Development issues/other questions :)

[Camille's_Mom]

Hello all. I'm brand new. I was referred by someone on another site. I have several questions and concerns...please stick with me as my thoughts are sometimes sporadic. My little lady, Camille, was born with epilepsy. She was actually diagnosed at 2 days old, but I noticed facial twitching before the nurses showed concerns about seizures. I chalked it up to her being a new baby and didn't think she was having seizures. Anyway, she was taken by helicopter to the nearest children's hospital where she spent 9 days in the NICU. Over the next few months, she was in and out of the hospital...sometimes spending as little as 2 days, others spending as many as 5 or 6 days. We were living with my parents in Missouri when she was born because my husband quit his job in Iowa...partly because of my pre-eclampsia and after we moved, my gestational diabetes. That aside, she hasn't been to see a neurologist in a while. We now live in Indiana. We've been here since May. She's been to one neurologist since...well, I can't really remember. February or March I believe. The doctor we saw up here was fired by my husband. We were very dissatisfied. She goes to see a new doctor on January 9. My main concern is Cam's (my daughter ) development. Her original doctor said her Phenobarbital would impair her developmentally. I never thought it would do the things it's done. I'm terrified it's not going to get any better. I guess I should say what her medications are: Phenobarb 5mL/twice daily--Keppra 2mL/twice daily--Trileptal .75mL/twice daily. Since we haven't *really* been to see a doctor in such a long time, her medications have stayed the same as far as dosages for several months. Reading the horror stories from medications and sudden unknown death, I really want to change her medications as much as possible. I've looked into medical marijuana in hemp oil form. I couldn't find much information on that. I know it's not legal in Indiana, but we are quite literally on the Michigan border and it's legal there. If we have to move a few blocks in order to get her medication that has lesser side-effects, then we'll do it. I really **very badly** want her off the Phenobarb. Does anyone know of any meds that she can be on that won't hurt her as far as development goes? And that doesn't have horrible side-effects?? I don't know much about Ketogenic (spelling?) dieting, but I'm willing to give it a try. We have problems when it comes to seeing her doctor, though. My husband works for the railroad and we only have one vehicle, so I'm vehicle-less when he goes to work. And he's usually gone for at least 36 hours at a time. Our new doctor is in Indianapolis. If we were to try the ketogenic diet, would we have to check in very often? Again, I don't know very much about this kind of thing. Honestly, and this is going to sound bad, but I'm not even sure what type of epilepsy she has. The doctors go so fast when they explain things that it's hard to retain a lot of it. :/ Back to her development...she turned 14 months old on December 28 and she can't even hold her own bottle. She's very slowly learning to use her hands, and she's starting to master rolling over. We have a physical therapist that has seen her twice so far, but she's going to start coming twice a month to our apartment. Is there anything at all anybody can suggest??? I don't want her to get too far behind, and I really don't want anything with bad side-effects. I can't lose my little princess, and I will fight to the death before I see that happen. Please help. :'(

Thanks for reading this novel,
~Heather

 

[epileric]

As far as I know John Hopkins is the only place that offers the Ketogenic Diet. That may have changed though.

Wikipedia does have some good info on it as well.

I would highly recommend you not use hemp oil to help control seizures. I know when I was younger what my peers referred to as "oil" was made with rubbing alcohol and was smoked. Ingesting it orally would not have been a good idea (these days I don't think smoking it was either). The problem with hemp is that the side-effects are very similar to those of the regular anti-epileptic drugs- fatigue, slowed cognitive function, confusion etc.

 

[Camille's_Mom]

Thanks for all the info. I'm stumbling around when it comes to this. Lately I've been doing research to try and figure things out. I usually just left it to the doctors because I figured they knew what they were doing. Seeing how many people have passed away from seizures, I'm in a frantic search to find something to stop this. I know there isn't a cure, but I want to do all I can to make things better for her. The hemp oil is basically boiled down marijuana plants. They use the whole plant, I believe. One of the main reasons I was looking into this is because my dad watched a show with a little boy who had uncontrollable seizures. The dad lived in a state where medical marijuana is legal and obtained some marijuana oil. From the first dose, this boy never had another seizure again (up to that day anyway). This was a boy who suffered 8-10 seizures daily. I'm willing to try the oil. She's already out of it most of the time, so I don't see much harm in this. :/ And I saw on a website where they used a marijuana plant that didn't make you high. It only contained what was needed as the "medical" part. I'm not sure how they do that...I'm not a drug expert. lol. I just worry about her, and if I have to give something drastic a try then I will do it. I want her to live a long, full life.

 

[epileric]

When you think about all the bad experiences you've seen or read about think of them in terms of percentages. The percentages are generally pretty low and a friend pointed out to me that people are more likely to want to share their experiences if it's been hard or troublesome. When things are all normal or going well we don't really feel a need to share or vent the same way.

I was also born with epilepsy & have learned in my experience that the goal of any medication is to make me a more functional person. Seizures do space me out but any medication that would make me just as or more out of it is not doing its purpose. Also when deciding such things I tend to pay more attention to scientific studies than anecdotes. There have also been studies that show that marijuana can stop/slow mental growth and reaction time. It's been seen in people that used it for long periods of time who were diagnosed as being at the emotional or mental level that they started.

RESULTS:
Similar to prior studies, current cannabis users exhibited marked impairments in both the acquisition and timing of CRs compared to controls. Although former cannabis users showed intact CR acquisition compared to controls, they exhibited significantly impaired (shorter) CR latencies. In both cannabis groups, UR amplitude did not differ from controls, indicating normal US processing.
CONCLUSIONS:
These data suggest that a recovery of function has occurred for the learning of the CS-US association, while the accurate timing of the CR shows lasting impairments. Taken together, these results suggest that heavy cannabis use can disrupt timing-related synaptic plasticity within the cerebellum, even after the cessation of cannabis use.

http://www.ncbi.nlm.nih.gov/pubmed/22134474

You also may want to check out this thread http://www.coping-with-epilepsy.com/forums/f22/marijuana-722/

I realize you would rather avoid pharmaceuticals but there are a couple of pharmaceuticals made from or function like hemp. One of them is called Marinol that you may want to research a bit.

Also, here are a list of other medications that are made from or work the same way as marijuana (all classified). You may want to research those as well.

 

[Camille's_Mom]

You are seriously full of info! Thanks so much! I guess I only saw the positives when it came to the marijuana. I'd like to get her on something that allows her to function. I'd be thrilled if I could just get her to sit up on her own! All of these milestones most parents take for granted are HUGE when you're waiting 3x the amount of time to see them in your own child. There's so much I want for her out of life, like most parents want for their kids. I'd like to be able to sit down and play with her and have her actually give a flying hoot that I'm there. :/ But that's all a side note. I will look into what you suggested. I can't tell you how much I appreciate the help!

 

[epileric]

You're very welcome....... Just wait a day & see what everyone else has to say.

 

[Dutch mom]

As far as I know John Hopkins is the only place that offers the Ketogenic Diet. That may have changed though.

Oh no Eric, that was in the eighties. By then John Hopkins was the only keto clinic. Since Charlie Abraham's succes story managed to get the keto diet back on the chart as an effective treatment for childhood epilepsy, many US hospitals do the diet.

Camille's mom, you can find all US hospitals that do keto on this map http://www.charliefoundation.org/hospitals/k2dynamap

In your shoes I would start the diet as soon as possible. It's so much easier to do when your child still is young and drinks bottles Ketocal formula. You could easily calculate cream and fruit snacks in the diet.

Probably she would be admitted together with a parent for 1-2 weeks to get her into ketosis, to monitor her blood and urine to prevent acidosis and to teach you (a parent) how to calculate her meals.
In the first period, she should be checked on after 2 weeks, 1 month, two an three months. You should have close telephone and e-mail contact with her dietitian. Later on she would need weight, growth, blood and urine checks every half year.

Usually AEDs get weaned off when a kid is stable on the diet for 6 months. It's not wise to do that when the diet is initiated.

Another usefull website with a very active and helpfull forum is www.matthewsfriends.org (UK)

 

[Andrew]

B vitamins

Ask your doctor about vitamin B6.

Here is my story regarding B vitamins:

I had my first seizure at two weeks old. I spent the first six months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. At this time I was having many ‘different types’ of seizures a day some of which went status. Countless tests were being done including, EEGs, lumber punctures… etc. A top paediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine Hydrochloride (vitamin B6). Pyridoxine Hydrochloride was administered (I was five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. Because of the positive effects that Pyridoxine had on my seizures doctors slowly weaned me off all the antiepileptic drugs (this was back in 1970-71). I’ve been prescribed Pyridoxine Hydrochloride, which I have used on a daily bases ever since.

I was still experiencing my (mainly photosensitive) aura when taking vitamin B6 only, so when I was 19 years old, with my doctor's consent, I introduced a multi B complex tablet to my daily medication. This stopped my aura.

My multi B complex tablets have been analysed at the hospital and are safe for me to take.

In just over 41 years of having seizures I have only used B vitamins to control my extremely rare, Atypical form of Pyridoxine (vitamin B6) Dependent Epilepsy (PDE).

In my lifetime I have had two unsuccessful trials of AEDs.

Here is some information regarding Vitamin B6 Dependent Seizures:

http://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

http://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

http://faculty.washington.edu/sgospe/pyridoxine/index.html

http://memo.cgu.edu.tw/cgmj/3301/330101.pdf

http://www.indianpediatrics.net/july2003/july-633-638.htm

I also have dyslexia (diagnosed 2005) and Asperger's Syndrome (diagnosed in 2011).

http://www.autism.org.uk/asperger

http://www.autism.org.uk/living-with-autism/approaches-therapies-and-interventions/diet-and-supplements/diet-and-vitamins-therapeutic-approaches.aspx (page 2)

http://www.autism.com/pro_b6_studies.asp

Also see:

http://www.epilepsy.org.uk/news/autistic-children-more-likely-have-epilepsy

http://www.autism.org.uk/about-autism/related-conditions/epilepsy.aspx (page 2)

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

A high dose of vitamin B6 may cause Peripheral Neuropathy

Also certain vitamins may interfere with some AEDs:

http://www.epilepsy.org.uk/about/positionstatements/folicacid.html (Folic Acid = vitamin B9)

Best wishes for the new year.

 

[epileric]

Oh no Eric, that was in the eighties. By then John Hopkins was the only keto clinic. Since Charlie Abraham's succes story managed to get the keto diet back on the chart as an effective treatment for childhood epilepsy, many US hospitals do the diet.

Thanks Dutch mom. I knew we'd get the info we needed on keto once you showed up.

 

[Camille's_Mom]

Oh wow! Thanks everyone! So much info...I love it. I'll read and research everything you all have brought up. I'm really hoping and praying for a miracle here! One more question, if you don't mind. Is it normal for a baby/young child to be this far behind in their development from anti-epileptic medications?? I've heard both sides...some say it's normal and others act very worried. :/ There's so much information to learn with epilepsy. When the nurses first noticed her seizures, they had the pediatrician stop by. He talked to me and calmed me down a bit (I was hysterical). He said it wasn't a big deal and it wasn't uncommon. Before my daughter, I never knew about epilepsy. Come to find out, my aunt has it but hers was caused by an accident. Anyway, I'm just worried I guess. When I worry, I ramble. :/ Again...thanks for all the links and information!!!

 

[donnajane]

Heather HUGS!!!!!! I read your story and really felt for you. My little man is going through the process of them trying to work out what is going on with his different seizures and the "way" he is. I have been given a script for meds by his Nureologist but have been told to not fill it out yet until the Nureologist either rings me or emails me and says its time. He is trying to delay using meds so long as he feels it is safe to do so. We also have had a few trips to ED where he has been admitted for like you a day or so or more. Our bubs seizures started with small arm shakes from around 6 1/2 -7months and then progressed from their into several different forms of seizures. We now have a new Nureologist who has helped us realise his seizures actually started when he was very young and our GP and even his Paed kept telling us they were just reflux attacks......... Like you I am very nervous with my sons development. He seemed to almost be on a standstill for several months and only a week ago started pulling himself along the floor, he doesn't use one leg its just stiff while he does it? He's 11 1/2 months old now. He can roll and sit although he can fall when sitting but mainly when he has a seizure. Some are very small and just like a very intense spasm but enough to make him lose his balance. I am happy now he pulls himself along as he has less distance to "fall" when he has a "vacant epsiode" and now just rolls to the side. Our Pead says things don't add up with him and even his nureo says he's NQR (not quite right) but as of yet the only things we know he has are GORD and "Shudder Syndrome" we have also been told he is having Tonic Seizures and several forms of partial seziures. Wow just reread what I wrote my son sounds bad but in reality he's an 11 1/2 month old with "Special Quirks" they are not who he is. We are off for EEG No 4 on the 5th Jan and it may sound terrible but I hope he has a seziure while he is having the EEG as although we have video footage of his episodes which several Nureo's have said are "epileptic events" so far his EEG's have come back basically normal. Nureo is still considering an MRI and we are hoping he does order one soon as just to have that out of the way would give us one less thing to worry about. We also looked at diets to help our son but he has multiple food intolerances so unfortunately is on a reduced diet at the moment but things are looking up with this as he is starting to be able to tolerate a wider variety of food. We are just hoping his seizures improve as well.
Give your little girl a big hug and take hope and joy in every new little thing she does as we do with our little man.
Take Care
Donnajane

 

[Nakamova]

Is it normal for a baby/young child to be this far behind in their development from anti-epileptic medications??

Unfortunately, there haven't been a lot of detailed studies of this issue. Generally speaking, the AEDs are powerful and can have physical and cognitive effects on people of all ages. In infants, it's particularly important to monitor and adjust the dosing, and keep an eye out for side effects.

Of course, even perfectly healthy children exhibit different rates of development. Best course is to see the pediatrician regularly, and try to bring a pediatric neurologist on board as well.

 

[Camille's_Mom]

I'm glad your little one is tolerating more foods! Maybe that will help him when it comes to the dieting. We've been battling this for over 14 months now and I want some answers! I know we haven't kept up with her neurology needs as much as we should have, but she doesn't have seizures too often anymore. I just want her caught back up to the other kids. My main worry is her getting made fun of in school. I know how mean kids can be when someone is different or has special learning needs. I would like to homeschool her, but I also want her acclimated to the outside world. There is just so much information to take in. She's already had 2 MRI's...one when she was 2 days old and another when she was 6 or 7 days old. Those came back normal. She's had 5 or 6 EEGs. I lost track of those. They seemed to do one every other day. I know she's had at least 5 though. We were scheduled to get an EEG and MRI up here about a month and a half ago, but we didn't since we fired that neurologist. They wanted blood levels drawn. We had to drive about 30 minutes to get to the hospital where they wanted it done. Well, she screamed so hard she busted blood vessels on her throat, the side of her neck, and down her chest. And they couldn't even get the blood! So many things are worrying me. Her original neurologist couldn't find the cause of her seizures. He said he's only had 4 or 5 patients in his 20 plus years that he couldn't find the cause. He said those few had major developmental and learning disabilities. That's the part that terrifies me the most. Our little girl is the sweetest thing anybody will ever meet, but she's so far behind with everything. She doesn't let it get her down though...she always has a smile on her face.

 

[donnajane]

Hang in there an always think of those smiles I bet they melt your heart. I am a teacher and as of yet are not worried about if Harrisons issues continue him being teased as I am more in the here and now. Just spoke to an Osteo today re our sons development and he is going to see him on Monday and see if he can help with his mobility. My little mans not that behind yet in some areas in other ? but we are noticing the older he gets the bigger the gap in development can seem. At 5 1/2 months he was ahead and his paed thought he would crawl and walk earlier but then it was like he hit the "pause" button. Hubby and I watched some video of him taken in Aug and reality was he hasn't developed that much more until he started pulling himself along the floor on Dec 24th. That was the best christmas present he could have given us as his Paed and Nureo were starting to get concerened. Like your daughter my sons smiles melt everyone's heart and we are constantly told he doesn't look unwell which is nice.
Keep us updated as I know I find it comforting reading others posts and being able to "chat" to others going through the "discovery" phase (While Nureo's/Paeds etc try to work out whats going on.)
Take Care.
Donnajane.