CMV Child - What Struggles Does Your Child Have?

Calley - posted on 04/27/2009 ( 29 moms have responded )

71

50

18

I am hoping to hear from other moms about the struggles and joys they have with raising a child with CMV. I often feel alone as I look around to find something in common with other parents. I am hopeful to talk to some of you about what we have in common.



I find it amazing that Congenital CMV is one of the most common congenital infections, yet so many of us had never heard of it before our child was diagnosed. Long after it was too late to try to prevent it. My daughter received a six week dose of Gancyclovir to kill off the virus while in the NICU.



My daughter Evie is so incredibly happy. She giggles all the time, finds just about everything funny. She has such a sweet personality. She is nearly 18 months old and is slowly learning to do things. Lately she has seemed to be more interested in exploring the limited world around her.



The AEA thinks she is about 10 + months behind in development. We appreciate having that knowledge, it seems to help other people understand why she looks and acts like a baby still. She is proving to us though that we are on HER schedule, on HER time, and that she will do WHAT she wants, WHEN she wants.



She is holding her head and trunk more upright lately and learning to self adjust, keeping herself up and not just falling over. She can roll from both directions and can scoot on her back to where she wants to go.



Evie struggled with hypertonicity when she first came home, and sometimes now, but it is less frequent. She now has to fight Low Muscle tone.



She has struggled with gaining weight since she was choking on baby food for awhile. That is getting better with practice, but she doesn't eat very much through the day, she is now on High Calorie formula and food. She can feed herself with a bottle.



Evie has profound bilateral hearing loss. She has a Cochlear Implant on her right ear and a hearing aid on the left. She pulls them both off all the time. We are signing to her and talking to her. We want her to learn from every way she can. She signs "more" and seems to understand it when spoken. She says, "mamamamama" and usually just to me or when she wants me. No other spoken or signed language though.



Her eyesight is good so far, but she doesn't always track things with her eyes together. She actually prefers to not look at things when she is hearing and touching it at the same time. Too much stimuli?



Evie receives PT, OT, and Speech Pathology thru a local Rehab center. She has AEA come in for OT and Hearing Impaired lessons. She has a Neurologist and an Audiologist, and tired parents.



Please respond to this to let me know what your child is going through.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

29 Comments

View replies by

Maria - posted on 06/26/2013

2

0

0

My son is about to turn twelve years old ,my son was a premature baby I had him at 26 weeks and he only weight 2 pounds and 2 ounces I went throught a lot when he was in the hospital he was intubated for seven months, had several surgeries from his eyes intestines and he was on the hospital for ten months and when I finally had to take him home I took him with oxygen and feeding tube now my son is going to be twelve and doesn't need oxygen or feeding tube his just a little delay, now my concern is that all this time I thought that his delay or problems he had was because he was premature and I been reading allthis stuff about cmv that I'm scare for my son future because yes I forgot to mention that I gave cmv to my son when he was born, does any one know if he can still get complications when he gets older?

Gili's - posted on 08/25/2012

2

0

0

My 2.5 yr old is probably around 10 months developmentally. You can read what we're going through on cmvgirl.blogspot.com.

Gina - posted on 08/01/2012

1

0

0

My name is Gina and my baby is 6 weeks old we were just able
To come home after weeks of tests pokes Iv's and spinal taps it was a rough patch but we got through it god bless you

[deleted account]

Hello everyone. i am a single mom and my daughter is one with cmv. i havent been able to connect online to find support till now.. im so so in the dark. i have so many questions and .. well im glad im here now. thanks yall so uch for your stories ill be posting one sometime in the near future.

Yesi - posted on 12/22/2011

1

0

0

hello, it feels good to find mothers that are going through the same thing that iam going through.

my son is 1year old nd he was born with cmv. it was hard for me at the beginig but i managed to get through this with the help of my wonderfull husband nd family.. i would just like some one to talk to nd see what kind of things yall can recomend me .

Jill - posted on 12/11/2011

1

8

0

Calley!! I am so happy I stumbled across your post! Everything you wrote is exactly how my son is! He was also born with congenital CMV. He was actually misdiagnosed with a white matter disease and we were told he had a couple months to live, now they discovered they were wrong and it was the cmv that has caused his issues.
Our son has had the ARB hearing test twice with zero success and they are talking about a cochlear implant, Im glad to hear that its working for you. We have just signed up for a signing class.
My son is turning 1 next week and he is only 13 pounds, so quite small, was this similar for you?
I see you wrote this awhile ago, how is your daughter doing now? I would LOVE to hear an update. We dont know anyone one else who has gone through or is going through this. My son is actually a twin and he is the only one that was affected by the CMV.
He has horrible tone, and we do stretches through the day to help with that. He is just starting holding his head better, but cannot sit on his own, still very much infant like. He just started baby food and seems to like it in small doses. He doesnt has poor cordination and struggles to grab/hold objects. He has poor vision in one eye and the other is OK. He sees well out of the one. They say he is around the 3-4month mark for milestones, which is great to see him making progress!
I would love to hear from anyone who is going through the same thing and hear how/what you are doing :)

Genette - posted on 10/11/2011

1

0

0

Hello everyone! I am a new mother of a Congenital CMV baby. My daughter Allyson was born last month (09/07/2011). Right when I knew I was pregnant I got really sick. I was thinking it was flu, but when I went to the emergency room they told me I had sinus infection. After that everything went normal until I turned 16 weeks of pregnancy. One of the ultrasoud showed Echogenic Bowel and after a few more test they confirmed CMV was present in my blood and also in the amnio fluid. I did not have any idea of what CMV means. when I started searching online and also the genetic counselor explain to me about it, I was devastated. On the following ultrasounds they noticed that my baby's head size was small and they started monitoring the pregnancy closely to make sure she was growing properly. After that, the rest of my pregnancy was full of emotions and appointments.
At 39 weeks the doctor decided to induce my labor. I gave normal birth to my 5 pounds 8 oz. daughter. The pediatrician was there, ready to take my baby to NICU but once she did the evaluation, she said It was not necessary, because even though Allyson had low birth weight and small head (the father has small head too, the doctor said!!), everything else seems normal.
When we had the first baby's appointment, the doctor suggested early intervention just to make sure Allyson is developing well and of course I went for it. Last week, a worker from the program came to evaluate Allyson and she was surprised of how she is doing. She responded to voices and sounds and her motor skills are good. Finally early intervention closed they case for now, but told me to call if I see any change on her.
I know so far I am lucky, but at the same time I also know CMV can be progresive and I am afraid that my baby's life can change any moment due to this terrible disease.
I would like to hear more from your experience because I am 28 years old and being Allyson my first baby I dont know what to expect and honestly I feel so scare and overwhelmed.

Calley - posted on 07/24/2011

71

50

18

rhonda... i will write you a message on here and try to hook you up with a group called CMV mommies on FB. there are soooo many CMV mom/warriors on there that can give you answers!

Rhonda - posted on 07/18/2011

1

2

0

Hi, I would like to ask any of the moms about my situation. On June 6 of this year I met a little boy who I later learned had CMV. He was a friends nephew and I knew that there were some problems with him when he was born but nothing too in depth. The mother has lost all rights and the father regained custody of him when he was about 15 months old. After helping out the friend in watching him while she did "whatever" I noticed he couldnt eat any solid food and after I questioned her and the father thye said that all he had been eating was 3 bottles of Pediasure. Which I tried to explain was a supplement not a meal, anyway the father and the mother had another child and he was 3 months at the time and was in foster care until the father could provide support and housing for him. But the 3 month old didn't get CMV. The 1st day I took this baby who is 2 I feel in love with him, we all did. I have 2 other children at home 15 and 16 and a boy in college and they adored him from the beginning. The fist day I took him I gave him a bath because he was filthy, they have no hot water and no stove and by the way he acted in the tub I dont thin he had taken too many of them. In June in didnt even hold his head up all the time, he would for like 20 minutes and then it would plop down, he can't walk and he can't talk and over the next couple of weeks I finally was told waht was wrong with him. He has pt 2 times a week which I drop him off at the house where his father is and pick him up a hour later. I researched the disease and found out as much as I could. He's has limited hearing in both ears and I finally was able to get his hearing aids from his father. 3 weeks after taking him DCYF let him have the baby and ever since then he doesnt even call about his other son. I know you might be thinking why didnt I try and contact someone, I DID and nothing happened, nothing. I have gone a little farther and contacted different people and I am waiting for any sign of help. The father has neglected to take him to 6 appointments in the past 2 weeks that I know of and has stopped all pt from coming to the house. The doctor at his last visit said he thought his hip was displaced and he wouldnt take him for a x-ray. Now he has gained 6 pounds so far, I started on baby food and I am trying on getting him off the bottle completely, he now eats gerber toddler meals or macaroni and cheese, he hasnt been able to eat any meat or chicken because he gags and vomits which is part of what he has. But something that has really been bothering me and I told the father is that he twitches alot like his muscles just go crazy which he cant control. He has been doing it more and more. I actually recorded him doing it and I'm worried! Does anone else here notice anything like that? he needs to see the neuro doctor and he needs new ear molds but I am not able to take him obviously! It makes me sick that this little boy who is so good and laughs so much has slipped thru the cracks of the system. I am meeting with someone today and hopefully they will help him.

Rosette - posted on 11/07/2009

10

32

1

Yes New Zealand, very cool, just wondering because some of your abbreviations etc didnt match ours here although i know what you meant hehehe

Calley - posted on 11/06/2009

71

50

18

I'm from Iowa, USA, are you in New Zealand, is that what NZ is? Isn't the internet cool!

Rosette - posted on 10/31/2009

10

32

1

Thanks Calley, all you say makes sense as i see it in varying degrees in Sapphire. Yes she has physio therapist, speech therapist (feeding) regularly, i find the physio really interesting and it helps her a lot. Feeding solids was the same as Evie she would gag on anything but the bottle but now she is eating puree much better, so we are really pleased with her progress there. She is not holding herself up sitting yet but she is getting stronger so i dont think it will be too far away. She had a hearing test when she was maybe a few weeks old and she is due for her next one in a month or so, she is in a program for that so they will be keeping an eye on her closely as she grows.

Where are you from Calley?? I am in NZ

Calley - posted on 10/28/2009

71

50

18

Rosette, are you guys receiving any help from your local AEA group or some type of early intervention group through the schools? If not, you should look into getting some support from them. They can provide specialists and therapists that will come into your home for visits, free of charge. Evie has an Occupational Therapist that comes to our house through the AEA, as well as others. She goes to appointments weekly for OT, PT and speech (feeding). The speech pathologist works with her to help her muscle tone in her mouth and to encourage her to eat more varieties as well as textures. she used to gag on everything but her bottle. (and even then she wasn't eating much from the bottle.) Now she eats pureed food better and the S.P. also found that she had reflux. she's now on a high calorie formula to make sure that what she is eating is really really good for her.



I don't know anything about BH4 deficiency, but if your doctors knew she had CMV at birth and decided not to treat her, than I'm sure they did so because it wasn't neccessary. Evie had enough symptoms at birth that they saw fit to do the treatment, and we consented to it.



I hope that I've not caused you to worry. There are so many cases where the CMV was not severe and did very little, if anything long term, to the babies.



From our experiences with Evie, we've learned that her low muscle tone keeps her from naturally doing what an average child would do without ever thinking about it. Instead of learning to crawl because they want to get to their toy or go where their sibling is, she has to be taught, over and over and over again that crawling is the way to reach the toy she flung out of reach. It takes a lot of work for Evie to learn little things that seem simple to most because her muscles just don't know how to make the movements.



I'm not sure if that makes sense now that I've written it. Hopefully you get what I'm trying to say.



Just keep playing with her, sitting with her and doing all the natural things parents do with their beautiful babies. All of these things will push her to use those muscles. Continue to challenge her and have her sit up correctly with your support. Over time, those muscles with strengthen and she'll figure out she can do it without you. Is she "prop" sitting, (using her hands to keep her upright either on her lap or the floor)?



Sometimes I think about Evie's physical therapy as workouts. We have to train our muscles to be ready for a marathon or a sport. So it makes sense that their little muscles need training on how to play and sit up and crawl and walk, etc... only it takes them longer with low muscle tone because the muscles aren't ready to do the work.



Has Sapphire had any further hearing tests? If not, it would be good to push that the doctors, or audiologists follow up with her periodically and watch her hearing over the next couple of years as a precaution. Those first 4-5 years of life are the important ones for aqcuiring language. Hopefully she never has any issues with her hearing. :)



Good luck, and keep us updated!

Calley

Rosette - posted on 10/28/2009

10

32

1

Hi and thanks, Sapphire has BH4 deficiency, which is a metabolic disorder and also neurotransmittor disorder aswell. What do you mean by feeding issues as we have been struggling to get her to drink her bottles in the morning and sometimes evening. I am now very worried as she was never given anything as a treatment for cmv as she was thoroughly checked out at birth and all seemed to be fine apart from small size, i think the virus seemed to mostly attack the placenta. She doesnt seem to have any hearing issues as she responds to noise etc well and babbles away alot.

Initally she was very hypertonic until she started being treated for the BH4 deficiency, she still has some remnants of it now but is not as bad, but she seems to lack some muscle tone in her core in regards to sitting up etc as she cant do that yet.

I would be interested to know of any exercises that help these babies develop muscle tone.

Ta

Rosette

Calley - posted on 10/26/2009

71

50

18

My daughter Evie, and many others that I know of, were Born with severe-profound hearing loss due to the CMV. I'm sure you've done lots of research to figure out what is going on with Sapphire, but CMV is a progressively damaging virus. We were told and researched that CMV, especially if untreated with Gancyclovir or something similar, could cause a progressive loss in eyesight and hearing and many children developed more problems cognitively. Evie's little friend Ava actually lost more hearing in one ear with time, even after being treated with Gancyclovir.



This is not to say that all cases are this way, but before they had a treatment for CMV, most cases developed into further nuerological issues.



As far as my limited understanding of CMV and the families we know with CMV children, most have had muscle tone problems and reflux or feeding issues. Certainly hearing loss is a common link as well.



Evie's hypertonicity and extension used to be sooooo bad. I felt like I was being abusive trying to get her to curl up in a ball or fetal position to hold her. It took a while, but that is gone now, and though she can get very stiff at times, she is struggling now against the low muscle tone. She has started to scooch crawl though lately and we couldn't be more excited!!! She is going to figure this out and really take off one day!



What rare disorder does Sapphire have? I would love to learn more about her. Thank you for posting and sharing. Hope we can all be of some help.

Rosette - posted on 10/23/2009

10

32

1

This is really interesting. My daughter Sapphire is 8 months old and has a very rare disorder, we attributed this to some of the symptoms described here, she was also diagnosed with cmv but doesnt seem to have hearing or vision problems but has extension problems and muscle tone, she also is having reflux/indigestion troubles too. I was wondering if those with hearing loss were like that at birth or if it happened later?

Rosette

Sybilla - posted on 09/21/2009

8

11

0

Audrey had similar hyper tone in her back so we were put on the physical therapy since she was 3months old. It was about one year of daily exercises (about 5 times per day, usually when changing the diapers) which helped in her development. She walk at the moment, even jump. I heard that in "western" countries the method we use is not known, it's called Vojta method. I found out it helps in muscle stimulation in many neuromuscular disorders including SMA.



We mostly struggle with virus illnesses. My daughter is sick nearly twice a month. We try to treat her only with homeopatic and takle early car of any symptoms...The problem is I am sick also very often like her. I start to think of having really bad luck or something more serius somwhere there... For about half a year Audrey has problems with indigestions and has thromboleucopenia and she's got anemia. We ar getting crazy because since she doesn't loose weight and smiles every doctor says she's healthy...

Calley - posted on 08/28/2009

71

50

18

I've heard that anyone who's ever had CMV, including us mommies, could end up with a return of CMV if their immune system was really low, ie AIDS, or HIV or cancer and so on. Because CMV is in the herpes familiy it remains in your system, dormant. It could reoccur, but only if you're really ill, I think.



Is Audie walking? How old is she now? Evie is 22 months old, she had low muscle tone in her core muscles from the beginning, and hyper tone in her back (causing extension) She is getting better all around now! It's exciting! It will just take time.

Sybilla - posted on 08/28/2009

8

11

0

Thanks Calley for your warm words. The truth is that insensitive woman (neurologist)showed me by a very cruel way that something is very wrong.

Audie probably haven't got any hearing problems but we had problems with liquid in one (left ear). It was overflowing her ear very quickly and we neede to clean it by a doctor every month until Audi was one year. Now we use special droplets every week.



Thysical therapy is something that saved my daughter.We also keep in touch with our therapist, he is a very good person. When did low tone muscle come to you? I am scared that something waits just around the corner...She still has one leg stiff but we they say it's not neurology but orthopedy now. And there's a problem to get to the rehab for such small kids. So we want her to start kind of rhytmic gymnastics (just for fun). She won't be able to do that, but will have fun and strech a little bit and keep fit...hopefully.

Have any of you heard about remission of CMV taht look similary to mononucleosis or severe flu?

Calley - posted on 08/28/2009

71

50

18

Sybilla, thank you for sharing Audie's story with us. I am so sorry to hear that you have all had such a difficult time. It sounds like you have been a great advocate for her! Keep working hard for her, and always remember to take time for yourself. It is amazing to realize that we are not alone, and that CMV is affecting people across the world.



Does Audrey have any hearing problems? From all of the information I've gathered about CMV, the common symptoms include, neurological damage, Hearing Impairment and possible blindness. My friend's daughter had the same red bumps at birth as well. Those too are symptomatic of CMV.



I'm so glad you went to other neurologists! That first one sounds Awful! She sounds like a very unkind and insensitive person. My baby girl, Evie, would stretch out backwards into a crescent shape as well. (hypertonicity, they called it) She was doing that inside of my belly as well! I could feel her stretching out and pressing her feet on one side and her head on the other. It was painful! We had a great physical therapist at the NICU that helped us swaddle her into a ball so she could work on neck and trunk control better. The hypertonicity has gone away with time and work. She was so hard to hold at first. Now she fights against low muscle tone and has one stiffer/weaker leg.



It is amazing what these little angels can accomplish with love and patience! Don't let anyone treat you or Audie badly like that neurologist! You deserve the best treatment out there, and you're doing a great job as a mom, don't forget that! God Bless!

Sybilla - posted on 08/26/2009

8

11

0

Sybilla mom to Audrey 30/08/07, we live in Central (Eastern) Europe Warsaw, Poland....

seems that my story may pour some hope in here. I knew that my daughter will have congenital CMV in the middle of pregnancy. Because I have PhD in molecular biology I knew exactly what it means and was preparing for the worst.

Half a year before getting pregnant we started to prepare with my husband with change of the lifestyle and of food of course. I haven't ever eaten better, organic stuff... I was active all pregnancy. Apart of University I work with schooll children...probably would skip this second job if I had an idea that wasn't resistant to CMV.So I made as much test as could during the pregnancy. We have checked my baby every month with USG and also made her heart checked one month before birth. All we knew that she was big. I ate all feed supplements I knew were working in humans or animals, whether I liked them to eat or not. I drunk fish oil and mixture of other vegetable oils daily and ate some algae like spirulina (awful....). At the beggining we were happy with big baby, but soon we were wondering if that's good.

Audrey was born 4 kg, 60 cm size of the average 3 month kid here, with terrible rash (she was red as a beetroot with some pimples). Even though they knew in hospital she is cCMV the doctors didn;t know the rash was because of it. They said I used improper baby wash liquid for her first clothes...They made her first USG of brain and found nothing. The hearing test (in Poland every baby while born have hearing test thanks to the national action of Jurek Owsiak) wasn't good and we needed to make it twice, but finally they said that she has some liquid in ears but it's ok. She had very long hepatitis (actually about 2 months) but the doctors said that when she eats and gains then she will be fine.

My primary education is Animal Science so...treated myself as a milking cow and was breastfeeding my baby until her 2nd birthday. I was feeding my daughter every 2 hours even when she slept. Even though I had ceasarian cut I went home on the 3rd day! (in Poland you are supposed to stay in the hospital with the newborn until baby starts gaining weight back again, and noone lets the mother go when the baby is loosing weight or have very high hepatitis). So we went home, but knew that will be back in 1,5 months in the specialised hospital called Center of Child's Health where they specialise in CMV treatment for whole Poland (our country is about 37 mln people).

So our first visit was terrible. I was sure that everything is fine with Audie apart of prelonging hepatitis and reflux. She also had stiff neck but nobody told us it's wrong. I was also wondering why my baby always turns in bed in the form of a crescent...But when Neurologist saw that she started to yell at me that I am the irresponsible mother and the baby is in a very bad state and will be disabled because of my incompetence and need very hard rehab. Then the lady came from the hospital rehab centre and showed me all the NDT Bobath tricks *I didn't know that playing and carrying my baby would make her less spastic. The CMV was starting to develop in immunology profile, and appeared in PCR test (genetic).too. Doctors said that before nothing happends (there are no bleedings and baby eats no fever nothing they can see) the won't give galciclovir. In Poland they claim that it makes children deaf because of side effects, and give it in the last moment 3 times per 3 weeks with month gap (or somthing similar). So I agreed that it's ok and we are coming after next 1,5 month, do the rehab at home and don't make any vaccinations (in Poland every child has free and obligatory vaccines for EBV and other important ilneses every three months).We had hired a lady that made the rehab and our little girl liked it but she had more and more reflux and also she kept her thumbs hidden (her fingers were violet)

When we came back and my daughter was 3 month old (was already smiling a lot then) I had the worst time there. Audrey had the HIGHEST ANTIBODIES score in the warn and I was heard that because of the baby "good" condition they won't give her galcyclovir. I was nearly mad. Had already read how CMV is treated in America (treatment practicly straight away when the baby have antybodies) I was planning to sell my dad's flat and go for the treatment there. Finally one of the doctors said and convinced me to stay one full week and make more test to compare how is my daughter fighting with the illnes herself. The thing is that it's tricky because 3 months oldes are developing their active immmunity and I knew that we are balancing on very thinedge because the protection from my milk might not hhave been enough. And the the Neurologist came. ANd this time she yelled so much that I didn't know where to hide. She said that my baby had no rehab (so what we had spent the money for????) and that she's much worse and her back muscle are starting being atrophic and that baby keeping fists with thums hidden after 2 months old means serious neurologic problems. To make it shortly I have met with 2 other neurologists who where checking my daughter and one said that my baby didn't neede any rehab (thanks got we had two other opinions). So we started hard time with Vojta method, but I thank God for this decision because this is why we made it. We had Rehab until she was 15 months when Neurologist claimed she's ok however still one leg liitle bit stiff.

Next time we came to the hospital (Audrey was 6 months) she started to roll over just in the hospital. We had already some problems with eyes, but I was gluying her lazy eye for 30 minutes few times per day ( I was born with nonseeing left eye and had contacted with my doctor who gave me first glasses in the age of 1 ) and doing rehab 3 to 5 times per day. We stayed another full week for all the tests and also for reflux test. From what I see it's typical for CMV and nobody said or knew that in my ward...

Audrey faught the virus infection herself (with probable little help from my antibodies too). Half a year later she was quite clean and we got permisiion to do the vaccinations. And here the another story begins.

I am sure that because of last vaccine my daughter go 2 weeks of fever (about 40 Centidegrees daily!) after which she got anemia and after anemia treatment now she had tromboleukopenia. It started in June and I am clearly scared of development of something new. Have read in an article that there are remissions of cCMV. The winter is coming and the flu and I am really scared especially Audie eats really a lot and such chidren shouldn't have blood problems...So this is how it's dealt in Central Eastern Europe...And nobody heard about CMV here too. Some gynecologists don't even want to make tests for that while pregnant saying that you shouldn't d tress....

Angela - posted on 08/22/2009

1

1

0

Angie- Mom to Chloe born 06/18/03:Symptomatic Congenital CMV, hepatitis, microencephaly, inter-cranial calcifications, Deaf (ASL), reflux CMV gastrointestinal disease (in remission). AFO's and diplegia CP, Autism.

Hi! My daughter Chloe is 6. We are always on the lookout for other CMV moms. Please check out stopcmv.com and the National cmv registry if you haven't already! Also feel free to friend me and I will pass our name along to the others mothers of CMV children. if you haven't joined there already. Make sure you sign the petiiton to the government on the stopcmv website while you are there. Also one of our CMV moms has published a book about her life with her daughter Elisabeth(angel now) called Anything but a dog dog.

Callie - posted on 07/29/2009

55

14

4

Hi Calley my name is Callie. I have a 7 month old son Andrew who was born with Congenital CMV. He was born 36 weeks because of severe complications I had during the pregnancy. The doctors knew right away there was something wrong because when the nurses started washing him a petechial rash appeared. Then they started coming in every five minutes it seemed with something new. He was jaundice, had cerebellar hypoplasia, two heart murmurs, and hearing loss in the left ear. I was devasted because they still had no clue.

A week after birth the CMV culture came back positive. Then my struggles began. I was forced with the decsion of doing ganciclovir which you know is 6 weeks in the hospital or becoming apart of a research study drug for valganciclovir which is 6 weeks of the actual drug and then 6 months of the "valganciclovir" or a placebo. I have a five year old and couldn't stand the thought of being away from him for 6 weeks because the hospital that could do the ganciclovir was 35 miles from home. So after much debate we went with the valganciclovir which is just the oral verision of what Evie had.

It has been a battle I am determined to win. He spent a week in the hospital before he was 2 months because of a virus. Since he was in the hospital all the doctors the Infectious Disease doctor wanted him to see went ahead and came and ran their test on him. He had an EEG done and an MRI. The MRI was the hardest blow of all. The neurologist told me that my son would never walk or talk. The MRI showed mass amounts of water where brain tissue should be and at least a dozen siscos(not sure on the spelling sorry) And one of the floor doctors actually had the nerve to tell me in front of interns my son was going to be retarded. Yes in those words! I looked at her and told her "I hope my son walks into this hospital at the age of 5 and tells you to kiss his retarded a$$"! The neurologist loved my attitude lol and said he hopes I am right.

He is for sure delayed. He can not hold up his head, which means he doesn't sit up or anything. He seriously today just grab a toy for the first time and we are in the hospital. He is babbling which I see as a good sign that he will one day talk. And he scoots on his back all the time.

Andrew and I are currently in the hospital after his first surgery tonight. He only weighs 11lbs. 4 oz and has severe reflex so we had a G.Button and Fundoplaction put in today. I am sitting here babbling to you because it is inspiring to read your experience with this. And like you I feel totally and completely alone. I don't know what God has in store for us but it's not been easy thus far. I am extremely glad to know there are other moms out there facing what I am facing and hopefully with the support of my family and now you guys I will find the strength within me to cope better than I have.

Kimarie - posted on 06/08/2009

2

20

0

Good Morning ladies, I just Joined was very excited that I found a site for us CMV moms. Man, do we need each other. Ok to start off I am Kim Mom to Giuliano 13 that was born with Cmv , he was born normal weight 6.15 right on his due date April 2nd. When he was born that is when they noticed something was not right, he was in NICU for 2 weeks before dignosed with Cmv. During that time he had to be on 100 oxgen and he also had about 10 blood tranfussions cause his platelet count was so low. Then after a rough 2 weeks he was able to come home and a nurse came to check his vitals once a day at first, then once a week for about a month. Giulio also have a sister that is 11 and a little brother 6.

When he is healthy Giulio is a social butterfly , he loves people! He laughs and plays. He cam army crawl and lift himself up. He can't walk or talk! But I love him just the way he is!


I look forward to chatting with you ladies, it would be very nice to learn off each other we need that!


Kim

Calley - posted on 05/05/2009

71

50

18

Sara, have you guys worked with a speech pathologist yet for Ava's feeding issues? We are working with one now once a week. She has mouth exercises that are used to desensitize her gums and palat and also to strengthen her mouth muscles including her tongue. The pathologist is working on offering her lots of food choices and textures and is able to tell HOW she swallows and is helping to teach her how to get better at it. It has helped Evie a lot! She used to gag on everything! We still have trouble with that on textured foods and anything gross, sometimes even the sweet stuff too. But after she gets passed the first few bites she gets better. She needed practice and still does. The low muscle tone seems to be affecting her feeding.

Also, Evie wasn't gaining weight so that's when we started seeing an nutritionist thru the AEA and also the Speech lady. Now we've got her on a high calorie formula that you get through a pharmacy. WIC is paying for it, otherwise it'd be like over $200 a month for her supply. YIKES! It is called Nutren Jr. w/Fiber and its Vanilla. Ask your doc. about it, it has already helped Evie gain a couple of lbs. She was at 17 lbs for over 3 months and then in one month she went up to just over 19 lbs. She is still at 19 now, but she was immediately more active once she started getting more calories.

Please check with your doc about these things, we've been amazed at Evie's progress with the help of both women. I can't imagine miss Ava having to have a G-tube or something some day because she won't eat right. That is so scary.

I am pumped to hear more about the CI process, do you have any dates set yet for evaluations and pre-op? We are going down in June to eval. Evie's left ear again to try to push for Medicaid to cover it as well. Apparantly someone was able to get them to with their kid and now they are paying for them I think. :)

Sara - posted on 05/03/2009

3

16

0

Hey Calley and Brandi! We've all talked before, but like you guys I would like to share my story too. My daughter, Ava is eighteen months old. She was born 6 weeks premature at 2lb 14oz and diagnosed with CMV. She spent just over 6 weeks in the NICU on Gancyclovir.


Ava is a very social and interactive little girl! She loves all eyes on her and is always interested in how things work. She likes to smile, laugh, and play with as many people as possible. The more people there are to watch her the more fun she has!


Ava is deaf in her left ear and has severe hearing loss in her right ear. She wears hearing aids on both ears and we are in the process of recieving a CI for her left one. AEA provides Ava with an OT, PT, Teacher of the Deaf and Hard of Hearing, and a Learning Teacher. Her main source for food comes from her bottle which we give her PediaSure. She refuses to eat food and this is our biggest concern at the moment. She is very small for her age-only 18 or 19lb. When she was younger she would gag on her food and throw up. Ava is getting better about licking foods, but she doens't really actually eat any of it. If anyone shares a similar story on their child not eating I would greatly appreciate their opinions. The specialists and doctor's have all told me that there isn't much research on this type of thing and no one seems to be able to help.


At 17 months old Ava was seen by a psychologist to determine where she was cognitively and in terms of Mental Retardation. On average she is about four months behind and therefore didn't meet the standards to be considered MR, which is a great boost of hope for us.


Crawling is Ava's main source for getting around. She can pull herself up, sometime stand up on her own, and walk around furniture. She has even started to take steps; however she is not walking quite yet!


Overall Ava is doing amazingly well for her diagnosis at birth. We are extremely proud of her and pray and hope that she will continue to do well. Please leave comments and reply to this about your children and the obstacles they may have and still do face and the accomplishments they have achieved!:) The support is appreciated very much.

Brandi - posted on 04/28/2009

10

7

2

hey calley haven't spoke to you in a while. You know some of my story but i will start over for those of you who don't. My daughter anna was not diagnosed until she was 6 months old by a blood test, mri, and ct. because she was 6 months before they got a dianoses she was to old for the gancyclovir. we kept saying something wasnt right but the doctors wouldnt listen until her head wasnt growing at 4 months. She was born deaf in her left ear but her right ear is normal. We just got her eyes checked again and she is a little near sided but they are holdin off on glasses right now. her neurologist told me she would never walk or talk. what u see is what you got. anna has proven him wrong on this and i believe she will continue to. Anna struggles everyday with so many challenges,. She has very low tone and is not able to hold her head up but for a few seconds. she cant sit, walk, or feed herself. anna has alot of trouble with her bowels and is on mirolax to help her go to the bathroom. They have her at a 4 to 5 month old. She struggles with seizers everyday and is on 2 meds for this. She just got a g tube 3 weeks ago because she doesnt eat much at all. they tried to just put her on a high calorie formula but she still didnt much of that. I try giving her food i eat by purraying it and sometimes she eats sometimes she doesnt. They have her take 2 bottles by a feeding pump through the nite to try and give her extra calaries. After getting the tube she has been moving her arms and legs more i guess because she isnt so weak. she has also been reaching alot more. she has really bad reflux and they had to wrap her stomach around her esophogus when they placed her g tube. anna recieves pt, ot,cbrs(play theropy), and speech. they come to the daycare where she is or to my home if shes there. dispate everything she is the most happiest child. she laughs all the time and everyone tells me how she just makes their day.. these children are a gift from God giving to us because he knows we can handle it. I am a single parent working full time and going to school at nite full time. and looking at her beautiful smile helps me to not think about how tired i am she just keeps me going.



I am like you i feel so alone and would like to have someone close to talk to thats going through what i am.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms