Please I need help. Anyone someone might no what is wrong with my baby.

Christel - posted on 01/23/2009 ( 85 moms have responded )

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All I'm asking for is for you to read this. if anyone can help please I need it.



I have a 4month 1 week old baby girl. The doctors have no clue on what is wrong with her. I need any help I can get out there. She was born with low tone in the arms, tremors. Her tremors are what’s waking her. Her body shakes, mainly her arms, its a little vocal too. She had her first tear the day after she was born. It seems as though she is in pain all day long. She has a g-button. She fights you often, (arches her body). Does not like to be held, or touched. Her hands she hates anyone touching. And trying to comfort her is never been there. Her sleep is the hardest. She has never really slept a whole lot, and now we are talking maybe 6-8 hours or less a day. I'm not a hundred % sure how much during the night she gets. If I'm lucky I might get her down for an hour or two. Her whites of her eyes have always been a grey color. She was Jaundices when she was born. She had fluid around the brain.

I had a perfect Pregnancy. I had a little kankles, and acid tummy, maybe a headache once in a while. I never got sick or vomited or cried or anything, I got fat. So I have to say it was perfect.

Delivery was a hard. All planned to have her 9/13/08. They gave me a pill 6am, nothing happened tell 12 noon sharp.. Water broke, and then it was hard labor for 6 hours. I was off the page with pain and how fast and how many were coming. After 6 hours I got the Epidural and it was heaven. I couldn't feel a thing. About 2am they decided to get me off my happy drug and I pushed for 2 hours after that. Not to be to Graphic but I tore so bad it took them 45 min. to sew me back up.

So All in all she has had MRI's EEG's, Ultra sounds, tons of blood work and I think there was a cat scan too. All in all we still have no answers.

If anyone has any ideas, please let me no, I don't no how much time we have or if it's going to get worse.

At 4 months 1week, she can't hold her head, she does not grab toys, I don't think she can see all that well. All the mile stones that she should have already past she has not.



Your friend Christel

Madilynns mommy!



P.S. the doctors have called it a Brain abnormality, or Encephalopathy. Do to the three EEGs she had one of the eeg's came back with a slight pause of the brain.

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Dana - posted on 01/30/2009

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She is so pretty.  I would agree that it is neurological.  The tremors, fluid would point to that , but so would the pain responses.  I know this is heartbreaking for you and will keep you in our prayers.  I have to say that she needs to see a pediatric neurologist and would recommend contacting St. Jude's or Shriners.    I also assume she has had liver functioning tests?   If they were borderline, make them do them again. The dis-coloration around her eyes could be related to that. 



The tremors could be caused by small seizures (sorry just read your PS).  EEG's aren't very helpful unless they are doing a continuous one....they can keep them on for an extended period of time so you don't get a small glimps but rather a long scan.    I also assume that they have dealt with the "water on the brain" and that she is no longer building up fluid?  This would cause a significant amount of diffiuclty for her poor brain and cause many symptoms. 



Because I don't know where you live, I'm not sure what services are available, but contact state government and/or coutnies to see about ealry intervention (birth-3yrs) services.  She should qualify for Physical therapy services to help with the muscle tone and motor movements.  She may also qualify for occupational therapy services.  They can also help find specialists in your area because they see much more of the infant diffiuclties than others.



 



Most of all for you, I have to say that you stated a lot about your pregnancy and delivery which makes me worry that you are blaming yourself.  In all the children I have worked with (I am a school neuropsychologists and work with a range of children, some severely disabled) it is not the parent's fault.  Sometimes pregnancy is perfect and things still happen.  I can only pray that you have a support group yourself and please don't feel bad about using them.  We all need help!

Angela - posted on 01/23/2009

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Aww .. I too would just keep bugging dr after dr.. sometimes it is the only way..my friends dad is a dr.. not a childrens but maybe they can help with some answers..i will talk to her about it too.. see if maybe we can help..when my oldest son was a baby we too were given no answers to what was wrong with him..we had to diagnose it ourselves.. we tried supplementing with formula and figured out he has a dairy type allergy...he was only 6 weeks when we found this out..he began to swell up and had a purple rash all over his body..we took him to childrens hospital and no one could give us an answer.. if you can send me her symptoms i will ask my dr and maybe he can help..my thoughts are with you and your family..

Kim - posted on 01/23/2009

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Christel,

Have they ruled out allergies and have they checked her spine. The tremors remind me of something spine related, but then I am not a doctor or a nurse, so don't think of me as an expert. I watched a story about a child with spina bifida and the child had tremors and seemed to be in pain. I know your child doesn't have that, but that is what makes me think her spine shoud be checked. Most of all, know that I will be praying for a miracle for Madilynn and strength for you.

Stasha - posted on 01/23/2009

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When the whites of the eyes are gray, the most common reason is because of a bad liver. Your dr has probably checked that already, however that really stuck out to me.

Sharri - posted on 01/23/2009

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It was a case on a morning talk show (Not sure if it was The Today show or The Early Show) similar to your babies this morning. It was a little boy. I think he is three now. They named the rare disorder, but I can't remember what it was.What stood out to me most was the parents saying that they could not hug him prior. I remember the parents saying he seemed to always be in pain. He had some type of surgery that remove a bone from the base of his skull and neck to allow more room for the spinal cord. After the surgery his pain seemed to go away, he started sleeping, and now he is catching up developmentally. The parents stated that when he came home from the hospital and slept the entire night they woke up and ran to the room thinking something had happened to him.Maybe you can call or email one of the shows to see if you can get a link to the story to compare. Good Luck

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Caroline - posted on 07/04/2012

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My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

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Rosemary - posted on 04/03/2009

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Dont want to worry you but has cerebral palsy been mentioned at all.My son who is 21 has cerebral palsy and when he was a baby he had the jerking movements as well and was told he was just a lazy boy at his clinic visits as he wasnt doing any thing like rolling etc

User - posted on 04/02/2009

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OK, my heart first and formost goes out to you and your little family. I have worked with shriners, childrens wish and many such other organizations, my younger brothewr has down's syndrome. The best infromation that I can offer that I remember is this. Sometimes when they are all scuntched up inside and they come out they're growth plates don't shift properly first give her some infant tylenol or other such medication.  They need to be stretched and I know that sounds like torture but when they fall back into place she won't hurt as much. Try putting blankets into a rosting pan in tthe oven with the lid on as about 250 degrees for about half hour so that they are warm but not burning, and wrapp her tight in a swaddle so that she can't fight and just hold and talk to her, have a conversation about the weather and stay calm she will fight but if you soothe and rock and talk she will know that you are being there for her.But definetly direct contact heat even a warm hot water bottle might work

User - posted on 04/02/2009

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OK, my heart first and formost goes out to you and your little family. I have worked with shriners, childrens wish and many such other organizations, my younger brothewr has down's syndrome. The best infromation that I can offer that I remember is this. Sometimes when they are all scuntched up inside and they come out they're growth plates don't shift properly first give her some infant tylenol or other such medication.  They need to be stretched and I know that sounds like torture but when they fall back into place she won't hurt as much. Try putting blankets into a rosting pan in tthe oven with the lid on as about 250 degrees for about half hour so that they are warm but not burning, and wrapp her tight in a swaddle so that she can't fight and just hold and talk to her, have a conversation about the weather and stay calm she will fight but if you soothe and rock and talk she will know that you are being there for her.But definetly direct contact heat even a warm hot water bottle might work

Christel - posted on 04/02/2009

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Early Infantile Epileptic Encephalopathy or Early Myclonic Encephalopathy is what they came up with. Its very rare and by all means We are hopeing it is not that.

Christel - posted on 04/02/2009

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Early Infantile Epileptic Encephalopathy or Early Myclonic Encephalopathy is what they came up with. Its very rare and by all means We are hopeing it is not that.

Theresa - posted on 03/13/2009

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Hi Christel, diagnosing a baby is always very difficult - especially where the problem is neurological in nature. I have a 16 year old daughter with Spastic Diplegia - a form of cerebal palsy. By your brief discription, I would difinately see a neurologist, it could be CP in nature esp with the low tone in her arms (CP can be spastic, low tone, uncontrolled movements or a combination of all or any of these!) - which is why they take so long to diagnose and it is usually at around a year old that a difinative diagnoses can be made. My best advise would be to get your little one into physio as soon as possible - the brain has the amazing ability to retrain its self and the nerve paths (before the age of 6 years) that are damage to use new paths and the sooner you can start physio the better the outcome! Your daughter hatred of touching could be what is called tactile defensiveness - this too is treated by physio and introducing specific feelings. You can start by making you touching firm, ie swaddling, holding her tightly to you chest, firmly stroking her skin rather than the feather touches we tend to give babies - her nerve endings may be extremly sensitive to the touch and this sends the brain into a bit of a frenzy and sparking all over the place instead of just along the paths it should. So after all that, my best advice would be make two appointments asap - one with a neurologist specialising in pediatric conditions such as cp as well as a development physio - rmeember the sooner the better!!!

love and prayers to you!

[deleted account]

my little boy did the same stuff when he was born a preemie(now he's 11)......our situations may be different so im in no way trying to scare you....dr.s told me and my husband he had abnormal levels of blood in the ventricals of his brain.....and he also had blood in his stool... he was really slow with motorskills to start off with.....dr.s of course told me he would never walk talk and would be slow in school. We spent his whole first yr in physical therapy 3x a wk. But now, he's doing great normal in every way. straight A student. races BMX. May God Bless those Dr.s and give them knowledge to figure out whats goin on with your little angel

[deleted account]

It is good that you have contacted ECI. I am a public school special education teacher (public school is for ages 3 years through 21). Ask them about respite/DARS services in your state. Get on all the waiting lists. Also, check your insurance or state medicaid. One of my students has a private nurse that is with my student about 8 hours a day while she is at school recieving educational services. It is great! My hope is that you and your precious girl get all the resources that should be available for you all. Best Wishes and God Bless!

btw...my student is 4 now and making great strides in motor and communication skills. She has an adorable/yet fiesty :) personality! She's a blessing!

Take care,

s

Christel - posted on 03/12/2009

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Wow I have to say Thank you to all! Everyone has been so wonderful to me and my family. The way people have posted in trying to help Madilynn is so wonderful. Please I thank each one of you..



Madilynn is 6 months old and is still the same. Meaning she is still a newborn baby. I was just thanking last night how people say they never want there baby to grow up. Well I have that baby. She is growing on the out side ok. But can not do anything as far as playing or rolling, or holding her head, or siting up. She has so many  symtoms its so hard to do the research on her. She went to her pediatric neurologist the other day and I asked him if he could name the seizures Madilynn was geting. (He couldn't) Her seizures are so not normal. Her neurologist is wonderful, he is the one helping us the most. As he has told us there is not much he can do for us, he has helped us get records together so we can bring them to Stanford medical in California. (with a recomendation) With having a docter who is lost, he has been the best.



As for the testing that has been done to Madilynn, we are not sure what has all been done to her. To get the records from the hospital is going to cost us a prety penny. Thats what one doctor told us. I am not sure is she was tested for allergies, bone marrow, geneticist or anything in that matter. The hospital was so stuck on her brain that we have not checked for anything leading away.



The drugs she is on for her seizures is still the same. She still has the same amount of seizures I beleve, but she can now sleep a little more then she was. I thought she was going to get a lot of sleep but now that she has been on her drugs for some time now she is geting use to it. So I think she gets maybe 6-9hrs now. Its hard to no.



As for Stanford medical. I am so happy. We go there the 23ed of this month. My thought is new faces, new doctors, maybe someone will no or have seen what she has. If I have to tell the world about Madilynn I will.



Can I just say that "What the hell is Soical security for"! We all pay in to it  and What we get is crapped on  when we need it. They say Madilynn qualifys but we got denied becouse I am unenployed. What crap. We were told to look in to a lawyer. still not sure about that. 



She did have her eyes checked out. Hereye development is good. Doc said she was to little to be checked out for if she could see anything. So I gess thats good news. she still can not chrack much of anything. she can sometimes hold her stare on you for a minute or so.



She is involved with Nevada Early Intervention Services (NEIS) Yes I love them. They have helped me out in so many ways. They come out to my home and help Madilynn.



I thank I forgot to add that Madilynn was in the hospital the 9th-13th of Feb. The 6th of Febuary she came down with a temp of 102. So that Sunday we brought her in and they told us to take her to our peditrion for a checkup. So that Monday we did. She was admitted to the Hospital. She stayed in the PICU tell Wen. then moved to PEDS tell that friday. They told us that she had something in her lungs and they were not sure what. They said she had Amonia or RSV or something. She was in need of oxygen untell we left. I had to throw a fit for them to release us too. She was all better, I got realy sick, They would come in asking me if everything was alright. So I said no it was not. I needed #2 dipers and they could not give them to me. So they told me to use a #1 then put a # 3 on top of that. LOL Yep that didn't work. she had poop all over the place, and one pistoff mommy. So I was heading to get new beding when a nurse stoped me to tell me that they had a privet room for us. (My roomie was with her little one, prego and was sick). I was so mad I said no I will be going home to day. Thats when they sent in the Docter. LOL He comes in asking me if everything was ok. Dum thing to ask a pistoff mommy who got sick from there dirty hospital. So I told him to look at the Poop (S---t) on the bed over there and tell me how my stay was. (I was giving Madilynn her second bath of the day and 3ed blowout. Anyways We got to go home a couple of hours later. I have I told anyone I hate hospitals. I have never liked them, I had one almost kill me when I was 20. I walked around with a burst Apendix. Yep a whole week. I had 65% of my body infected. Thats a storry I have also.



Well I have rambled on now.... So sorry.



I will write to you as soon as I get the news.



Thank you to all......................LOVE CHRISTEL and MADILYNN

Sonya - posted on 01/31/2009

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Oh sorry your going through all of this I feel for your poor baby,but you guys have my prayers.



 



Sonya

Shannon - posted on 01/31/2009

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i'm so sorry to hear that...i'm not sure what to say or what can be done....you all are in my thoughts and prayers....

[deleted account]

I am so sorry to hear what you are going through.  I went through having a very sick newborn and after going to 2 hospitals, we ended up at the Children's Hospital of Philadelphia.  The doctors there are truly experts.  At the second hospital they said they had never seen anything like my son, but at CHOP they had seen many and were able to accurately diagnose and treat his illness.  He is now 7 years old and is doing well. I am so glad that the drs at CHOP were able to help my son.  My thought and prayers are with you. 

Jamie - posted on 01/31/2009

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Christel,



Hi, I left you a message on your wall last night, I'm not sure how I did that!  Please read my message, I believe I can help.  I think Madilynn might have a rare diorder called Chiari Malformation Type 1.  It's almost always found in older children but younger and younger children are being diagnosed.  See your wall on Circle of Moms, I've explained in detail there.  What a wonderful mother you are to seek help through any angle!  I'll keep your whole family in my thoughts and prayers!

Vicki - posted on 01/30/2009

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request to see a neurologist and find out what special needs services are available in your area...you are entitled to free help for developmental delays by federal law...here we call the place to seek help a regional center (they provide physical, etc therapy) good luck

Bernadette - posted on 01/30/2009

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I know this may sound to simple but hear me out. Is she breast feeding or formula feeding? Has she ever been tested for allergies. My middle son was like holding a board he was delayed in all of his common new born developements. He never slept soundly he always seemed like he was being woke up by pain.They told us there was all kinds of thing wrong with him and he actually started with kidney failure.



 My pediatrician is a group practice and I was going to the young more "modern" physician in the practice thinking they would know all the newest and best info. It took me going to my doctor and saying I am not a "rookie" Mom there is something worng with my baby he needs your help the younger doctor referred me to the older doctor in the group and he spent fifteen minutes with him and said this child is allergic to something and its poisoning him. After talking to us and really listening and asking all kinds of questions he thought it was dairy he changed his formula and within two days I had a different child he was able to rest. He smiled for the first time he was four months old.His health problems that they told me would be on going and could have in essence killed him all but disappeared.



The ultimate thing you have to do is find a doctor that will listen to you and stop at nothing to find out what is going on with the baby. Ask so many questions you brain hurts and remember there are no wrong or dumb questions! I wish you all the luck in the world and will say a prayer for you and your family.

Rebecca - posted on 01/30/2009

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So sad to hear about such a precious child! I shed a tear for you all! Sorry I haven't any extra advice on what could be wrong.  My thought right away was neurological.  But after seeing some of the other possibilities, it still could be any one of them too, such as nerves, spinal, fluid on brain etc.  Keep searching, anywhere you can and keep your head up high! Good luck and know that Madilynn and you and your family are in my thoughts always!

User - posted on 01/30/2009

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maybe request a genetics evaluation? I have a nephew who has low muscle tone, seizures, sleeps alot, can not do anything himself and hes 3 years old. we took him for an evaluation at childrens mercy hospital in kansas city kansas and they look at everything.. they measure every area on his body and look at his features.. in his case, they measured his ears, fingers and eye slits and come to the conclusion he may have what is called Kabuki Syndrome... it at least gave us some answers.. it may help you too.. god bless you and your family.

Dani - posted on 01/30/2009

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I was just curious I know u said she has had blood work done but do u know if they have done n e genetic testing on her blood? My daughter has a chromosome anamoly that can cause some of the things u had stated! If they havent tested her 4 that i would recommend it HIGHLY!!!! That could help get u a diagnosis and set her on a road w/ the correct therapy & so on!!! Is she seen at a Childrens Hospital or just thru a pediatrician? I hope u can get some answers soon for both your sakes! Please keep us informed On Miss Madilynn



Dani

User - posted on 01/30/2009

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I hope and pray that the doctors can be inspired to giving you a diagnose so you can be at peace knowing wht it is and how it can be treated.  I know that you as a mother can be inspired too and go the direction you need to for your precios baby.  I hope everything goes well for you and your baby.  Prayers work, they are a way to ask and to receive answers form a loving Father who is always mindful of His children.  You might want to ask for a blessing from a preisthood holder who holds the authority of God on this earth and the baby will definately bennefit from one as well.  Take care

Pauline - posted on 01/30/2009

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You might want to see if she has a chromosme (probably not spelled right) abnormality. Tell your doctor that you want her tested.

Sheree - posted on 01/30/2009

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christel, i am sorry to hear about ur daugther. i wish i could give u some answers i really do bc i know its hard and u just want ur daugther to not hurt anymore. i have a daugther thats the same madilynn age she was born on sep.4. i will pray for madilynn and for you. if you ever want to talk email me or add me as a friend ... keep in touch grl!!



sheree

[deleted account]

Quoting Paulette:



Hi Christel, Madilynn is beautiful! Love the outfit! But I do not know what diagnosis would fit her. Here is a website where you can input her symptoms and do research I hope it helps: www.webmd.com. I have used this site a lot and love it. I have a child who went through open heart surgery at 8 months, so I understand all the anxiety, stress and tiredness. It is important for your health and well-being to take care of yourself. She can sense your moods and exhaustion, babies are pretty sensitive like that. Now is the time to call in the family to give you breaks, you and your husband. This is when family and friends would or should gladly chip in. It is not selfish to ask. We all need help sometime and now is a critical time. All of you need support! I would look into a neurologist and any specialist that seem to fit with her case. I would keep going till you get absolutely all of the answers. Keep us posted please! You, Madilynn and you Husband are in my prayers. Take care. =0)






I like webmd too, but be careful with it - sometimes it will give you answers that are impossible or will scare the crap out of you.  (My niece was bleeding badly and she knew it wasn't just her normal period.  WebMD told her she was having a miscarriage - she was a virgin.  She was scared cuz she thought she was losing her uterus or something.  Turned out, because she'd had irregular periods since the beginning, that her body was finally beginning to catch up and was flushing everything out.)



Does your little one have a mishapen head?  Protruding forehead?  Very visible, protruding veins especially on the head?  What you described reminds me so much of a show I saw recently on tv called "Mystery Diagnosis" (Mystery Diagnosis actually has a Facebook page).  They profiled a 5-month old girl who would not stop crying.  The parents were told it was just colic.  Turns out she had a very rare bone marrow disease.  Her antibodies were not removing old bone before building up new bone and the poor baby's nerves were getting squished.  The name of the episode was "The Baby Who Wouldn't Stop Crying" - or something to that effect.



Even if your baby doesn't have those few symptoms I mentioned, maybe talk to your doctor about testing the bone marrow and other tests for rare diseases and disorders.  I really don't want to scare you, but I have a feeling you're already pretty scared.  I know the feeling.  When I was 20 weeks pregnant the doctor saw a mass on my baby's lung.  Luckily for me, everything turned out fine, but that fear was overwhelming.



I'm praying for you.  Keep us all updated.

Hannah - posted on 01/30/2009

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Cristel,



 



You have a very beautiful daughter despite the huge challenges that she is facing.  Like most of the responses, I can't answer your question about what's causing Madilynn's problems but I would urge you to keep pushing the doctors to investigate it further and look at all possible causes, even the rare ones.  My son was poorly at 13 weeks old, initially being diagnosed with Bronchiolitis, and spent 10 days in hospital being tube fed because he wouldn't eat.  Although it was a minor illness compared to what you are experiencing, I knew that my son was not right and felt that the diagnosis they had given was not the whole problem.  Adam struggled for 8 days before being given antibiotics at my insistance.  When he got them he picked up within 24 hours.  I know that helping your daughter probably won't be this easy but you know her best and the doctors don't alwaysget it right or push enough to seek answers.  Although they do care, your daughter is just one of many patients to them but to you she is everything so keep on at them all the time until they get fed-up of you if necessary! 
I wish you all the luck in the world and hope that you get some answers soon.  Please post an update to let us know how things are going. 



 

Elexis - posted on 01/30/2009

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Have they checked for CP? Did her apgar show that she didn't pink up right away? Not likeing touch sounds like a sensory issue. I think the doctors sre telling u that they don't have an diagnosis w/ a NAME  for u. Which I reaize is probably what u r looking for so that u might find a cure or a way to treat the problem.  Unfortunately, many children just have brain abnormalities...w/ no real names or syndromes to attatch to it. It would b nice to know what areas of her brain have the abnormalities!! That way u could know what to expect as far as speech, memory...even how her body maintains it's own temperature. I would ask for a CAT or PET scan, and then ask what parts of her brain are abnormal and what do those parts that ARE abnormal control in her body. That was u can have an idea of what to expect for the future. It doesn't sound like she has a life threatening problem. Once u get those findings u vcan begin work w/ an Occupational Therepist who will work with Madilynn to make the most of what works and start some synaptic firings for centers affected by this abnormality. Baby brains r amazing things!!!  Early intervention can make all the difference in the world! All the best to you and I hope u get some better answers from these doctors! B strong and tell them u r not leaving the office until they do what needs to b done to give your family some answers of how to make the best of this diagnosis...try going to a Children's Hospital! The Ronald McDonald House will put your family in a temp residence if need b while they do testings!!!

Denise - posted on 01/30/2009

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Christel, not sure if you have found an answer to you question. I feel for you, I know how hard it must be. Have your doctors looked into INFANTILE TEMOR SYNDROME? Some symptoms are: Tremors (of course), pallor, skin pigmentation, regression of milestones, and subnormal development. Don't let the doctors bulley you, you may want to seek some advise from a specialist in Neonatal Medicine or Pediactric Medicine, rather than your typical doctors.



Also, children's development varies, seems your little angle has had some rough ground. I know it is hard, but try not to compare, each child developes when there ready.... I have an 8wk premie.... He is now 20 months, and falls short in all aspects of where a 20 month old should be.



I hope this helps, will be thinking of you and your family

Hannah - posted on 01/30/2009

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i'm sorry i cant tell you what is going on with your beautiful daughter, i just wanted you to know im thinking of you.

Teresa - posted on 01/30/2009

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Christel,



I am not a specialist by any means, only a mom. I did read however that your daughter had a hard time holding things and cannot hold her head up. I had a friend whose daughter experienced a rare case of MS (Muscular Atrophy) I believe the name of this condition is Spinal Muscular Atrophy, I know it is related to MS (muscular distrophy). It typically affects children and the most severe cases are endured by infants. Please seek the help of a neurologits specialized in children and inquire about this specific condition.



I just googled an organization called Families of Spinal Muscular Atrophy (FMSA) I have included this link for your review. Hope it helps.

http://www.fsma.org/



Blessings for you and your little one!

Nova - posted on 01/30/2009

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My daughter did not hit her milestones either. I took her to the dr. had the eeg's mri's and blood work. I took her to a neurologist and they gave me the diagnosis of cerebral palsy. It can range in differnent forms. Either they have high muscle tone or low, and my daughter has both. She had problems sleeping too. Does she favor one side more than the other? It might be a mild to moderate form of cp. My daughters MRI'a came back normal too. You might ask your dr to refer you to a specialist at the childrens hospital. They can do wonders. Get her physical therapy and speech therepy now. They are never to young to start. Get on your doctors butt though to get it done seems like they don't want to "deal" with ppl because its not thier kids..You are your kids advocate..Keep me posted though..Good Luck. and it does get better. You will adapt.

Asha - posted on 01/30/2009

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Christel, I did some temp work for community nurses last year and there was a baby who was diagnosed at around 4 months with a muscle wasting disease - sorry I am sitting here wracking my brains trying to remember what it was called - I think it was shortened to TMA or TIA something like that. Anyway, I remember more about the ssymptoms than the name: baby starts off pretty normal, smiling, cooing, reaching out to toys then around 3-4 months they start to deterioriate. Lose motor function, stop interacting, stop smiling. The saddest thing is they are still in there, they can see you and hear you talking to them but cannot respond (this is progressive) - they usually die by 1 year. This little baby died around 8 months of age. I'm sorry to tell you this, I know your little one doesn't sound exactly like this so it might not be the same disease, however, I'm thinking same ball-park - maybe some other type of wasting disease. I will keep you all in my prayers.

Lori - posted on 01/30/2009

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 Hi Christle,



 I am not writing because I have an answer, but I am writing because I am letting you know that I will be praying for this situation. All things are possible through Christ Jesus.. He is the great Phsycian!! I have a group called prophetic intercessors you might want to find it and give me a little background, like the bays name to pray for her, your doctors name so we can pray that God will give him the wisdom and knowledge to find a resolution to this situation, and for you also so that God will show you how you can comfort her and give peace through out this time. I just really felt your pain in your heart for your baby, and I was prompted to reach out to you, if for nothing else a prayer warrior on your behalf.. I don't know your beleifs, and I am not assuming them either, I just ask that you give Our Lord and Savior a chance, and allow me to believe with you for a resolution to this crisis. Let me know if there is anything I can do, I will run this by my Doctor just to see if he may have any suggestions. I am going to start praying right away, but I will be abke to pray in more detail as soon as I have more info.. Stay strong and encouraged in the Lord... LoriQuoting Christel:

Please I need help. Anyone someone might no what is wrong with my baby.

All I'm asking for is for you to read this. if anyone can help please I need it.

I have a 4month 1 week old baby girl. The doctors have no clue on what is wrong with her. I need any help I can get out there. She was born with low tone in the arms, tremors. Her tremors are what’s waking her. Her body shakes, mainly her arms, its a little vocal too. She had her first tear the day after she was born. It seems as though she is in pain all day long. She has a g-button. She fights you often, (arches her body). Does not like to be held, or touched. Her hands she hates anyone touching. And trying to comfort her is never been there. Her sleep is the hardest. She has never really slept a whole lot, and now we are talking maybe 6-8 hours or less a day. I'm not a hundred % sure how much during the night she gets. If I'm lucky I might get her down for an hour or two. Her whites of her eyes have always been a grey color. She was Jaundices when she was born. She had fluid around the brain.
I had a perfect Pregnancy. I had a little kankles, and acid tummy, maybe a headache once in a while. I never got sick or vomited or cried or anything, I got fat. So I have to say it was perfect.
Delivery was a hard. All planned to have her 9/13/08. They gave me a pill 6am, nothing happened tell 12 noon sharp.. Water broke, and then it was hard labor for 6 hours. I was off the page with pain and how fast and how many were coming. After 6 hours I got the Epidural and it was heaven. I couldn't feel a thing. About 2am they decided to get me off my happy drug and I pushed for 2 hours after that. Not to be to Graphic but I tore so bad it took them 45 min. to sew me back up.
So All in all she has had MRI's EEG's, Ultra sounds, tons of blood work and I think there was a cat scan too. All in all we still have no answers.
If anyone has any ideas, please let me no, I don't no how much time we have or if it's going to get worse.
At 4 months 1week, she can't hold her head, she does not grab toys, I don't think she can see all that well. All the mile stones that she should have already past she has not.

Your friend Christel
Madilynns mommy!

P.S. the doctors have called it a Brain abnormality, or Encephalopathy. Do to the three EEGs she had one of the eeg's came back with a slight pause of the brain.





 

Kim - posted on 01/30/2009

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Have you had her genes tested. She may have something that they can detect from a faulty gene

Angie - posted on 01/30/2009

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Glad to see that you got an EEG and scheduled to get a MRA/MRI.  This will be very helpful.  I am an Peds ICU nurse and see children with neuroogicla problems frequently.  Unfortunately many times even with a diagnosis the treatment stays the same.  Supportive care like keeping her seizure free and pain free.  I am glad that she is on medications for the seizures, all seizure meds will make kids sleepy.  It may take a while to get on the right cocktail of meds that allow her to be awake and seizure free as well as sleep.                          I do recommend that you get involved with some kind of early intervention.  The earlier you start the better.  Children are very adaptive and if you get started early the higher functioning she will be.          Good luck, and keep us posted. 

Becky - posted on 01/30/2009

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I saw a story similar to this on Mystery Diagnosis on Discovery Health Channel. I looked up the different diseases on the show and ran across Wilson's Disease. The symptoms are: ataxia (lack of coordination), jaundice (yellow eyes and skin due to liver involvement), kidney problems, loss of appetite, tremors and weakness (general discomfort), and there are more that will show up later in life. Talk to your doctor about this disease! I hope that your little girl is okay, and I'll be praying for you!

Grace - posted on 01/30/2009

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Hi Christel I am sorry to hear about your daughter's difficulties. Has your doctor suggested seeing a geneticist? Our son was not meeting milestones by 4 months and did not seem to be able to see, was very floppy, suffered from head drop seizures and at 9 months of age had his first MRI and EEG. He was diagnosed with a rare genetic disorder called Congenital Disorders of Glycosylation (CDG for short). I know this my not be what your little girl is suffering with but it may be worth it to see a genetics specialist.



Good luck

Grace

Lisa - posted on 01/30/2009

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well, first off as  a mom with the same age daughter can feel ur fear and conerns, yet as a nurse i am telling you that u need to send her to a Pediatric Neurologist as well as an opthamologist. Some neurologically is up... her sense of touch the way it is so sensitive and her vision... as well as the "greyness" i her eyes. Definately find a pediatric neurologist. Madilynn is in mine and my daughter Isabella's prayers!

Elizabeth - posted on 01/30/2009

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has your daughter been tested for niemann pick a?  it's a very very rare disease and my cousins daughter had it and it sounds like your daughter has alot of the symptoms.  it's not a nice disease by any means and if it is what she has she needs many rounds of various treatments.  i'm not trying to scare you by any means but i would definetly have her tested.  i wish you the best of luck and i hope that you find out what is going on with her!!  she's is gorgeous. hang in there please keep us posted.



lizzy

Christel - posted on 01/30/2009

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I wish I could help in some way. I will be praying for you. My labor (with my first son) was very similar to yours--30 hours of labor and 2 pushing--but my son is good. I agree with other posters. Please, do not give up, stay on the doctors. If your doctor isn't helping get a new one. Do some research online. As a mother, sometimes we are our children's only advocate. A lot of times, doctors (males especially) claim that mothers are overreacting and that its all in our heads. We know when something's wrong. Stick with it and find the reason. Your daughter is beautiful, by the way. God bless!! Hang in there! Love, Christel.

[deleted account]

Christie i feel for you and your family and hope you soon fin dout what is going on. Definatly continue lookign for answers and keep bugging the doctors for more test and also for referals to specialists. If you can get her in to Sick kids or john hopkins they are 2 of the best hospitals for children. I'm definatly not an expert but having worked in health care i would look into the continual brian activity (is there sezizure disorder) and with the fluid on the brain at birth, this can reocure and the pressure could be causign some of the pain look into that and see if a shunt is required to relive pressure. And remember to get help so you have time for you to keep yourself strong and healthy. Sorry i cant offer any better answers then that, hope you find your answers soon, Stay srong and keep fighting for your daughter.  My thought and prayers are with you and your family.

Ann - posted on 01/30/2009

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i wish i could help you, but i do no what your going the not knowing although ur lil girls is different to the problems i am having with my lil boy  the lack of help and major frustrastion is the same stay strong and keep each day as it comes i wish u and your family the very best for thr future keep ur chin up x

Tracey - posted on 01/30/2009

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hi i am really sorry to read about the problems you are having, it does sound like a nuerological disorder,have you looked into autism, alot of the problems you are discribing sound similiar.

April - posted on 01/30/2009

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I think you need to find a Doc that can help do some research online you may need to travel out of state to get the help she needs where I live we have this wonderful hospital called Dartmouth Hitchcock (DHMC) you might want to just try to give them a call they may be able to help you I am not sure where you are from but this place is in New Hampshire here is the number (603)650-5000 they help people all over the world! and they have the Best child unit there called CHAD they help save my sons life!!! with out them my son would not be here today!!! but please call them cause the might know a place that can help you feel free to contact me at pril248@gmail.com or on facebook and God bless and good luck!

Fontea - posted on 01/30/2009

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Dearest christel beautiful baby . l like many others have no answer but will also pray for your baby and you all. Good luck and God Bless . love fontea

Kristine - posted on 01/30/2009

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HI Christie, My 2 year old after 10 months of fighting with doctors telling me there was nothing wrong we found a 4cm brain tumor in her head. long story short alot of nerves got damaged during surgery and she has some simular symptoms, does not like being touched on her right side (which was the side affected from surgery) clothing irritates her and so on. look into nerve damage or disorders I think this will get you closer to the answer. Never give up some of the doctors we where seening had me believeing at one stage that in was all in my head and that I was seeking attention. So never give up because every doctor you see is one step closer to the one that could solve all your problems and in my case her life. Good luck and my familys thoughts are with you.

Janelle - posted on 01/29/2009

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Oh my dear Christel....I recently watched a program called "Doctors" have you heard of it? There was a baby with the same like symptoms on the program. It turned out to be a nerve disorder of some type which actually turned the whites of her eyes blue. It took them several months to diagnose but once done it was determined that the little baby was suffering from nerve pain. Please research online to see what you can find and go to the pediatrician with this info. I wish you all of the lick in the world and will pray for your little one and your family. goodluck!

Suzie - posted on 01/29/2009

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I just want to send you a hug!!! I have no idea what it could be, it makes me so sad to hear of little ones that are sick.:( She is a beautiful little girl though, and you are blessed to have her. Try not to stress too much, I know that it is almost impossible. Just enjoy her and love her to bits. Hope that all goes well, and you get the answers that you need. Hugs.

Pati - posted on 01/29/2009

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Christel  and Madilynn, thoughts and prayers to you.



My first thought is I just watched a news report on something like this, well maybe. The condition the little boy had was called chiari malformation. The little boys name was Rhett Lamb and Im not sure if is the same, but I would say do not give up on finding out what is causing this in her so they can correct it. Keep pushing the drs and checking web sites and anything you can do to research these symptoms. Someone has to have an answer for her.



God Bless you all



Pati

User - posted on 01/29/2009

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what an expriance , follow your gut feelings they will lead you in the right direction, trust your self, good luck tmy thoughts are with you

carolynexxooxx

Luana - posted on 01/29/2009

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Hi Christel,  WOW you have had it pretty hard so far haven't you. I'm sorry that i have nothing that I can tell you to help but just know that you and your little girl will be in my prayers and I hope you find a solution. Just one thing I wanted to ask you "is there any previous history of this sort of thing in your or your partners families?" Maybe if you ask around your family you might gt one step closer to finding an answer. Have you tried looking on the internet? You should post this with a few more details on some of the other sites like yahoo and stuff. Try to get it posted in one of the university bulletins or something somebody might research it for you?? Good luck. Luana

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