just a rant

[joan]

I had him at an allergist a few years ago, pre-knowing about the E and they said he was gluten intolerant. We went, what I know now, semi gluten free, which was hard on him, and after a year or so fell to the wayside. Also on a side note. When I met my husband he was like 40 lbs overweight. well built bottom and top but very round in the middle. We found out that he suffered from syndrome X which is the way carbs are broken down. Once he removed the bad carbs, he naturally lost 40 lbs quickly and has retained the same weight ever since. Just showed us that when the body works well, everything seems to just naturally be right. More proof of the important of food, diet to over allgood health.

You're right. Im just going to go gluten free while I wait for the powers to be to figure it out. I need to good kick once in awhile so please : ) feel free lol* My son starting to do better mentally so I try and not switch things too much for him. It seems it takes him a bit to warm up to an idea. But he usually comes around. If a Dr tells him something, he believes it more than his ole witch doctor hunting mom*

Good news .. hes decided he likes chopping wood and has been at it a few days. SO the wood pile full*

ENjoy your day and happy new year*
joan*

[Star_Mummy]

Hi,

I know you said your daughter was 16, but it sounds like Myoclonic-Astatic Epilepsy. My son who is 4.5 has it, so I know there is a large age difference but our stories sound identical. Its more a childhood onset epilepsy rather than a pubescent one.
He also has grand mals, absence and the myoclonics. 2 EEGs and his MRI came back normal as well. It wasn't until they noticed his hands twitching that they did an EEG while this was happening that they saw some abnormalities on the test. It was called Non-Convulsive Status. She probably hasnt got MAE aka Doose Syndrome but maybe there is one that connected to it that hits in puberty. Sean was on the same medication and it didn't work. So far the only thing that has reduced his is steroids. He has them daily by mouth and monthly via IV. That could be another thing to look into or even the Ketogenic Diet (very similiar to the atkins diet)
Your son sounds like he is probably having smaller Grand Mals during the night. Sean has more of those when he is tired, asleep or just after waking which makes it hard when he comes out of the post ictal state as he is tired then has another one and the cycle starts again. I find that when Sean is asleep they are shorter in duration and only last around 30secs to a minute.
I hope this helps and if you have any further questions please feel free to ask me. We are all hear to help.

[joan]

Thank you, I will look into it. If I had to guess Id think my son some form of genetic celiac and my daughter some form of genetic reflex epilepsy. I am probably on information overload. I think if I watched Oprah today, whatever illness she's discussing? today? I'd have it lol

I tend to be a perfectionist. Its one of those good things/bad things. I am probably also part control freak : ) I get things done now and not later and I need to understand everything. Sooo I guess we know where my kids get some of their issues lol

I'm going thru the pantry today. This house is done with whatever lil refined sugars I can find and glutens are history. I'm educating myself on the "hidden" names for glutens and such. I'm going to take a few days to "talk" my kids thru the "new" eating habits and I hope to be "new eating" by next week. Glutens would be real easy to give up IF it wasn't for the breads....

Thank you all. Your company and thoughts mean so much to me.

joan*

[joan]

We have a busy week this week with Drs so I figure Id sneak the kids out early Saturday, wrestle up my brothers and their kids and head to the hills for some skiing. Sounds like a good idea Well everything was great till the end of the day when Phillip says Mom? One more run K? ... Sure son.. well..fast forward to the ER. Fractured wrist and broken thumb OIY and ouch!!!! They said I have to take him to a specialist as something weird with broken thumbs and circulation to the hand and blah blah blah more bad news. I'm sure he will be fine but here I thought Id get in some R&R and I've only added to an already busy week..... I think I'm going to teach them both how to crochet and MAYBE knit* lol

Good news is were seeing an epileptologist on Tuesday. Hes involved with the genetic study so Im hopeful. Phillip also has the evaluation for sensroy processing disorder and I hope to have his 504 plan this week. Im still trying to get into see a gastro guy and now : ) the orthro guy.

I was soooo looking forward to everyone being back to school and work tomorrow.

joan*

[RobinN]

Some weeks are like that.
I too thought we would have a wonderful holiday, filled with gatherings, and fun outings.
Far from it, with a child who has mono. Forgot what fatigue looks like.

We can compare appts. Ours is at 10:15. What time is yours?

15 min at a time, is my mantra

[joan]

I think I've crossed the line into insanity lol.. Where these last few weeks would normally make me crazy, I'm getting much more accepting and I may laugh a bit TOO much these days. And I'm ok. 15 mins at a time GREAT mantra. I guess IM asking for too much when I try one day at a time. Used to seem like the right thing. I've gotten to the point when my choice is to laugh or cry? Laughing just working better these days. Actually, all in all, we are ok. The kids seem to be settling in. Phillip seems to be feeling better, little by little. Jennifer? welllll she's a teen girl so we don't get our hopes too high with her lol She's ok as well. We have been laughing as a family again. We've even found some time to have fun. Unless you've been thru this you cant imagine what its like. If my mom tells me one more time praying more will help? I swear I may hurt her. We kinda had it out the other day and it makes me feel bad. I just asked her to not mention my kids health as I couldn't take her negativity. I reminded her that her 3 kids had no issues. (well none seen to the naked eye lol) and that until she walked in my shoes Id appreciate it if she SHUT UP : ) I don't care how old you are, Id think its rough fighting with parents and my Mom? Freaking feisty!!!! In my heart I know she means well but this is NOT the time to show her ignorance. She brings more worries to my table than reality and I'm not up for it these days.

Jennifer changes to her slower math class. Its still an honors class but she's not a happy camper about it. She is the type of kid that pushes herself to do well. Its almost like a personal challenge to her and she feels she's lost in this case. I keep going back to her NOT wanting to be a mathematician and all so math not a big deal. But I know we are both worried, and probably not mentioning, what about her other advance classes? What about studying for the bar? Will this progress and will a day come where pushing her brain will just set her off. I tell her pfftt... puleaseeee IF you were any smarter, I couldn't understand you. YOU are fine but I'm worried for her too : ) shhhh

joan*

Today
8 am call orthro and gastro for appts
11 - 2 PJ OT evaluation
2 - 3 Register PJ for winter class
3 - 4 drive North to pick up medical records for tomorrows 6am trip North....
5 -6 Drop off PJs car for breaks and tune up

Calgone take me away!!!! lol thanks*

Funny story about Mono. My brother gets mono at about 17. I tell my mom its the kissing disease and that JOhnnys been kissing : ) She tells me NO WAY NOT HER SON and that he must have gotten mono from dirty milk containers at school LOL About 5 years ago I make my brother tell her how he got mono and he tells her from kissing the neighbors daughter. I still dont think my mom believed him. IF it was me? Shed swear it was from kissing lol * I hope your daughter feeling better.

[joan]

sooo good news/bad news. I guess that a normal day. I've had a few rough days but I think its getting better. Friday we get Phillips broken hand fixed*

We finally get to an epileptologist/neurologist who is working on the genetic E research. To me, this is the perfect person for us. We go with all our reports and such. We liked him and I guess we're staying with him for now. He's less worried about Jennifer at this time and very worried about my son. This whole lack of cognitive memory going to play a huge part in his quality of life, and his independence. Seems like he had more memory before E than after. Its just a very scary time for me right now and every time I try and swallow reality to accept it, something new pops up and it just seems to get worse. It almost seems like this sick, cruel, joke. You have healthy kids for 15 years then a freaking time bomb goes off. They say it NEVER happens twice. Your daughter safe* Now here I am listening to my 16 yo daughter ask the Dr about birth defects to her children from her meds? CHRIST!! why does any kid have to worry about that? We're trading a week in fla for a week in the hospital, video eeg. No one really happy with that switch lol but its the best thing to do and I'm grateful its in the same state and were not flying to some other state. My kids are declared both genetic E, cant say more than that. My Mom, one of 15, my 89 Grandma alive, driving and feisty, all 15 kids had 3 - 5 kids, they all have 1 - 5 kids. NOT one person that any of us can remember has ever had E so I think it safe to say its not from my side. My xhusband still finds enjoyment in frustrating me so he's little help, if not he hurts the process. I've spoken to his Dad and his cousin who has E to see if I could get anymore info to help. Nope. His cousin has E from a car accident as a child, so that cant be heredity. The cousin did mention one of his Grandmas family may have had some E but I'm not even sure it the Grandma they share. SO my research in that area done. My son effected bi frontal and my daughter? shrugs? Check that thought process area* Good news is the Dr doesn't think she has reflex E and I'm glad about that but he said he will cover it all and that we will figure out as much as we can and do the best for them. He also believes diet plays a huge role. He says we will have to wait and see if this is progressive. He has also issued new emergency orders for my son. We use an anal depository for when his grand mals go over 5 mins. The new Dr wants it used as soon as he starts as we already know he will go 5 - 12 mins. does kinda make sense* I have suddenly become so aware of my mortality, its petrifying me.

Do you guys talk to others about it? I speak to my husband, from soups to nuts but other than that I don't discuss it with anyone outside the medical community. I just cant. I know I'm not the happy and perky person I had been for the last 48 yrs. The last year has changed me and I really just want the dust to settle so we can all get used to things and move on. Where ever that leads*

Good news, the kids will be admitted into the genetic study to isolate the gene to help wipe out genetic E in their lifetime.

I hope everyone well and hanging in there. I hope your days are better.

joan*

[skillefer]

Hi Joan! sorry to hear you've had such mixed news. As a special ed. teacher, I'd suggest that you look into a conservatorship and trusts for your kids. A conservatorship would basically give you rights over your kids medical and financial decisions. You could override them if you thought it necessary. As for the trust, it would make sure that should anything happen to you and your husband, that your kids would have a place to live and people to take care of them if necessary.

[joan]

Thats the thing hes in his second year of College and on track to finish in the reg 4 years. I guess pushing helps?? Hes a really smart kid. Hes a talented artist and writer. Just the cognitive memory an issue and confusing. Were having him retested and we shall see. Ive just receievd the written report and want a few folks to evaluate them for me and come up with a 504 plan for him. It also says with therapy, it can improve. So therapy.. here he comes. I want him on his own, independent, and Im going to do all I can to keep it that way. Weve switched Drs and hope to define this all.

On the up side : ) Phillip has a lovely blue cast that he painted flames on. They cast his left hand today and said they will recheck the hand in 3 weeks. IF the bones are healing well, the cast goes back on for another 3 - 5 weeks. If not? surgery... ::shivers:: I think he will do well as hes basically lol a really healthy kid.

We're expecting snow tomorrow. Not much Im sure but Im looking forward to it. It will be nice to lie around with everyone home and have some fun together. Maybe get the dogs out in it.

Enjoy your night all
joan*

[joan]

Im anticipating whats to come and I am starting to panic.. and I know better than to do that.

We know my sons cognitive memory really bad. Its normal, whatever your intelligence is, your cognitive memory, usually very close. My sons a huge difference. It may not impact him now at 19, BUT the future is scary. Were trying to figure out if its just him, the E, the meds or what the heck.... My x and I had a bad divorce. Almost 17 years later his hatred of me has only grown. Its just weird, I really stay out of his life. I am the queen of hell in his mind. well, he always tells me he cant remember anything and I always think its just his way of selectively remembering what he wants. But he said something to my son this week and I really think my X has huge cognitive memory issues. If that is true then my sons problem is probably from birth like the E. It made me stop dead in my tracks. If my x is a College graduate, with no memory.. Im so freaking worried for my son. My x is incapable of enjoying any depth to any relationship, hes basically an emotional cripple. Sure he knows how to make money but I want so much more for my son* I wish my X would get tested to see IF he could lend any info to the mess I have with the kids. Unlikely as I had to beg for 2 teaspoons of blood for the genetic testing. My x asked my son if he is retarded? My son said Dad, IF I was retarded, would I know? Why wouldnt he ask me IF he had any questions? He keeps this up the kids will refuse to see him again ughhhhh

Also, if my thinking is correct, changing Phillips meds wont positively effect his memory. And to top it off, hes now having vivid violent dreams at night CHRIST!!!!!! On the upside, the kids are tolerating the food changes. We havent gone totally gluten free yet but we are well on our way. Little by little.

I hope everyone elses day going well *
joan*

[stilldancing_98]

Joan, I know exactly how you feel. I had the same day today with my ex and my son. Then my son kicked him. He tried to get violent back. Joan you are amazing. What can I do to make you feel better?

[joan]

Thank you* Just being here helps. I kinda use this area to "flip" out on. Keeps the body count down at the NJ Shore lol

I just cant shake that I bet my x has neurologist issues as well. He may not be epileptic but he has issues. Not even being mean, he swears he cant rememeber stuff and Im starting to believe him. Its like he has flat emotions. HE really has so much and hes never happy. If hed work with me, rather than against me for the sake on being against me, not only would it be better for our kids, I bet hed get help along the way as well... Makes too much sense thats my problem lol

This too shall blow over and in time everything will be the way it will be. Not much I can do about it. Trust me Im exhausted from trying. My kids 16 & 19 now... Ive taught them right, raised them to love and forgive and its upto him now.

Im sorry your Sunday didnt go well. Some days just sooo much better than others. Lets just make a pack to forget the bad days? Heck, if memory an issue we should be allowed to pick and choose what we forget ; )

I am SOOOO glad your meds are working so well for you. I hope this a really good week for you all *

joan*

[joan]

My daughter wakes up Jan 23rd with the dreaded lamictal rash. She is admitted into the hospital and weaned off to Keppra. She is home the 27th. While in the hospital we did a video EEg and caught a spike a night for only 2 nights. She seems ok. She is going to be home instructed for a few weeks, till she adjusts to the meds and so she can catch up and return better after a very rough 5 months. We took her out of her Honors classes and put her into college prep as her myoclonics were going crazy from the concentration math and biology. The keppra really seems to be handling her myoclonics and Im very glad for that. If all goes well, she will go back to her Honor classes next semster. She is totally off lamictal and she still has a slight rash. It is getting better. She is on 1000 keppra and the Dr will seek to lower it in a few weeks, maybe.
My son went into the hospital Feb 4th for a video EEg and to see how his meds are working. On 150 mg lamictal 2x a day, He shows tons of spikes at night, when hes tired and upon waking. We know him waking is our danger zone. They gave him 3 options. To lower the lamictal a little and add deprokote?, to wean off lamictal and go on deprokote or add alittle more to the lamictal. So far we have just added 25 mg of lamictal. My son loses his license Feb 14th and we get to request it back March 4th. If not, Sept 5th it will be returned, baring no more seizures. We are moving to 100% gluton free. We are no where near 100% yet but Im planning on this being a lifestyle change and am willing to go slow and steady as to not rock the boat with the kids.
Well other than that : ) lifes grand lol Im sure giving these new Drs a run for their money. The kids have also given the blood needed for that genetic study and heres hoping to figure that lil gene out and either fix it with stem cell or just nuke it. : ) Too simple I know but... Im a hopful soul*
I hope everyone well, healthy and enjoying this warmer day.

joan*

[joan]

so we have all this fancy, private health insurance, For years I'm told ITS THE BEST POLICY, you guys are so lucky. Naturally, we never used it so who knows?? well, now the last year I'm using my insurance like crazy. Tests up the gazoo. Everything seems to be going well and with my insurance I don't need referrals. Fast forward this month and I am getting bills telling me my insurance had decided these tests were not necessary. WTF? When did Insurance companies become PhDs? Now they tell me I don't need referrals NOW I Need letters of medical necessity lol I'm laughing cause I'm thisclose to crying. Naturally, I will fight/fix this but... really.. my tolerance, patience and energy.... are non existent at this point.

Hope all goes well for everyone
joan*

[KellyD]

Joan I really feel for you guys with your insurance policy's over there. It must be so frustrating. I hope you can work it all out with them. Fingers crossed for you!

[tinasmom]

I can understand your frustration with the insurance. I fought my insurance to get them to let Nicole see one of the best doctors here in Wisconsin and was denied. Insurance companies do not like to pay for testing as these tests are so expensive. Unfortunately, our medical care is being run by insurance companies. I'm sure that if one of their children had seizures, they would want every test possible run and it would probably not be questioned because they are employed by the insurance company. My employer actually tried to talk me into switching to the HMO only plan. I told them that even though they were raising the premiums for the 3 tier insurance, I would pay the extra because Nicole's life is more important to me than the money. I told them that I went to their pediatric neurologists and found that they would not listen to me. I then found a wonderful doctor outside of their system and they only cover 50%.

[joan]

As bad as I feel for us, its nothing for what I feel for others. How do they expect folks to get better or to stay well IF they cant get help? I dont know what folks do in America without decent insurance. My heart breaks for anyone without insurance.

joan*

[stilldancing_98]

I still am fighting for biofeedback on Alex. His counselour is going to help me with his diet. Insurance wont do a thing.State

[RobinN]

Our HMO has paid for the required tests. Anything else I have to decide if it is truly necessary. Thank goodness the big ones have been covered.

My idea for the U.S. (I think it is a Japanese plan) is to pay the doctors to keep us well. When we get sick that is when we stop payment.

[joan]

OK,, wheww.. I think were done for a few months. God willling...

My sons lamictal upped 50 mg (375 mg a day) and told as far as they are concerned he can drive. We apply for his license 3/15. Hes also told him depression very often goes hand and hand with E, add the meds and hes fighting a losing battle. My son will go see the psychiatrist his Dr recommended, be evaluated and they will think what do do after that. My kids can go back to non maniac gluten alert as they are not celiacs. They are both definitely juvenile myoclonic epilepsy. Phillip more severe with the grand mals and Jennifer, the normal sibling run off, lesser with the mlyoclonics. It seems, it is what it is and we are just best to keep doing what we've been doing and hope to stay seizure free and moving forward.

They lowered my daughters keppra to 750. I am VERY happy about that and PRAY it does the job so I can maybe lower it again in a few months. I'm hoping the lower dosage eases up on her side effects. Shes supposed to go back to school 3/9 and so far I'm leaving it that way. I'll know better mid next week hows she is doing.

The kids and I have also started talking about going med free. Maybe not this year but maybe in the future. If they are only going to have 1 - 3 seizures every 18 mos, the meds very well may not be worth it. They realize driving would be out of the question.

I also contacted 5 Neurofeedback people. 3 got back to me. 2 said they couldn't help and a third asked I call to speak about it. I will call next week for sure. All the folks I contacted have been doing this since the 80s and the 2 thought, with the kids being so infrequent, it wouldn't be worth it??...

Its been some heck of a few months and I hope the dust settling and we can all go back to some sort of semi normal life. It would be so nice to be boring and regular again lol

I hope everyone well *
joan*