2 yr old Delayed development Seizures, cannot sit or eat

My baby boy is 2yrs 7 months he started out life as a healthy baby boy carried full terrm with no complications at three months old that all change he could not hold down his bottle and was diagnosed with severe reflux he lost a lot of weight and started going backwards from there he started having seizures which are now controled by medication he cannot eat he has a g button for feeding he chokes on his saliva because he does not know he needs to swallow he cannot sit and can barely hold his head up he has put the weight back on after getting the g button and a surgery that makes it difficult for him to throw up but is not progressing mentaly or physically he cannot talk his eyes do not move together he had surgery and that helped a little it seems he has poor sensory because he loves when you play rough and shots dont bother him he focuses on lights all the time and people occasionally he still has very poor muscle tone which contributes to him not sitting up he does not play with toys and rarely shows any interest in holding things but is a very happy baby loves to be tickled and played with and loves to laugh he moves his legs and arms when he gets a little spark in him and screams and coos exitedly he laughs when you talk to him but we dont know if he can understand and he loves the ladies he is a big ladies man we have seen many specialists ENT, nuerologists, gastro, speech therapists, and physical therapist and none can give us a diagnosis or what to expect in the future they have told us he is not autistic and does not have cebral palsy and can give us no answers his EEG always comes back normal currently the doctors say he is at a 6 month old level he was at a three month old level for almost two years he moved up because he can roll over but i dont know if it is delibrit he usually can not figure out how to roll back over and gets mad and yells and his muscles tense up because he is frustrated i am hoping someone can offer some advise or direction

[margypops]

Have you been down the avenue of food allergies ..I have to assume around that time he had his shots ..,whilst I do think vaccination is necessary I do not like the way babies are given multiple shots ,and my personal opinion is that there 'could' be a cause there. He sounds like he is a happy baby and perhaps he will improve as he gets older, Is he having therapy for the lack of movement    

[Lauren27]

When my son was 6 days old he stopped breathing and had a seizure his eeg was slow but now its normal. he also has a g button and chokes on his saliva he had the surgery where he can not throw up his muscle tone in his arms isnt that good either. we can not find a diagnosis to him he is 7 months old now and every test have came back normal. i know this isnt the exact same thang as your son but its kind of similar

[margypops]

There have been many similar child incidents this last year or so , I think there could be other causes, possibly environmental , that babies are having these problems .Some research is in order..Are you getting any treatment for him ?

[Lauren27]

We have a therapist that comes twice a week. We are being sent to the city to find a diagnosis to it. they said that we may never know what caused this and he could out grow it. but it is driving me crazy! i want to know whats going on and what may happen in the future

[teakster]

Please research VeloCardioFacial Syndrome (or 22q11DS). My daughter was diagnosed at 12.5 at my request to the doctors after many medical problems (please note that just because they don't have any problems with the heart, they should be overlooked with this condition).

My daughter had reflux, choking episodes, no speech at 3 years of age, fine and grose motor skills delay, nose bleeds, poor academic performance...and the list goes on. there are over 180 known anomilies assosicated with this little known genetic condition yet it effects 1 in every 2000/4000 live births.

Please investigate.

i don't want other people to wait as long as i did for a diagnosis.

[margypops]

Check out the information that teakster has put here I think she may have nailed it, I went online and suggest you do the same and ask the doctor about it   heres a couple of links     www.genome.gov25521139   and www.vcfsfa.org.au/ thank you so much teakster

[specialmom]

Oh my goodness!  I am so sorry to hear about this.  Mother to mother, that is so upsetting!  

I just wanted to encourage you to keep at it with the early intervention.  My son has a developmental delay and I know first hand how painful it is to think about the difficulty this will cause your child.   But will give you hope and tell you to keep your faith.

We started intervention when my son was a toddler and really did as much of it as we could.  There are a wealth of specialists to enlist to help your child.  A speech pathologist can work on any feeding issues (chewing, swallowing, etc.) along with speech, an occupational therapist works on things like fine and gross motor and nervous system regulation and a physical therapist can work on body tone if it is low.  They can do amazing things!!!  

If you are in the states, birth to age three has the 'help me grow' type of system in which they come to your home and assess your child along with working out schedules with specialists.  Is this what you have now??  I would encourage you to be a sponge when with these people----  listen to everything they say and when they are not there (which is most of the time) YOU do the things that they do.  My son had fine and gross motor issues due to dyspraxia/ motor planning and did occupational therapy.  We worked on all the things they worked on in therapy all week long.  I also got my child out and mixing with others as much as possible.  

At three, the public school system takes over with intervention preschool.  I also want to add that if you can use your insurance or have financial means to do any type of private therapy to add on top of the public intervention programs, it is worth every penny.  

My son is now 8 years old and doing terrific.  He still does occupational therapy once a week but can do just about everything other kids can do.  

Keep in touch as I'd love to know how things progress with your child.  I'm here often and will offer support any way I can.  Peace

[Lauren27]

Yeah we have ot coming to the house and speech and first steps. He is sucking now but wont swallow. Everything else is coming back to him we live in Missouri so we are going to Saint Louis to find a diagnosis. He is almost 8 months and the doctors say they have never seen anything like this. So hopefully i will figure something out in the next couple of months!!

[specialmom]

Oh yes, I will be thinking of you.  St. Louis is a nice big city, so I am sure that their hospitals are good.  Are you going to see a developmental pediatrician?  

My son's delay was permanent---------  but this does not mean that he couldn't learn to overcome it.  Which he has.  

So, I just want you to remain hopeful that they can do amazing . .  . and I mean AMAZING things to help our children.  

My son did have trouble with oral motor skills.  He had trouble chewing.  We had a difficult time switching him to anything semi solid.  I'm glad that your speech therapist is working on this!  

I wish you luck and do keep in touch.  

[TucksDaddy]

Thank you everyone for the info i will check out those websites today. Lauren it sounds like your son is experiencing the same things my son is. We went to the eye doctor a couple weeks ago to see if he was going to have another surgey to correct his vision because one of his eyes still wonders so im guessing he cant focus on any thing because he is seeing double. The doctor decided to get him glasses his vision is -1 with astigmatism we have noticed a big improvement with his focus now that he is wearing glasses it straightens his eyes so they move together and he focuses alot better on things such as cartoons and people he really doesnt play with toys because he cant figure out how to grasp them very well. The doctor told us about vanishing white matter which connects the two halves of the brain he has had one MRI and we go in next week for his second and we hopefully will find out some more info and they will be able to see if the white matter is deteriorating if it is it is permanent and will probably get worse im guessing thats not the case because he is slowly developing. Vanishing white matter is genetic usually passed down by the father with dutch heritage dont know how they come up with that but my last name and ancestors are dutch came over from holland in the 1600s there is a hospital in Amsterdam were they do research on it

[TucksDaddy]

Thank you everyone for the info i will check out those websites today. Lauren it sounds like your son is experiencing the same things my son is. We went to the eye doctor a couple weeks ago to see if he was going to have another surgey to correct his vision because one of his eyes still wonders so im guessing he cant focus on any thing because he is seeing double. The doctor decided to get him glasses his vision is -1 with astigmatism we have noticed a big improvement with his focus now that he is wearing glasses it straightens his eyes so they move together and he focuses alot better on things such as cartoons and people he really doesnt play with toys because he cant figure out how to grasp them very well. The doctor told us about vanishing white matter which connects the two halves of the brain he has had one MRI and we go in next week for his second and we hopefully will find out some more info and they will be able to see if the white matter is deteriorating if it is it is permanent and will probably get worse im guessing thats not the case because he is slowly developing. Vanishing white matter is genetic usually passed down by the father with dutch heritage dont know how they come up with that but my last name and ancestors are dutch came over from holland in the 1600s there is a hospital in Amsterdam were they do research on it

[margypops]

I wonder why Dutch heritage ..that is interesting must check it out .