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Avatar universal

Concerned !!

This is about my daughter and Don't know ,If I Selected the right topic Area !
When Lyss was born( 6lbs), She had noisy breathing and her pediatrician found out that,she had Laryngomalacia(Stridor).  They had done a "45 minute" procedure to cut a small portion of her tissue  and the noisy breathing , almost , stopped. This was done when she was 2 months old.  But right from the beginning , She was  very slow  with her feeding.  We were giving her Enfamil and usually spent 45mnts to an hour for 1oz, But she used to drink 24 oz every day  !!!  We started to introduce some solid foods around 4 months and she was taking it without any  problems, But her milk intake came down to 6oz !!! She was 12 lbs at the end of 6 months and  had a weak cry and didn't babble at all.  She just  gained 1 lbs for the next 4 months (10 months , 13 lbs)  and this "triggered" a "failure to thrive" and was admitted in hospital 2 times. After all kinds of testing ( MRI of the brain, Swallow study,sweat chloride,upper GI , DNA , vision etc) , The doctors said "No diagnosis".  Lyss started to sit by herself when she was 10 months and her health looked really bad.. She was not that active and didn't babble at all. We decided ( Against the pediatrician's opinion !!) to go with the G-tube when she was 13 months and since then , Lyss started to gain weight . She was able to walk by herself when she was 16 months and started to babble a lot. She is 25 months now and weighs 25 lbs . Overall , She is within the chart (Weight 30%,Height 50%, head size 15%), But she hasn't started to talk.  Although , Sometimes she says "mamma" and lately "dada" , We would like her to say "mamma " when she sees her mom. She knows her older sister( 6 years old) and plays with her.   She seems to be understanding some of the stuff like "Where is your shoes, put it back, wipe  your face , where is the ball , dog " but when she  sees a ball, She won't say it.  When we ask her , she would say ball .  Now, When I leave home or go to my car, She cries and will  only stop , when I take her into the car or outside.
She plays well with her crib toys end even if we turn it off, She turns it on by reaching the back side of the toys ON/OFF switch.
When we take her to the Neurologist, His comment is "Don't give up hope and time will tell". The developmental pediatrician gave us the "future" for Lyss and We just walked out of that meeting.  We switched our pediatrician and visited many doctors and all of them are suggesting a "genetic test" and we said "No".  When Lyss walks , She turns her right feet "in" and has little bit of muscle stiffness. Also, When she sees strangers , She spits or put her finger in the nose.  She plays well inside the house but  
Won't play with other kids , Once she steps outside of our home.
For the last 2 months, She is hitting herself on her head for no reason!!! Her doctors said , It could be stranger anxiety but she even does that when she sees me or her mom.
10 Responses
242606 tn?1243786248
It is heartbreaking for parents when their infants and toddlers are not developing in a normal way. Your doctors are doing the best they can to determine what might be occurring. But sometimes, when children are very young and are displaying some developmental delays that do not fit the criteria for a particular medical syndrome, it can be very hard to know what will happen. It is for that reason that doctors will tell you that some time must pass until it's clear what progress can occur. It would be wise to undergo the genetic testing, because this may yield some valuable information. On the positve side is the fact that your daughter isnot on a plateau - i.e., she has continued to make some progress, albeit slowly. What did the doctors make of her head circumference being in the lower percentages for her age? Did that give them some notion about what to expect?
Avatar universal
well.. I am with the drs. and say please try to remain postive.  Now self injusirous behavior IE head hitting could be for attention or other things.  My oldest child is autisitic.  He did not eat well at ALL.  It had to do with his mental disorder.  The questions we were always asked were does he understand you?  Meaning when you say point at the ball does he point? Does he follow simple commands?  Does he have eye contact? etc.  the answerees to my ?? were no. so we knew we were in trouble.  SHe could be a little delayed because of the eating issue.  give her some time to catch up.  

Also try the baby einstien dvds they are visually stimulating for babies.  and they are full of information.  Mozart for some reason is thought to "awaken" a childs mind. (now alot of that is for children with developmental disabilities.  I dont know if that is your DD issue .. but it is a thought.  also .. the other thing to consider is that she may not "NEED" to talk.

My friends son did to talk till he was almost 3.  he had a big sister and she was doing everything for him.  and when she was not doing it for him.  Mom and dad would.  IE: if he wanted a toy that was out of reach he would point rather then ask for it.  Then mom dad or sister would get it.  After they took him through the gamet of testing they said do not give it to him until he asks for it.  makes a sound of some sort.  then before you knew it the child was talking.

just a little food for thought.  please keep us posted and God bless you!

Avatar universal
Thanks for your reply..

When she was born , Her head size was 33.5 cm and now (25 months), It is 45 cm.  So far, The doctors haven't said anything about her head size.  One interesting thing is , She was saying lots of "mamma" and for the last 2 months, Lots of "Dadda". When she says  Dadda, She won't say  "mamma" as if now she is on to "Dadda". My wife then keeps saying mamma and my daughter repeats it after her.
I have a follow up with my neurologist next week..

Avatar universal
Hi Lisa,
       Thanks for the response . She understands us  to some extend ,like "come here","close the door","put this into the trash" ..
She makes good eye contact(Also tested in the Children's Hospital).
When she cries , It is not very loud . Same when we make her to giggle..
       She watches Baby Einstein DVDs but cries when she sees some animals or sound of that nature. When she started to walk, My wife took her on our drive way and she stood there for 10 minutes as if she is scared. It took her a while to adjust and now she is OK. We were frightened and very much worried about this incident.
         In the Children's hospital, They did a DNA testing and came out negative ( Forgot to mention this in my reply to HVMA).
I am planning to take her to the Neurologist next week for a 2 year follow up..


Avatar universal
To: Strange_world

My daughter has the EXACT same symptoms!!!  She is 10 mos old right now and weighs only 13lbs and 15oz!!! We have had all of the same tests done.  We have been to the following Doctors.  Pulmanologist, Genetisist, cardiologist, nuerologist!!! She has laryangomalicia and is FTT.  We just went to see the Gastronoligist and he said that she would not need a G tube because of the weight she has recently gained.  She has been hospitalized numerous times for respitory infections.  She has always ran temps which they thought it could be caused by aspirating when drinking???? I am just lost and confused at this point my husband and I are about broke and have ran out of specialist to see. We have three other older children whom are all very healthy and have never had to see any specialist.  I know as a Mom when something is wrong and I feel like I can't get any help with the any of the Doctors that I see!!!!!!  The only story I have ever heard that sounds some what close is from the Strange_world.  I am just curious to find out what happened with your little one.  Do you think the turning point was the G tube?  That is what I thought they would do but he said if she were to get sick then it would be the last resort because she does have the ability to gain it's just when she gets sick that she loses a lot of weight, which makes sense I guess.  
I am overwhelmed and exhausted.  IS THERE ANY ADVISE?????
Avatar universal
Avatar universal
   Sorry for the delay !! I just checked the website and found your comments .
My little one is improving , but may not be fast enough to calm us down.  Two weeks ago, We took an  MRI of her brain &  spine and both came -ve. She is 28 months now and says couple of words. We think, Time is running out for her to catch up.  Her Neurologist has no comments except "Time will tell"..
      We are planning to keep her G-Tube until she starts to talk or become 3 yrs old.  If we train her on something , Then she tries to do it.
For ex : Go and turn on the TV . She turns on the TV, But she doesn't do that by herself to watch her program. My other daughter( 6 yrs now), Goes to the TV room , sit on the "Thinking Chair(Blues Clues)" , Turns on the TV and watches Blue's Clues when she was 14 months old !!.
We don't know what's going on and is very ,very concerned and only , GOD can help us !!!
My daughter didn't have any respiratory issues.

Your daughter's weight is, sort of , OK but what about her Head size ? Does she smile or cry very loud ? How is her babbling ?
What was her head size when she was born ? Did you operate on  the Laringo ?

My daughter is improving every day but she needs to catch up.
Hope for the best and pray..

I found out that the doctors and specialists are of no use !!!
They say , Its all the brain and is a big "unknown" area !!! What a comforting message to a panicked parent !!!

Write Back ..
Strange World
Avatar universal
I appreicate your responce so much. Her head size has always been gowing in the normal range.  I don't have the exact size but, as usual we have yet another Dr appt. this week.I will let you know the measurements then.
  She has not babbled at all which is very concerning. She makes breathy noises and imitates rasberries a lot but that is it.  We did not have a surgery on her laringo the ENT thought it was not a severe enough case to have the procedure. Yet I still wonder if it would have helped.  She did smile at six weeks and responds well.  She is very weak and looks very weak also.  I am very tired of people asking if she is about 4mos and I have to say no she is 10 mos thanks. I know that God will only gives you what you can handle but, I still worry with all of her respitory infectoins.  That is why they think she has not gained enough weight because the majority of her life she has been just thriving.  
I feel the same way about specialist they are really a waste of time and money. Do you feel that the G tube was the turning point for your daughter?  Sometimes I think if we could just put weight on her that her muscle tone would improve.  She has had a MRI and the Dr said it was unremarkable but, really what does that mean???????  
I feel that Dr's look at us as a chart and not a real family situation. I have been questioning getting a second opinion. All we can do is keep praying and have faith.
Again, Thanks for the responce I really appreicate it.
Avatar universal
   Always get a second opinion and especially for the Laringo.
If she has "noisy" breathing, Don't wait and go to a second ENT.

My daughter was really weak and she "turned around" after the Gtube. She weighs 25 lbs now and we did the G-tube against our pediatrician's advice !!!! The pediatrician later told us "You made the right decision". We switched her anyway..

The only negative thing about the Gtube is , Since we are feeding her every 4 hrs( 4 times
) 8 oz of formula, She is not hungry any more and may
not user her mouth to the full extent.

But we need to make sure that , her brain gets all the nutrients it needs and we will keep the tube  until she gets 3 yrs.

What about her milestones such as roll over, sitting , standing and lift herself up ...etc ? Make sure that you do Sweat chloride test to rule out cystic fibrosis.

Strange World.
Avatar universal

Thanks again for responding.  I have just returned from a visit with our Ped. Our little weighs 14 pounds 6oz.  at 10 mos.  He said it classifies her at FTT still her length puts her at the 25th percentile and head circumfrance is at 17 1/2 inchs 50th percentile.  Her muscle tone is still low but able to sit up in the last month or so.
She still does not babble at all and I really worry about her understanding words.  She responds ok?? it's just a lot of questions that I have.  She does roll, sits up but does not put any weight on her legs.  My Ped said today that with her hard time after delivery (she was intubated and flown out) that this would explain the hypotonia and FTT.  My question is just to what extent will she ever walk or talk?  Maybe I am getting a head of myself but, there always so many questions when it comes to your baby????????
She was tested for cystic fibrosis and that was negative I am just thinking I may have to deal with CP?????
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