What can I expect for my child? SID and autism

[MomwithMS]

My daughter is almost two. We had an early intervention service evaluate her a couple of weeks ago. The therapist who came to our home said that Avy showed classic symptoms of sensory integration disorder, which likely resulted from autism. We are in the process of setting up evals and likely occupational therapy. When I looked up SID and autism on the internet, I sat there in awe. . .those sites described my daughter to a T.

Today, we met with our new pediatrician. Avy was SO incredibly spastic (which is the norm for her) we left the office with an Rx for attarax. The doctor said it will hopefully help her calm down and sleep some. We made a change in her bedroom (converted her crib from a crib to a toddler bed last week, and it has been pure misery every since. . but she was climbing out. I was afraid that she'd be hurt from falling).

Since we made that change last week, Avy has NOT slept more than four hours per night and ZERO hours per day. She cried today for more than SIX straight hours and absolutely nothing comforted her.

Anyway, her pediatrician said that her symptoms were too severe to just wait for the early intervention program (through the health dept), so we are getting a referral to the JD McCarty center for a thorough evaluation.

I don't know to expect. . .Avy was an EXTREMELY easy baby. She rarely cried, and she never really wanted to be held or cuddled. But as a toddler, she is very, very irritable. She spends the vast majority of her waking hours in a wailing/crying state.

I've started signing with her, and she seems to do much better with a combination of words and signs. . than words alone.

I can't say for sure that she's autistic b/c I don't know. . . but the therapist and pediatrician certainly thought so.

The ped also mentioned that she will need to be medicated by age 4, or we will have absolutely NO control of her.

Does anybody has any great words of wisdom??

Thanks

[alltheanswers]

Hi MomWithMS,

Well unfortunately I'm going to have more questions than answers right now because a little more info would help me, at least, understand your situation. One thing right off the back is that I commend you for recognizing these symptoms so early on in your child's development. I could only wish we could have done a diagnosis back when our daughter was that age. We didn't see it until she was amost 4 years old (diagnosed riginally as PDD-NOS and then Autistic and ADHD).

The good news is that due to your diligence and early intervention, I believe your daughter has a very good chance of controlling this thing with the right programs. What are the "right" programs? Well, that's where a little more info would help.

1. What things are you seeing that make you and your ped/therapist believe she has SIDs and is autistic specifically?
2. What type of foods does she normally eat?
3. Do you see ADHD (attention Deficit Hyper-Activity Disorder) symptoms as well? How is this distinguished from a normal activie 2 year-old?
4. What seems to cause her to have her meltdowns? When she doesn't get what she wants? When she's trying to communicate something to you but can't get you to understand?
5. Does she point to things that she wants?

I'm not one that necessarily agrees with your therapist that she's ultimately bound to have to take meds to control her behavior and hyperactivity. I'm not sure if you can have her blood tested for certain deficiencies at her young age but if that's an option, it may be a good idea because you may be able to avoid meds if you can supplement her deficiencies with vitamins or other supplements.

More later as we learn more of your situation.

[rids]

I would surmise that she is some type of pain, probably from an intolerance to something she is eating ( or many things)- as to why she is wailing much of the day. A proper diet that is casein & gluten free, along with no artificials, plus vitamin supplements should be trialed before meds are even considered.

[Mommyof4]

I can totally relate. My son will be 2 in July, has a definite SID diagnosis, and has been on Atarax for 2 months now. We have noticed a huge change with this medication!! Garrett is very spastic and the only thing that has really helped that is brushing therapy. When we brush him, he seems to calm down almost immediately.

We are going to a Dev Ped in July as he is showing serous signs of PDD. One of the things I have found is the need for routine at bedtime. He gets a bath, the Atarax, and brushing. By that time, he is ready for bed and sleeps so much better.

We went through allergy testing and he is GFCF but I have not noticed a change. I wish you the best of luck trying to figure out what is going on

[BetsyAnn]

My heart goes out to you. It is hard enough to deal with a toddler, especially one who is not sleeping and is going through some difficult times, but to be doing it with MS, wow, how exhausted you must be.

I can really relate to the sleep problem. My son learned to crawl out of his crib at Christmas so we had to but him in a regular bed. We went all of January with no sleep. I thought I was going to die.

The doctor prescribed Tenex. It helped tremendously. I am certain this medication saved me from a nervous break-down. He slept very well compared to what he had been doing. He only took the tenex at night but it made him really mellow the next day. He also wanted a nap each day while he was on it. While these daytime effects were nice for a very sleep deprived mommy, I did not like them in general--my son is not overly aggitated or hyper in general so I did not like the sedating effects.

I am glad that we were given this prescription. It did not solve all of the sleep issues but it made it so we could function. However, we no longer use the Tenex. In April my son started on the Casein Free diet (which I do not think I could have handled if we had not been having at least some sleep-so again I am grateful for the Tenex.) After three days of being completely casein free he slept soundly for the first time in his life. He has been sleeping great ever since then except when he has had a few dietary infractions.

You said that you are signing with your child. I just wanted to mention that I had great success with the Signing Time videos. My son was only using a few signs when I purchased them last fall and he had to have alot of prompting to do so. In under 2 weeks he began signing spontaneously and he was using over 30 signs.

I wish you lots of luck and lots of sleep.