So now it could be SPD???

by Tabitha
(Louisville, KY, USA)

My 3 year old has cried constantly since the day he was born. The doctors have had an excuse for everything ranging from acid reflux, stress, colic, etc... But have said that all of his behaviors were normal, age appropriate behaviors. These included self abuse, physically harming others, playing in poop, physically violent when you try to wash his hair or face, and so much more. We were sent to have his hearing tested since he wasn't attempting to talk by his 1 year check-up. There he was sent for tubes and speech therapy, where they decided he needed OT. The ot said he didn't have sensory problems b/c he could play with play-do (of course I have to constantly pull it out of his mouth). We were looking into autism or bi-polar, but still the doctors say he is normal. He was evaluated for school and received an IEP for speech and behavior therapy and a behavior analyst was sent to my home to help with the outburst. I told her everything that was going on and without even seeing him she said it sounded like SPD. She gave me the # to seven counties and weiskof. They want him tested for a sleeping disorder and eating disorder and SPD. The doctors have finally agreed that something is not normal and have wrote the referell for weiskof. We are not sure if he is not sleeping b/c of sensory problems or if it is something on it's own.


I had to put a lock on my kitchen door b/c he would get up through out the night and clean out my kitchen. I had a lock on just the refrigerator but he learned how to climb in the cabinets and broke the fridge lock. They are unsure if he is eating to satisfy the sensory issues or what. I also have a 5 year old son with some special needs as well; so as a single mom, you can imagine how full my hands are. I am slowly getting some progress but it seems like every time I think I will finally get some answers, I reach another dead end.

I fear for my son's safety, since he is unaware of dangerous situations. He has run in front of cars, beat his head against walls, puts everything in his mouth, gets very aggressive. I just need to know if I am heading down the right track or what I need to do??? I am so lost and confused, I just need answers!!!

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Dec 15, 2010
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weighted blanket and vest
by: Tabitha

I made a spider man weighted vest and blanket. The blanket ended up being to heavy but he loves it. Only a few minutes at a time and usually at bedtime. Not sure if it really helps him sleep since the melatonin doesn't even help. The weighted vest, he is determined it chokes him. The velcro comes about to his upper belly lower chest b/c I know how he is with buttons and zippers. So I took the weights out of the vest and put them in his jacket. He does really good with it that way for the first 20 minutes but then is bouncing off the walls beating his head on the walls and doors.

For Christmas, he is getting the indoor trampoline. Maybe it will keep him from jumping off the dressers and stuff. 9 more months before we can get a diagnosis but I am trying to do everything I can to help him now. I tried to explain to him that he was going to hurt himself if he keeps hitting his head, he just asks "why??" over and over.

Has anyone dealt with constant thirst?? He is constantly wanting something to drink and I feel guilty at night when I have to tell him NO b/c he has accidents at night at least once a week. But I figured out it doesn't matter what time I stop giving him drinks, but how rough bedtime routine goes. Should I continue to give him drinks constantly or limit drinks or what?? Try to talk to the doctors but all they are good for is writing the referrals to the specialist that take years to get into.

Nov 03, 2010
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1st counseling appt.
by: Tabitha

We went for my son's 1st counseling session. Basically all intake as the next few visits will be but I was relieved to hear that it's not my fault. My family helps alot as far as getting my kids on and off the bus so I can work, but emotionally they aren't the most supportive. They don't see his behavior, or you let him act like that, or it's only with you. But it's not. He is aggressive with anyone who tells him "no" or flips out when anyone washes his face or hair. I just see it more often. The therapist said she see's alot of sensory issues, he needs to be tested for the eating and sleeping disorder and sensory processing disorder, possibly bipolar but would be called mood disorder until he was old enough to be diagnosed and very well may be ADHD.

B/c the waiting list is at least another 8months for testing, she wants him to be seen by their special needs doctor to get a temporary diagnoses to get his OT back and to find a school that will help his needs. The fact that his school is "babying" him only makes matters worse for all of us. They will help me find a daycare that will not "kick him out" b/c he has an IEP for behavior and the 1st sign of aggression he is gone. The fact that he still is not sleeping well even with melatonin causes an alarm. It helps him go to sleep so much faster but he is awake several times a night, more than before. I basically told the therapist that I didn't want my child "doped up" that everyone jumps to medicating a child at a drop of a dime. I just want my child to be happy without being aggressive. She said that if it was bipolar (mood disorder) that medication is about the only thing that will help with the mood swings and the fact that melatonin isn't helping, they may have to look into alternate sleep medication.

I'm not thrilled that my son has so many problems but that I finally feel like there is a light at the end of the tunnel. That I didn't completely screw my child up, and the fact that we were finally going to get some help.

I know I ramble about alot but this is my way of relieving some of the stress I've been sucking up for years. It's just nice to finally get a few answers.

Nov 03, 2010
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WOW, ....NC DRS ARE GREAT!!!
by: ANGIE

WOW...I DONT KNOW WHAT STATE U GUYS ARE IN , BUT MY LIL GUY HAS BEEN DIAGNOSED WITH IT ALL!! THEY ARE COVERING ALL AREAS ...AUTISM SPECTRUM DISORDER, SPD, SELECTIVE MUTE, SOME DISORDER I FORGET THE NAME OF , WHERE THEY LEAVE OFF THE CONSONANTS OF THEIR WORDS, AND OH YEAH...SOME DISORDER WHERE THE PARENT TREATS THE CHILD LIKE THEY ARE FRAGILE AND THEY DEVELOP A COMPLEX THAT MAKES THEM FEEL VULNERABLE. LET ME SEE , DID I GET THEM ALL?? THE MAIN THING IS, THEY ARE ALL TREATED SIMILARLY!! AMOS COTTAGE IS THE BEST...IN WINSTON SALEM , NC. EVEN THO' WE DONT HAVE A DEFINITE DIAGNOSIS, I BELIEVE MY SON HAS SPD, BECAUSE HE IS DIFFT WITH DIFFT PEOPLE DEPENDING ON HOW THEY MOVE, IF THEY ARE LOUD,OR BOISTEROUS, THE TONE OF THEIR VOICE. WHO KNOWS WHAT ALL HE PICKS UP ON!!

THE MAIN THING IS , THEY ARE INTENT ON GETTING HIM ALL THE THERAPY HE NEEDS. ASKING ME ON A BI WEEKLY BASIS, IF THERE IS ANYTHING ELSE WE NEED TO ADDRESS. HE HAS MILD LOW MUSCLE TONE AND THEY EVEN SUGGESTED PT FOR THAT. LUCKILY , MY STEP MOM DOES THE THERAPEUTIC HORSE BACK RIDING AND THEY ALSO SUGGESTED THE TRAMPOLINE. HE , IAN, IS MOST CONTENT WHEN HE IS OUTSIDE RIDING HIS HARLEY DAVIDSON POWER WHEELS..HE LOVES GOING FAST!!!! HE WOULD RIDE FOR HOURS, AND HE LOVES SPINNING IN THE MUD. ALL THE THERAPY IS WORKING, HE IS BEGINNING TO TALK MUCH MORE AND IS SOCIALIZING BETTER. HE STILL HAS HIS LIL QUIRKS, BUT MOMMY ALWAYS SEEMS TO SMOOTH THE PATH, WHICH IS NOT NECESSARILY A GOOD THING THEY TELL ME. HE EVENTUALLY WILL LEARN TO FIX, OR ADJUST , TO THE THINGS THAT BOTHER HIM. HE IS COMING ALONG WELL COMPARED TO WHERE HE WAS 3 MTHS AGO!! THANKS TO THE WONDERFUL DRS AT BAPTIST, BRENNERS AND AMOS COTTAGE!!

Oct 30, 2010
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infections from scratching??
by: Tabitha

A few weeks ago I took my son to the doctor b/c he had sores all over the left side of his face. It started of like a bump and spread and became big nasty sores (oozing) within days. The doctors tell me it's emphintigo, it very well could have been a bug bite but if he's digging at it, it has caused the infection. I do not see him scratching but I cover it at bedtime and when he goes to school so he doesn't. This week, he is sent home from school for another bump. Completely different from the others, looks like a pimple. I have to take him to the doctors before he can go back to school. This time he has staph on the right side of his face. The poor baby has scars on the left side and now this. Only 2 days off the antibiotics and back on he goes.

I asked the doctors, what can I do to keep him from scratching. I tell her I do not see him scratching so he has to be doing it at bedtime. I asked her what else could cause both of these infections, she says he has to be scratching at some time or another. We have tried gloves but he takes them off, chews on them, etc... I have let him pick out gloves and am going to try yet again to put them on tonight. He has arm braces from the hospital; they put on him when he was pulling his IV's and O2 out, it keeps him from bending his arms. I thought about using this but with him already not sleeping well (even on meletonin) this will make matters worse. But is it worth the cost of him not getting anymore infections??? Isn't this a form of restraining him??? Urgggg, so many questions, not enough answers. We start his counseling Tuesday, but have yet to hear from Weiscoff, other than they received his referral ( a month ago) and will receive the packet when they send it!!! Any suggestions?????

Oct 26, 2010
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reply to Jennifer
by: Tabitha

Thanks, we are waiting on weiscof center to send the paper work. We do have a trampoline but he refused to jump on it if anyone else was on it. He is getting better about jumping with his brother and my 2 year old niece, they are about the only 2 kids he plays with (when he's in the mood) I was looking at an indoor trampoline with handle bars for maybe christmas but it depends on money. I have videos of him spinning in circles and screaming for fun, for hours at a time.

He is getting to where he is hitting for fun. Not out of anger but b/c he is bored or wants something. He punches or kicks you until you answer. I have tried to ignore it and then explain to him that if he wants my attention he needs to be nice, but then he gets angry and becomes violent. I'm not sure how to handle this. I walk away but he follows me, punching me in the butt. I put him in the room but that turns into a war. I try to calm him down but I have come to the conclusion that this behavior has gotten him what he wants at school and with papaw! The teachers have told me they do everything they can to keep him happy b/c they don't want him to have an outburst. There should be a way of preventing the outburst without bowing down to him when he says "me want a drink NOW!!"

Oct 25, 2010
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My daughter
by: Jennifer

First let me say you definitely need to be evaluated by an OT who specializes in SPD. It can make a huge difference. Also, jumping (like on a trampoline) sends signals to the brain and really helps children to regulate. Getting him on a trampoline is key! I've written a post about being in the same situation as you.
http://babyminding.com/2010/10/25/the-special-needs-child-jacquelyns-story/

Oct 24, 2010
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reply
by: Tabitha

I can try to give you some ideas, but it seems like you have gotten alot further than I have. His speech therapist helped alot. She said as long as he wasn't obese that I shouldn't worry about him eatin so much but try to limit the snacks to healthy foods, like baby carrot sticks or apples, etc... The doctor said it was fine for mine to have melatonin b/c it is a natural herb that your body produces but it helps to kick it up a notch basically. He still doesn't sleep through the night (tossing and turning and looking for food) but the fact that he is asleep before 11/12 is a miracle for me. I would call to make sure before trying it, like my son, I had to be sure it was ok with all of his other meds. You do not need a referral for 7 counties, they are basically counseling sessions to see how your child interacts with adults and children and can give you some advice of where you need to go to next.

As far as how much a child should be eating, my 5 year old has severe allergies and an extremely picky eater, he went from being off the charts in weight to 40 percentile; where as my 3 year old doesn't look obese but will eat 100$ in groceries in 2-3 days. Ask your ot for a teething ring, it's for older children and gives them the stimulation they crave (usually why they put everything in their mouths) of course my son eat his the same day, lol.

The behavior analyst says that children with SPD do not know how to soothe their selves, they could cry for hours at a time and not know why or how to stop. I am trying to be more patient with my son, it's tough when he's biting you until he draws blood, but basically patience is the key to all of this.

As far as eating, with the acid reflux it is hard for a child to know when they are full, they are just trying to make the tummy ache go away. There are alot of things that have acid in them that most people would never imagine. Limit the milk and juice, water before bedtime with ease some of the night time fits. try small healthy snacks between meals if he is wanting food. But for the most part it sounds like you are getting somewhere. It seems like you will never get the answers that you are looking for but it has taken me 3 years and slowly we are getting some progress. He is having more "good days" only a few fits, and smiling a little more. I've noticed he is playing with another kid for a minute or two, although that doesn't seem like alot, it's more than before and any improvement is proof that maybe I am doing something right for once. Hang in there and keep pushing the doctors, they won't do anything unless you make them!! Good luck, I hope you all get the answers you need to help your family.

Oct 23, 2010
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Eating and Sleeping
by: Mike

I have a 18 month old boy that hasn't been diagnosed yet but me and his mother think it may be SPD. I can relate to the idiot doctors and the lack of effort they display. My son never gets more than 8 hours of sleep waking anywhere from 4 to 8 times per night for various lengths of time.. He has slept with us since he was born in order for us to get any sleep! We have noticed that he eats ALOT! He cannot yet help himself to food like your child but maybe you can give me some insight. He eats 6+ meals a day. Example: he can eat 1 and 1/2 peanut butter and jelly sandwiches for a meal. This seems like alot for a 18 month old child. He seems to eat alot at every meal no matter what it is. He demands more all the time. But he cannot communicate properly so it comes out as crying until we offer more food. When did your child start eating more? Do you sleep with your child too?

Our child has had many issues since birth. reflux (still takes prevacid), tongue tied, eye muscle surgery, ear tubes, milk protein intolerance, global delays, sleep association disorders etc..

Our son started walking at 16 months. He started OT,PT, 1 month ago and speech therapy this week.

He has been to the neurologist and given a MRI with normal results. The GI doctor has set up a upper and lower scope for Monday. He seems to be having stomach issues due to the night time arching and fussing. He also has been scratching his stomach to the point of drawing a little blood. The sleep doctor said he can do nothing until his GI issues were worked out.

I know i am giving you alot of info, but we feel like you may have gone through some of the same issues. Its hard when you feel like you are alone.

-Mike-

Oct 20, 2010
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continued from above
by: Anonymous

So I call the doctor to explain that he is becoming more dramatic at bedtime, to the point that he is terrified to go to sleep. He says "me scared of dark!" the light is on, I'm sitting right next to him, patting him, etc... The doctor calls back and says some kids have a hard time with time change and the sun and blah, blah, blah. Once he gets used to it he will go back to his old sleep habits. I go on to tell her, he is 3 1/2 and I can count on 1 hand how many times he has slept through the night, I can count on 1 hand how many nights it has taking less than 2 hours for him to "fall" asleep. It's not a recent issue, it's just progressing and I want to know why my son is scared to go to sleep. She asked how many hours is he sleeping, I told her on a really good night, maybe 8, on a bad night, maybe 3 or 4. She asked if I had tried benedryl. By this point I am aggregated, I'm working on 4 hours asleep yet again, but I really wonder why these doctors call me back without even looking at my son's chart.

He was on benedryl for 2 years, but was switched to singulair AND zyrtec, there for CAN NOT be given benedryl unless it is an emergency, plus it makes him bounce off the walls. I have not given him medication b/c it makes him hyper and less sleep. She then mentioned "melatonin" or something like that. I asked if he could take it with his other medications, she finally said yes. These are the same doctors who wrote the referral for an evaluation for eating disorder, sleeping disorder, and sensory processing disorder. Not b/c they suspect it but b/c the therapist have requested it.

UUUUHHHH Why does these freakin doctors think I am an idiot. I don't know about everything but if my son had a few restless nights, I wouldn't be trying to get something to help him sleep. He had had years of not getting enough sleep. At every physical or sick appt, or anything; I tell these people he is not sleeping, he is eating constantly ( I feel guilty b/c I won't let him take food to bed) yet everytime I go in to check on him, he's bouncing off the walls with food in his hand. When I take it from him, it's another hour of screaming. Then when I get up at 430am he has food in his hand and all over his face. They wanna ask, how do you know he isn't sleeping through the night? Ummm, the food, the fact that he is running through the house and I hear his little feet stomping, when I wake up and he's sitting next to me with a remote in his hand watching t.v. eatin a pop tart.
Anyways, my question... has anyone tried this melatonin?? Did it help??? sorry about rambling, tired and aggravated.

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