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Hi, introducing myself and my daughter


Forum: Children with Special Needs

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  #1  
April 14th, 2011, 08:12 AM
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Join Date: Mar 2011
Location: SE Maryland
Posts: 63
I think this might be the best place, there are so many different areas here at JM lol.

I'm alicia, mommy to v.

My daughter, v, is a medical mystery. Some of her doctors think she may have one thing, others think its another, still others think its another, and yet others refuse to comment on the subject at this point. She is almost 4, and very smart, she just can't always get it out in a way everyone can understand.

DD has,
-GERD
-hypothyroidism
-hypopituitarism with a small pituitary gland and empty cella
-central sleep apnea
-obstructive hypopnea
-autonomic dysfunction
-apiration of thin and nectar thick liquids, getting worse
-low muscle tone
-developmental delays
-poor balance
-odd breathing/lung issues that pulmonology is still trying to figure out
-multiple food allergies (milk, soy, corn, eggs, chicken, pork, and carrots, that we know of)
-possible EOS entercolitis
-sensory processing issues
-possible seizures
-other random things i'm pretty sure i'm forgeting

She sees,
-GI
-pulmonology
-endocrinology
-neurology
-genetics
-developmental pediatrician
-allergy
-nutrition
-regular pediatrician, obviously
-and whatever the school system will give her for therapy

Sorry for the lists, i was looking around before and just answering questions that were asked previously. I hope it's alright if i join you all here as i really don't have much support with all this in real life.
Anything i didn't cover, feel free to ask.
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  #2  
April 16th, 2011, 02:38 PM
greenchild's Avatar Platinum Supermommy
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Location: MN
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Welcome!! I hope someone can figure it all out! Can I ask what kind of seizures she's possibly having? Kaiden used to have benign myoclonic seizures, which turned out to be a sensitivity to nightshade foods.
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  #3  
April 16th, 2011, 03:09 PM
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Join Date: Mar 2011
Location: SE Maryland
Posts: 63
Hi! Honestly, i have no idea what kind of seizures it could be. She has 3 different kind of "episodes" one where she just kind of stares off, doesn't blink, doesn't move, occasionally will make her fall (if she's standing). The second is simmilar to that only instead of getting "foppy" she gets really "tight" and shakes, then she has times where her arm or leg just kind of twitch but she's completly conscious and it really buggs her. Shes had a few short EEGs that dont show defined seizure activity but she never had an "episode" when she was hooked up though.

By the way, thanks for replying, i was actualy starting to wonder whether i posted in the wrong board or something. Theres so many places to go here, and i tend to get lost easily lol.
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  #4  
April 16th, 2011, 07:54 PM
C&K'sMama's Avatar Platinum Supermommy
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Posts: 6,150
I don't know how I missed this post, sorry I'm Alycia and my daughter is also a mystery. Carrie is 3.5 and we've been to a slew of specialists in several states (my husband is military) and they can't agree on an answer. Her list isn't as long, but they do have some similar issues.

Have they suggested a 72hour EEG? I'm told most children's hospitals that have sleep centers have them. Carrie had to have one to rule out seizure activity. There is also another test called an ambulatory EEG. It's much harder to find a place that does them, but the concept seems to be the best for situations like yours that aren't obvious convulsive activity or predictable.

You definitely have the right board
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Last edited by C&K'sMama; April 16th, 2011 at 07:56 PM.
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  #5  
April 17th, 2011, 04:58 AM
sweetmelissa's Avatar Live.Laugh.Love.
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Hello! I'm Melissa. I don't have any experience with seizures so I have no advice but it sound scary & I hope they find a way to get them to stop.
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  #6  
April 17th, 2011, 10:45 AM
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Location: SE Maryland
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Thanks, glad to know im deffinantly in the right place here

Alycia, my DH is military too (navy). V has been to 3 childrens hospitals and 3 different military hospitals. Shes seen 4 different neurologists and thus far none of them want to do anything. I've been told without any evidance on the short EEG theres no purpose to doing a longer EEG (which i know is bogus).
Glad we're not the only mystery here, well not glad, but, you know what i mean right? lol

Hi melissa, thanks.

My gosh, theres so many adorable kiddos here!
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  #7  
April 17th, 2011, 04:08 PM
Ditzzy's Avatar Stupid Lamb;)
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Hi, I'm Hope. Welcome to the SN board! I think your DD has a LOT of the same symptoms mine does. My daughter also has similar staring spells (they think they're absense seizures). We have a few diagnosises (Mito, EE/EOS/EC, etc...) but they think there is something bigger going on that is causing everything. What all has your DD been tested for?

I'm really glad you found us ((Hugs))
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  #8  
April 17th, 2011, 04:10 PM
C&K'sMama's Avatar Platinum Supermommy
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Quote:
Originally Posted by MLMB View Post

Alycia, my DH is military too (navy). V has been to 3 childrens hospitals and 3 different military hospitals. Shes seen 4 different neurologists and thus far none of them want to do anything. I've been told without any evidance on the short EEG theres no purpose to doing a longer EEG (which i know is bogus).
Glad we're not the only mystery here, well not glad, but, you know what i mean right? lol
I totally know what you mean

How often do her episodes (the potential seizure ones) happen? Does she regress afterward?

The general consensus with my Carrie is that she's got a metabolic disorder. Most are undiagnosable, so it's an easy out for them. There is no treatment so basically we're treating symptoms not the condition. It used to bother me but I'm good with it now.

Is she on any supplements? We have just been out on CoQ10 and Fish oil for her delays. The CoQ10 helps with muscle tone (a good friend of mine has a daughter with CP and swears that the CoQ10 has drastically affected her muscle strength. The fish oil helps the body absorb the CoQ10 and it's also good for her brain. I'm excited to see what changes it helps Carrie accomplish.
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Last edited by C&K'sMama; April 17th, 2011 at 04:19 PM.
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  #9  
April 17th, 2011, 05:35 PM
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Hope, i'm not sure exactly everything she's been tested for but i know she's had a micro array (showed a small duplication, but her dad has the same thing), FOD testing (inconclusive due to her elecare), sweat tests (negetive), general mito blood tests (which always come back off, but non diagnostic), and a muscle biposy (which was not sent for the right testing and there was none saved to send for additional testing).

Alycia, they aren't too often, maybe once or twice a week, but they are typically short and unpredictable. They happen more when her body is stressed in some way though. She only has trouble after if they are longer, which really doesn't happen often, maybe once or twice a year.
That does sound like taking the easy way out for them, have they tested her for all the known metabolic conditions? I know there are quite a few that can be tested for and even some that can be treated. See i think i'd be much more ok with not having a diagnosis, if her doctors would all agree on actually treating the symptoms.
She's not on any suppliments right now. It's frusterating, but i'm hopeing eventually someone will listen and try something.
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  #10  
April 17th, 2011, 06:11 PM
C&K'sMama's Avatar Platinum Supermommy
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They've done some testing for metabolic disorders, but nothing has come back as odd. Our docs don't agree on anything, but I've put my foot down on it and really only allow a couple to make any kind of decisions. We have some who are truely looking out for her best interests and some where Carrie's just a number to them. I take the latter's recommendations to the former and if they don't agree, we don't do it. It seems to be working well for us and keeps me from feeling pulled in every direction.

The supplements can be found at a lot of health food stores and you don't have to have doc's recommendation if you think it'd help her. (get the liquid form and the dosage is on the bottle) We're all about being our own advocate for Carrie, cause without a diagnosis, no one seems to care. It's like she's less "special needs" without an official diagnosis and we get blow off a lot.

Do you have a great pediatrician? Our is absolutely amazing and she's the one that we allow to make the ultimate call on Carrie's treatment. If you don't you should contact ACS (new parent support program if you have it) or EFMP and ask someone to find out who takes good care of special needs children. That's how we foudn ours (after 5 previous primary care providers) and the difference that our pedi has made in Carrie's life is unmistakable!

Can I ask how the muscle biopsy went? To me, it sounds horribly invasive and painful. They keep recommending one for Carrie, but it's one of the few tests we've, so far, refused to let them perform.
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Last edited by C&K'sMama; April 17th, 2011 at 06:14 PM.
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  #11  
April 18th, 2011, 07:38 AM
Ditzzy's Avatar Stupid Lamb;)
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Quote:
Originally Posted by MLMB View Post
Hope, i'm not sure exactly everything she's been tested for but i know she's had a micro array (showed a small duplication, but her dad has the same thing), FOD testing (inconclusive due to her elecare), sweat tests (negetive), general mito blood tests (which always come back off, but non diagnostic), and a muscle biposy (which was not sent for the right testing and there was none saved to send for additional testing).
They sent her muscle biospy to the wrong place!? I'd be so mad. When I read her symptoms I first thought of Mitochondrial disease. Ava's biopsy was sent to multiple places (Cleveland and Baylor are two of them) and they still have some frozen future testing. Blood tests can't prove or unprove a 100% Mito dx or. Our daughters have a lot in common. We didn't switch to elecare because her glucose responds better to peptamin Jr 24 hr continous. Can you take her to a genetics Dr that specializes in metabolic issues or Mito specialist at a childrens hospital? That would be your best bet in getting answers.
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  #12  
April 18th, 2011, 08:53 AM
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Alycia, that sounds a lot like what we're dealing with. We've finally found a few good doctors where we are now (specifically pulmo, gi, and endo) but no one really communicates. So we get different answers at ever appointment.
Honestly i know this probably sounds stupid but, i'm kind of afraid to try the suppliments without a doctor. I am so afraid to do anything that will make things worse for her.
Unfortunantly we don't have a very good ped, there really aren't any in the area that are great with SN, especially not at the tricare clinic. Her ped right now just tells us, for anything not extremly routine, to go to x specialist. She is on EFMP and has a care coordinator and everything, but unfortunantly she already sees the "best" ped they have here.
The muscle biopsy, UGH, i'll PM you about that, let's just say it wasn't a plesent experiance.

Quote:
Originally Posted by C&K'sMama
cause without a diagnosis, no one seems to care. It's like she's less "special needs" without an official diagnosis and we get blow off a lot
I could not agree with this more, and it is SO frusterating. Just because they don't know what's going on, doesn't mean she isn't having problems!

Hope, it was sent out for the pathology stuff (which was messed up because they didn't freeze it right) but they never even sent it out to get the specific "mito" testing, even though that was the ONLY reason we did it. It is increadably frusterating, even now 2 years later i still get upset when i think about it. She is perminently scared now and for nothing!
V has been on elecare since she was about 3 months old, she has a HORRIBLE reaction to anything with milk (extreme vomiting, diarreah, bloating, pain, etc). soy (mild vomiting, extreme bloat, diarreah, pain), she even reacts to the "hydrolized" milk protien as if it were straight protien. Heck, she even reacts to the elecare because of the corn, just not as badly as the others.
We havn't done a actual "mito" doctor yet, it's proven 'intersting' trying to get it aproved. Either the doc doesn't think she needs to see them or tricare won't approve the refferal. UGH

(just want to say sorry if this is a bit incoherent, i wanted to reply before i forgot. I've got albuterol shakes due to my own allergies this morning)
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  #13  
April 18th, 2011, 12:44 PM
C&K'sMama's Avatar Platinum Supermommy
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Quote:
Originally Posted by MLMB View Post
i'm kind of afraid to try the suppliments without a doctor. I am so afraid to do anything that will make things worse for her.
HAHA! I'm not the only one who's silly enough to worry about that stuff! I took her to a 5 hour appointment almost 2 hours away from our house to make sure they'd be good for her! Maybe these would be good to bring up to her developmental or regular pedi, or even gi... someone that you trust to run back and check to make sure they'd really be good for her. that is, if you're interested in trying them. I'm so not trying to push them

Sounds like you and I go through a lot of the same frustrations.
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  #14  
April 18th, 2011, 04:41 PM
mamma_anna's Avatar Mega Super Mommy
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Hi. I'm Anna. Just wanted to say welcome to the board. Glad you posted in here. Sounds like your little one is keeping you very busy. I hope you can find some answers soon. Looking forward to getting to know you.
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  #15  
April 19th, 2011, 06:52 AM
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Alycia, i've been thinking of bringing it up at her genetics appointment this summer. I'm planning on doing a lot of research and going in with plenty of "firepower" in hand. I know your not trying to push them, i've been thinking and trying to get someone to prescribe something for a while. I get so frusterated by wait and see doctors. I'm typically a very roactive person and see things as "if it won't hurt her why can't we at least try it".

Hi anna, i'm glad i posted here too lol. She deffinantly keeps me moving. Thanks!
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  #16  
April 19th, 2011, 10:37 AM
greenchild's Avatar Platinum Supermommy
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we've done a lot just thru Kaiden's diet. If you ever have questions about going a the natural route with diet, please feel free to ask
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