Have some New news

[myrose]

Maybe someone can help me understand what I have also found out today. I called our old neurologist's office and left my number for the on call nurse to call me back. They are open but not the office part. (They are there to do the 24 hour EEG's)

Anyhow the nurse called me back! I remembered her from our visits there and she remembered me. What she told me was astonishing to me and I am looking to get get answers on to why this happened as well but of course will have to wait until Monday morning.

 

I explained to her what was going on with my daughter...... (I never mentioned the new neurologist) I expected her to offer that old clonidine as they did before but to my SHOCKING surprise she told me that I should call first thing Monday morning to get an appointment and have her EEG rechecked because of the discharges the previous two showed. My reply after a LONG PERIOD OF SILENCE was..."WHAT DID YOU JUST SAY"!!!!!!!!!!!

I then said "WHAT DISCHARGES"! What are you talking about!!!!!!!

She replied yes there were discharges on the right side of the brain on both the 20 minute EEG and the 24 hour one as well. She then said to make sure I come in for there could be inflammation there now.

 

The Neuro NEVER NEVER NEVER mentioned anything about discharges to us!!!! He said all her tests were normal!

 

My husband got on the phone at that point and wanted to know why the neuro never said anything like this to us. She did not have an explanation for this.

 

Now before I drive a MILLION MILES an hour to get to their office on MONDAY and FLOOR this neuro.....can someone maybe help us understand on why maybe he did not mention them?? Could it be he felt it not important. I trying to hold my temper and give him the benefit of the doubt. Maybe this is normal for neuro's not to mention this. The reason the 24 hour EEG was ordered was because the first 20 minute one did show abnormal but he said that sometimes that was common and is the reason the longer one was recommended. This one he said was "NORMAL".

I wish I could speak to him right now or at least understand why one would not release this information to us.

Our insurance covered nothing of that 24 hour EEG and the cost is $5000!!!!!!!! I do not care about the money, I would sell everything I own to help my daughter but my point is that you would think for all that money and time he could have AT THE VERY LEAST told us about the discharges. Wouldn't you think??

 

The new neuro on Monday is looking at a 72 hour EEG with video montitoring again and I sure hope this time we get some answers or at least that we are told EVERYTHING that it might show whether or not it is important....I want to and feel it is my right to be informed and told of anything that is not normal.

 

This is just a big mystery added to the pile over here. Why in the world would he not mention this??

 

All my reading has been on tic disorders so I have no knowledge of this other stuff.

 

Quickly an update on Gianna: Her first dose of topomax was given at bedtime lastnight (15mg) She woke up this morning and my heart raced as I watched her....sadly she is still going somewhat strong. That head of hers is still violently going up. My husband though felt it was a little less violent and maybe a tad better.

She had another break down about it this morning but so far that was the only one. Hopefully she will not start to cry again before bed. I had a neighbor bring over her little girl for the day so Gianna could play with someone her own age and thought it would keep her mind off things. It seemed to work.

Maybe I could "rent" my neighbors child until our appointment on Monday. (sorry for that remark....I just thought I need a little humor here before I really do loose it all.

So I guess all and all it was a bit better today but I saw it more in just the emotional part of it all for her. She gets her second dose in about 1/2 hour so maybe things will be better tomorrow. Not sure how long the topomax takes to have an effect if it were myoclonic seizures we are seeing. The new neuro said it was fast acting and would help a great deal in getting to the bottom of this if a good result was seen soon.

 

Sorry that my posts are so long. I also want to Thank all of you for all your kind words, good wishes, and prayers. YET AGAIN!

All of you are such wonderful people and the really funny thing is that for the most part ALL of you are pretty much strangers to me but have helped me more than some of my immediate family in getting through this. I thank you all from the bottom of my heart. Not sure what I would do without all of you !!!!!!

 

 

lastly can anyone tell me if its possible to have tics and have abnormal EEG. So confused about all this. Almost like I have to start ALL OVER with something else. My brain is fried!! I would probably have the MOST ABNORMAL EEG in the world....

[faith]

Hi Wendy,

that certainly is interesting. I don't know what the discharges mean and so I don't want to give anything I don't know of, but one piece of advice I do want to give is this.....I know you are upset enough to go in there and want to kick ###, but best thing to do is go in as sweet as pie and play as dumb as you can. If the doctor sees you are in the pouncing mode, he is likely to go into defense mode and then you may not find out exactly what you need to know. Just tell what has been going on and act like you are in there for help and understanding your daughter's health. THEN, when you get the whole story, compose your thoughts, and go from there. Hope that makes sense.

 

It is possible that these type discarges you speak of do not necessarily indicate anything, but possibly something to watch and as the nurse said, recheck in the future? you did mention that the first 20 minute one indicated something, so that's why they did the 24 hr. one.?

 

Just to mention, and I don't know too much about seizures, but I do have a friend whose daughter had two of these as a baby, and she is 9 now and all is fine, she is not on any medication.

 

Let us know how everything goes, and praying your little one will feel better very soon.

 

Faith

[myrose]

Faith I never planned on storming in there. I was just trying to make everyone know how I felt and if anyone knew why that might of not been mentioned to us.

We are going to the NEW neuro as planned on Monday and also keeping our appointment on the 30th with a new ped.

As far as why the last neuro never reported this to us is a concern for me until I can at least find out why and I hope to do that via phone call Monday after our visit with the new one.

This whole thing though I must admit has turned me into somewhat of a MONSTER and I can actually invision myself running in there and holding him up from the back of his collar! But...as I stated I have to wait until I find out why this was not mentioned...there could be a reason.

Just sort of burned my RUMP when I first heard about it. Sorry to scare you.....I am still sane (not sure how but I am)

 

Monday I feel will be a magic day for us. At least in learning something for once.

 

About the seziures...as mentioned before my sisters child had seizures as well. She was put on anti-seizure meds and then just out grew them and never took the medicine again.

The only seizure that could resemble what we are watching and seeing would be the myoclonic type. It causes jerk like motions and believe it or not I have been reading that it is often mis-diagnosed as tics/tourettes. These myoclonic type seizures do not make you loose conciousness or memory either.

 

I guess for now something for us to just think about until we go on Monday. The throwing and dropping of things with the myoclonic seizures is also another weird simalarity for us here.

 

How are things going over there for you. Gianna is of course sleeping again. I have been sleeping on her trundle for quite a long time now. She is right here beside me and for the second night there really is no jerking...just a few but nothing like it was while she was asleep a few nights or so ago.

 

I forgot to ask Carolyn about sending you that info....I apologize....I have an email waiting to get to her as well so I will add that favor in there before I send it.

 

 

Thanks for the advice....Hope you have a nice night

[Chemar]

myrose

first, I do so agree with the wise words from Faith above.

 

I am truly surprised that the doc didnt tell you first time round of the discharges but hopefully you will have answers soon.

 

 

Inflammation can do a lot neurologically too....maybe one of the docs will be able to check those markers too for you.

 

I am hoping that this will work for good for your little one as better that they should investigate to know what they are treating. I hope too that the pediatirc doc on the 30th will be able to offer you guidance on what you will learn from the neuros. She is a very caring and balanced lady, using her conventional training to the utmost yet with that "alternative" openess that allows her to see things in a broader view

 

 

here are a few specific topics I found on NT's epilepsy forum that may be helpful to you later. For now I pray you and your precious little girl will be able to rest and that the med will keep the seizure activity inder control

 

 

 

this is a really nice mom (who may have posted here too at one time?) and deals with tics and seizures in a 4yo

http://neurotalk.psychcentral.com/showthread.php?t=23760

 

this is someone who I believe posted here too, and mentions tics and seizures too

http://neurotalk.psychcentral.com/showthread.php?t=25111

 

here is one on flicker triggering seizures

http://neurotalk.psychcentral.com/showthre...=photosensitive

 

 

this one is more about the Types of seizures

and has info on myclonics etc

 

 

((((((((Wendy)))))))))))) I hope you are ok with your own health. You've been thru so much stress and I know first hand what that can do.

Praying you will find strength and peace and that God will help these doctors to have wisdom and insight

[myrose]

Chemar I posted a new post to you. I just realized I forgot to tell you that I have not made it in yet to the Orlando Heart Center. My appointment as I told you was on the 30th...this is my daughters appointment day with the new doctor so I had to cancel. My palpatations are not as bad as they were. And I have no other signs that would warrant me to get in there now (as far as heart issues) I truly believe it is anxiety over this whole ordeal. I have never experienced heart palpatations before so this would make sense. I am sure to be drinking too much coffee and not sleeping enough but I would guess that everyone has gone and still does go through this all. I re-sceduled for the 6th. You are so kind and thoughful to think of my health as well.. Thank You for that. It brought a smile to my face.

[kim]

Myrose,

 

I never planned on storming in there

 

 

Thank goodness you have two calm level headed people responding to you myrose. I just had to go back and remove some rather strong language from the thread where vaccine issues were being discussed, because I gave in to the old rant monster.

 

I will be anxious to hear the explaination for not sharing the info from the EEG too. I'm sure they will say that it wasn't significant enough at that point to alarm you with or something like that. My family learned the hard way, to ask for written reports on things like that. A test was performed to rule out a serious condition. We were told everything was fine, just keep an eye on things. 4 years later, when it became apparent that it wasn't fine, a report surfaced showing that the initial test couldn't rule out the condition, which is easily tested if you go one step further. Had my family member been informed, they certainly would have requested the simple test that could have ruled the condition in or out, and been spared a much more serious situation later on. This is not related to tics or my kids in anyway. I think your situation is another example of why that's a good idea.

 

BTW, I have had heart palps since about 11 yrs old. I was told it was more or less a nervous condition. You might want to think about upping magnesium intake too. I wish I would have known about it years ago.

[ad_ccl]

our doctor sent our son to be checked for seizures as well after his behaviour one day at school was reported to be a bit strange by the teacher - can't remember the details - sure I wrote about it here - I think he looked a little distant and was misbehaving somehow - the doctor told me seizures can present as misbehaving etc for short periods of time - again I can't remember what he was doing - but it was out of character and came and then went. Also -the tics (often from lights) can be seizures as you said - part of the testing they did at the hospital was with strobe lights. Good Luck - the good part is that you have some appts lined up and that you are starting to get some news that can provide some answers. The brain is so complicated. I remember a neuro telling us there could be such a fine line between movements from seizures and tics - that it can be misdiagnosed.

[Sunshine]

Wendy,

 

Boy, I have read your two posts back to back as I have been away for a few days. Wow, what an ordeal!

 

I am surprised that your Neuro didn't tell you about the second EEG. It doesn't make any sense to me.

 

I also gather that you have been having heart palpitations.... yes??? My husband has had them on and off for years. He had always been concerened about a heart attack, as he has bad genes for heart conditions. He was finally diagnosed this year with anxiety (surprising, as he seems to be Mr. Mellow). He has tried a few different meds, and seems much better.

 

Stress is SO hard on the body!!! Do take care of yourself (hard, I know... but SO important). I used to think that I'd take care of myself when my son was better again. Three years later, I realize that I better take care of me now, or it may never happen.

 

(((Hugs))) to you and your family... Good luck tomorrow!!

[Nan]

{{{{Myrose}}}},

 

I am so sorry about everything you and your family are dealing with; atleast the one good thing, like so many people pointed out is that, you get all these tests done and hopefully an answer will be born for all your daughter's problems. We are all here to help; lean on us whenever you feel like it.

 

I will keep your daughter and your family in my prayers tonight. Hoping that tomorrow is a different day and a much brighter one bringing you closer to the answer to all the issues.

 

-Nan

 

 

Maybe someone can help me understand what I have also found out today. I called our old neurologist's office and left my number for the on call nurse to call me back. They are open but not the office part. (They are there to do the 24 hour EEG's)

Anyhow the nurse called me back! I remembered her from our visits there and she remembered me. What she told me was astonishing to me and I am looking to get get answers on to why this happened as well but of course will have to wait until Monday morning.

 

I explained to her what was going on with my daughter...... (I never mentioned the new neurologist) I expected her to offer that old clonidine as they did before but to my SHOCKING surprise she told me that I should call first thing Monday morning to get an appointment and have her EEG rechecked because of the discharges the previous two showed. My reply after a LONG PERIOD OF SILENCE was..."WHAT DID YOU JUST SAY"!!!!!!!!!!!

I then said "WHAT DISCHARGES"! What are you talking about!!!!!!!

She replied yes there were discharges on the right side of the brain on both the 20 minute EEG and the 24 hour one as well. She then said to make sure I come in for there could be inflammation there now.

 

The Neuro NEVER NEVER NEVER mentioned anything about discharges to us!!!! He said all her tests were normal!

 

My husband got on the phone at that point and wanted to know why the neuro never said anything like this to us. She did not have an explanation for this.

 

Now before I drive a MILLION MILES an hour to get to their office on MONDAY and FLOOR this neuro.....can someone maybe help us understand on why maybe he did not mention them?? Could it be he felt it not important. I trying to hold my temper and give him the benefit of the doubt. Maybe this is normal for neuro's not to mention this. The reason the 24 hour EEG was ordered was because the first 20 minute one did show abnormal but he said that sometimes that was common and is the reason the longer one was recommended. This one he said was "NORMAL".

I wish I could speak to him right now or at least understand why one would not release this information to us.

Our insurance covered nothing of that 24 hour EEG and the cost is $5000!!!!!!!! I do not care about the money, I would sell everything I own to help my daughter but my point is that you would think for all that money and time he could have AT THE VERY LEAST told us about the discharges. Wouldn't you think??

 

The new neuro on Monday is looking at a 72 hour EEG with video montitoring again and I sure hope this time we get some answers or at least that we are told EVERYTHING that it might show whether or not it is important....I want to and feel it is my right to be informed and told of anything that is not normal.

 

This is just a big mystery added to the pile over here. Why in the world would he not mention this??

 

All my reading has been on tic disorders so I have no knowledge of this other stuff.

 

Quickly an update on Gianna: Her first dose of topomax was given at bedtime lastnight (15mg) She woke up this morning and my heart raced as I watched her....sadly she is still going somewhat strong. That head of hers is still violently going up. My husband though felt it was a little less violent and maybe a tad better.

She had another break down about it this morning but so far that was the only one. Hopefully she will not start to cry again before bed. I had a neighbor bring over her little girl for the day so Gianna could play with someone her own age and thought it would keep her mind off things. It seemed to work.

Maybe I could "rent" my neighbors child until our appointment on Monday. (sorry for that remark....I just thought I need a little humor here before I really do loose it all.

So I guess all and all it was a bit better today but I saw it more in just the emotional part of it all for her. She gets her second dose in about 1/2 hour so maybe things will be better tomorrow. Not sure how long the topomax takes to have an effect if it were myoclonic seizures we are seeing. The new neuro said it was fast acting and would help a great deal in getting to the bottom of this if a good result was seen soon.

 

Sorry that my posts are so long. I also want to Thank all of you for all your kind words, good wishes, and prayers. YET AGAIN!

All of you are such wonderful people and the really funny thing is that for the most part ALL of you are pretty much strangers to me but have helped me more than some of my immediate family in getting through this. I thank you all from the bottom of my heart. Not sure what I would do without all of you !!!!!!

 

 

lastly can anyone tell me if its possible to have tics and have abnormal EEG. So confused about all this. Almost like I have to start ALL OVER with something else. My brain is fried!! I would probably have the MOST ABNORMAL EEG in the world....

[bmom]

Myrose-

I have come to believe that every set back with my son leads me closer to the answer. I have gathered a little knowledge each time he has had trouble and I am hoping that the answer will come. I know it is hard to endure the hard times, yet I think it is Gods way of saying, "Look over this direction, here is the problem". Your set back has been huge, maybe the answer will be huge too. Praying this is so.

[CSP]

Wendy,

 

First, good luck today.

 

I was wondering if you have ever had her Magnesium levels checked? My son had a very jurky body when he was 12 when this all first hit him. I thought at the time, because of all I had read on Bonnie's finding about mag. I was sure my son was in need of high doses of mag. as his tests showed he was deficient. I remember about the muscle spasms and convulsions I read with mag deficiency.

 

Just a thought... I really hope you come home today with lots of info, and a new path to follow.

 

CP

[myrose]

CSP we have an appointment with a new ped. on the 30th. She is going to have all her levels checked at this point. One thing I know for sure about today is that new bloodwork will be ordered (I am assuming to check again for the high titers) Being that my daughter had such a hard time the first time we did blood tests (they poked her 5 times!!!) I am trying now to get a hold of the ped and see if we can't get her orders in as well when we repeat this bloodwork for thr neuro again. This way maybe she will only have to get poked again ine time. (Being that she is and will go COMPLETELY over the edge when I TRY and take her in for the blood to begin with. Trying I guess to keep her as calm as could be. She is already on the road to HATING doctors so much that I find her not even wanting to tell me when she has a sore throat or is not feeling well. She is scared that I will take her to the doctors....

 

We are just about getting ready to head out here for the neuro....I pray so hard to at least get some answers no matter what it is. I just want to help her so bad. We cannot continue on like this at all.

She has shown some improvement yesterday and today. Still head jerking but it has calmed down and nothing as severe as it was. Not sure if this is the topomax or not. We started on that 3 nights ago. Wish I could say its helped but to be perfectly honest I would have to say that at this point I feel I just do not know anything anymore...much less what to think.

I will of course post later on what happens today at the neuro.....

Have a nice day...

[Chemar]

praying you will get clear answers from neuro Myrose

 

and that all the rest will begin to work together for good for your little one and you as you get correct treatments once there is a clearer understanding of what is causing her symptoms

 

God Bless

[Caryn]

I'm a bit late joining this thread and I haven't fully read all the responses, so forgive if I am repeating myself.

There is a correlation between seizures and C.D. (celiac disease).

 

I will drop a few studies here with text for ease of read, okay? If your child has other symptoms as well you may want to ask your doctor to screen for gluten antibodies in the blood and then follow through with a genetic screen if that one does not determine celiac disease.

 

Successful Treatment of Epilepsy and Celiac Disease With a Gluten-Free Diet . Pediatric Neurology , Volume 33 , Issue 4 , Pages 292 - 295A . Mavroudi , E . Karatza , T . Papastavrou , C . Panteliadis , K . Spiroglou

Abstract

Celiac disease is a gluten-sensitive enteropathy, which recently has been described in association with epilepsy or other neurologic disturbances. This study describes a case of a 7-year-old female with intractable-to-treatment epilepsy and late-onset celiac disease, who was treated successfully with a gluten-free diet plus antiepileptic therapy. It is important for children with intractable cases of epilepsy and weight loss to undergo screening for celiac disease.

 

Range of Neurologic Disorders in Patients With Celiac Disease Nathanel Zelnik, MD, Avi Pacht, MD, Raid Obeid, MD and Aaron Lerner, MDFrom the Department of Pediatrics, Carmel Medical Center, The Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel

(full text online)

Neurologic Manifestations

Neurologic disorders or findings were found in 57 (51.4%) patients with CD: 22 with a single manifestation, 23 with 2 manifestations, 7 with 3 manifestations, and 5 with 4 manifestations. In contrast, only 42 (19.9%) control subjects reported the presence of neurologic disorder: 26 with a single manifestation, 12 with 2 manifestations, and 4 with 3 manifestations. None had >3 manifestations. Although patients with the late-onset form of CD were somewhat more prone to develop neurologic disorders than patients with the classical infantile CD (54.7% vs 48.3%), this difference was not statistically significant (P = .5). [additional text omitted] Epilepsy and Other Seizure Disorders

Four patients with CD had benign febrile seizures during infancy, and 4 had nonfebrile seizures: 1 with benign partial epilepsy, another with a single unprovoked nonfebrile seizure, and 2 others with chronic epilepsy (including 1 patient with intractable epilepsy associated with occipital cerebral calcifications). Three control subjects had benign infantile febrile seizures, and 3 had epilepsy (1 with partial complex seizure and 2 with generalized tonic-clonic seizures; Fig 2).

 

Learning Disabilities and ADHD

In contrast to the usual male preponderance in children with these conditions, among patients with CD, male and female patients were almost evenly affected: 13 (20.3%) of 64 female patients and 10 (21.2%) of 47 male patients. Ten patients presented with the classical infantile form of the disease, and 13 presented with late-onset symptoms (including 1 asymptomatic patient). Three patients had mental retardation, and 3 patients had seizures. Among the patients with mental retardation, 1 had Down syndrome associated with moderate mental retardation; 1 had epilepsy with occipital calcification; and another had mild mental retardation and autism, but no specific cause was found. In the control group, male subjects were predominantly affected: 11 (12.9%) of 85 versus 11 (8.7%) of 126 among female subjects. Two control subjects had mental retardation, 1 with Down syndrome (Fig 2).

 

Here is a nice well rounded article about CD for beginners:

(From the American Family Physician)

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You ThinkDAVID A. NELSEN, JR., M.D., M.S., University of Arkansas for Medical Sciences, Little Rock, Arkansas

And here is an exerpt about seizures:

 

NEUROLOGIC MANIFESTATION

Cerebral calcifications and epilepsy have been associated with celiac disease29,30 and do not always resolve with the institution of a gluten-free diet. Peripheral neuropathy, postural instability, "gluten ataxia," and other vague neurologic complaints may be the sole manifestation of gluten-sensitive enteropathy.31 Autoantibodies associated with celiac disease have demonstrated a strong affinity for brain vasculature.32

 

 

It is important to mention that although in some cases the seizures resolve themselves without medication after a GF diet begins, this is not always the case. Most stuff I read refers to the use of medication in conjunction with the diet.

 

I will say some prayers for you as you try to figure all this stuff out. You are in a tough place.

[bmom]

Carynn,

Was it a DAN doc. that discovered this problem with your son? Did he run a bunch of tests to determine this? I am trying to figure out how you pin it down.