
Old 10-21-2004, 10:26 AM   #13
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beckybeck61 HB User
Unhappy Re: Help, 11 month old in ICU with terrible seizures

Quote:
Originally Posted by bboz27
I am taking my 4 month old to th University of N Carolina - Dr. Robert Greenwood. He is very good! I heard Phila******a is the best. You might also try Arkansas Childrens Hospital in Little Rock. See Dr. Greg Sharpe. He is the cheif neurologist of pediatrics.

Thank you so much for the information-I will check it out. How is your baby doing and what kind of seizures is she having if you don't mind my asking? I will pray for you also, it is so hard to watch them have them and not be able to help them. Take Care

Becky

 
Old 10-21-2004, 02:28 PM   #14
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LisaGuthrie HB User
Re: Help, 11 month old in ICU with terrible seizures

Hi Becky, (((HUGS)))

Give Rayvn great big (((HUGS))) for me...

My name is Lisa, I have 2 E kids, and my youngest is a Keto Kid. My little man Jake started seizing at 10 mths. He is very delayed in all areas of development and as we near his 3rd birthday still have no real answers to WHY! In addition to the seizures, complex partcial - stares, followed with a head turn and frantic stimming... we think that we will soon have an Autism dx as well, as he shows many signs!

We have had Jake on the Keto Diet since May 4. Although it has not helped him with the stares and we are in the process of wiening him from it, I am a HUGE supporter.

You need to get the following books:

The Ketogenic Diet: A Treatment for Epilepsy, 3rd Edition
by John Mark Freeman, Jennifer B. Freeman, Millicent T. Kelly, Jim Abrahams, John, M. Freeman M.D., Jennifer, B., Freeman

Seizures and Epilepsy in Childhood: A Guide
by John M. Freeman, Eileen P. G. Vining, Diana J. Pillas

[url]http://www.***********[/url] - ? OK, go to Amazon . com and do a search!

They have a package deal for both books. You should get both!

The Ketogenic Diet: A Treatment for Epilepsy will be your users guide. Your family should read it before going to the hospital. It answers many, many questions and is a wonderful source of information!

Dr J. Freeman is at the E. Center at Johns Hopkins and has been a God send for keeping the diet alive and getting information out to parents and drs alike.

Some things to know going in:

The fasting is not as hard as you may think. We lowered Jake's carbs starting a week ahead. Took away pasta, breads, Cheeros - but left the fruit. We also had him sugar free before hand. This will allow her to drop into ketosis faster, lowering the fasting time.

She may show flu like symptoms as she goes into ketosis. Remember you are completly altering how her body is processing, not just neuologicly, but from a ! Jake threw up his first 2 keto shakes.

Rather then give him lots of butter, we use Flax seed and Hemp seed oil. We started using then a little over a year ago and I feel that the control we gained on his grand mals came from adding these oils. They contain large amounts of O3 and the Hemp also has O6 and O9s. Jake has only had one grand mal since Sept. 03 and it was during a week that I had ran out of oil. The oils have also really helped his skin... He gets "chicken skin" lots of little tiny bumps on his back and belly, they have pretty much cleared up as long as we keep the oil going in. We plan to keep the oil even after he's off the diet.

You should receive an Excel spreadsheet from Stanford U. This allows you to callulate her meals and takes the "pain" out of it for Mommy and Daddy. If at all possible they should work with a computer in the kitchen. Ours sits right next to the area we weigh his food at and we give him what we are having for meals with only minor adjustments. This has made life so much easier for us. We also keep several meals printed out in case the power goes out.

SIDE NOTE: I live in the great Hurricane state of FL. We kept Jake in the keto state for 72 hours without power - cooking of our gas grill in the middle of a huge storm! SO, anything can be done!

Life does not have to make a drastic change for your gd and family. We took Jake to a Jazz Feast in the park this past weekend. We made his meal up ahead and put it in a little plastic cooler pack and we were good to go!

Feel free to ask questions! I've not been nearly as active on this board as I said we are still looking for Jake's answers and my journey has taken me elsewhere. But, the folks here are so great that I can't leave for good. They gave my baby a voice when he was only 10 mths. old. For that I will be forever greatful!

You and yours will be in my prayers,

Love and light,

Lisa and kids

Last edited by LisaGuthrie; 10-21-2004 at 02:32 PM.

 
Old 10-21-2004, 04:44 PM   #15
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bboz27 HB User
Re: Help, 11 month old in ICU with terrible seizures

My son has complex partial epilepsy. He loses concionous for 15 secs and his eyes roll back into his head. I will keep your family in my prayers too. Some childrens hospitals have free clinical trials. Check into that. I know where your coming from.. finding a good dr is hard.

 
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