Autism Support Group

Hey guys.

(Shell,,,,i was gonna PM you but i just thought i'd let everyone know also)

I came back from taking my 21 mth old son to a behavioral specialist in S.A. Texas to see about an "official" diagnosis of autism and to ask questions. Docs here where i live are a bit behind in many areas. ANyways. I KNEW he was going to get a diagnosis in one visit. i just knew it. The paperwork i filled out while there explained how it takes up to 5 visits for a thorough observation to diagnose...but she gave it me in 1 hour.

Alex showed all signs so obvioulsy she was at a loss for words. He has high-functioning autism and hypotonia(low muscle tone prevalent in children with autism).She prescribed vigorous OT and speech therapy ASAP.

She did not believe or agree on the CFGS diet in my son's case as he hardly eats at all, and he would just starve if he did!

She did prescribe an EEG to be done soon to check for seizires as she scared me in saying a child can have many seizures in one day an dthe parents would not even notice!

I got the codes for his diagnosis for insurance purposes.

I just feel overhwelmed with all the therapies required. I know he needs them...it just a lot to take in.

MaMONa - What a relief it can be to have the "official" diagnosis. It still does hurt a bit knowing that there will be some struggles for your son.

I'm really glad that they ordered an EEG. It will not be an easy test for your son. The electrodes take a while to be put on and after they are on, it can be very difficult for a parent to look at their child without breaking down in front of them. I hope they do run a 24-hour test on him. My son's seizure activity was mainly during the night. His seizures are controlled very well by his medicine, Lamictal. When he has the electrodes removed, that can also be a difficult process and many times the glue to attach the electrodes ends up stuck in their hair or on their skin. I cut my son's hair very short when he has to have the testing done.

Let me know if there is any other information I can help with regarding the seizures and testing.

Take care of yourself.

Shannon

Shannon, thanks for the tip. My son has long hair. Do they have to inject my son with anything??? I also thought of not being able to see him because i would break down. Is he"awake"? during this???

Do you know if they are doing a sleep-deprived study or a regular one? They shouldn't need to inject him with anything (although having your child struggle while someone is trying to glue electrodes to his head can be quite difficult and you might wish they had ) For a sleep-deprived study, they would want you to have your child awake for so many hours before they do the testing. With this test, usually by the time the electrodes are all placed, your child will fall fast asleep since they are so tired.

They need to place the electrode as close to the scalp as possible, so with his long hair, it might be a little more difficult. You could also call ahead to the place where his testing will be done to let them know he has long hair and see if they have any suggestions.

If he has a 24-hour test, he will also have a recorder that is attached to the electrodes. Usually they ask you to record all of his activities (i.e. sleeping, watching tv, eating, etc.)

With my son, he needed a 24-hour EEG in order for his seizures to show, since his are during sleep. He began having seizures at 9 months old. When he was around 2 years old, the neurologist did a follow-up EEG, but only did the test for about an hour in his office - so it was daytime hours. The test ended up showing no seizures and he was taken off of his medication. However, due to that wonderful "mommy instinct" that we have, I asked for another test after he had some behavior changes and even more difficulty sleeping at night. So, a 24-hour test was performed and the seizures were found.

Anti-seizure medicine has come a long way. Justin was put on Lamictal and has tolerated it well. As you may already know, Lamictal can be prescribed as a mood-stablizer.

good information...thank youso much! I dont know about the session yet. I have to make the appt. soon. I will ask all these questions now. Thank you again. Mon

I am so glad he got the diagnosis hun this is now the start of your journey I am here each step of the way if you dont understand anything they say write it down abd ask me.

THe GFCF diet is not for everyone and has many know I do not agee with it.

seizures CAN be present in children with ASD but not all people with Autism get them I have never had one nor my children hun

There are many types of seizure ranging from a brief trance-like state to major convulsive seizures. An international terminology has been devised to classify them.

Partial seizures originate in only one localised part of the brain and may be simple partial seizures where consciousness is not lost or complex partial seizures where consciousness is lost or impaired.Partial seizures especially complex partial seizures may develop into a secondarily generalised seizure.

Seizures vary in nature as well as origin and for example complex partial seizures (sometimes known as temporal lobe epilepsy )may cause disturbed or repetitive behaviour such as plucking at clothing or lip-smacking.

Some seizures may be preceded by a warning or aura such as a strange taste, smell or sensation. This is in fact a simple partial seizure.

Generalised seizures affect the whole of the brain and the person becomes unaware of his surroundings.

Generalised seizures include:

absences,during an absence seizure which often start during childhood a person becomes unconscious for a short amount of time . They may look blank and stare or their eyelids may flutter

myoclonic(muscle jerking) seizures are brief but may happen in clusters often on waking up.

tonic(stiffening)if the person is standing they often fall without warning usually backward,

atonic ( or drop attacks), are caused by a loss of muscle tone and the person's muscles suddenly relax so that they beome floppy. They usually fall forward and may injure themselves.

and

tonic/clonicthe dramatic convulsive episode with stiffening followed by rhythmic jerking Confusion may follow as the jerking subsides. During the seizure they may cry out , they may bite their cheeks or tongue and their breathing may be affected.

For a more detailed explanation on this and other aspects of epilepsy visit the National Society for Epilepsy Website http://www.epilepsynse.org.uk/pages/info/leaflets/

USA links

http://www.epilepsyfoundation.org/

http://www.aesnet.org/

http://www.cdc.gov/Epilepsy/toolkit/resource_guide.htm

Thank you, Shell. I am glad you are with me here.