Hunter Update

So we go in….
Talking with her – she thinks he’s constipated… huh… what? She palpitates his stomach...

1. Your child is constipated if one or more of the following are true:
2. He or she has fewer than 3 bowel movements a week. NO
3. The stools are hard, dry and unusually large. NO
4. The stools are difficult to pass. NO
5. Stools that are large in diameter NO
6. Stools that are very hard NO
7. Small amounts of bright red blood on the toilet tissue after your child has a bowel movement NO
8. Stomach pain and bloating NO
9. Loss of appetite NO
10. Crying or screaming during bowel movements NO
11. Avoiding the toilet or resisting toilet training (doesn’t apply per sea)
    

If your child is having soft bowel movements, then he likely isn't constipated, even if he doesn't have one every day. OK…………

Hunter has…
· AT LEAST 2 bowel movements day
· They are soft and small if anything…
· They are not hard to pass
· He loves fiber filled foods, loves beans, eats a lot of raisin bran, kashi, fresh fruit and veggies… drinks a ton of liquids….

But… Ok I am going along with the Xray… I trust her – she is very much wait and see – (which is also why the fact that she finally referred Holly meant something to me) We talked about his accidents at his 3 ½ and 4 year appointments…. she comes back…
Looking at the XRay
Dr. Brandt - “See all these white spots?”
“Yes…”
“Those are all stool”
“Really? But there are a bunch up into his rib cage”
“Exactly”
“Wow…. Oh wow… I didn’t even think your digestive tract could back up that far… wow…. “

The best and hardest part of the appointment - She got down at his level – she already is but really took him in her arms and looked him right in the eye and said - ”Hunter, this is not your fault. You don’t know when this is happening. It is going to be OK. We are going to help you.”
He literally leaped across the room and into my arms. And we just hugged.

HE WAS SOO HAPPY TO HEAR THIS! His face looked like the biggest burden had been lifted off him. I almost cried. I have not been as understanding as I should have been. I was at my wits end with 4-5 DAILY accidents, which seemingly had no pattern. He was like – "see mom you can still love me and not be mad at me. " Ugh – my heart still hurts thinking of this. He didn’t say it – but I just felt it. I mean I tried to be calm through this – but he knew how disappointed and how frustrated we were. The whole concept that they do this because they are too busy to stop playing - and we were trying to tell him over and over to listen to his body…

She drew out a picture for Hunter of the whole digestive tract…. She explained that stools were filling it up and that when he eats, where his food gets digested and where it the waste tries to go to dry out (he got this all – thanks to the Magic School Bus) that part of him is full past capacity and has continued to keep backing up further and further. Then, the liquid that does push past in the small areas is just expelled out. His body doesn’t even recognize it, because the nerves have been pressed on so much from the still that they don’t have the same sensation.

LIGHT BULB – when you would ask him if he was wet, he would grab his pants to check, he really didn’t know. I noted that in my original thoughts that it was weird, like there was no sensation…

Apparently some children with severe chronic constipation develop a blockage, past which liquid stool sometimes leak, causing your child to have accidents. This condition is caused encopresis. He doesn’t leak poop – but he has had a few “skid marks” occasionally – which was also a tell tale sign…. I look back to him a year ago with all the poop accidents…. They were all runny – geez – could I have caught this a year ago??????
Where we go from here.

She has prescribed Miralax for 4-6 months It is a prescription strength stool softener that is odorless and tasteless and well tolerated by most children. The diet is interesting because we do mostly this already… so it looks like the biggest changes will be severely decreasing milk/ cheese and bananas…. but the basic info was
· Increasing fluids
· Increasing fiber
· Increasing
· Decreasing constipating foods: Limit milk, cheese, etc.

We may (most likely will) have more accidents as his body clears out. Some of it may come at such a force, we may have poop accidents, because of this, we need to set a timer and have him go every 30 minutes. She explained that to him that he should have a SMALL reward for this. 1 M& M for every time he listens to the timer and gets up and tries – or a sticker chart for his skateboard, something that means something to him. He has to retrain his body to feel again. After a few weeks, he should be good to go just listening to his body.

Never would have gone there….. he has none of the regular signs

Hunter

An now on to H2

We are having major potty issues. He has never been the "perfect" no accident kid, and at times, I thought I would pull my hair out...

Then -
things would go fine - and I would think we are on track - and back and forth and back and forth

After reading everything under the sun about how normal this is - there were a few key things to look for - and I never wanted to find them - but here we are...

A change in pattern:
He is regressing to the point of having accidents at school - something he has never done before. He has been at that school since sept of 05 - so this is a definite change.

My thoughts are running to the more serious stuff - we just had an incident at my MIL daycare where another 5 yo boy asked a 6 yo to play games with his penis and said he would break his toys if he told.....

A little background

Holly has always been way ahead of the "developmental curves" you know you always think that is important - then well, you get a little wiser as a parent and as a person. Remember me being all excited about how well she did in her early childhood test? And a few of you were like, whoa hold your horses, it really doesn't mean much... Hmmm.... I guess as I grow as a parent things that I thought were great, were well, not such a big deal, and things that I thought were not a big deal, now are. But - her testing did play a part in the doctors looking at the big picture and needed to rule out the medical first.

1. Prior to a year -Early development - ahead of curve - walking (8 1/2 months, talking clearly by 11 months)
2. 13 months – serious fall and hit to the head - The double deep stitches right between her eyes
3. 21 months flu - when we couldn't get her fever down past 105 for over 4 days and she was hospitalized
4. 3 Early childhood testing - scored 99 out of 100 on all basic developmental tenets
5. 4 her head hit at the Y where 911 was called
6. 5 her concussion from falling off the back of grandma's couch - her not knowing where she was, not being able to walk
7. 5 again - all the falls last year where we finally did a CT scan again
8. 5 Multiple struggles in math at school and reading at home
9. 6 balance still an issue, short term memory issues – things that “should be there” all of a sudden not so. Much more so than just normal childhood regression.
10. Multiple struggles in math at school - she loves math, although is not performing at the same level as her "peers" (keep in mind she is one of the youngest in her class, sometimes by over a year) - I digress....
11. and reading at home and at school – same issues in French or English
12. Complains of a train in her ears
13. Complains of joint pain
14. She is doing wonderful on any verbal (French or English),
15. Long story short, her teacher and her reading teacher were really worried, after countless discussions it seemed like there was a definite short term memory issue.
    An example - She could read the cat is blue the next sentence would be the cat is red she would have no concept that she just read the cat is. The words did not look the same to her....
    That is a really basic example, and probably not the best, but there are many more that led them to think of the short term memory. Both her reading specialist and her teacher were not thinking just a reading issue.
16. Breaking point – bluntly asking the teacher – have you or any of the other teachers dealt with this exact scenario? Do you know what you are dealing with? Do you know how to help? It was a no from both the reading specialist and the teacher…
    They both WANT to help her – they are at a loss
    
    
    

1. We go into her doctor – again. These are issues that we have been discussing on and off for over a year. – So when I bring her in for the train in the ears
   Does neurological type exam – seems fine
   They do a hearing test - fine
   Do the tymphonic hearing exam (checks inner ear) this does work
   I think they did a vision test – but I am not sure of that. – I have some information on special vision testing as it relates to processing which I still need to follow up on
   Want me to wait another month, then get referral for further testing
2. A week later still complaining – really seems off – I figured that I waited over a year at this point, I thought I would just “get the ball rolling”
   Call the peds – get the referral –
3. 1st referral to a neurologist to make sure there isn’t any damage from all the falls, etc
   Does the exam – seems OK – mentions small possibility that this could be based on seizures
4. Refers her to MRI and EEG and Neuropsych testing based on exam
   Has MRI,- (there is nothing like sitting in the room while your child goes through an MRI it is so scary – you keep thinking about each scan and what it is seeing in her brain and oh the “places” you go) To me – this way 100X harder than going through a catscan for any of the head hits.
   Comes out fine – except – she has the sinus infection again.
   EEG – not fun for her –
   Comes out fins
5. Neuropsych testing
   Thought we would have to wait until July – got in right away
   8 hours worth of testing/meetings later - The full report will be forth coming within the next 14 days.
   The potential for a brain injury, as you know, that was the main reason that we went down this path. They did not think was the case, due to her scores on the PRI and PSI sections (see below), of course, they cannot say for sure; however, her scores are within normal limits...
   Also, there was no further evidence of any mild seizure activity, so that should be ruled out.
   What they believe she has is an emerging reading disability.
   · Her evaluation showed a 20 point discrepancy – from her IQ level and her reading achievement score
   1. (WISC IV test) – her current real ability (this can change over the next year or so since she is on the young side of taking this test)
   a. Verbal Comprehension Index (VCI) 95
   b. Perceptual Reasoning Index (PRI) 104
   c. Working Memory Index (WMI) 106
   d. Processing Speed Index (PSI) 94
   2. (WAIT III test) – where she is actually performing
   a. Mathematics 95
   b. Reading 79
   They recognized her attention issues and based on their observations, they did further attention testing
   · She didn't qualify as having ADD - they noted her active tendencies, but she doesn't meet that criteria. (close on one scale, but not enough)
   · They did say that they want her retested in 2 years as having a reading disability and attention issues can each cause each other to seem worse…
6. Where do we go from here?
   I spoke in depth with the neurophysiologist regarding the potential effects that being in an immersion school and having a reading disability.
   · She feels that can play a part; however, that that is not a reason for her scores.
   · She did not advocate removing her from the program. I would see that as an absolute last resort, since Holly enjoys it so much, is very proud of herself and is doing well with the verbal language.
   I am requesting that the school district get her in the mill for the testing (they may not actually have to test her since it has already been done, but I have to follow that process)
   · Largest recommendation from neurophysiologist was that we should make sure there is a formal summer program in place.
   · I am not sure if I can do that through the school - but I know that even if I make the request now, the district can take an additional 30 school days to even begin the testing, so I am trying to be proactive.
   The mathematics score really interested me, as you put down that she is still struggling with that. Granted, what the test requires them to know versus what Normandale expects, I am sure are very different.
   Speak with teachers, make sure they are continuing to challenge her, that because she has the LD label – that they don’t continue to challenge her in her other strengths. Work on selecting the “right” kind of teacher next year
   Breathe– as hard as this may be to work through it – it is something we can handle
   Most important – continue to focus on her strengths, look for outlets for her that increase her confidence and let her know that she can do what she sets out to do.