Official Diagnosis Today

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Registered: 03-28-2003
Official Diagnosis Today
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Tue, 03-14-2006 - 4:39pm

Hi:

Debbie here and am already posting here, but saw the pyschiatrist today who didn't want to label so quick but after talking to us, she said Stephanie has Asperger's, OCD, SID, anxiety and ADHD. It isn't a surprise to me for I read alot about it on the internet and on here and can see the signs. So far I am happy for what she suggested. Since she is homeschooled, medication isn't necessary right now until ADHD really gets in the way. For social help and for the other problems, she recommends Stephanie see the psychologist once a week. With our insurance, that would cost us $20 a week, so that isn't so bad but adds up. As for SID and fine motor skills problems, she is suggesting we send Stephanie to an occupational therapist. Does anyone else use and occupational therapist? I mentioned before that Stephanie has pain in the vaginal area constantly and the psych feels it is due to SID. Some kids feel like their skin is itchy or crawling and with Stephanie, it is being sensitive. An anxiety causes more of a desire to have to go potty and feel pain and the psychologist should be able to help with that. All these problems she has been having overlap. At first doc thought the type of epilepsy she has can make it seem like she has ADHD, but when we told her how she was before she was diagnosed with epilepsy, she feels that she does actually have ADHD. So that is the official diagnosis.

Debbie

Debbie, Mom to my "only" Stephanie

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Registered: 03-31-2003
Tue, 03-14-2006 - 8:51pm

Debbie, I've read some of your posts. It must be a relief in a way to finally have a real diagnosis. Now you can go forward with getting the help your dd needs. I have no experience with an occupational therapist so I can't help you there. But I hope the psychologist helps Stephanie and that the ADHD doesn't get bad enough for meds. Good luck. Hang in there. Let us know how Stephanie likes the psychologist.


Jackie

 

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Registered: 03-26-2003
Tue, 03-14-2006 - 11:04pm

Debbie,

Well I am glad you finally have some answers, though I have to say even though I KNEW, hearing the diagnosis was never easy for me. It was kind of that last hope of the possibility of denial going away. I had kind of a numb feeling at first then sadness. I guess I always hoped in the back of my mind that the doctors would tell me I was crazy and they would outgrow any troubles. How are you feeling about the diagnosis. Even when you are expecting it, even when you know getting an accurate diagnosis is the best thing you can do for your child, it can still be very hard.

As for OT, not only do I use one, I am one in a way, lol. My background is special ed specializing in autism (from pre-kid actually). I have been SAHM for 6 years and just went back to work. My friend is an OT and owns her own company. I am working for her doing OT work as an aide. They actually use me as thier behavior specialist. So long as there is an OTR or COTA present I can treat and they will give me the tough kids behaviorally and I do OT with them.

As far as the particular problems you are talking about (needing to pee and pain in the private area) that can be sensory related and stress related. I can ask my OT friend tomorrow. She is a SIPT certified OT (SI specialist). I am guessing that it could be a number of things and your daughter likely needs a really good eval. There are a number of sensory things that may be at play I think other than straight tactile sensitivity but I will check.

ALSO, how is her sugar intake and diet? Urination and pain there makes me think digestion. Believe it or not they may be related. Also, some kids with SI and ASD will have almost a diabetic type response to food even if not fully diabetic. My son is one. He used to wet himself often. He rarely if ever does anymore for the last year. In that time he had clinic OT for vestibular issues as well as others and he has gone on a no sugar diet. When he gets too much sugar and refined foods and gets stressed he will wet himself again.

My NT daughter also has loads of troubles like this at times. She would be uncomfortable below and wet her self. Then when it got bad she would also mess herself. It was encorporeasus. What happened was like a constant low level constipation where she couldn't go well enough so there was always pressure and pain in her private area and lots of accidents. Since adding fiber supplements, probiotics and digestive enzymes and adjusting her diet she hasn't had a problem really in a year. If she gets alot of refined foods and doesn't take probiotics she will constipate again quickly. The first sign is typically discomfort and wetting herself.

Renee

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Wed, 03-15-2006 - 7:02am

Thanks Jackie. The good news is that we have been seeing the pyschologist first for about 4 visits and he is very good and she likes him. When I told the neurologist about the pyschologist and how he is treating her, she suggested we also see a pyschiatrist for the official diagnosis. Then the pyschologist will see her again after the pyschiatrist. I think our last visit was in November for it took so long to get in to see the pysch because of the insurance.

We might not see anyone though for a month because I am having surgery on the 28th and I have to wait two weeks until I can drive, but we will get there. We also have to see if our insurance with pay for an OT; we pray they will because my medical bills alone are skyrocketing.

Debbie

Debbie, Mom to my "only" Stephanie
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Registered: 03-28-2003
Wed, 03-15-2006 - 7:37am

Thanks Renee for all your help.

I appreciate you asking your friend; that would help alot. She gets her 8 year check up soon and I want to ask the doctor about sugar and refined foods like you said. She gets her fair amount of this, but I don't think she overdoes it. The bread could do it though. She likes raisin bread.

It is interesting though that the psychiatrist mentioned about consitipation being a problem, but she goes regularly.

I'm sorry, but what does NT stand for?

How I am feeling - I'm not sure. I knew all along about these things so I am kind of getting used to it. I feel good that we are getting closer to getting her appropriate help. I am frustrated that this pain in the vaginal area is going on too long and so is DH. If that was solved, we'd feel a lot better about things. The bedwetting is becoming a pain as well. I'd feel a lot better too if we find out we can see an OT and that depends on insurance. I will call them today. I'll let you know how that turns out.

It is just something we have to do. At the same time, and I knew this would probably happen, I also have to deal with menopause shortly as I am getting a hysterectomy in two weeks and that means any chance of anymore children. I had to deal with second infertility 5 years ago and this will finish it. So there is a lot to deal with right now and I guess it is just apart of life. It is frustrating though, but hopefully these problems can be straightened out and we can get out of our rut and move on.

Let me know what you find out. Thanks so much.

Debbie

Debbie, Mom to my "only" Stephanie
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Registered: 03-26-2003
Wed, 03-15-2006 - 9:58am

NT = neurotypical or those with out neurological differences/disabilities.

Even if her diet is relatively healthy, kids with neurological differences can be much more sensitive to digestive problems than kids who are typical. Often a regular pediatrician might not have specialty in those kinds of areas.

There is an article that may help (going to get link now.....got it) http://www.asdrendrewolf.org/naturalremedies/archives/articles/avholiday.htm

THis may help explain some of what I am talking about. There are a series of a few articles by this lady on the website. If you need help finding them let me know. Julie is a friend of mine. Though I don't go to the extreme she does, I have found lots of the info helpful.

Pain in the private area and urgency to go combined with an ASD diagnosis when many kids with ASD have digestive difficulties, lead me to think that digestive issues may be something you want to explore.

An easy thing to try may be digestive enzymes too. Many folks use Houston's which are pricey but are good. I have been using Rainbow Light which are extremely high quality but much more reasonable. I get mine through a wholesaler so it is cheaper than the website but they are still cheaper than the houstons. With digestive enzymes I have been able to ease up a bit on the diet.

I forgot, I don't work today so I will have to check with my friend tomorrow.

Renee

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Registered: 03-26-2003
Wed, 03-15-2006 - 10:54am

I had something similar happen with my son when he was about 5. He kept complaining that his penis hurt him....he said this on several different occasions. We took him to the ped several times and had urine cultures run....never any infections. We finally figured out that he was actually having gastrointestinal pain/discomfort. I guess he could not distinquish where the actual feelings were coming from. He also said it was "pain" but it was more than likely discomfort....unable to actually gage the degree of sensation.

It may not be the same situation - it just reminded me of our experience....

Christie

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Registered: 03-31-2003
Wed, 03-15-2006 - 1:40pm

We had that, too, with our son. He kept complaining that his penis hurt, and after an exam, the pediatrician said that she thought the problem was constipation---and that sometimes kids with feel as pain in the penis (I don't know about girls). Sure enough, after being on Miralax for a bit, he stopped complaining. Who knows, really?

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Registered: 02-24-2004
Wed, 03-15-2006 - 7:29pm

Debbie,

I'm a little late in posting here. Things have been kinda busy around here. I just wanted to give you some hugs. I know getting that dx is difficult and alot to deal with.
Glad you are here though. There's lots of great support here.

michelle

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Registered: 03-28-2003
Wed, 03-15-2006 - 9:34pm

Hi Michelle:

Thank you so much; I really appreciate it. Yes, there is lots of support here and I am learning alot. I learned today too that another homeschooler in my area (that I know) has an Asperger's child so I am going to try to talk to her or email with her about it.

Thanks again.

Debbie

Debbie, Mom to my "only" Stephanie
Avatar for stephsmom98
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Registered: 03-28-2003
Wed, 03-15-2006 - 10:00pm

Thanks for your comment. I should probably try that with her. I know I get gas pains and it goes to the front area so it could bother her as well.

Debbie

Debbie, Mom to my "only" Stephanie

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