New Member Not Sure Where To Turn

[HaileysMom]

Hello,

I am the mother of 4 children. My oldest is 11 and the main reason I am writing. She was diagnosed with ADHD at the age of 5, less than a year later they added OCD, then not yet another year went by and they added Tourette’s syndrome. We have struggled to find the correct combination of medications for her. We live in a small town with very little to offer a child with special needs. We just received a new diagnosis last year of sensory integration disorder. Her counselor suggested occupational therapy and we tried for months to get her in but there is only one in our area and she was not able to take any new cases. The older my DD gets the more we have to play with her meds and at this point questions are being raised about possible Asperger’s. My head is spinning. I don't know what to do or who to ask. My second DD has my heart condition and I don’t feel that everyone gets the attention they need. I have two sons the oldest is 5 and showing severe signs of ADHD, I have cut out sweets and he drinks nothing but water and soy or almond milk due to milk allergies. I have heard that starting a child on ADHD meds can bring out the tics and I am worried. He will be starting K this year and they are pushing for him to start meds b/c eliminating sugar has not helped. I am newly alone my youngest is 6 months old and no one really understands what all we have to deal with.

Does anyone have anything that may be helpful that I can try for my DD and any suggestions for my DS to avoid meds or at least prepare for what's next? Anyone know anything about Asperger’s? Could it be possible that her symptoms were diagnosed as several different disorders when they may all fall under Asperger’s or does she really have all of these different things?

I have been concerned lately b/c she seems to really be sliding backwards. She forgets how to take a shower at times. She is unable to run a microwave or toaster properly. My 10 year old DD gets frustrated that her "big sister" can't do the things she needs to do to help out. My DD writes in note books, such random things not even words sometimes just numbers or letters, she counts all the time, and her tics are getting so bad lately that she has to sit sideways to watch tv. She has always had facial tics but now she has begun with full head tics that are making things difficult. She hates to even go to the store w/ me b/c she thinks everyone is laughing at her even babies or small children. She told her counselor that she wished she could kill herself. I am desperate.

But my baby plays the piano. She has learned so quickly, she has shocked us all. She is beautiful and so smart, but simply can't function some days. I hate myself for not being able to fix it or at least make it better. Really any advice would be great, even ideas on diets, or meds, or routines, anything..... Thanks for reading. I know it was long.

[Chemar]

Hi and welcome

 

firstly, just to let you know that if the Tourette diagnosis is correct, then having the other conditions is not unusual...in Tourette they are known as co-morbid conditions or disorders

 

Is there a family history of tics,Tourette, OCD, ADD etc or are your children the first to manifest these?

My son has genetic TS with all those co morbid conditions and he had horrible reactions to the medications so we started him on supplement/nutritional and other alternative treatments and it made a tremendous difference! If you look at the link in my signature below you will see what we did to help him.

 

Please do not allow the school to bully you into meds...they are NOT allowed to do that! I would suggest you look at the education guidelines section at the Tourette Syndrome Association http://www.tsa-usa.org for what you can do to get accommodations in school

 

Do your kids have a history of strep infections? I am not sure if you have heard of PANDAS which is often misdiagnosed as Tourette and is actually the result of streptococcus. You may want to look into that

here are 2 websites for more info http://www.pandasnetwork.org and http://www.pandasresourcenetwork.org

 

I also suggest you look at our helpful threads section for more info http://www.latitudes.org/forums/index.php?showtopic=2459

[HaileysMom]

Thank you for all the sites and information. I will look into each of them to see what more I can find. We have believed our Pedi for so long that we just did basic research on what he told us. Now we are getting to the point that we NEED an alternative, things are simply not working as well as they did at first.

 

Is there a family history of tics, Tourette, OCD, ADD etc. or are your children the first to manifest these?

 

I really couldn't say if there is a family history. We don't know of anything like this on our side, there are some mild cases of ADHD and OCD, but nothing more than that behaviorally. The TS and SID was a total shock to us. I was assaulted and became pregnant with my DD. So there has always been an issue of not knowing what to expect or what would be genetic. As for worrying that my son would have the issues as well, I suppose it may be unreasonable, but it scares me just the same.

 

Do your kids have a history of strep infections?

 

Yes my both of them have quite an off and on history with strep, kidney infections and such. DD just had a pretty bad ecoli infection in her kidney's last month. She spent 2 days in the hospital and then returned for 3 more days to get antibiotics by IV. I do believe we had tested for PANDAS long ago, but I will double check this week.

 

I have always noticed big issues with too much stimulation. We had to stop going to the fair. All the noise, people and flashing lights would send her into an almost catatonic state. It was like she wasn't there, but her body would be out of control with the tics. We threw a surprise birthday party the year that they were trying to diagnose her tics and it was the worst thing we could have done, we had to send every one away and she and I sat on her bunk bed and opened all of her gifts alone with just a night light. It was the only way to bring her down.

 

She does have a 504 plan in place at school, but I don't think it is enough. We are pulling her out of public school this year and placing her into a private school for the 6th grade. She hates change, but I really don't see how she could function in our school system here. We did a tour of the public school and they are in a new class for each subject and it is up to the student to bring the correct materials for each class. I know that is normal for 6th grade, but there is no way she could do it. They informed us that they would not be holding her hands. If she could not keep up they would recommend the special education class. I was furious, but we had been fighting the public school since K to keep her out of special classes so it really didn't surprise me.

Edited June 5, 2012 by Hailey'sMom

[evemac]

Hailey's Mom,

 

I am so sorry about your situation, and I would like to write not only as a mom of a son with Tourettes, but also as a Special Education teacher in 6th grade! Sounds like you have some accommodations under 504, but if there really is a possibility of Hailey having autism/Asperger's, you may want to go ahead and get the full assessment for special education. If she does qualify, there are more services offered (or should be even though you live in a small town) for her. A parent requesting testing from the district will have more force that if the teachers attempt to get the testing done, particularly since she already has other issues and if the 504 accommodations are not meeting her academic needs. If she did qualify, the district is mandated under federal law (IDEA) that she would be educated in the least restrictive environment; that is, she could be with all of her other classmates in general education classes, but she could get extended time, help with organization, etc. to help her be successful. I hate to hear when school districts are not doing their best to meet their students' needs, so please keep pushing! It is their obligation. As to Aspergers, the key to this disorder is: Does the child have social deficits?

 

As to the tics, if you are able, I recommend doing a blood analysis for food sensitivities. My son does take meds, but he avoids tons of foods which were determined as "highly reactive" including dairy, gluten, soy, pineapple and mushrooms. He also sees a chiropractor and goes to biofeedback once a week.

 

Hang in there; best of luck and I hope the absolute best for your daughter!

 

Eve

Edited June 6, 2012 by evemac

[HaileysMom]

Thank you Eve and I will look in to each of your suggestions. I will be seeing our pedi this Friday and will see what tests will be available and hopefully benificial to her.

My DD does have social issues. She has never really been able to form relationships with people. Evene in pre school she would spend her outside time walking the fence by her self or sitting quietly with the teacher. We assumed it was because it was the first time she and her sister had been seperated. They are only a year apart and have always done everything together. That was the first time they were put into a daycare that seperated them by their age. There previous school made an acception for them and they were in class together.

Sadly she never really had a loving bond with me either. She attatched to my grandfather as an infant. She does not like to be hugged very often and will only hold hands with her 5 year old brother when we go to the store or cross the street. She is not one that likes any kind of personal contact and that has always made me sad, but it makes her very uncomfortable and it hurt more for her to pull away. So we let her have her space and when she feels prompted she will give us a quick hug or pat on the hand.

When she started K other kids picked on her and when I went to the school to try and find a way to deal with it she said no mommy don't get them in trouble they are my friends. She protected the same kids that were pushing her down and kicking dirt on her. We had a long talk about friends not treating each other that way, but she doesn't like to hurt anyone's feelings or get them in trouble. On the same hand she has no filter when she says what she thinks or feels. she doesn't understand why people get offended.

Thank you again for all of the advice every one has given.

[philamom]

Thank you for all the sites and information. I will look into each of them to see what more I can find. We have believed our Pedi for so long that we just did basic research on what he told us. Now we are getting to the point that we NEED an alternative, things are simply not working as well as they did at first.

 

Is there a family history of tics, Tourette, OCD, ADD etc. or are your children the first to manifest these?

 

I really couldn't say if there is a family history. We don't know of anything like this on our side, there are some mild cases of ADHD and OCD, but nothing more than that behaviorally. The TS and SID was a total shock to us. I was assaulted and became pregnant with my DD. So there has always been an issue of not knowing what to expect or what would be genetic. As for worrying that my son would have the issues as well, I suppose it may be unreasonable, but it scares me just the same.

 

Do your kids have a history of strep infections?

 

Yes my both of them have quite an off and on history with strep, kidney infections and such. DD just had a pretty bad ecoli infection in her kidney's last month. She spent 2 days in the hospital and then returned for 3 more days to get antibiotics by IV. I do believe we had tested for PANDAS long ago, but I will double check this week.

 

I have always noticed big issues with too much stimulation. We had to stop going to the fair. All the noise, people and flashing lights would send her into an almost catatonic state. It was like she wasn't there, but her body would be out of control with the tics. We threw a surprise birthday party the year that they were trying to diagnose her tics and it was the worst thing we could have done, we had to send every one away and she and I sat on her bunk bed and opened all of her gifts alone with just a night light. It was the only way to bring her down.

 

She does have a 504 plan in place at school, but I don't think it is enough. We are pulling her out of public school this year and placing her into a private school for the 6th grade. She hates change, but I really don't see how she could function in our school system here. We did a tour of the public school and they are in a new class for each subject and it is up to the student to bring the correct materials for each class. I know that is normal for 6th grade, but there is no way she could do it. They informed us that they would not be holding her hands. If she could not keep up they would recommend the special education class. I was furious, but we had been fighting the public school since K to keep her out of special classes so it really didn't surprise me.

I do believe we had tested for PANDAS long ago, but I will double check this week.

 

Unfortunately, there is no definitive test for PANDAS. Some doctors will say it is not PANDAS if strep titers [ASO/D-Nase B] are negative or if you have a negative throat culture. That is not necessarily the case. Given their history with strep I would certainly look into it again. Plus, other infections may cause symptoms as well (PANS). You can post on the PANDAS forum for guidance if needed.

[mar]

I second looking into food sensitives or allergies with the tics.

Mar