Kathy and Ed

by Ed Clark
(Norwood, Pa USA)

13 Year Old Son, In pre-k his teacher told us she believed he had delayed gross and fine motor skills. We said "How dare you",She Pointed us to early intervention so he wouldn't be lagging behind other kids his age when he entered Kindergarten.That worked out well and he seemed to be able to keep pace in development but always was the smallest, the slowest,and the one who finished last in physical challenges, if he finished at all. Had lousy eating habits and his pediatrician said to feed him healthy foods and he would eat it at some point when he got hungry. WRONG, he just wouldn't eat anything, finally they said give him anything he would eat just to get something into him.


Had him Evaluate ed at Childrens Hospital in Philadelphia. They had a full study team evaluate him for eating issues and concluded that he had poor eating habits that may or may not be food allergy related or tactile influenced.By the way in kindergarten he was evaluated as being a genius intellectually and the school let him get away not having to do most of the physical activities because of his intelligence. After Childrens Hospital eval he started physical and occupational therapy. He also received it in school, both kindergarten and grade school. At some point in school he started saying clothes didn't feel right, all tags needed to be cut off. Eventually he was allowed to wear sweat suites as they are the only thing that doesn't bother him. He's afraid to walk near railings on second floor of malls yet he can ride all the thrill rides at amusement parks. Had him take swimming lessons at the local Y but to take a bath or shower the water hurts or feels like pins and needles. Played organized soccer,baseball and bowling for a few years but he became embarrassed because he lagged behind other kids," Who can be mean". We let him drop out. He reads constantly and will finish a book in a day.

We pulled him out of mainstream school in the middle of 5th grade and now he does cyberschool. The school district was extremely happy because they wouldn't have to deal with him or his doting parents. He has asthma and numerous allergies and we were constantly battling with them to make sure he had access to his rescue inhaler and nebulizer. Had to file and get special permission for the right to carry an inhaler on him during the school day after the school nurse said he wasn't having an asthma attack and wouldn't let him use his rescue inhaler. 1 hour later we had to go to the school and take him to the emergency room to be treated for the next 4 hours to control the attack.

His handwriting is so bad that in 5th grade an outside evaluator told us that he probably will never write with any proficiency and would probably need a laptop to take notes. He can type 65 words a minute. He is currently finishing 7th grade with an average of 100 in all his courses.

His food variety consists of fast food chicken, cheeseburgers, Frenchfries, Mozzarella sticks,Pizza but only from 2 pizza shops,Chocolate frosted donuts, Milk with choc carnation in it ,and waffles. Smells can cause a meltdown so going out for diner is almost nil. Stress can cause a meltdown and if he can't get it under control a good day can go right down the drain. His doctor says that he believes that as he goes through puberty his internal "wiring" will straighten out. He goes to OT and PT every week. Take piano lesson which can sometimes be an issue because he's a perfectionist. He knows he has these issues and says he just wishes he were a normal kid.

His newest challenge will be dental. Just had dental work done, not a real treat as he "melted " having a a cleaning and 2 fillings done. will need braces. My wife has read everything she can get her hands on and seems to have a grip on dealing with it, I on the other hand have a hard time with it because if you look at him he looks like a normal kid. Talk to him and you can have an extremely normal and intelligent conversation. He play video games. Watches the tv shows kids his age watch. But to get him to do some things its a brick wall and at time I believe he uses it to get out of doing thing he doesn' want to do, only to find out later that it was a sensory thing and I'm the jerk or bully. I hope this site helps shed light on what my son is going through.


















Comments for Kathy and Ed

Average Rating starstarstarstarstar

Click here to add your own comments

Jan 27, 2012
Rating
starstarstarstarstar
New developments
by: Kathy an Ed

So after years of living with unexplained issues. Of doctors saying "he'll outgrow it", of family thinking we were over protective parents. Of thinking he was using the SPD as an excuse to get out of doing things. We may be on our way to an actual answer. At the advice of his physical and occupational therapist's, who he sees weekly.We had him tested for any thyroid problems and low and behold his test results showed hypothyroidism. All the results aren't in yet, waiting on antibody results to tell if its Hashimoto's related hypothroidism but the endocrinologist at CHOP are sure enough to start treating now. He's been on meds for three weeks and as of right now the resulting effects are astounding. They aren't taking any credit for anything yet but saw enough to tell us to see a dermatologist. Went to A I Dupont Hosp for children and they are under the opinion that alot of his sensory problems are associated with the thyroid. They put him on Meds for a three week period until the thyroid med kicks in.

Were still in a transition period but we have seen a difference that is so dramatic it boggles the mind. Others have seen the change also. Thyroid symptoms in children are not the same as adults.Were not sure where this is headed but after years of uncertainty of what were dealing with could all be coming to an end.Maybe the pediatricians were right with "he'll outgrow it" Maybe the hormones of adolescents kicking in have changed things. Or maybe 2 therapists have put us on the right course. His endocrinologist feels that if we get his thyroid numbers right then alot of the other things will correct themselves. Were keeping our fingers crossed. He gets his levels checked next week to see if the dose is right. We hope were on the right course.

I know for many of you, this isn't the answer but I just want to say keep an open mind and follow your own feelings if things aren't right. you are your childs advocate so don't leave their lives in the hands of one professional who professes to be infallible. We had to force the thyroid test and his pediatric group was shocked.
Hypothroidism isn't a childhood illness. Thanks for listening. Kathy and Ed

Jun 26, 2011
Rating
starstarstarstarstar
Red Ears
by: Kathy and Ed

Not associated with allergies. We take him to the allergist and he's been tested for all kinds of things. Has mild reactions to some things. Allergists says some things have no rational answer. I will check out the book. Thanks for you comment. Ed

May 28, 2011
Rating
starstarstarstarstar
Red Ears
by: Cara

Doris Rapp mentions the Red Ear problem in Is This Your Child? It is a possible allergic reaction. We have found it in our now 9 year old son. Get that book from the library, see if it helps. It has done a lot for our family.
Good luck!

May 17, 2011
Rating
starstarstarstarstar
More Info On Our 13 year old son
by: Kathy and Ed

Some other things in his early development that I wonder if anyone else has dealt with. From about 4 to 7 years of age he had night terrors. If you've never experience this it's a real treat. Your child experiences a nightmare and acts out as if it is taking place, you as a caring parent try and comfort and sooth them only to find out that there isn't any communicating going on. It ends on its own. Doctors comment "he'll outgrow it ". Another thing he experienced with no explanation was that his ears would get red and hot. We would have to put cool towels on them to cool them. No fever, no explainable medical condition. Doctors looked at us like we had 2 heads. Luckily that went away after a few years. started at about 3 and ran on and off til about 9. We live in the Norteast part of the US and believe it or not we run our central air From March until November and a window unit in his bedroom the rest of the time. He says he always feels hot and his normal body temp is 97.5 . Anyone else have any experience with this.

May 09, 2011
Rating
starstarstarstarstar
A Question
by: Kathy and Ed

Do you mean something such as aspergers ? We have been dealing with these issues since he was about 5. No one has said anything about an underlying condition.We've brought it up to 2 different pediatrician groups and every therapist he's ever been to. No one says anything except that physically he lags behind but intellectually he is far superior than his peers.

May 09, 2011
Rating
starstarstarstarstar
SPD consequence?
by: Anonymous

In many cases, SPD is the consequence of a primary disorder, in which case you need a diagnosis for an overview on how to regard and treat related disorders.

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to SPD checklist.