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#1 of 18 Old 08-23-2012, 02:20 PM - Thread Starter
 
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my ds just turned 2 and this last year has been very stressful. This is going to be long, but background info is necessary. He was born full term , albs lighter than his 2 older brothers and from the get go i just felt he was a little less alert, his body felt very floppy. from day one till present he is not a good sleeper, very light.He always made his milestones, but in the last month that is considered "normal". But the ped. was never concerned because of that. at 6 months he weighed 16lbs 4 oz. at that point we were switching insurance and didn't have it for a few months so i skipped his 9 mon well baby. to be honest i didn't notice that he wasn't gaining, he just always seemed like our little peanut. at 12 months we started with a new ped. due to ins. and at his well baby we realized he hadn't gained, grown in height or head in 6 months. I was a wreck and scared to death. we did huge blood work ups (16 viles) and the only thing that came up was that he was mildly iron deficient. Now during those 6 months he was bfed and around 7 mon we started solids but he hated them. so he was mostly bfed. he was never a huge eater, i was always trying to get him to eat a little more.  So after the blood work he went to a ped. gastro. who put him on a high cal diet of mostly dairy. He started getting so sick, spitting up tons, eczema all over his face, crying all the time. We took him off dairy and they though his failure to thrive could be due to allergies. so we saw a ped. allergist who said he has intolerances (she suspected) . she wanted him off dairy, soy, gluten, corn, sugar. THrough this he was gaining little bits but very slowly. his height started growing and his head, but he stayed very low on the charts. He would eat a little better and then not on and off. He would gain but only around 2 oz in 2 weeks.

 

At 18 months we had him evaluated by EI because the dr felt his speech was behind and maybe that had to do with his lack of desire to eat. he had a oral motor delay but missed it by one month (scoring) to get help. Around 18 months his desire to eat went down to nothing, like a bite of egg for breakfast and then not wan to eat till 3 pm and only a few bites then. So we went to a new gastro who said take him off the allergy diet, even though he grew it was so insufficient that it couldn't be his issue. So we put him back on the foods and it didn't spark any new desire to eat. Digestive issues seemed fine, he never had any, he didn't think it was stomach. So my ped said maybe its just behavioral, but lets first get an OT to rule out sensory/oral motor issues. Well in her review, the OT felt he had tactile sensory issues, low tone,and speech delay , and seemed behind in gross motor, but ok in fine motor skills. I knew nothing of all of this. so i have been trying to do my research , the ped did minor genetic testing for fragile x and kliensfelter syndrome but they came back negative. She wants to send him to a neurodevelopmentalist, but i haven't been able to even get an apt yet.EI is coming next week for a re evaluation, this time i specified the sensory and eating issues. ( last time only a speech pathologist evaluated him).

 

As of now jax can say 3 word sentences but his speech sounds very mushy, only my husband and i understand him.he drops the ending of most words or it sounds nothing like it. example Mater is "noono" and thats one of his clearer words. his cognitive reasoning seems totally fine. He doesn't like certain textures to touch him but he reaches from trying to tell me to tantrums, it depends on the day. when playing outside he is always telling me his hands are dirty. He gets very overwhelmed by people, in groups he just cries and clings to me the whole time.This is getting worse and worse, but every once in a while it doesn't seem like it bothers him. In the last 2 weeks all of a sudden sounds startle him and cause him to freak out. it can be a car alarm going off down the road or even his brother calling my name. He drools when talking or concentrating, and his body still seems floppy. When he runs he looks like he glides over land until he falls. He is 2 now and only 17 lbs 1 oz.

 

Has anyone ever had a child like this? or a situation similar...espeially the eating part?  Or does this sound like something you know of? its been a year and i feel like we are just starting to look in the right area, but still have a long way to go. i just feel so lost...all i want is answers , we can deal with anythings, i just want to be able to help him and for him to grow .  If any one has any advice i would really appreciate it!

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#2 of 18 Old 08-23-2012, 08:57 PM
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I'm not an expert...but that does not sound like a behavioral issue at all.  Get an appointment with a geneticist for a full work-up.  Make the pediatrician's office staff do some of the work for you - they can schedule the appointment with the neurologist and the developmental pediatrician and the geneticist.  The ped should not burden you with all of the scheduling, especially since you will get appointments much more quickly if the doctor's office calls for you.  Developmental regression (losing skills) is a real risk for kids like this.  

 

Also make sure you get the full EI team (physical therapist, occupational therapist, speech therapist, behavioral consultant, social worker, psychologist, teacher consultant) present for the eval.

 

My kids both had feeding problems from the start, but nowhere near as serious as what you're going through.  I think your pediatrician's attitude is unconscionable and unethical.


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#3 of 18 Old 08-23-2012, 09:46 PM
 
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I agree with the previous poster.  i would take it a step further and make an immediate appt with the general pedi clinic at the closest children's hospital.  Those pediatricians will be able to get you in to see the pediatric specialists faster, and might get a head start on some of the testing.  It could be genetic, or it could be a brain injury from a prenatal bleed.  The floppiness, lack of eating, and sensory defensiveness are all worrisome.  At minimum, there are means to ensure your child is getting sufficient nutrition.  My daughter is g-tube fed, but I cook and blend all her meals since she will not eat by mouth.

 

I also agree with the pp about making sure the entire team id there from EI, you can also ask for a dietician.


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#4 of 18 Old 08-24-2012, 07:38 AM - Thread Starter
 
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thank you for the direction. I'm going to call EI today to see if all the therapists can come. Anj_rn, i see in your signature that one of your children had a brain injury. Did a neurologist find that?  And once you were working with doctors of this nature, how long did it take for a diagnosis?  You no one thing that has always bothered  me but all the drs look at my like I'm crazy for thinking there could be a link with this, is when i was in my 3rd trimester i got bit by a tick and got lyme disease. I had had it before and didn't respond to antibiotics well so i found an herbalist that had totally gotten rid of it. I had been free of it for 2 yrs, but then got bit again. Due to not being able to take doxycycline while pregnant and being allergic to penicillin and not responding well the first time, i did the herbs again. they are safe herbs to do pregnant and i felt better in 3 weeks . But you read the horror stories of what lyme can do to a fetus. I have always wondered if it could have caused neurological damage for jackson. although he has never tested positive for it.

 

also, with sensory issues, is it normal for them to go in waves? like this morning he had peanut butter and jelly toast and was smearing it on his legs, the table, everywhere, but most days he has to eat that with a fork and if a drop gets on his skin he has a total meltdown that will take up to 15 min to calm him down. And most of the time he loves his blanket , although always VERY particular with  how it is laid on him, but some days he says he wants it and then flips out when it touches him, so i take it off of him and then he flips out for it...like he doesn't no what he wants. Are these sensory symptoms or could he just be moody? my gut is its something , but sometimes its confusing.

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#5 of 18 Old 08-24-2012, 09:14 AM
 
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Originally Posted by mamatwig View Post


also, with sensory issues, is it normal for them to go in waves? like this morning he had peanut butter and jelly toast and was smearing it on his legs, the table, everywhere, but most days he has to eat that with a fork and if a drop gets on his skin he has a total meltdown that will take up to 15 min to calm him down. And most of the time he loves his blanket , although always VERY particular with  how it is laid on him, but some days he says he wants it and then flips out when it touches him, so i take it off of him and then he flips out for it...like he doesn't no what he wants. Are these sensory symptoms or could he just be moody? my gut is its something , but sometimes its confusing.

This is an exact description of the way sensory issues presented in YoungSon. Some days he loved going to the beach, others he couldn't stand the feel of sand. Sometimes a loud, chaotic environment was fine, a bowling alley for Pete's sake! others the tiniest sound could set him off. There was no predicting when and where a meltdown might occur. And no clear warning or antecedent.

 

I agree with the PP that this does not sound behavioral at all. I simply do not believe that meltdowns are fun for ANYONE, a call for attention, or any of the other explanations I have heard. No one would choose not to eat, unless eating was worse than the feeling of hunger. No child would choose being upset over being happy if he had and choice or control. Please trust that your child is just as confused and miserable as you are about all this.

 

I totally support your attempts to find an explanation and help through diagnosis. In the meantime, have you read The Out-of-Synch Child? Even without an exact diagnosis, it may offer some explanation, support, and suggestions. Also, an occupational therapist can work with symptoms, even before a formal diagnosis. It will take a dr's referral to get your insurance to pay, but with my insurance, it works to set up the OT appointment, and let them contact the ped for the formal referral.

 

I wish you the best. It isn't easy, by any means. But I want you to know that many sensory issues can settle themselves over the years, and many kids learn to manage their own needs and limitations with time and maturity. YoungSon is now a teen, and he eats nearly a full diet (still has a strong aversion to certain textures), goes anywhere and does anything (even a Ziggy Marley concert last month!) and really lives a full and "normal" life. We never would have predicted this a few years ago.


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#6 of 18 Old 08-24-2012, 10:17 AM
 
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Mama - be careful with EI in NJ - they will do everything they can not to provide speech services.  I have some great resources for speech and genetics - I'm in South Jersey - feel free to PM me.


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#7 of 18 Old 08-24-2012, 08:31 PM
 
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I'm not an expert...but that does not sound like a behavioral issue at all.  Get an appointment with a geneticist for a full work-up.  Make the pediatrician's office staff do some of the work for you - they can schedule the appointment with the neurologist and the developmental pediatrician and the geneticist.  The ped should not burden you with all of the scheduling, especially since you will get appointments much more quickly if the doctor's office calls for you.  Developmental regression (losing skills) is a real risk for kids like this.  

 

Also make sure you get the full EI team (physical therapist, occupational therapist, speech therapist, behavioral consultant, social worker, psychologist, teacher consultant) present for the eval.

 

My kids both had feeding problems from the start, but nowhere near as serious as what you're going through.  I think your pediatrician's attitude is unconscionable and unethical.

 

 

yeahthat.gif  on all points.  I don't believe EI will send you everyone at once in NJ--they start out with the most major thing and move on from there, usually looking for the first person to come back and say "Yeah--definitely need more people".  We've dealt with them since 2004 and the most I've ever had out for an eval at one time is two specialists despite the fact that we (on one child's case--my biological child at that) wound up with easily 7 different types of therapy including feeding.  And it is the speech pathologist (specifically one that is Clinically Certified Competent/CCC) that does the feeding eval.

 

But I'm more likely to think that you need a complete genome hybridization (or whatever equivalent they run nowadays) to look for chromosome abnormalities.

 

Also, while what you describe of sensory issues being in waves, we found with my guy that this was partially a product of a broken digestive system.  So there were some foods that irritated him heavily and when his system didn't break them down well enough (because his system was damaged from a very brief NICU stay and the abx course there plus we suspect that his vax damage may have included damage to his gut but who knows)--those partially digested food particles landed on his nerve endings in a way that not only caused sensory issues, but also caused developmental issues.

 

Last--if his iron was low, did they also do a blood draw for lead?  Because often, the two are connected and lead poisoning would totally cause a lot of these problems (although not all).  Including the loss of appetite/low feeding.  When your iron is low, your body becomes more sensitive to metals and tries to grab whatever metals it can from the environment.  If you saw the physical amount it took to cause a problem in a child, you'd be stunned.  And it can come from so many places--dirt, water... not just paint.  I would really get that done IMMEDIATELY to rule out because a lot of what your describing connects with elevated lead levels.  

 

 


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Mama - be careful with EI in NJ - they will do everything they can not to provide speech services.  I have some great resources for speech and genetics - I'm in South Jersey - feel free to PM me.

 

Inasmuch as EI services in NJ have been cut back, southern NJ is worse than northern NJ because of the lack of SLP's that are just physically available to service southern NJ.  It's been that way even since before EI cut back services.  And really, they didn't so much cut back services as much as they closed up a nasty loophole that drained the system: the people doing the evals happened to be the ones that were hired to do the therapy.  Conflict of interest much?  We were actually offered way more hours/week of services than we needed; and when we caved and took 5 hours of a therapy I was sure we didn't need, we cancelled it within 4-6 weeks because it was exactly as I thought.  So it really WAS wasting an awful lot of money.


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#8 of 18 Old 08-27-2012, 06:01 AM
 
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Heather - the flip side of that is that they tell parents their kids really don't need something they desperately do need.  We were stupid and accepted what they told us - that our son didn't have a speech delay but rather was too "busy" and needed to learn to sit and focus and then he'd talk".  He aged out and still wasn't talking much.  After 6 months with no improvement we had a speech evaluation.  He has a severe speech delay (apraxia) as well as other developmental delays.  My best friend just went through the same thing with EI.   Of course, we are both in South Jersey.  

 

I'm glad to hear that things are better in the North.


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#9 of 18 Old 08-27-2012, 03:03 PM
 
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Heather - the flip side of that is that they tell parents their kids really don't need something they desperately do need.  We were stupid and accepted what they told us - that our son didn't have a speech delay but rather was too "busy" and needed to learn to sit and focus and then he'd talk".  He aged out and still wasn't talking much.  After 6 months with no improvement we had a speech evaluation.  He has a severe speech delay (apraxia) as well as other developmental delays.  My best friend just went through the same thing with EI.   Of course, we are both in South Jersey.  

 

I'm glad to hear that things are better in the North.

 

Significantly cut back, but better.  And they've griped about the shortage of SLPs down there since at least 2004 when we got involved.  Hugs, mama.


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#10 of 18 Old 08-28-2012, 11:44 PM
 
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mamatwig your son sounds alot like my son he is now almost 4 but at 2 years old he was only  17lb and 9 oz we had been thru all the test and everything was coming back normal till about 2 and ahalf years old the found that he could not eat anything with protein in it because it would make him not want to eat in turn it was make him sick and i mean realy sick my son was born early and had alot of problems but nothing like i thought he would so after we so a doctor that just did a good bit of test he found that food that had protein in it he was not able to get nutrition from so it would make him feel bad plus he would not grow now i am proud to say he is almost 30 pounds we saw a doctor that help us make a safe diet for him and he has been growing ever since i hope you find some answer soons and i will be praying for you take care i was hope my story would give you some hope  and courage too you just got to push those doctors harder and do alot of looking for things that could cause your son problems


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#11 of 18 Old 08-31-2012, 07:18 AM - Thread Starter
 
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unuselyriver I sent you a pm so we could talk a little more. Your story is very encouraging. thank you!!  EI came and said he had a severe language delay and a severe gross motor delay. THey said they did not see any sensory issues. I tried telling them about the noises but they said they have to see it. He didn't hide from them and after about 10 min warmed up to them enough to do the tests. He had some trouble switching from each task but nothing to severe. He didn't attempt to put all their toys in his mouth. But then that night he was up for 21/2 hours screaming unconsolably  because i couldn't get the blanket"right" on him. finally i started telling his the story of disney cars ( he lives for lightening) and when i got to his favorite part he calmed down, and then repeated the same sentence for almost an hour over and  over until he fell asleep. And the next morning my mom knocked on the door and for 5 min he ran in circles screaming. maybe I'm wrong but i see things that are not right. i was annoyed that EI said they can't mark it unless they see it. His fine motor skills he graded advanced for, his finger dexterity has always been amazing , he was lining tiny erasers on a table edge at 16 months. Im just so confused, i no something is not right.  Everyone i talk to says that sounds like autism, which i agree parts do, but his socialization seems for the most part pretty normal.Im trying to read more on it, but i don't really think thats what it is. I think there are definitely sensory issues, anxiety, a little OCD , and his delays....does anyone know what that could be?

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#12 of 18 Old 08-31-2012, 07:39 AM
 
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I can't add anything much, but i have a very good friend with 2 autistic sons, one is my godson.  Both give her (their mum) good eye contact, lots of hugs and affection and seek out tactile interaction with her and those they know well.  Both are autistic.  Autism is more complex than a lot of people realise and the social elements can present in many different ways - her eldest can now talk well (he had almost no words at age 3) but is very literal in his understanding of what is said to him.  Her youngest, who is 2.5, is unable to speak at all though he can now make one verbal "noise" during a familiar repeated activity (which is a start to help him to learn that verbal communication is a good thing).  Both of them are full of smiles and laughs and thoroughly lovely kids, and both are most certainly autistic.

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#13 of 18 Old 08-31-2012, 10:14 AM
 
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Kids with non verbal learning disability have a lot of the same things going on as kids on the high function end of the autism spectrum, but without the social issues. It's not a DX I really understand, but it might be worth looking up.

 

Your son is so, so young, though, that figuring out exactly what is going may be impossible at this point. For me, part of this path of being a parent of a SN child has been making peace with the not knowing.

 

A book you might find helpful is "Quirky Kids" by Klass. It talks about sensory issues, aspergers, PDD-NOS, non verbal learning disability, and some other diagnosis that have a lot in common. Very nice book, feels like hug from a parent who has BTDT.
 


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#14 of 18 Old 09-01-2012, 10:59 AM
 
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My DS1 is 3, almost 3.5 now, makes eye contact, is engaging, and has a PDD-NOS dx. It was very difficult to get that dx due to his young age. We'll be going back when he is older to see if it can be narrowed down. We ended up traveling across the state to a Children's Hospital for evals, that was the only way he got any dxs other then speech delay. We waited until after his third b-day just so he would be a little older even though I've known for a long time that ASD was a possibility. DS1 had been in EI since 19 months and now receives services through the school district. It is just really difficult when they are so younger and higher functioning for others to see.


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#15 of 18 Old 09-04-2012, 11:19 AM - Thread Starter
 
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Just got back from the neurologist and it was such a nice visit!! she totally got "it". she thinks all of his problems are related to each other and definitely doesn't think its behavior. She is doing a genetic micro array (sp) test to see if there is a genetic linking, which she is suspecting . She is also ordering a metabolic test to rule out all of that stuff. She feels he has sensory processing disorder and said she definitely sees signs of PDD-NOS and at this point is suspecting it, but he is still to young to really tell , so she wants him in speech, physical, occupational, and feeding therapies and said lets see how he responds in the next 6 months. She was very thorough and was great with jackson. At the end she said don't worry there is a big picture now and were going to get to the bottom of this. which of course made me cry. But i really do think were going to start making sense of all of thishappytears.gif

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#16 of 18 Old 09-04-2012, 01:16 PM
 
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{{{hugs}}}  So overwhelming but you sound like you are on the right path.  Kudos to her for ordering the micro array (wish they automatically did it for all kids with developmental delays).  My son has a genetic deletion which was found with that test.


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#17 of 18 Old 09-05-2012, 09:07 PM
 
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Sounds like you got a good neurologist.  Hugs, mama.


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#18 of 18 Old 12-06-2012, 05:50 AM
 
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i am hoping everything is going ok with you and your son and so glad you got a good neurologist 


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