please read and give thoughts, ideas, advice (long)

[Guest guest]

Hey everyone,

I am new here and my name is . I am a mom of a large homeschooling family

and I have 2 children we are concerned with. I say concerned because we have no

diagnosis for either of them. My son is 5 and has been clearly different from

when he was baby. He had a typical birth but lost a lot of weight at the

hospital and struggled with putting it back on. This was all during a very

stressful time in our life because my hubby works for the railroad and we had to

move a lot so we didn't have a consistent doctor looking after him like the

other kids. When we finally did get settled some place he got sick and was put

in the hospital for 10 days where they diagnosed him as failure to thrive and

developmentally delayed. From there we went on a roller coaster ride seeing

many doctors which include a genetics doctor, endocrinologist,

gastroenterologist, nephrologist, and a urologist. He had physical therapy,

occupational therapy, nutrition services, and speech therapy through early child

intervention services. He had 1 unexplained seizure and 1 febrile seizure. He

was sick twice which required hospitalization 2 times and was also put into the

hospital for testing where they did a fasting test where they basically denied

him food to see how quickly his blood sugar would dropped to a " bad " level and

also to monitor his blood sugar because it would shoot up to the 400's. The

doctors did many blood test with no results according to them but I got his

medical records and there are clearly some poor lab results. He had a pH study

and biopsy done at 18 months to see if he had celiacs because of gagging, poor

growth, and other things. The celiac test came back negative but I have read

these aren't accurate before the age of 2. The pH study came back significant

so they started him on prevacid. During all of this his behavior became more

and more odd. We could tell something was not right with him. We stopped going

to doctors because frankly we were tired of the 10 minute time we would get to

see them and the $300 charge we paid and the we found nothing come back in 6

months. However, I decided to take him to a developmental doctor about his

behavior. I found a place on the internet with a group of doctors and it said

they took time to observe, etc and help with a diagnosis. My husband took off

work so he too could go to the appointment and guess what? We were there no

more than 10 minutes and got the same thing. No he couldn't possibly be on the

spectrum. He did not interview us to find out what we were seeing at home or

anything. He did say he was delayed (you can tell that) but he never even did

any testing to see where he was at. He just told us that he felt he probably

had a brain injury at some point and gave him the label static encephalopathy

and told us we would probably have to medicate him when he gets older and oh, by

the way, come back in 6 months. These are some of the behaviors we see usually

on a daily basis.

-Gets angry a lot and will hit his head and bite himself

-He has a hard time relating to kids his age. I would not say he is

anti-social. I do think he will play especially if it is a physical game but he

just doesn't do well socially. For example, at church he licked his hand and

wiped it on a girls hair. He will put his hands on someone's face to get their

attention even if they say stop. He does show concern if his sister is upset

but gets really angry if she wants to play with his cars even if he has a whole

bunch.

-He seems to have fascination with getting towels sopping wet and stashing them

some place.

-He tends to crave sensory things running into things on purpose.

-Lines cars up and bangs them together.

-Will hum the Cars2 theme song over and over.

-Does not understand the meaning of share at all.

-When he plays he tends to just get everything out. I don't see a lot of

imaginary play with him. He gets all things out stuffs them in a bag or stuffs

them in his big ride on Lightening McQueen and rolls them around the house back

and forth.

-Very hyper except when watching a favorite movie or playing the computer where

he will do the same activity over and over.

-Has a hard time winding now sometime taking 2-3 hours just to fall asleep.

-He will say " Hi " to people and seems to be social at times and I don't really

see problems with eye contact per se.

-He will ask the same question over and over again sometimes, or here lately

will come up to me and tell me he misses me even though I haven't been gone.

-He has no sense of danger (once when the kids went to school he walked to

school by himself looking for me. My hubby thought he was still taking a nap).

-He has a very high pain tolerance (it is unbelievable, once leaned against a

hot smoker and got a nasty burn on his back. He had a melt down not because he

was hurt but because my husband yanked him away from it.)

-He is still having problem with potty training with BM.

-He has low muscle tone.

-He has worn glasses since 9 months old and has stabismus.

-He gets right in your face to ask something and sometimes when you tell him to

look at you he won't hold his head straight but rather tilts it all the way up.

There is a lot more but these are what I can think of off the top of my head.

My daughter, Kara, is 3 and we are concerned about her as well. She does not

have the medical history that Sawyer has. She has poor muscle tone, her right

foot turns in and her right hip turns in. She is delayed in gross, fine, and

speech as well. She is having intestinal problems right now as well. Her belly

will swell up and she will look pregnant and then she will finally have huge BM

and it will go back down again. This happens over and over. Here are some

things we notice about her off the top of my head.

-She has terrible temper tantrums with the longest lasting more than 30 minutes.

This will include hitting the floor with her arms, pushing something over,

scooting on her back kicking and screaming, flinging herself against the wall.

If someone is the object of the anger she will hit, kick, and pinch them.

-She will hum the same song over and over.

-She says the word " butthead " over and over (I'm sorry but we have a teenager

and she heard it from him)

-She doesn't deal well with changes not necessarily at home but things like her

sunday school class where she had to go to a different classroom and almost had

a meltdown even though the same kids were in there.

-She does sleep a lot. Sometimes taking 2-3 naps a day. But will have trouble

sleeping at night even if she doesn't take a nap taking a long time to go to

sleep. She also will wake up in the middle of the night screaming and hitting

the walls until we can get her to calm down.

-She will sit there and stare at you for an unusually long time sucking her

thumb.

-She too doesn't seem to play appropriately with toys. She takes them out and

scatters them but doesn't put the doll in the stroller, play with the little

people or what not. She tends to collect them and horde them but not make them

do anything. I do see her talk on the " phone " occasionally but that is it.

-She will sit and open and shut a door a thousand times.

-We often refer to her as our crabby child and make the statement we hope she

grows out of it someday.

-My son is sensory seeking and she is sensory avoiding. She hated walking in

grass and would stand there crying if put in it. She always held her hands up

when she was younger because she didn't want to touch anything. She will only

eat pureed veggies and some fruits that way.

-She is very shy and when we go someplace she will often hang back with me

coaxing her to come on.

-She likes to sit in the rocking chair upstairs and rock and rock and rock.

My husband and I are in complete disarray on all of this. We had our 15th

anniversary yesterday and wound up talking about them and crying together

because we have no answers. We don't know what to do and we feel so alone

because it seems no one knows what we are going through. If you have any hope to

give we would appreciate it.