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My Mystery Child

Apr 11, 2009 - 3 comments
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Neck

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head

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Pain

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child

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mystery

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Baby

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I'm writing this and adding things to it when i need to..for me to keep track of my Daughter who has something wrong with her and no one can figure it out..and maybe some other mommy might have been through this or a mom who is going through this..some of these are posts that i've already have written asking for advice..

My daughter Aaralyn is now going to be one year old january 11th 2009. she was a healthy 7lb baby and all these problems started about two months old.



September 27, 2008

so some of you ladies know that my dd has had an off and on head tilt (comes and goes) and goes from one side to the other..her doc said it was torticollisthen later decided it wasn't so sent me to birth to three and after looking at her this summer they did not think it was torticollis and i was worried about it so i got a second opinion and he said it was not torticollis that it was just muscle spasms well she did not have the head tilt for some time now and last week she had just a slight tilt to one side and then the next day it was gone..today i woke up and got her up and she could not pick her head off her shoulder..i am soo freaked out so i take her to the ER and demanded tests be done..and the f*cking doc told me there was nothing she could do for my dd b/c they can't run any tests on her other then a blood test..now mind you i was in the ER for an hour before a RN came in and asked me ?'s then an hour and a half later the doctor (which is like my age) walks in and hardly even looks at my dd and says "yep its torticollis" then when i tell her to go ahead and take the blood and asked how much longer it was going to be..she told me 2-3hours more before they can get the tests back..i told her i had a son at home i had to attend too..and i could not stay that long and if i could just get the blood work done and leave..and she told me NO..SHE TOLD ME NO!! THEN..i kept on saying i can't stay that long..she says to me..WELL THEN YOU DON'T CARE ABOUT YOUR BABY!!! i jumped up off the bed and looked at her and said..DO NOT TELL ME I DON'T ******* CARE BECAUSE I'VE BEEN ALL OVER TOWN LOOKING FOR A DAMN DOCTOR THAT WELL LOOK AT MY DAUGHTER TO FIND OUT WHAT THE HELL IS GOING ON WITH HER...IF I DIDN'T CARE I WOULD NOT BE HERE RIGHT NOW!!!! she took a step back b/c i was getting closer to her and she starts telling me..I'm sorry I'm sorry i can understand..THEN..I SAID YOU DON'T UNDERSTAND OR YOU WOULD NOT HAVE SAID THAT TO ME..GET THE BLOOD WORK AND I AM LEAVING!! so fifteen mins went by and two RN's came in and took her blood and i walked right out the freaking door..without signing any darn papers! the hospital calls me about two hours ago..and wondered what happen to me and dd i said i will take her to her doctors monday ..so my dd is going to a pedictric neuro to have tests done to see if anything is going on in her brain and spine..there was alot more going on in the hospital but this is just the run down..when she called me tonight she was just a snot like she was at the hospital..i hate doctors!! I'm so frustrated that no one is doing anything or any tests to see if something is going on!! all she had was an X ray or her spine and blood work...I'm even more frustrated that i feel something is really wrong and they are not listening to me..I'm going to go to WVU hospital or MAYOCLINIC...so ladies..pray that someone helps us..its been going on to long and no one is doing anything to help us!!

October 22, 2008

well..alot of you ladies know that my dd Aaralyn has been having a neck problem..and lately it has been getting worse with her neck and her vomiting..i went to the neuro today to find out that my dd suffers from headaches/migraines which is causing neurological problems..any how they are taking her to morgantown to put her to sleep for an MRI to may sure there is nothing on her brain causing the headaches..i can not remember what the doctor called it but she is sending me the information in the mail anyway its called _____ _____ torticollis...two long words i can't remember..but i just wanted to let you ladies know what was going on..i have a family history of neurological problems..me and my mother suffer migraines my mom also suffers from MS, my grandfather has parkinson's, my grandmother has alzheimer's...so anyway..we are waiting on the doctor to call us to send her down..i'm praying to god there is nothing on her brain..and i hope she is not a migraine sufferer..

November 8, 2008


well she is going down state to have a MRI done Monday to see what is going on with her! they want to make sure she has no tumors on her brain. I just sat in the hospital last night for three hours while they did a cat scan on her head and neck..they wanted me to wait for the results and when they came in they didn't tell me anything and just told me to go home..as the days get closer i'm getting worried about them putting her to sleep..hubby and i talked about what could happen while she was under..and we know the risks. we are going to go through it just to be on the safe side. I have a feeling she does not have a tumor but we will see what is causing her headaches and neck tilt with the MRI. she is having it done in the morning at WVUH. one of the best hospitals around here..so we are in good hands..but i only ask that when Monday comes that you ladies keep her in your prayers..we will be spending a good bit of the day there. and hopefully we will find out what is going on that day! so I'm not going to be on this weekend there is much needed time to be spend with my kids!

thank you ladies for being here for me through out our struggles.



UPDATE: well we left home at seven got there at eight thirty AM.  getting there was not as bad as i thought it would be..just the hospital is a freakin maze!! there are two hospitals the old one and the new one which sits right in front of the old one..they had us going back and forth. they took her in and put her to sleep and i walked out of there crying, tired and hungry so hubby and i went down to get breakfast and when we were done trying to find our way back we waited in the waiting room for five mins..she was under for about 40-45mins. i could hear my baby screaming bloody murder and i jumped up and ran down the hall to the recovery room she was just screaming no one could calm her down..they said that is normal and she would be like that for the rest of the day! we are still waiting for the results i should know something within a few weeks hopefully! so when i found out the results I'll let you ladies know! until then she is doing good and hasn't had an episode since the 4Th.

11-18-08

well i had gotten a call from the neuro and they said no tumor on her brain and no lesions  which is great news!! But now the whole migraine issue is out there we really don't know if she is having them.. But Monday i had her at her doctors to get a flu shot and her doctor and i were discussing what could be going on..i demanded to know the answers, like is it going to go away, what can i do to help her when this happens and etc.. and she had said she was lost and honestly did not understand what was going on with her and that she did not have any answers or ideas what could be going on with my dd. So she referred me to another specialist So the neuro and the new specialist are going to work hand in hand to find out what is causing my dd to be ill. But i do know it is not a tumor and it is not a muscle problem..now to get checked for other things..we did discuss that if it happens again that i am to bring her in asap so the doctor can try to look at her better when it is happening! she is also going to call the neuro and check up with her about the MRI and see where i need to go from here!!

December 7, 2008

my DD who will be 11months has been shaking when she wakes up from a nap or in the morning its more so hands and head..like a shiver but she is not cold and it lasts for a few minutes..she has being doing this for a few months and i never thought anything of it until to night she got sick earlier today (all over the store,her and me we think it is b/c she ate to much food from a xmas party we went to) and we came home and i laid her down for a nap she slept for two hours b/c she missed her nap earlier today and when i went in to wake her up she was shaking really bad, noticeably bad! it could be that she isn't feeling well today but she does it all the time when she wakes up just not as bad as today...do you think there is something to be concerned about??

December 30, 2008

i don't know what to do anymore..Aaralyn woke up today with her head tilted again the last time it happened was Nov. 4 lasted for two days and she has been fine till now! she has no muscle tighten in her neck if i lay her down and move her head she can do that but she just can not hold her head up when she is in a upright position. she was trying to crawl and ran into the wall and then was trying to play while standing and she kept on hitting her head off things ..like she is top heavy..she falls over every time she moves..today seems pretty bad..the doctors don't know what is going on..and the last time i took her to the ER they gave me **** told me i didn't care about my child and didn't run any tests on her until i snapped on them..they ran a blood test and told me there was no muscle problems..i ended up walking out of the hospital after i snapped on the doctor..i don't know what is going on..what could cause something like this? the neurothought it was migraines causing nerve problems but she isn't so sure now..I'm worried and scared to death something is going on in her and they are not listening to me..the PT told me to watch for seizures..she hasn't been sick lately..she seems very tired right now and has only been up this morning for two hours which she normally stays up until noon...i don't know what to do!! i just want to run to someone and tell them to fix her..i'm so hurt and heart broken..this is horrible when i can't even help my own child..i don't know what to do to help her...okay i'm going now..i can't stop crying..any help would be grateful!


UPDATE..

Aaralynwent to take a nap at ten this morning.. i laid her down gave her some tylenol and she woke up about 1:30pm her neck was fine like nothing happened..i don't get it..I'm so confused!! she was really sleepy so she took another nap at 3:00 and didn't wake up until 5:30 she ate she was fine we gave her a bath and she went down for bed at 8pm. I guess we will see what happens in the morning..her doctor isn't in until friday..so i'm **** out of luck!

December 31, 2008

well i did alot of researching so much my eyes feel like they are going to fall out of my head...and i think i know what it is for sure! a few months back i said the neuro said it was ____ ___ torticollis....well i finally found it.."Benign Paroxysmal Torticollis" it is a very very rare disease that happens to infants it is caused from migraines that cause all kinds of problems and my dd shows every symptom that others are going through..now i am going to bring this up to my dd's doctor and wait to see what she says..this is a horrible disease..and i can't believe I've passed this on to my child...it all makes sense now.. So now i am feeling really horrible for being soo selfish for wanting another child ( don't get me wrong i love my dd she is a wonderful thing that happened). but because of me and my own migraine problem i've done passed it along to my beautiful,happy, loving daughter..and it freakin kills me to know just because i was soo selfish my daughter has to suffer in pain literately for the rest of her life..how horrible i feel like a pile of ****..and seriously nothing anyone says is going to change the way i feel..i tried to have her for two years and finally got my baby girl..the only thing i ever wanted was for her to be healthy...and she is exceptshe has to live in pain..i wish i could take it all away from her..only a god send miracle could help us..i guess i'm going to begging on my knees for her to get over this and fast..why should a little helpless baby have to suffer so much?! its so freakin horrible..god help me! my soul is so broken..

JANUARY 20, 2009

Today we got up and took my son to his bus stop then hubby and i went to walmart all of a sudden Aaralyn's head just fell over to the side..she was getting very quiet and looking at me funny..went to lowes came home still has the head tilt gave her some motrin like the doctors orders and laided her down for a nap..well she started coughing then vomitting she is so sleepy cause she missed her nap and doesn't want to play though she tired a few times..she has threw up three times already and her head is still tilted almost two hours after i gave her the motrin..i put her in her play pen to keep an eye on her while i was doing some chores but didn't get much done..because she takes it to hard when she vomits and flips out..so i have to watch her or she will choke and not breathe..anyway she just now fell asleep on her belly with her butt in the air..i told hubby that if she kept on vomitting i was going to take her to the ER and try to see if they can help this time..but i was going to a different hospital..~sigh~ i feel so helpless and hopeless...but i know tomorrow she will be fine...i just don't get it...i am on my knees when this happens begging for it to stop crying heart aching b/c i don't have a freaking clue what is going on or how to help my child..i feel like a failure b/c i just can't help her i don't know what to do..every damn doctor is stumped..hubby tells me earlier today before she got sick he says "oh she is just fine" i told him "she can't even sit by herself without falling over!" then later when she started getting sick i started crying and screaming at him "don't tell me nothing is wrong with her don't you see there is something wrong!" i feel so crazy and looking into my dd's eyes when she is like this is such a heartbreaking feeling..i did promise her that i would go to the end of the world to find out what is going on and i would do anything just to take her pain away..and that i loved her so much...that makes it two times this month one just on new years eve and today.. that is the closed it has been a while..i need an answer i'm going so crazy and numb..i did call her dr today and they can't get her in until the 20th of next month..how freakin cute right?! anyway i just needed to vent i was hurting and no one is around today..hubby went to work and my family don't live around here..so its just me and the kids.

March 14- 18, 2009

Aaralyn has been having neck issues again this time it lasted a few days..no vomitting just the head tilt and some trouble walking..

March 24, 2009

Today Aaralyn woke up  with a horrible head tilt and vomitting..this time her head is tilt to the opposite side than last week..she seems to want to sleep she is trying to play but is crabby..



April 10th 2009

Today Aaralyn has woke up with her head tilted to the right..she is very crabby and can not walk today..or even sit up straight..she is very sleepy this morning..she also fell and hit the back of her head on the corner of the door frame while trying to sit...it just pisses me off anymore..i'm at a loss..i don't know what to do to help her..make her feel comfy you know?! she is resting now..I hope when she wakes up that she will feel alittle bit better i did give her some pain meds b/c of her teeth coming in and b/c of her head..UPDATE..she woke up at three slept for five hours straight for a nap..i didn't want to bother her just let her rest anyway she woke up vomiting..she has not ate anything since breakfast and i tryed to give her a cracker at dinner and an ounce of water (didn't have pedilite) two mins later it came back up..she seems to be vomiting alot of stomach acid and is vomiting very hard she is having trouble breathing and she loses the color in her face..she looks so sickly and looks at me with sad eyes..(how can i take her pain away?) she has felling down everytime she stands busted her head alot today.. she seems to have no balance and has been falling down even when sitting..she must be very dizzy!! the shaking has gotten very noticable..hubby has asked about it now..I am making a doctors appointment first thing monday to discuss some things and try once more to get to the bottom of this..it really ***** having a child that has a very rare disease..i feel all alone..seriously! my mom suggested that i start to take things out of her diet to see if that helps..but my dd was doing this at two months and she was on formula...there are ALOT OF THINGS that trigger migrianes..how am supposed to know what to do if no one knows why infants get migrianes.. TODAY IS NOW..APRIL 11..she woke up still shaking very noticable and unable to keep her balance..her head is fine no tilt..i'm wondering if something is really wrong and they are completely missing it..hubby said it was pointless to take her to any of the ER's around here since we've been to everyone and they all have said it was nothing..i'm still paying on one hospital that said she just had a stomach virus..yeah 500bucks for them to tell me that and send me on my way..No help whats so ever..and the other hospital gave me ********..i wish i knew someone else that is going through what i am..after my daughter fell yesterday i was reaching for her as she was falling backwards like a tree falling and i didn't get to her in time..and she hit her head badly..i screamed for hubby and started balling my eyes out along with her..hubby says there is nothing more you can do for her until she can tell you what is wrong...i told him it might be to late by then and she might have seizures when shes three and it could have all been provented years before..so i feel i am alone with my child..worried to death..she seems to have a few weeks inbetween these episodes..doctor thought they would start to go away..but they seem to be coming alittle more lately..three attacks in less then a month..I need to find a doctor that knows about this disease..anyway pray that she gets better and that god will take her pain away..god bless those that pray for her..



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by kcon88, May 05, 2010
hi, been reading your updates, have you found out what it is ? x

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by loribell63, Nov 25, 2010
November 25, 2010

Hi, I'm a desperate Grandma looking for answers too. My grandson will be 3 in feb. He has been tilting to one side or the other since he was about 10-12 months. He has twitches for just a split second but all the time. He was also sick a lot & kept ear infections and his doctor would only prescribe prednisone breathing treatments and antibiotics. My daughter had to change doctors because he wouldn't listen to her pleas that something was wrong. The new doctor at least had his hearing checked & said the left side was at 50% due to fluid build up & sent him to have tubes put in his ears to drain the fluid. He stopped getting the ear infections but the tilting & falling didn't stop. We kept telling the new doctor something else was wrong & she would just tell us that we were just over protective & he would be fine. She had his vision tested, it was ok & said he was flat footed & maybe that was why he was leaning & falling. Finally we were able to get the number for All Children's Hospital in Tampa, FL & called & spoke to a neuro doctor. They called his doctor & got a referral. When they took him in, it was only supposed to be an initial visit but when they saw him they could tell right away something was wrong. They did an EEG & said he was having seizures which is what we thought. They said he was having as many as 50 to 60 a day & we couldn't tell, we only noticed it maybe 10 to 20 times a day. That was shocking to us. They said he was even having them in his sleep which would explain why he still wouldn't sleep thru the night. They put him on antiseizure medicine & scheduled an MRI. He had the MRI & a few days later they called & said yes he has epilepsy but it looks like it is the kind he would grow out of & a lot of children have it & are fine. But they also found an arachnoids cyst in the front left lobe of his brain.  It was 6cm x 2cm, by now he was 2 1/2 yrs. old & they said that he probably has had it since birth & most people are born with it but never develop symptoms. That really pissed us off because his doctor said that they would never test for neurological issues until he was about 5 yrs. old & if we would have listened to her I can't imagine what he would be like. They said his was severe enough to warrant surgery & have it drained & closed up but they could not take it out because of where it was at. We were scared to death but at the same time happy to get this thing out of his head or at least the pressure. The surgery went great.They showed us the before & after MRI's & that was the first time we saw the original & we couldn't believe how big it was & they said it had actually started pushing his scull out & it had to have been a lot of pressure. He has about a 4 in. scar & a tiny steal plate in his head in case they have to go back in later they can do it easier. He went back for another MRI & it still looks good. He went to his neuro for another EEG & they said he still is very active with seizures. His speech has been effected. He knows what everything is but the words don't sound right. She finally switched doctors again, this time he is fantastic. He is going to send him to speech therapy along with OT & PT. He finally went back again for another MRI & they said the cyst isn't filling back up & he doesn't have to have another one for a year. They are trying to figure out the right medication for his seizures. They said he is still having many micro seizures a day & they have to get it under control & then his speech should correct itself. But they said the tilting & falling have nothing to do with his seizures. His are when he is up for awhile & playing hard he starts to lean & walking sideways & falling down. He has to lay down & rest for awhile & then he is okay. When he wakes up from naps, some short, some long, he can be extremly grouchy & aggrevated. I feel like it is seizures that make him act that way. Sometimes it is hard to get him to calm down. I keep hoping they will identify what is causing those symptoms. I know my daughter is one of the strongest people ever. He is extremely large for his age. At 2 1/2 yrs. he was 45lbs & now he is up to 49.6lbs. He hardly eats anything. The medication effects his appetite. They said it is abnormal growth due to the cyst pressing on his pituitary gland. Now that it has been taken care of hopfully his size will level out, but he is quite large & doesn't understand & my daughter has to deal with the terrible 2's & 3's with the size of a 5 or 6 yr. old. It has been really hard on her but she sticks with it & she is very small. I prey for him all the time & I will prey for you & your child. If anybody else reads this & has any answers or suggestions, please help. Signed, Desperate Grandma.

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by nicrioux, Apr 09, 2014
stop getting your children vaccinated until you do some research please there is so much info on this that you will be blown away,,, I don't know if this is the problem but these strange symptoms lead me to think that its possible you tube search still want vaccine after watching this by eccentric...also The you tube documentary lethal injection the story of vaccines... and Madison before and after autism and autism btw is not only issue due to vaccines.  I worked in med field and got flu shot everyyear   but now after much research I don't trust docs fda or vaccines....they just don't admit that these are not safe and they make money doing it so they wont tell us the truth.  a mom from az that cares
im so sorry for you guys and what your going thru DO RESEARCH  CANCER IS CURABLE THATS ANOTHER LIE WE BEEN TOLD

THANKS NICOLE 2014 and how is your daughter now?

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