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i dont know how to qualify her

Posted by on Dec. 15, 2008 at 11:47 PM
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 hi moms with developmental delays

Ive written before and some moms  say Havana does not sound developmentally delayed she nOT ?what wrong  then ,there is nothing diagnosed as of yet, even though we tested her for almost anything.first we found out she Had terrible ear infections since 3 months her dad had them too,  tubes were inserted by 11 mo this is  when she stood alone  started this wild scooting  style and started crawling after a year it has to b E n carpeting only , she fell hard on hard floors but we checked it out on MRI we also ran neurological tests  all came back clear but we did not hesitate to take her to OT ,speech ,and gross motor therapy she been at it 6 months or more  her improvement is tremendous,.the speech therapist has her  signing and she used to have more language ( we believe she was nOT hearing after a while because language got lost somewhere but she understand all we say in English and Spanish

she say now two or three words plus the signing  but  we don't know if the are words or babble she says papa clear as a bell up pi up pi  Abeu for peek boo, she used to say mama and then dropped it to only crying for mama and now no mama, she used to say done Esta tete and tete  but she wont say it now, a second pair of tubes  wereplaced in her ears  last week all ready her balance is better and she cruises all over the furniture and all over  today she lets go and reaches for hand she is  eager to finally let go and walk all alone walk but she 20 months so she cruised for along time .and no walking alone yet she hold her weight and can walk holding one hand we put padding and area rugs in her room and living room so if she afraid of letting goshe  feels more secure,.then  in OT, she gone from  not piking up finger food to picking it up from container she reaches and plays with toys waves bye bye on command she also returns toys therapist asks for, so here we are there is no diagnosis  Agian  she Had tremendous ear infections and she was worn  early than due date and weighed 5 pounds, some therapist say she had weak muscle tone but very slight and she is way stronger now, she eat earthing  is very engaged happy wont cry unless very tired or very hungry have nany  of you experience delays like this and then never knew what is the answer,? could she  mildly slow ?i cant see  features indicating this- please tell me what you think there no down syndrome no autism.  sweet sweet little girl. whats going on here.? most pediatricians she  comes into  seeing most are family members say she just catching up from a fall or ears problems. i took her to her cousins party who was one when Havana was15 months  they did  equally as far as speech  and  mobility. Havana was aware of Carmen  and kissed her Havana has an older bro who is so smart and so ahead she tends to do it all for her , the pediatrician who sees her here at home order her to go to therapy, after a year  last her gross motor therapist say she will  walking alone by Christmas or soon there after, the other two  ot and speech plan to keep her more time so she catches up  please any ideas? thank you all alina  novalshrugging

nani noval
by on Dec. 15, 2008 at 11:47 PM
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mamatware
by on Dec. 16, 2008 at 10:29 AM

Honestly, it all could be her ears.  I had an ear infection back in March, the first one I had had in 25 years.  And let me tell you....I will never say "it's just an ear infection" again!  During the time I had the infection....I didn't want to carry my baby, or even hold him while standing....because I was afraid I would drop him or lose my balance and fall while carrying him.  I didn't want to drive, I didn't feel safe doing it.  The best way to describe how I felt, was kind of drunk....for like a week straight with an icepick hanging out of my left ear.  Then you get into the hearing issue, hearing is very important for all development not just language.  If the child can not hear they are guaranteed to not be able to follow any directions given to them.  I was so irrated and mad the whole time, because I couldn't hear...I could tell people were talking to me...but I couldn't understand what they were saying all the time.  So while I can't say 100% that this is all in her ears...having been there myself just a few months ago....I completely agree that it could be.  My suggestion is to get the ear problems under control, and see what happens after that.  It will take her time to catch up....but their is a good chance that she will.

Jennifer-Group Admin


diane08502
by on Dec. 16, 2008 at 4:38 PM

    With all the ear infections, have you ever done any audiology testing??  My son was born with some hearing loss, not from ear infections.   We do audiology testing every couple of months, and he has check up with his ENT doctor. 

    Also, have you been to a pediatric neurologist??  Children can be diagnosed with hypotonia, with no known cause for it.   there is a yahoo group for that too, please take a look and join in,  hypotoniahope@yahoogroups.com    Its a warm and sincere group of parents to hang out with.   Of course, so is this group too!!!  You should also ask for an EEG to confirm no seizure activity is happening, and a brain MRI too.   I have been there, and done that, we have been in NJ early intervention for two years.   My son was having 40 seizures a day when he was disagnosed, that was two years ago.   He has made astonishing progress since then, and other than his abnormal EEG, you would not be able to tell whats wrong by looking at him.  After two years of Physical therapy, I actually have to chase him if I let him go in the supermarket!!  Its a miracle!  He is 33 months old, and he is doing wonderful.   I totally understand what you mean about seeing improvements with the therapies, my son did great once we got his ei therapies going!!!   we have done PT in and out of ei, for two years, and Joe Joe still has 5 hours a week of various therapies.   

    Dont worry about when your daughter will walk, just know that she will, and keep on doing all the wonderful therapies!!!  they are like medicine for our kids!!! I had no idea when my son would learn to walk, but from the time we started PT to the time he was walking was 9 months.   I knew he would, I just didnt know when.  WE had two speech evaluations and on the second one our speech therapist agreed that he was ready for speech therapy, you would think I was happy right?  WRONG!!  I was sobbing so much, all the work we did to catch him up in gross motor, and then we had to address speech, which was very very delayed.   THat was a year ago, yesterday, he told me "all done sweep Mommy" which translates into "I'm all done sleeping!"  he has his own language, but he is certainly trying very hard to get the message across.    A good site for sign language, ASL,  is www.lifeprint.com

      Also, try this too,  our neuro developmental specialist said to give My son Coromega, one half packet per day, when he was 14 months old.  We just increased it last month to a full packet per day.   their site is www.Coromega.com, you can print out the info there and show it to your daughters doctors, and the therapists,  Joseph is doing great with it.   He is on a very small dose of Phenobarbital now, and he has been taking coromega for over a year now. 

      Another good site is www.familyvoices.org   its a list of advocacy resources in your state.    just click on your state and see if you find any new groups there.

     Good luck,  Nani is so beautiful!!!   Happy Holidays and I hope she enjoys ripping into the wrapping paper, LOL!!!  Keep on doing all the wonderful therapies, you might not ever have a diagnosis, but if you dont, you can still help her make progress!!  Sending you prayers for patience and stamina,  DIane

dianelanglamorticella@yahoo.com
amygugi
by on Dec. 16, 2008 at 10:14 PM
Good luck! I've had a bit of the same trouble trying to find out what's wrong with my little girl. You have to keep fighting!! It's hard I know it is. I'm going through it by myself. It sucks!
tritter77
by on Dec. 19, 2008 at 12:45 PM

Wow your situation sounds a lot like mine.  My son Brock is 28months and we've been doing PT, OT and speech for the past 8 months.  We still have no dx for him and I've had everything possible tested.  We've done neurology, MRI, EEG, chromosome tests, blood work....all to come back normal.  Our concerns with Brock started at 6 months when he couldn't hold his head up.  He lagged behind physically, crawling at 11months, and walking at 16months.  It's been only the past 5months that he's been able to walk without falling constantly.  He's a year behind in speech and I feel that his words have changed.  He still only says about 5 words but instead of getting more he just replaces them and stays at 5.  They also sound very muffled when he says them.  Brock has had many ear infections and he was one ear infection away from getting tubes, as it's been every year.  We've had his hearing tested many times and he usually passes with some neg pressure which they tell me is from his colds he has.  We've been told he has language expressive receptive disorder but that's it.  No autism, no MR, nothing.  My EI speech path just threw out the possibility of apraxia.  Brock does have a slight low muscle tone but not bad and having apraxia don't explain his overall delays.  All I can say is come to this group for support and keep strong for your baby.  It's hard not knowing and I've been told there is a good chance we may never know.  I still take him to the university of Iowa every 6 months in hope we'll figure out something.  Best of luck to you and your baby, take care.

youmakemydreams
by on Mar. 10, 2009 at 2:20 AM

 thansanks  for all your comments. no Havana grace has never had any seizures at all.  but about the patience you need is amazing !! poor thing she cruises and walks round with assistance but she was born with very mild- low mussel tone and until the trunk gets very strong she wont let go alone, thanks again, and good luck for u too. we know speech is behind too because of so many ear infections we had a MRI that was clear two tunes  insertions and one chromosomal testing , I'm afraid of genetic testing ill do it at three if necessary i just pray its not.  Havana mom  thanks for all you wrote it helped me tremendously lesbians

mamatware
by on Mar. 10, 2009 at 8:31 AM

Why are you afraid of genetic testing??? 

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