I posted on BT2 a few times, and some of you may remember my daughter Helen. Lizard referred me over to this site, as we have been having some difficulties with her and are looking for some help.....or just a shoulder to cry on.

Helen is 5 and has hydrocephalus due to aqueductal stenosis. She had a medium flow VP shunt placed when she was 3 mos old. It has never been revised. She has a seizure disorder, complex partials that generalize, and require medical intervention to get them to stop. She is left monoplegic and wears AFO's. She just started kindergarten in a private program, but just a normal program. She seems very smart, and has begun reading.

She has never really been potty trained, and started having urinary incontinence this spring, she was diagnosed with kidney reflux and was put on ditropan and an antibiotic. She also is on miralax for constipation. She just had an MRI on friday of her brain (NS wanted to see CSF flow), and her lumbar/sacral region (uro wanted to check for tethered cord). I am waiting for the results, and it is killing me. Of course I can make my mind think of all kinds of terrible things that could be wrong, but I am trying very hard not to do that. I have the films, but fight myself everyday to not look at them. I can't read those things!

We have been having some behavoiral problems. She can be happy as a clam one minute and the next be throwing a temper tantrum. Any attempts to help alleviate the tantrum makes it worse. If you leave her alone, it escalates and she can't calm herself. We have been working on a sticker chart with special rewards if she uses her words rather than the tantrum. It works sometimes, and you can see her trying to hold it all together, but sometimes it seems so difficult for her.

She has been complaining of headahces, sometimes it is with a pitiful cry lay your head down kind of thing, other times it is "I have a headache", now I am going to go run and play with my sister and brother, and have fun. I can't tell if she is faking or not. I don't know if the behavior is related to the headaches or not; Or did I spoil her when she was little, and now I have a brat.

I am so lost I don't even know what questions I have to ask, I have a thousand, I have none. Guess just looking for some support from somebody who has been there. I never know what to expect when I wake up each day.

Sorry this is so long,thanks for listening. I hope to have some results today and maybe then I can figure out what my questions are.

Tammy, Mom to Helen 5, Jill 10, and Evan 13.

Hi and welcome back.

BTW, my mother's name is Helen.

She sounds like a complex little girl. A couple of things. Could the tantrums be seizure related?

I think you need to get the test results to determine if the headaches are for real. But, you already know that.

Keep with the stickers. It can't hurt. No matter what she needs consistency.

Can any of her meds cause erratic behavior?

Wow do we have a lot in common.

My daughter - Rebecca Helen - is 5 and in a normal classroom for Kindergarten. This is a rough age, and I question myself every day whether her behavior issues are an age thing, a hydro thing, a seizure thing, or something I myself caused.

She is hard to get along with at times. Goes from sweet to sour in a second. And sometimes her fits are REALLY hard to calm her from. She can even get a bit aggressive lately. Not like her. I am wondering if Kindergarten and dealing with more social expectaions/demand there is overwhelming her - but then again - much of it was there before school started too.

Becca also has hydro - probably caused by aqueductal stenosis - or possibly a small stroke - the just will forever be out. She's had two ETVs and three shunts - two CSF infections post-op. Started having seizures at age 2 - complex partials mostly that sometimes turn into status simple partials. She is right side hemiplegic - so behind in motor skills - but actually way ahead in cognitive - reading at third grade level too.

We luckily did not have any issues with potty training though. That is all pretty foreign to me, though I have a friend with the kidney reflux you speak of on antibiotics too.

What meds does Helen take? Becca is currently on keppra and titrating up on lamictal. She was only on keppra and that is a drug known to cause behavior problems. . .so we are eager to see when she gets weaned off if it makes a difference. This will not happen until around Christmas though.

Just keep in mind that it COULD be med-related. Or it might just be part of it.

Becca also - though it is only every now and then - nothing consistant - complains of a headache. Usually in the morning. I document it all, freak out a bit, then watch close for other symptoms. Sometimes I know she has used this to stall or get her way (like getting us to lay with her longer at bedtime, etc.). She either says she hasa headache or a stomachache - but I just know it is not genuine. It's a hard age. The other ones I can really tell she is bothered. I take those seriously.

I wish I could help you, but I too am struggling with the behavior issues. We had an EEG last week and an MRI in 2 weeks becasue of increased seizures and headaches. I want to know about the EEG so bad.

Do keep us posted and share any new thoughts or strategies you come up with please.

Hugs,
Kathleen

(((Hugs))) I hope you get some answers today.

I have a friend whose daughter gets migraines and regular headaches. She's a third grader now, but she's been having them I *think* since she was a toddler (definitely before kindergarten). Friday, they had a walk-a-thon at school and she really wanted to participate. But, we had the worst time encouraging her to go walk. Her dad showed up, and she walked with him. Grandma showed up, and she walked with her. And, in between, she was a little whiny. At one point, she lay down in the grass with her head on Grandma's lap and her Mom and I agreed that she probably had a headache. She was just as you described. Whiny and floppy one minute, running around with her friends and family the next. I think those headaches must be milder than the "turn off the lights, be very quiet, and don't touch me headaches."

Anyway, I don't think you spoiled her and now you have a brat. I think something is going on and hopefully you can play detective well enough to figure it out. It took my friend awhile (until first grade) to figure out that BLUE food dye gives her daughter a headache. (And all those years of giving her purple tylenol and making the headache worse... The orange motrin never did that.) Unfortunately, it's not her daughter's only trigger. Heat bothers her (and that's hard to control). She recently took her daughter off of dairy, and found out that that bothers her. She's not far enough along to determine if the dairy affects her headaches. You need to go six weeks without dairy to get it all out of your system.

Yes, I think you should try removing dairy, but I'm weird that way. Especially if constipation is also a problem. I spent this summer finding out that dairy is a problem with all of my kids, although to a lesser degree than with Tom. Dairy caused Tom's seizures to generalize. He hasn't had a generalized seizure (myoclonics, in his case) since going dairy-free. I'm also realizing that the girls are a little "meaner" or more aggressive (and prone to uncontrollable / unconsolable tantrums) when they've had some gluten.

Some things to think about or consider.... start a food diary. Remember to record headaches and times of poor behavior as well. Ask if your doctor will run a food allergy panel. And, I really think you need the IgG ELISA testing, as opposed to IgE (or in addition to IgE) testing. If I have that right, the IgG testing is the delayed reaction to foods (such as seizures or migraines or hyperactivity or diarrhea or etc.). IgE is your "true" allergy (the typical peanut "I can't breathe, get me to a hospital!" allergy) (My friend did this testing herself through York Labs, if you're interested in reading a little about it: http://yorkallergyusa.com/dfa.html)

Anyway, I'm turning into a nut (or I'm already there). But I really feel food plays a bigger role in our lives than you might think. And the side effects of not eating a certain food are sooo much nicer than the side effects of a new medication. And just in case I've convinced you to give some of this a try, I should warn you that Tom had *withdrawal seizures* at the two week mark of going dairy-free. They were definitely less intense and much shorter than his normal seizures, but he had them nonetheless.

Hope this helps. Hope you find your answers. And some more (((hugs))), cause this is definitely not fun.

Thanks so much for responding! I realized I must have been in quite a state when I wrote that.....I posted on BT1 a few times, not BT2, and my daughter wears SMO's not AFO's. Sorry but I figure you got the drift.

Kathleen, i had tears in my eyes when I read your post. I don't feel so alone. Our daughters sound so similar. I hope your EEG and MRI go well. I still haven't heard from the Neurosurgeon. Helen's teacher told me yesterday that Helen came to school on Tuesday and just laid on the floor for about an hour saying she had a headache. She was going to call me, but then she perked up and was fine. and that evening we had a great night, she wanted to watch TV and I told her no, but that she could help set the table for dinner...and she happily obliged, she loved studying her sight words, and played happily with her sister for a time. Go figure!

I do sometime suspect the meds. She is on depakote, trileptal, ditropan, sulfaprim, and miralax. Wow. I have heard that the first gen sulfa drugs had a side affect of headaches, but the newer gen have alleviated that side affect. I have heard one personal story that depakote can cause aggressive behavior, but have found nothing in my research on it. I don't think the behavior is seizure related. She has nasty seizures, she had a seizure cluster that lasted up to 3 hours, they had her dosed up with Ativan and it wasn't working, finally IV dilantin did the trick. Her EEG's never show anything. We are fortunate that the diastat has worked so far in stopping the seizures. She hasn't had one for 7 months knock wood.

We are keeping up with the sticker chart. I agree that consistency is important, though sometimes I feel like she laughs in my face when I remind her of her sticker chart. She knows what she needs to do, sometimes just doesn't want to do it. Do you think sometimes that kids with these medical problems feel they have no control over anything in their life, that they try to gain control in other inappropriate areas?

I have thought about modifying her diet....actually the whole family. I don't know how I would do that though. She lives on cheese, yogurt, milk, and potato chips, with a little bit of broccoli tossed in now and then. What do you replace those with? I was so happy because on Tuesday night she actually ate a whole apple, she hates apples! And what is gluten? Isn't it in everything like the whole grain side of the pyramid?!

Thanks so much for listening, and any and all input.

(((((hugs)))))

I don't have any answers for you but wanted you to know we are thinking of you and hoping you get some answers soon.

My daughter also seems to have headaches periodically. She is non-verbal, so it is very frustrating to try to solve the mystery, but she just sometimes seems to be in real pain- can't tell if it's head, stomach, brain, whatever. But I suspect headaches. We stopped dairy for about 7 months (for a different reason- she had terrible reflux). We didn't see any difference in the pain issue but her reflux did disappear. We reintroduced dairy last week and she is no longer a spitty girl, so it was worth it for that alone.

Langan was also a cheese and milk queen, but we found substitutes she could live with. She ate pretzel goldfish instead of cheddar ones. And she LOVED almond milk. Fruit loops took over for other dairy related snacks. If we had tried to get rid of gluten at the same time, I'm not sure how we would have managed. But so many people have wonderful results when they go gluten free so it may be worth a try. We have been tempted but haven't taken that leap yet.

Good luck. We'll be checking in for updates and hope things get better soon.

(((hugs)))

I was just discussing something similar with Tom's teacher. Tom is doing all he can not to pee at school. They take him regularly to the bathroom with all the other kids, he sits on the toilet and refuses to go. Meanwhile, I never have this problem. Surprise, surpise, he has accidents at school. Anyway, his teacher was saying this might be his way of having some control at school, since most of the school day he is being told where to go and what to do next. She has another kid who is not talking at all, while the mom says the child speaks in short phrases at home... his way of controlling something / anything at school.

They do make soy cheeses (and I've heard they're not very good) as well as soy yogurt (haven't tried that either). There are several different milk subs (almond, rice, soy, and potato milks off the top of my head). When I decided to try going dairy-free, I had gluten-free as a possibility in the back of my mind, and I had read that soy can also be a problem (I was doing some autism reading at the time), so I didn't want to substitute with something that had gluten or was heavy on soy only to have to find something else at a later date if we decided to remove it. (We did Vance's DariFree - potato-based - if you're interested: http://www.vancesfoods.com/) Tom was never a big cheese or yogurt fan, so that wasn't hard to give up. He actually preferred his pizza without cheese, as did Samantha.

Gluten is the protein found in wheat, rye, and barley, and there are cross-contamination issues with oats. So, while it's not the "whole" grain side of the food pyramid, it's a BIG chunk for the standard American diet. There are lots of substitutes. I use a lot of tapioca, quinoa and potato starch. Rice is a popular baking substitute, but Tom had a seizure from brown rice, and we're avoiding all of it. And, we have our very own Gluten Sensitivity / Celiac Disease forum (http://forums.braintalk2.org/forumdisplay.php?f=13) That bunch is very research-oriented. (Check out Cara's Gluten File http://jccglutenfree.googlepages.com/) Unlike a lot of other GF forums, they don't believe Celiac Disease is the only result of gluten damage; they're fully accepting of the neurological problems.

Tom likes his spaghetti, and thankfully, our spaghetti sauce was already dairy and gluten-free. I did corn noodles for awhile, but once I realized Tom enjoyed spaghetti squash just as well, that's all I've been using. He also loves split pea soup, and we actually had it almost every week this summer. I found a bread recipe, so he can have his peanut butter sandwiches for lunch, if he's not having leftover spaghetti or soup. Depending on where you live, you can find a lot of this pre-made... we just have the rice problem.

It's been just over 2 years since I took Tom off of dairy. We went GF in February... so a year and a half between the two. Part of my goal of going GF was to get us eating healthier... not substituting wheat flour brownies for GF brownies, but eating more vegies and fewer sugary treats. Since going GF, Tom is trying more foods. He has always been the pickiest eater of the family (and someone told me that picky eating can be a sign of food allergies). But, his food list has dramatically increased since going GF. I'm not going to pretend that he's wonderful now, but I can get him to try a bite of everything in exchange for a bite of the one food he really wants (sausage, roast chicken, ham, steak, pork chop, whatever we're having for supper). A bite for a bite; repeat. Before, he'd refuse supper and leave the table... he'd rather starve. Or, if he tried the food, he'd gag, with a good chance of tossing the little bit of supper he'd already eaten. Now, the gagging (and mild vomitting) are gone. He is now eating more of the meals that aren't his favorite. I still try to alternate one favorite dinner with a least favorite dinner. And, he's gained 3 pounds! (He's a little boy.)

I'm not sure what to tell you about making changes all at once, versus one at a time. Obviously, I mulled over going GF for a long time. Dairy was the "biggie" for Tom, in that we were able to take him off all meds afterwards. And, every seizure since (5 so far), we've been able to pinpoint the trigger. If you do everything at once, it's hard to say what gave you your results.

I'm starting to ramble. Hope this helps. If you have any other questions, let me know.

Bump to say, I finished my previous post.

Well we didn't make it to kindergarten today. Well we made it there but she didn't stay. She was very ornery when she woke up, and then couldn't deal with having to leave her coat at school so she could go out later and play. She wanted me to take it home. Everything started escalating, I took her home as I wasn't quite sure what was going on with her, and since it is just a normal kindergarten class I feel bad when the teachers have to deal with such behavior. I probably made a huge mistake, and thinking about it now, I should have handled it differently.

Talked with the NS today. He still hasn't gotten the films from the hospital for the MRI (he is in NY, and we had the MRI at a hospital in NJ). He got the radiologists report, but he doesn't go by those, he reads his own films. So I fedXd the ones the hosiptal gave to me, I am glad to get them out of the house. Hopefully he will review them on Monday.

The food thing is a nightmare for me. Tom sounds similar to Helen. She is the pickiest eater in the world, she likes broccoli, and sometimes she will eat meat if she can eat it off toothpicks and dip it in something....she loves A1 sauce. I wish I could get her away from the potato chips, but sometimes I know she is cranky because she is hungry and it is the only thing I can get her to eat. I will look at those sites you sent to me. I think we will try to switch over some things little by little.

Thanks to everyone for your replies, I greatly appreciate it.