Finally Some Answers and Update

Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
Finally Some Answers and Update
5
Thu, 09-21-2006 - 11:53pm

Hi.

I am have been lurking and posting occassionally. I think when I introduced myself (not sure of my original post) I mentioned Asperger's, ADHD, anxiety issues and OCD. Over the last year, Stephanie (age 8) has seen a psychiatrist, psychologist and two occupational therapists. She is seeing a neurologist ongoing since diagnosed with epilepsy in 2003 when she was 5.

Ever since that time, we have been battling many issues and couldn't figure out what was going on exactly. But since then, we learned that all the professionals diagnosed her with those I mentioned above, but they couldn't agree which one was more of a problem.

We saw her neurologist several weeks ago. First off, she feels Stephanie is outgrowing her seizure activity and that's what we prayed for. She is weaning her off one of her seizure medications and so far we don't see any evidence of seizure activity and we are grateful about that.

After talking with us and Stephanie, the neurologist (who is the best in the area) said her main problem is the Asperger's. She can tell by observing her and talking with her. She does also agree with the others that she has ADD tendencies and anxiety issues. She wants to give medicine for anxiety and medicine to help her concentrate better, but not at the same time.

For now she has giving Stephanie Strattera to help with her paying attention with school lessons. She has been on the medicine for about three weeks now and I don't see big changes, but I think there is some. The occupational therapist helped as well by showing me how to stimulate her muscles and calm her down from sensory overload. I brush her arms and legs and then use lotion to massage her. After so many minutes of lessons (she is homeschooled) we get up and do more exercises using her muscles. She also suggested that Stephanie use a squeezy ball to hold while writing. Stephanie has very poor penmanship and the ball squeezing really seems to make a difference.

But there is more. I want to help Stephanie, but I am so exhausted by all these professional appointments. It sure wears you down. We stopped OT for now and I know what to do to help her as well as telling her the rules and following through and telling Stephanie just what to expect. But the neurologist now suggests speech therapy.

We saw a therapist last week and again today. She tested Stephanie and said she could definitely benefit from ST. Anyone else do this? She said she needs help with social skills and in interacting and having meaningful conversations. Both the ST and neurologist saw she acts more like a 5 or 6 year old in that area. She also suggested Central Auditory Testing to see what specific areas she could really use help on. The good news is the ST said she is good on vocabulary and knowing words and talking in full sentences using good sentence structure and use of tense.

I am exhausted and still plan lessons for her, hoping I am getting somewhere. Another reason for the exhaustion is fighting the insurance company. At first they tell me they will pay for 12 visits to the occpuational therapy, now they say they won't pay any. What's with that? They told me the hospital used a code which isn't acceptable. They said the code means this treatment is experimental in nature and that the insurance can't cover that. I called the hospital and they said it is basically BS and that the OT is not experimental. She said the insurance co. is changing their policy midstream. She said there are other families experiencing this and a respresentative visited the hospital to say they don't except Austism and Asperger's as a medical condition they can cover because it isn't an injury or health problem that is curable within 30 days. What?? I couldn't believe she was telling me that. She told me to get secondary insurance from the state and she heard they cover 100% and the ST told me the same thing. So we are going to try that. The OT advisor told us to write our congressmen and put pressure on insurance companies regarding Asperger's, Autism and probably Down Syndrome and similiar conditions. It is a real shame.

Well, I blabbed long enough. Sorry about all that. So that is our story so far. We are so hoping to resolve some issues and get some answers and not lose our apartment in the deal. The OT advisor is going to try to get our debt waived. That would be great if they could just write it off. She said she was going to talk to the administrator. If not, it'll be a long time before the hospital gets their money.

Take care.

Debbie

Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 06-25-2003
Fri, 09-22-2006 - 12:12am

Debbie,


Welcome to the board.


I'm glad the seizures seem to be resolving. That is good news.

-Paula

visit my blog at www.onesickmother.com
Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
Fri, 09-22-2006 - 12:27am

Thanks so much Paula. It helps to hear from someone who understands and has been there.

I am taking time out for "me" now :) I like relaxing on the computer, with TV or a good book. But it is getting late and I need my sleep too.

I really feel the ST will help. We learned our lesson with the insurance company and will fill out the paper ASAP. Well, DH wants to fill it out. I'll give him a certain time, if not, I will because we need it. I have a good feel about the speech therapist. She seemed to hone in on the problem areas immediately and it agreed with the neurologist.

I worry about not having this neurologist in the future. She is in her 70's already.

Yep, things are exhausting. I need 180 days of homeschooling and I calculated the weeks till the end of June and I can afford a few weeks off (not all at one time) so we are going to do one more week of school, then break for a week. We could use it.

Thanks again. I'll let you know how it goes.

Debbie

Debbie, Mom to my "only" Stephanie
Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
Fri, 09-22-2006 - 12:31am
Just felt the need to add. Although school just started for most kids, we have been going off and on all summer, so a break is sorely needed :)
Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 09-13-2006
Fri, 09-22-2006 - 1:28am

Debbie,


Did you ever find out why she kept saying she hurt "down there"?

iVillage Member
Registered: 03-26-2003
Fri, 09-22-2006 - 8:38am

Hi! Wow....you have got a full plate. I think ST could be beneficial to your daughter.....do they offer some type of social skills group at the ST? That might be a good thing to look into.

Insurance companies......I feel your pain. Vaughn's therapies are covered (OT, behavior therapist, and ST) but they are limited to about 15 visits per year (the OT and ST) and they have a $40 copay......boy, does that add up.

Christie