Need to know we're not alone!

by Mike
(Wadsworth, Oh, USA)


Cash is our 18 month old son. He has had many issues since birth: Jaundice (3 day NICU stay), tongue tied, eye muscle surgery, ear tubes, reflux (that WE had to diagnose at 3 months old. He still takes prevacid to this day), Milk Protein intolerance, global delays, sleep associations etc.


Our son does not speak one word. He just started pointing but only for food or drink. He is just starting to use a sippy cup on his own 50% of the time (i usually have to help him tip it). The only things that he enjoys is Baby Einstein Videos (could watch all day if we allowed), any activity outside, elmo anything, and balls. He doesn't play with his toys hardly at all and doesn't play with them correctly if he does.For the past month he has been going to OT and PT. We just got into Speech Therapy this week. We are unable to go out to eat at a restaurant due to his anxiety. He freaks out and seems over stimulated at any social setting.

Grocery/Department stores are ok for up to 20 minutes. He ignores younger children but is interested in older kids that are playing (he squeals in delight at them). He is in constant movement never wanting to be held except only to nurse(which is for comfort at this point). He is a clumsy walker (learned to walk at 16 months), frequently unbalanced and falling. He shakes his head 'no' at appropriate and inappropriate times. He sleeps maybe 8 hours per night. He wakes up 4 to 8 times per night fussing. He arches his back frequently at night and scratches his stomach to the point of blood sometimes. He has always slept with us in order for any of us to get any sleep.

Cash has had x-rays and an MRI with no evidence of damage. He will be getting an upper and lower scope from the GI doctor on Monday. We are actively trying to solve the puzzle. The daily struggle is wearing on both me and my wife. It is especially hard for my wife who is pregnant with twins due in March. Our pediatrician says that she "feels bad for us" and that "Cash has alot of issues" and "she cant do anything for us". We have had to make our pediatrician refer us to the specialists that we have seen. We keep saying "maybe this is it! We may be near an answer", without success. We are not sure if he is in pain or its just part of his disorder (whatever it may be). We just heard about SPD from our speech therapist, not as a diagnosis but as a maybe. We feel like physicians avoid even mentioning any disorder. We have had to do all the research on our own! If we could only get some ideas of what could be going on here! We wont be offended! We want to help our child!

Anyone have similar issues? We feel like we are alone sometimes!

-Mike-

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Feb 23, 2012
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Wow, sounds just like us!!
by: Shannon

I came across this page looking up an OT in Wadsworth for my daughter for sensory processing. You story sounds so much like what we have been through! My daughter is now 23 months old and from day one things have been a constant struggle & left my husband and I so puzzled as to what the problem is. I have had to do my own research online as well as reaching out to other parents going through the same to get any answers or help. It feels like dr's are clueless and you just end up with a huge medical bill and no real help!

My daughter also had severe reflux from birth until over a year & had an upper GI & was in feeding therapy for not eating well & certain textures. She was intolerant to dairy & soy & we had a hell of a time going through the constant crying, screaming, loss of sleep (still do!) & we also co-sleep to get any sleep at all. Life has been crazy!! Now, we have severe head banging during a temper tantrum that happens all day long & is concerning us so here I am in the same boat with the reflux hell days of searching to get answers. We are also in Wadsworth too!! Just wanted to say you are definitely not alone & as much as I wouldn't wish this on any child or parent, it feels nice to know of someone going through the same.

Oct 26, 2010
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by: Mike

Thank you both for the encouragement and support! As far as vaccinations go we have only allowed a few since birth. I believe DTAP and Roto... We have always refused the multiple vaccinations in one shot. And we told the doc's that he is taking a year off vaccinations.

His upper and lower GI scope went well and from the pictures they say that everything looks good. Just waiting for the biopsy results next week. We are taking things one day at a time and will never stop trying to help our son!

-Mike-

Oct 24, 2010
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so sorry
by: Anonymous

first i would like to say good job for not ignoring the things your son is going through and actually doing your own research!!!!Second, i also do not think many doctors should be doctors, my husband and i just typed in one day 'how to get my daughter to wear underwear' and it came up with the spd website... from there i went to her pediatrician who i figured would tell us it was behavioral or a phase...luck for us she agreed and referred us to a neuro-psychologist and then to OT. however i have ulcerative colitis that went completely unnoticed (even with severe bleeding and anemia) for 7 months by multiple doctors until one day finally one say huh?? why don't u go see a gastro... well a year and half later and 42 weeks of iron infusions, 3 blood transfusions later i am still bleeding bc of the damage waiting so long caused me.... SOOOOO what i am getting at is doctors (most of them) dont know crap and while we hope they have the answers most dont!!!! YOU are your child's best advocate

... you are there everyday seeing his symptoms and the doctors are not.... also, try not to over-analyze every little thing he does and doesn't like at this point *** most 18 month olds will not actually play with toys the correct way or play WITH other children...they will observe or play next to but not with... also think of this maybe your son is actually smarter than u and these toys he is not playing with 'correctly' he may have found a funner way to actually play with them :)!!!! keep going to OT And PT...they DO help!!!!

you guys are amazing --- everything will turn out okay.. just a few bumps in the road to making ur amazing unique son the person he one day will be!!!!

BREATHE!!!!!!!

Oct 24, 2010
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Hey guys....
by: Anonymous

You are SOOOOO not alone!!!
Question? Has he been vaccinated??
The scientific proof is out there, just look for it.
Start with you tube, type in "vaccine nation 1-10"
You will be blown away....
Poor kid, hes gonna need alot of therapy, just like my son..
PLEASE watch that movie till the end, and your eyes will be opened!!!
Good Luck, and God Bless you and your family, Kim

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