Tell me to what condition/s these symptoms point....

[sheryl]

My dd is 12 and in 7th grade. She's always been homeschooled. It's always been my hearts desire. Now, I'm exhausted. She just started her cycle 10 days after her birthday...end of May. She's had 3 cycles from her start. MANY of these symptoms have been present since she was much, much younger....K, 1st grade and a few even when she was a toddler. So, please don't say it's b/c of her hormones. She was this way BEFORE the onset of her menses.

 

Lastly, she has controlled epilepsy. She's been seizure-free for 3.5 years. Again, MOST of these symptoms appeared to some degree BEFORE the onset of her grand mal seizure. However, some symptoms are new and others have grown worse.

 

Not all of these symptoms appear simultaneously. Some days she's a perfect angel. Other days she is like a child from h*$# Still other days are in the middle where many of these symptoms simultaneously.

 

What condition/s would you ascribe to these symptoms?

 

 

1. Inattention

2. Easily distracted

3. Avoids pressure situations, like doing school :tongue_smilie:

4. Can be "up" and can be "down"

5. Not organized in thought, speech, actions...sometimes

6. Lacks motivation, initiative and perseverance....sometimes

7. Lacks organizational skills with her belongings...personal and homeschool related...books, notebooks, desk, etc

8. Forgetful

9. Can not remember very many multi-steps. Even remembering 3 steps can be difficult.

10. Can not "remember" sometimes from one hour to the next!!

11. Can not remember her school work well...week to week and sometimes day to day

12. Better at remembering events from long ago

13. Moody

14. Verbally attacks

15. Physically attacks

16. Has behavioral issues....see earlier posts from 1-3 years ago

17. Emotionally on the shallow side

18. Opposes, defies, disobeys c.o.n.s.t.a.n.t.l.y!!!

19. Lies

20. Manipulates

21. She can be better for others than for me (and her daddy sometimes)

22. It's like she doesn't hear me. I'll present info and she doesn't process it as I presented it. Also, she doesn't comprehend many times.

23. She doesn't connect the dots well....sometimes, in some scenarios

 

Dare I say that many days she's a model daughter. Many days not.

 

And, tell me why again am I homeschooling?

 

Please give me your best insight!!! I'll be keeping this up for awhile. And, others...please keep it going up. THANKS! :bigear:

[VinNY]

deleted

Edited September 3, 2011 by VinNY
sorry my glibness wasn't appropriate.

[Ottakee]

I still vote a mood disorder with ADD/ADHD and possibly some drug/alcohol exposure. Could also be a mito issue as those can come and go but have some have mood/behavior/seizure issues.

[Sushi's Mom]

Sounds like a friend I had as a kid. In 9th grade she was finally diagnosed with some kind of rare form of bi-polar manic depressive. I don't know much more than that because I was never allowed to see her again.

 

Prayers for your daughter.

[rafiki]

.

[PeterPan]

We can throw out ideas here, but really you have to get the evals. Are you planning evals yet? I assume she has been to a neurologist or whoever would look into the causes of the seizures? See it could be run of the mill stuff (add/adhd, working memory, bipolar, etc.), or it could be brain damage from the seizures and side effects of the meds. It could be a blend. I've known people each way (those symptoms caused by the seizures, those symptoms caused by bipolar and other problems.)

 

You have her home because you need time to help her become as functional a human being as she can be. I'd urge you to get some evals. She may have issues with processing speed, which would explain #22. She may be on the spectrum. She may have working memory problems. She may have pituitary problems. The good thing is you DON'T have to figure all this out. All you have to do is pick one reasonable choice and start there. Every doctor and practitioner I've taken my dc to lately has screened for a myriad of other things. So if your first choice only unravels half the problems, they can send you to someone else to help with the rest. Just take the plunge.

[sheryl]

We can throw out ideas here, but really you have to get the evals. Are you planning evals yet? I assume she has been to a neurologist or whoever would look into the causes of the seizures? See it could be run of the mill stuff (add/adhd, working memory, bipolar, etc.), or it could be brain damage from the seizures and side effects of the meds. It could be a blend. I've known people each way (those symptoms caused by the seizures, those symptoms caused by bipolar and other problems.)

 

You have her home because you need time to help her become as functional a human being as she can be. I'd urge you to get some evals. She may have issues with processing speed, which would explain #22. She may be on the spectrum. She may have working memory problems. She may have pituitary problems. The good thing is you DON'T have to figure all this out. All you have to do is pick one reasonable choice and start there. Every doctor and practitioner I've taken my dc to lately has screened for a myriad of other things. So if your first choice only unravels half the problems, they can send you to someone else to help with the rest. Just take the plunge.

 

 

Thanks for all the replies. OH E....I hear what you are saying and it makes sense. I'm just exhausted running from one person to the next and we don't seem to really get anywhere.

 

She's been going to the neuro since the onset of her grand mal. Meds were not started until 4 months later in July 2007. She continued to have absence seizures until Feb 2008 at which time she became and continues to be seizure-free....hence the 3.5 years of being free from seizures.

 

MANY of the these symptoms appeared BEFORE the onset of epilepsy. Some during and some after.

 

See above from your response: I feel like the doctors are not doing enough. I WISH they would test for a host of different things....do I start with her ped? Her neurol has chucked her off with, "usually with seizures there is 'baggage' that presents as behavioral issues". He suggested a counselor which we are working on getting, but that's it.

 

?????????

[Dobela]

With the exception of #18, #19, and #20, she sounds just like my brother at that age with high functioning autism. Until recently he wewas a bad liar because he could not remmber what he said. He also seemed to disobey constantly because he couldn't remember... That has changed though as he has aged and he has become quite proficient.:glare:

[peacefully]

.

[PeterPan]

Yup, neuropsych and also look at her digestion (enzymes for the protein in milk, etc. which can cause symptoms like that).

 

Have you done any reading on Aspergers and HFA? You might as well while you wait for the neuropsych appointment. Just do a search on amazon and find some of the best books at your library.

[sheryl]

Yup, neuropsych and also look at her digestion (enzymes for the protein in milk, etc. which can cause symptoms like that).

 

Have you done any reading on Aspergers and HFA? You might as well while you wait for the neuropsych appointment. Just do a search on amazon and find some of the best books at your library.

 

 

What is HFA? This is great. I'm beginning to feel a little hopeful again. Will check into what y'all are saying and Eliz..will do the same with Aspergers and HFA.

 

Would her ped be able to perform lab work to determine the digestion issues. See, that's exactly what I'm looking for. If she's "not" bp, aspergers, or anything else on the spectrum, then perhaps it is a digestion issue or other issue. That's thinking outside the box which I like b/c I like to "consider" all possibilities.

 

But, NP testing for digestion? Seriously.. I hope so, but I've not heard that.

 

Still, I know you are very knowledgable on these matters so please spoon feed more when you have time....re: above. Thanks!

[PeterPan]

Sheryl, look up the Gut Psychology Syndrome book. It has the only explanation I've ever seen of the very nasty symptoms my dd had from milk when she was young. My ds seems to have the same reaction. He basically spent all of today raving and acting like a NUT. I'm not saying it's the only thing wrong, but it's one of those things that can be part of the mix. When the protein doesn't digest right, you get this off chemical that goes into the brain and causes all kinds of psych and behavioral and even praxis and whatnot symptoms. So it's just one of those things you could read and see if anything sticks.

 

I'm not sure there is testing for digestion. Allergies yes, digestion no. It's more just annecdotal where you ahve the symptoms and then they improve as you work on the digestion with enzymes, lots of fruit and salad, etc. Look up Houston Enzymes. I just got samples from them to try on my kids and am finding them helpful. If a dc craves a particular food or eats a LOT of it, that's something to watch out for.

 

HFA=high functioning autism. Several other people also said it in their responses. It's sort of the elephant in the room here, sorry.

 

People don't usually have just one problem. I found that Gut Psychology book and also the Houston Enzymes through our speech therapist, of all people. Lots of kids with the apraxia that my ds are also on the spectrum, so she sees a lot of that and is just sort of in the loop with who the doctors are in our area, things people find helpful, etc. So just start making connections in your area and learning things.

[Beauty From Ashes]

My brain went to an Autism spectrum disorder (aspergers, high functioning autism). I would move on from the neurologist (don't mean drop him, she has need for him, meaning find someone else). If you can self-refer on your insurance, I would find a developmental pediatrician. They are excellent at DXing kids with what's going on. Take this list with you, onset ages where you can remember them, and have some evals done there. That's who saw our boys and after thorough testing we had answers.

 

Please know that even if you get a diagnosis, that doesn't mean doctors will help. Even the better doctors often say things like "he has XXXXX, see you in 6 months". You will be the advocate to get the help needed. And, often, you aren't given much help in what that help needs to be. So, don't be discouraged if that happens to you. Find others that are living with what your daughter is and ask them where they started.

[Misty]

Would her ped be able to perform lab work to determine the digestion issues. See, that's exactly what I'm looking for. If she's "not" bp, aspergers, or anything else on the spectrum, then perhaps it is a digestion issue or other issue.

 

You can be on the spectrum AND have these issues with digestion.. It's not an either/or situation.. In fact, most people on the spectrum do have some sort of digestion issue, food intolerance, food sensitivity, or food allergy. Most good doctors now realize that Autism is a "whole body disorder" and not just a mental issue by itself. Even Temple Grandin had colitis.

 

And I am willing to bet that since your dd has a history of seizures and is having issues with working memory, etc.. That she probably falls into this category of food intolerances.. Gluten is the BIG one that causes the most problems, especially seizures.

 

Your pedi cannot do much for you as far as hunting down specific food sensitivities. If you want to do some testing, I would recommend testing through Great Plains Labs http://www.greatplainslaboratory.com We did the IgG food allergy testing through them and it was very accurate. Check to see if they file with your insurance. You can also test through Alletess http://www.foodallergy.com . Again, you want the IgG food allergy test. You need a doctor's signature for these tests. The problem is, many doctors just aren't aware of how IgG allergies affect the brain so they don't sign based on their ignorance alone. Our pedi signed it for two of my girls. Here's a hint.. Don't ASK your doctor to sign it.. Just TELL your doctor you would like to run this test to rule out IgG allergies based on some symptoms, "so please sign here". Be matter of fact and don't take no for an answer.. Be prepared to educate your doctor. He might say he can run those tests for you, but he will run the wrong tests.. he will do a Celiac screen and an IgE blood test OR he will send you to an allergy clinic where they will proceed to prick your child full of potential allergens (the RAST) and other torturous methods that will tell you ABSOLUTELY NOTHING.

 

If your doctor can't help you (won't sign) then you might be better off finding a doctor such as a Naturopath who actually understands all of this and can help your daughter. Seizures, working memory issues, bipolar, etc. are STRONGLY linked to gluten sensitivity so I would do everything you can to rule this out.

 

Another option for gluten testing is with Enterolab.. You will want to do the stool sample test if you go through them.

 

OR you can just do a food elimination trial, but that is a stressful thing to go through and can be confusing. Usually there is more than one food that is affecting these kids.. And when you have a "leaky gut" (also called Gut & Psychology Syndrome) situation going on, there is ALWAYS more than one food causing problems. For one of my daughters, we had to remove gluten, casein (milk protein), and soy.

 

Please let me know if you have any questions about any of this.

Edited September 4, 2011 by Misty

[Beauty From Ashes]

There are two great tests that help with this. Nutraeval and a CDSA. Problem is, your pediatrician probably won't order them. Our ped will because she's a DAN level 1 certified doctor as well. A DAN doctor, find a good one that is in it to help, not to make $$, can do a LOT for these issues. You should see where my sons were and where they are now. It's incredible. They eaach have different gut issues, but severe. It's amazing how gut issues can severely affect the rest of your body and how it works.

[Misty]

Our ped will because she's a DAN level 1 certified doctor as well. A DAN doctor, find a good one that is in it to help, not to make $$, can do a LOT for these issues. You should see where my sons were and where they are now. It's incredible. They eaach have different gut issues, but severe. It's amazing how gut issues can severely affect the rest of your body and how it works.

 

:iagree:

 

And I noticed you are in OK.. Who is your pediatrician? My daughter's DAN doctor is in Jenks. We live closer to OKC though so would like to find a good pedi who is also a DAN. Feel free to PM me.

[Beauty From Ashes]

We go to Texas. Our ped is a level 1 and we see a level 2. I would go with a level 2 whenever possible.

[Misty]

We go to Texas. Our ped is a level 1 and we see a level 2. I would go with a level 2 whenever possible.

 

Your pediatrician is in Texas?? Our DAN is definitely a level 2 (since 2008). I would take a level 1 pedi any day.. Better than our pedi who has no clue about this stuff. Do you know anyone near OKC?

[Beauty From Ashes]

Let me check a few places and I will get back with you.

 

Yeah, we go to Texas. We drive 2 hours. But in our area of OK, the feeling is pretty much, "Autism, what's that?" You should hear some of the things professionals in this area have said to me. Really, as a Mom one week out of having an Autism diagnosis I knew more than these professionals.

[woolybear]

:grouphug: I'm really clueless on all this, but wanted to say many of the symptoms that you wrote sound like my ds, age 11. We have off and on for years thought something was up with him. I think it is the off part that would lull us into not pursuing any thing more. That and his attitude against it.

 

At any rate, my thoughts these days on him are leaning towards Aspergers. And yes, today was another day where I thought, "Why am I homeschooling him?" And "is this really what's best for him, me, and his brother?"

 

Just to let you know, I have no advice, but lots of empathy. Also :bigear: to others.

[sheryl]

:grouphug: I'm really clueless on all this, but wanted to say many of the symptoms that you wrote sound like my ds, age 11. We have off and on for years thought something was up with him. I think it is the off part that would lull us into not pursuing any thing more. That and his attitude against it.

 

At any rate, my thoughts these days on him are leaning towards Aspergers. And yes, today was another day where I thought, "Why am I homeschooling him?" And "is this really what's best for him, me, and his brother?"

 

Just to let you know, I have no advice, but lots of empathy. Also :bigear: to others.

 

Thanks much...appreciate it. And, I hope you'll find some answers too! :grouphug:

[Mergath]

What some of the pp's have mentioned are certainly possibilities, but as for the symptoms that appeared or worsened around the time she began to have seizures, have you considered that whatever med she's on may be causing some of the problems?

 

I was on neurontin for my epilepsy through most of high school. I couldn't focus, couldn't think straight. My memory was crap. Because I lived in a fog, I became more and more emotionally unhinged. My grades fell to Cs and Ds. Finally, in eleventh grade, I quit the meds, and within a couple of months 99% of my problems had disappeared. Turns out most of my issues were side effects from my medication.

[wy_kid_wrangler04]

My dd is 12 and in 7th grade. She's always been homeschooled. It's always been my hearts desire. Now, I'm exhausted. She just started her cycle 10 days after her birthday...end of May. She's had 3 cycles from her start. MANY of these symptoms have been present since she was much, much younger....K, 1st grade and a few even when she was a toddler. So, please don't say it's b/c of her hormones. She was this way BEFORE the onset of her menses.

 

Lastly, she has controlled epilepsy. She's been seizure-free for 3.5 years. Again, MOST of these symptoms appeared to some degree BEFORE the onset of her grand mal seizure. However, some symptoms are new and others have grown worse.

 

Not all of these symptoms appear simultaneously. Some days she's a perfect angel. Other days she is like a child from h*$# Still other days are in the middle where many of these symptoms simultaneously.

 

What condition/s would you ascribe to these symptoms?

 

 

1. Inattention

2. Easily distracted

3. Avoids pressure situations, like doing school :tongue_smilie:

4. Can be "up" and can be "down"

5. Not organized in thought, speech, actions...sometimes

6. Lacks motivation, initiative and perseverance....sometimes

7. Lacks organizational skills with her belongings...personal and homeschool related...books, notebooks, desk, etc

8. Forgetful

9. Can not remember very many multi-steps. Even remembering 3 steps can be difficult.

10. Can not "remember" sometimes from one hour to the next!!

11. Can not remember her school work well...week to week and sometimes day to day

23. She doesn't connect the dots well

 

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 23 all describe my 1st grader. He has HFA, Sensory Processing Disorder/Integration Dysfunction (I doubt that is the issue), Visual/Spatial Delays that require vision therapy, tourettes (again- not your daughter) and is cognitively the age of a 4 year old 11 mo (just found that one out also)

 

He is VERY immature in public. Very frustrating when you have to tell your almost 7 year old to NOT run out into the road and actually hold him back to be sure he won't. Or to stop laying on the ground in the grocery store. Like others have said there could be so many different things going on. How much of it is just her? How much is being caused by ________? I don't know about where you live but some states you can get free testing done through the school district. That gave us a wonderful start and direction on where to go beyond them!

 

 

Also- ds is a totally different kid when he drinks coffee! He is WONDERFUL! Give it a try with hot cocoa and milk in it ;)

Edited September 7, 2011 by wy_kid_wrangler04

[sheryl]

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 23 all describe my 1st grader. He has HFA, Sensory Processing Disorder/Integration Dysfunction (I doubt that is the issue), Visual/Spatial Delays that require vision therapy, tourettes (again- not your daughter) and is cognitively the age of a 4 year old 11 mo (just found that one out also)

 

He is VERY immature in public. Very frustrating when you have to tell your almost 7 year old to NOT run out into the road and actually hold him back to be sure he won't. Or to stop laying on the ground in the grocery store. Like others have said there could be so many different things going on. How much of it is just her? How much is being caused by ________? I don't know about where you live but some states you can get free testing done through the school district. That gave us a wonderful start and direction on where to go beyond them!

 

 

Also- ds is a totally different kid when he drinks coffee! He is WONDERFUL! Give it a try with hot cocoa and milk in it ;)

 

Well, I don't know....how much is just her. She is the absolute moodiest kid I've ever known. I'm beginning to believe her issues are emotional/behavioral.

 

What some of the pp's have mentioned are certainly possibilities, but as for the symptoms that appeared or worsened around the time she began to have seizures, have you considered that whatever med she's on may be causing some of the problems?

 

I was on neurontin for my epilepsy through most of high school. I couldn't focus, couldn't think straight. My memory was crap. Because I lived in a fog, I became more and more emotionally unhinged. My grades fell to Cs and Ds. Finally, in eleventh grade, I quit the meds, and within a couple of months 99% of my problems had disappeared. Turns out most of my issues were side effects from my medication.

 

Hi Mergath, Yes, my dh insists she is overmedicated. Here's a situation that "may" confirm that. She was on lamictal and still having seizures. When they introduced zarontin Jan 2008 and within a month she became seizure free....on 2-5-08! She has remained free these 3.5 years. We took her in for her f/u with her neurol and described the similar symptoms "then" that we are facing today. She backed her zarontin down some and it helped! That's the key, it helped. She's since developed "more issues". So, it could be an offshoot of the previous seizure activity, good ole manipulation and sorts, or being overly medicated.

 

So VERY GLAD that most of your problems, as you stated above, have been resolved as a result of stopping meds! Way to go, Mergath!!!!

[gardenmom5]

I would read about Executive Dysfunction, ADHD, and Anxiety. Executive Dysfunction can be found alone. where ADHD always includes executive functioning issues.

 

Schoolbehavior.com has excellent executive functioning articles

 

For anxiety, my favorite book so far is "My Anxious Mind" by Magination Press.

 

:iagree:I'd also check out sensory-processing-disorder.com as executive function freqeuntly has sensory issues as well.