Please Help...Dont know how to cope.... - Autism Spectrum Message Board

rywilli25 · 09-21-2004, 10:23 AM

Hey everyone i really need to vent. I am so upset right now. I am having one of those days where i just feel lost and dont know what to do. My ASD daughter is having a really bad day today. She has cried almost all day long. I am so lost as to what to do to help her. I feel like i have tried everything and nothing is working. I read all the wonderful stories of sucess and it gives me hope, but at the same time it makes me so upset. I would give anything to see some improvement. My baby girl is almost two years old and cant walk, crawl, or stand. She only babbles and spends most of her time crying. It is so unfair and i keep trying to help her but nothing is working. She is underweight and has very dark circles under her eyes. We have eliminated food allergies and have her on gf/cf diet. I kept a journal for six months and found no correlation of food or supplement intollerances. I have her on NO-fenol, calcium, nystatin, Grapefruit seed extract, digestive enzyems, periactin (for allergies), CO-Q10, Nu-thera, cod liver oil, and zinc. She recently had hair analysis done and it came back high in cadmium, aluminum, arsenic, antimony, tin, and off the charts in bismuth. Her mercury levels were the lowest of all, but her doctor thinks she is mercury toxic. Her minerals were all over the place. Zinc was very low. I have been supplementing with zinc for a while. NO doctor has ever been able to tell me what is wrong. She has had MRI, EEG, Chromasonal testing, Prader-Willi, Angelmans, REtt's, Fragile X, supplemental Neo-Gen, Organic Acid. EVerything normal. She has been diagnosed with an Autistic Spectrum Disorder but nothing specific. We are using PCA-Rx for detox right now. I have been using it for a little over a week with no behaivoral improvements. I feel so hopeless everything i try with cayla doesnt work. Our next step is to see a neuroligist which should have been done a long time ago but we have terrible insurance and no money to pay for it on our own. I really dont want her on any anti psychotic drugs but i am thinking we are not going to have a choice. I just keep thinking that the PCA-Rx will kick in and we will see some improvements. I long for her to reach out and want me. Just one kiss or hug. I hate autism. I hear people talk about how we have to accept it and I just feel like i cant. I dont want my daughter to be this way forever. I cant give up until I fix the problem. Sorry for the long post i just dont know what to do anymore. Another thing is she will only eat a couple of things. I took her off baby food because we couldnt afford it anymore. She will only eat pureed foods so I have to blend everything. Right now all i can get her to eat is peas. I know that sounds weird but she loves peas. She has yeast issues so no fruit is allowed. She will take the baby food chicken in her peas. I have tried everything, potatoes, green beans, carrots, sweet potatoes, squash. She just spits it out. SOOOOOOOOOOO Frustrating. I was thinking about taking her off the gluten diet and just keeping her off of the things she is allergic too. she has been gf for 4 months with no results. Thanks for letting me vent.

rochelle mother to Cayla 11/22/02

concerned grand · 09-21-2004, 12:29 PM

Hi,
Sorry ! My granddaughter is 8. She has PDD/NOS.
She doesn't talk -only with sign language. Structure is very important to her. She is in school and doing good for her. Sounds like you are doing everything you can. IT WILL GET BETTER! My granddaughter didn't look at us or want you to hold her for the first few years. But now she gives you kisses and sits on your lap alot. For those who don't know --THIS IS A BIG IMPROVEMENT
Hang in there- if you need to talk -feel free !
Concerned Grand

redflowers · 09-21-2004, 01:50 PM

Rochelle-

I'm so sorry for what you're going through. My son was the same way for so long. It was horrible, and I thought I'd lose my mind. The real turning point for him came with ABA therapy. By teaching him how to attend and providing means for him to communicate his wants and needs (he began pulling me to things and pointing), the therapy really helped relieve much of his frustration. It got even better when we removed dairy. Now, one year into therapy, the change in him is amazing.

Have you read the book The Boy Who Loved Windows by Patricia Stacey? Her son had many motor issues along with his autistic tendencies. She used the floortime approach, OT and Speech and I believe dietary intervention and he has recovered. It's really an inspirational book. She's not big on ABA, but it didn't appear she knew much about it, basing her opinion on comments from two people. However, she had great success with Floortime. And, it sounds like your daughter has several OT/PT issues. Do you have help with her through Early Intervention yet? Also, you may want to check into RDI -- Relationship Development intervention. CHeck out books on this approach, which is having huge success, by Dr. Steven Gutstein.

ABA isn't for everyone. We've seen tremendous results, however I believe parents have to choose the therapy that makes the most sense for them, whether ABA, Floortime, RDI, TEACHH, SCERTS or school programs.

I wish I could be of more help. You'll find your way. It sounds like you are really on top of the biomedical stuff. Did you see any change with the diet or any other supplements?

Good luck. Keep us posted. You're in my prayers.

redflowers · 09-21-2004, 01:52 PM

I just thought of something else. It sounds like you desperately need a break or at least assistance with your daughter. Noone can do this alone. Our state funds personal care attendants (PCAs) to assist parents with disabled children. You might want to check into your state's medical assistance program. I know many parents who have PCAs full time. It is a huge help to their families.

rywilli25 · 09-21-2004, 02:35 PM

hey thanks for the replies I would really like to get cayla into ABA therapy. I have early intervention that come over every week for OT, PT, and ST. They dont recommend ABA They like the floor time approach. I dont think this approach is working to well for Cayla. I really want to get her into ABA, but cant seem to find anyone in Oklahoma that does it. Cost will also be an issue because she is on Medicaid right now. I put a call in to OSU tulsa to see if they had any grads that are interested in doing ABA therapy. I hope they call me back. The one supplement that has really worked is the Cod Liver Oil. When we put her on it at 13 months old she wasnt looking at anyone. She does have eye contact now and will follow me through the room. She just cant express herself. STill stuck in that shell. I am thankful that we have the eye contact because i know so many parents do not have that with their children. Thanks for the support I really need it sometimes. I know I shouldnt complain I have a beautiful little girl. redflowers was your son regressive or born with autism. My daughter was arching back and neck at 3 weeks old . I beleive the flu shot i had at eight months pregnant had part to do with it, but that is a whole other issue. Anyway thanks for the reply, and good luck with your son.

rochelle