My Son Seems to Be Worse and I Feel HELPLESS!!

Updated on June 17, 2008
P.B. asks from Whitehouse, TX
40 answers

My son has been diagnosed with Asperger's Syndrome (mild autism) and he has seizures. He was very bright until about a year and a half ago. I feel that his seizures have literally "wiped out" past learning (reading, math, etc.) from school. He read words at 4 that he can't even recognize now at almost eight.

I have noticed lately that he seems to be having "drop-seizures" when he is overly tired. I have called the doctors (neurologists, pediatricians, etc.), but they can't get him in for at least a month or it is not their specialty.

I have been told one thing by one doctor and then something different by another and I have been dealing CLOSELY with this part of my son's disorders for 1 1/2 years. I feel like pulling my hair out.

Logan's IQ tests are too high for him to be exempt from the standardized tests at school, but he hasn't the reading skills to even attempt them. For this reason, he is being held back in the 2nd grade. [more hair pulling!]

I need some encouragement and advice. Whatever anyone wants to give me that will get me out of this "slump" and over the "peek" of this situation.

Thank you in advance for your words and prayers. <><

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So What Happened?

Well, we are printing out the responses you guys gave so we can highlight the helpful ideas that we will be looking into further. Thank you all for your advice. I may be messaging some of you for more info on what you told us.

Some of the info you guys gave was stuff we had heard of/tried/etc. But some was new and of much value. Thanks ya'll for all your suggestions. Since we are in the summer, we are waiting until school starts to look into the issue of holding Logan back. If we can prove the need, they are allowing us to move him back with his classmates up to 6 weeks into the next school year.

Please pray for us as we continue our journey.

Bless you all,
P. <><

New update: July 2, 2008

I just took Logan to his pediatrician today. I mentioned some of my new concerns. I even offered her the name of the disorder: Landau-Klefner's Syndrome (brought up to me by one of you moms). She said she knew what it was and we discussed the possibility. My next question was "Can we get genetic testing for him?", but SHE suggested it to ME before I could.

We have an appointment for this and other tests throughout this month. :o)

I feel a little less helpless, but I am just anxious for answers.

Thanks again, moms!

P. <><

Featured Answers

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C.W.

answers from Wichita Falls on

I'd HIGHLY recommend talking to Dr. Donna Smith of Advanced Clinical Nutrition. You can email her at ____@____.com or call ###-###-####. Good luck!

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T.M.

answers from Dallas on

You are right, the time to get in to the specialists is about a month. Give me a shout, I can give you some great sites for families with Autism. Have a great day ! !

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R.K.

answers from Dallas on

You might try the Autism Speaks Organization. They may be able to provide you with some answers and possibley provide contacts of physicians who can help. Their website is www.autismspeaks.org

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M.M.

answers from Dallas on

Hi P.,
I will keep your son in my prayers. My nephew has autism and my sil has done extensive research and bio medical interventions.
Regression can be due to environmental toxin exposure such as a mercury light bulb break etc, and a variety of other toxin exposures. Are you doing any detox currently?
My sil has created a resource website for treatment options and awareness www.camsvoice.com There are some great links in the resource section and you can adopt an angel(another mom for support) etc.
I encourage you to remove any toxins from your home environment that your son may still be coming in contact with especially glade plug ins, scented sprays, etc that contain phenol(a neuro toxin).
My son is at risk because it does run in families and I have fully converted my home over to safer products for personal care and household use. You can visit www.LiveTotalWellness.com/TEXAS to request more info or contact me at ____@____.com to learn more.
Blessings, M.

3 moms found this helpful
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L.S.

answers from Tyler on

I don't know much about the resources for Autism around here, but I do know that there are resources (Asperger's would fall into the autism resource family, I'm sure). Back in Virginia, one of the public schools was designated as the "autism specialty" school and they had services set up in that school to help children with autism. You need to find out if the public schools offer any type of services here for Autistic/Asperger's children.

My son has/had sensory integration disorder (which lots of autistic children have) and he had to go to physical and occupational therapy. The therapy worked miracles for him, but also he is in a small private school which only has 10 kids in the classroom. If the public schools don't offer services, you may want to investigate a smaller private school. However, I feel sure that the public schools MUST offer something - you just need to investigate it.

Go to autismspeaks.com for some more resourses.

Another person offered advice on the diet change. While my son was in therapy, another mom changed the diet of her kids (gluten free, etc.) and she said it made a HUGE difference in her kids - so don't dismiss that.

Autism/Asperger's takes a LOT of work on your part to manage - but if the management is effective, the drain on you and your family gets more manageable. So, I would put some effort into finding what helps your family. You will be happy in the end. But, in reality, an autistic/asperger's child is VERY draining.

Good luck,
L.

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J.S.

answers from Dallas on

P.,

The reason you hear different things from different MD doctors is that most of them really don't have any clue. They are guessing, so their guesswork comes out different. The reason they need to guess is because they haven't been properly educated about HEALTH in med school. They only learned about disease management - i.e. drug therapy. If you want to improve your son's HEALTH, you need to start looking for people who are actually trained in that. This excludes 99% of conventional MD's. It's too bad, since many of them are rather intelligent. Nonetheless, they are not properly trained, so cross most of their opinions off your list.

Since you feel "out of control", you might try starting with something that is within your control. Diet. This is proven to have an incredible impact on kids with these disorders and should be a foundational building block in his healing. To test for food intolerances, see www.enterolab.com. This is a local Plano lab that has, in my opinion, the best food intolerance testing in the country. No doctor referral needed. Order test kit online, send in specimen, get result via email. I would test for gluten, casein and soy, since those are the principal culprits. You decide whether to test for more. Then adhere to the results.

Eliminating toxins from the home is helpful too. For example, new carpet wreaks havoc on our health.

I agree that you should consider stopping vaccinations. Texas allows you to get a waiver to avoid any additional required vaccines. However, at his age, he's already been hit with the bulk of them. It is also likely he received mercury containing vaccines. You may want to shift focus to detoxing.

Chlorella supplements are very good for detoxing mercury, lead, and other heavy metal poisons that are in vaccines. In addition mega doses of vitamin C might help. Vit C is very powerful and very cheap. Here is a good article on clinical uses of vit c. You need to take mega doses for therapeutic uses. Some believe you should take as much as possible without experiencing bowel intolerance. http://www.seanet.com/~alexs/ascorbate/198x/smith-lh-clin...

A local pediatrician who specializes in ADD/ADHD and who may also be helpful for Asperger's is Dr. Deborah Bain, MD in Frisco. People are flocking to her in droves because she is one of the few MD.s who actually knows something about food and health. www.healthykidspediatrics.com.

For more info on health generally, see www.mercola.com. Mercola sells a good Chlorella supplement. Another good supplier for this and Vitamin C is www.herbalhealer.com.

Good luck.

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L.W.

answers from Dallas on

If you are in Plano School District, I would set up a meeting with someone in upper administration and explain your child's disability. You never know till you try! Second, I do not know this off hand but try surfing for Jenny McCarthy's website. Her son is autistic. I read her book with how she has managed/fought for her son... There might be some helpful information. You could probably check out the book from the Plano Public Library. Plug in Jenny McCarthy and a list of her books will appear.

Schedule a one day a week evening for yourself... where you are not having to do anything for anyone else but yourself. It might be difficult but you need a few hours for yourself.

Good luck.

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G.L.

answers from Dallas on

Blessings P.,

Im glad you do bounce houses i normally rent about 5 a year and will need one for the 4th of July. My name is G. and i and my husband have a cleaning business One Touch Professional Cleaning (also see business section) I have 6 kids from 22-3. I havent dealt with that syndrome but i know Jesus will take care of you and him keep lifting up the Lord in this situation. Also is Logan in the ARD classes? They are less challenging than the regular classes and with your dr help he should be able to get in the classes at school you can request an ard meeting with the counselor to found out the procedure I pray for you and logan and your entire family dont give up your a mighty mother in Christ and you will get through this tough time

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M.V.

answers from Abilene on

P.,
My knowledge in this is limited but I will tell what I do know. My nephew has a similar situation but he is only 4. They have tried everything for him and the thing that has truly changed him DRAMATICALLY is his diet. Now I am a skeptic at best; however, I have seen the change and it is amazing. They cut out gluten, diary, etc. My SIL said that Montel Show just featured this yesterday and there is an actress that has a son with autism (her name has escaped me at the moment)who talks about changing their diet and the dramatic change that occurs. She may even have a book out about it. I know Good Morning America and Oprah have had her on a few months ago. You may be able to find it on the archives. I remember now....Jenny McCarthy and her book is "Louder Than words: A Mother's Journey in Healing Autism".
I'm sorry that doctors are not a huge help....not that I have been but those are the things that I know have helped my nephew. I would love to hear if they help your son. I am sorry and I pray the very best for your son and you!

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M.G.

answers from Dallas on

Call Dr. Rao. He is an allergist/immunologist who specializes in Autism. He has two offices: Carrollton and Plano. ###-###-####. He will run many, many tests on your son (blood tests and urine tests), and he will see what method of treatment he will do. I take my son (high functioning Autism) to him. I think we are going to start chelation therapy on him next month (kind of like a detox thing - getting rid of the Mercury in his body). A lot of kids with Autism have Mercury in their bodies and it needs to come out. But first you will have to do endless urine tests (it's a pain, but it's worth it. I am finally done with the urine tests and I am waiting for the very last result, and then Dr. Rao will tell me if he thinks chelation is the next step, which I think it is).

Also, take your son to get evaluated in his school district. They will place him in the special ed. program, and will probably be mainstreamed (going to his "typical" class, and also might get pulled out to go in a special ed class). He will get therapy when he gets pulled out from his typical class. If you feel he needs additional therapy, take him to a private place called Our Children's House at Baylor (there are many locations - I took my son to the Coppell location). They offer speech, O.T. and P.T. and they are very good. Check with your insurance company to see if they will pay for some of it. Start getting help now. You might have to wait a while to get into Dr. Rao's office, unfortunately. But when you see him, he will give you medication or supplements for your son (after the appropriate testing). However, contact your son's school district now, and maybe they can get him evaluated now and start therapy this summer. Or take him to Our Children's House at Baylor and they can start therapy with him. He needs to be on meds for his seizures. The Dallas society of Autism has monthly meetings if you want to do that (I can give you the main contact person's email address for that if you would like - just send me a P.M.). Best of luck! My son is 4 and is doing so great b/c of all of his therapy and early intervention he has received!

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S.B.

answers from Dallas on

Hi:

I want to share something with you, I don't know if you've been told about this or not. I have a Health and Wellness business with Melaleuca products. They are a green company and help you remove caustic toxins from your cleaning products and personal care products. There is a lady on our team whose daughter is autistic and was diagnosed with Asperger's Syndrome. She said that switching over her cleaning products, personal care products and putting her on our children's vitamins, that it changed her life! She took her back for testing a couple months after changing those products and the the test results were that she was no longer Asperger's and was a functioning Autistic. Our vitamins are 98% absorbable because of the way they are made and time and time again I keep hearing these stories of children's lives being changed! I'd love to share it with you. I've seen a difference in my home too, by removing toxins from our products! Please feel free to email me and I'll give you my phone number. I would love to share this with you, and I will try and find her number for you if I can, if you'd like to talk with her too!

I'll be praying for your son.

Sincerely,

S. Brewer

1 mom found this helpful
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D.D.

answers from Dallas on

Dear P. B,

I've already said a prayer for you, Logan and for your whole family. I've also said a prayer that yall find the perfect specialist for Logan, even if you do have to wait a month or so.

May God bless all of you!

Deb D

1 mom found this helpful
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C.S.

answers from Dallas on

The only part I can give advice w/is that you should not be waiting that long considering the circumstances! Your pedi should be trying his hardest to get you in....my daughter has had neurological issues and the dr's at Children's told me it would be March before I was seen (we had her MRI done in Dec.). My pedi called Medical City and get me in the next day. The neurologist at Medical City was great. I totally understand the wanting to pull-out your hair....I have been given so many different opinions about my daughter...I pray you find your answers! God bless you and your family!

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H.B.

answers from Dallas on

I don't have a child with a Asperger's but I can give you some advice about the school issue and the TAKS test. Any child with a disability can request an IEP (individulized education plan.) Call your child's school as soon as the school year starts. Ask to speak to a diagnostician, ask that your child be evaluated for an IEP. They will have an ARD meeting, a teacher, principal, counselor, diagnostician, and you should be present. You will need to bring paperwork from your physician that proves the diagnosis. The committee will then decide what kind of modifications your son needs in the classroom and on the TAKS test. This is not special ed. And also his IQ should not have much to do with it; although they will look at his previous test scores and ask for information from his teachers that could help them make a decision. They probably won't want to have the meeting right away because the teacher will need time to evaluate him and get to know him in the classroom. Waiting until after the first 6 weeks is reasonable.

From what I've learned as a teacher, we generally have the most pull in those decisions because we are in the classroom with the student. Get to know his teacher next year, talk to her about what is going on, ask her for her recommendations and guidance. Teachers want their students to be successful and if your's needs modification in the classroom, your teacher will most likely fight to get it for him. Hopefully you will get an experienced teacher!

Good luck to you and your family; I'll pray for you. And remember communication with your son's teacher will help tremendously.

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M.S.

answers from Dallas on

Hi P.,

The wonderful moms here at Mamasource have given you so much great information! I am a yoga therapist for special needs children. This therapy addresses the whole child, not just the symptoms. I am in the process of updating my web site, but please look into it. You can contact me from there.

Peace, Joy, Love, and Light to you and your family,
M.
http://yogapotential.com/

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L.C.

answers from Dallas on

P.,
Go get Jenny McCarthys new book LOUDER THAN WORDS. You will be able to relate and she has great advice for moms with kids with autism and seizures. I have a son who is 8 with Autism but we do not have the seizures. What doc are you waiting for? DO NOT GO TO your pediatrician. They are worthless with autism. Have you thought of alternative medicine? go to www.autismspot.com There is lots of info on there and videos of docs etc..... Email me if I can help in any way.
L.
____@____.com

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D.S.

answers from Dallas on

Hi P.,
My heart and prayers go out to you and your family. I have a son that is almost 30 years old and his best friend from elementary schools works with autistic children His name is Andy. I have 6 grandchildren that absolutely adore him. He is great with kids, they are his passion. He was working up in Boston and has recently moved back here. He has a website if you would like to check him out and see if he can give you any pointer. I just got off the phone with him. He had some interesting things to say concerning your emai. His website is jacheaustism.com

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B.W.

answers from Dallas on

My kids have multiple medical issues - neuro, gastro, endo etc.....they both had brain surgery in 2003...that said, I have wanted to smack all the docs that have told me ' not my specialty' 'not my interest'..I had to really search..I now take the kids to Cook Childrens in Fort Worth where they get awesome. prompt care from an awesome array of specialists including a brilliant neurologist .....please let me know if you want his name and number.......and your school is giving you garbage as IQ is not the only reason for exemption or at least separate testing....my heart goes out to you.....I wanted to add, you might want to look into NACD - National Association of Child Developement - I knew a woman with a brilliant child with Autism, I never thought this child would progress, but she used their personally written program and this child will now go to college and marry...you would never know she even has it unless you really knew the mannerisms of these kids.....they have a website and I believe are located in Ennis....it requires heavy parent involvement...I have used some of their ideas with my son and his traumatic brain injury and my daughter and her dyscalculia and delay in active working memory - it works.....

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S.M.

answers from Dallas on

Have you tried Texas Child Neurology, LLP? They have an office at Baylor Grapevine & one in Plano. We used Dr Chudnow for my daughter and another friend of mine uses Dr Rlela and both have been awesome!! The toll free # is ###-###-#### and website is www.texaschildneurology.com

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A.S.

answers from Dallas on

As a Special Education Teacher I am concerned that you are being told by the school that Logan's IQ tests are too high for him to be exempt from the standardized tests at school. First of all, IQ tests do not determine whether a student is exempt on tests. Second of all, because your son is in special education he cannot be retained on the basis of 1 standardized test and without an ARD meeting determining if retention is what should/not happen. An ARD committee, in which you are a voting member, determines all testing, placement and educational needs/services of your child. If you do not believe Logan is capable of taking the standardized test and passing due to his disability then you need to speak up! As far as seizures go please make sure that you are taking him to a pediatric neurologist. You can also ask the school to perform a Full Individual Evaluation (FIE)or re-evaluation to compare to his earlier testing. This information would be very helpful to take to the doctor to determine if the seizures &/or autism is causing the regression in Logan's math and reading skills. Hope this helps a little! Let me know if I can help you further :)

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K.H.

answers from Dallas on

I understand your agony and frustration! I have been struggling to find a diagnosis for my son for many months now. I don't know if you have tried the neurology department at Children's Medical Center. I know they can be backed up, but I have found often if you plead with the scheduling people they can be quite helpful. I also encourage you to contact an organization called Parent to Parent. They are a national group of parents who have organized to support and reffer other parents. I have found them to be a tremendous help. Their website is www.txp2p.org

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R.R.

answers from Dallas on

Hello there!
My name is R. Rocamontes.
Please give me a call ###-###-####. I want to give you some info that might help.
My nephew is autistic and we have done some things that have helped him out.

I've been married 6 years and have a little girl.

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S.A.

answers from Dallas on

READ JENNY MCCARTHYS BOOK ABOUT HER SON WITH AUTISUM!!!! GET IT NOW AND TRY WHAT SHE HAS DONE! Good luck to you and God Bless.

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K.B.

answers from Dallas on

Okay as a former teacher, you must understand that as the parent you are in control. Legally, a school cannot hold a child back without your permission, and you must hold the school and the school system accountable for meeting your child's needs. I strongly encourage you to solicit the help of a child advocate. Since your child has been diagnosed he must have an IEP, if he doesn't the school system has failed to provide the necessary services for your child. Even with a high IQ, which many students with IEPs have, there are provisions made for him to have alternate testing or assistance.

Since you said your son's reading abilities have changed, you may want to have him re-evaluated to see what is going on.

There are soo many things you may need to do and it may seem overwhelming, but let me tell you this. If you don't demand the proper services your child will not get them. You have to be PROACTIVE in everything you do for him.

a child advocate is a good place to start.

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M.

answers from Dallas on

I would check out the Block Center. They have a website and they have been incredibly helpful. They really know this disease and have the best ways to fight it without tons of drugs.

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J.O.

answers from Abilene on

Try to get your child to Cooks Children's hospital or Children's Hospital in Dallas. I know of several children that go there and have good results. One woman took her daughter to the ER when she was having a seizure and that is how she got in with a specialist. All children in texas take a grade level assessment (TAKS). The one's with the most severe/significant disability take an alternative test (TAKS ALT) but these are kids that cannot hold a pencil. That is one of the criteria. The state limits this to 1%. If your son is in special ed, then he can take an TAKS Accommodated or TAKS Modified. It is an ARD committee decision. If he is not in special ed, he might could qualify as OHI as seizure disorder or Asp. It depends on the need for special education. This can get quiet lengthy and involved, so if interested, send me a message direct for more information.

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T.O.

answers from Dallas on

There was something in the news or on-line recently... about how the seizures were not treated in this boy, and that when the doctors FINALLY treated him, he did so much better. Seizure medications is what he needed. Does yours take those meds?

If not try Med City as the other poster said. And if you need more referrals you can always check out LISD's SEPTSA... you can join the yahoo list and ask all those parents questions. I don't know if you're in the LISD school district but I think you can get on even if you aren't.

http://lisdseptsa.txpta.org/

AND then there's a great program at Easter Seals, brand new, and specifically for kids 3 to 8, to hurry and contact them .... maybe they can help.

http://ntx.easterseals.com

I'm working on an Asperger's website... it's almost done. Message me in a week and I'll give you the site address.

____@____.com

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W.N.

answers from Dallas on

Hi there P.,
my son also has asperger's. Thank god we have not been thru any seizures. I want to state something obvious, i am willing to bet you've done this: google asperger's and autism, read everything you can find on the subject. I have read in my wanderings online about the symptoms you are describing. Since it didn't pertain to our situation i did not pay enough attention to give you good info on what i read. I know that you will find it if you look, the symptom of forgetting what was already learned.
Oasis is a good site, and once again, i bet i'm not telling you anything.
This is the thing that made the most diference to my son's well being: homeschool. We started that and things got better quickly, but dylan's troubles were more of a social nature, with bullying by other kids the most pressing problem, and a dangerous one. I don't know if that would be the way to go, but i certainly had a lot of trouble with the faculty at the schools dylan attended, and i give no kudos to the many many many many teachers and administrators i dealt with save for three, and their influence seemed to be limited as far as the other teachers and staff, one was the principal. It was unbelievable. I don't hold out much hope there for you, my dealings with them being so unfruitfal and maddening.
Keep my name, if i can help you in any way i will be happy to. If nothing else but pointing out good websites for info. My heart goes out to you, i know it's so tough. Don't lose hope tho, things will get better. And keep trying, there are resources out there. In the fort worth school district there is a family therapy clinic that might be able to help, i don't know. If nothing else turns up contact me and i'll look it up for you. I can't remember the name off the top of my head, but it'll be easy enough to find out. It is located off 7th street, right outside of downtown, a little way from university drive.
Do keep my name, i'd be so glad to help you if i can.
God bless you and your logan,
W.

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S.R.

answers from Dallas on

I would encourage you to call Brian Hickey, D.C. He is a chiropractor and does applied kinesiology techniques. My neighbor's daughter who has autism saw him and her mother was amazed at the results. He is a natural health doctor and will work to get to the root of the problem instead of masking the symptoms. Anyway, our entire family sees him for various reasons. He is also one of those people you feel you have known all of your life. He has a great bedside manner and loves just to help people. Who knows, he might be able to do something great to help your son. If you do call, please tell him S. Rosson referred you. His number is ###-###-####. I would not refer him if I did not totally trust and believe in what he can do because of his vast knowledge.

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A.A.

answers from Dallas on

I have not read the other responses so please forgive me if I repeat or contridict another response. I have an aspergers son as well...so I understand your frustrations. I have found doctors are almost useless at this point. They help with meds and that is all. I am responding more towards your response on school. Do you have an IEP??? My sons IQ is also too high to be exempt. However, you should be able to have many accomadations in place when he takes any state tests. Repeating 2nd is not the worst thing because 3rd grade is hard for asperger kids because they have to start using higher order thinking skills instead of just learning the facts. It will be helpful to have a stronger base before entering 3rd. However, make sure you use this year to make sure you have everything he needs in place before 3rd grade.

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J.G.

answers from Dallas on

My oldest brother had Asperger's and my mom dealt with it and it went away went she changed his and her diet completely. If you're interested, I can give you my mom's e-mail--she's a very smart and educated woman--currently seeking her P.h.D. Good luck. I'm sure it is a very rough situation for you. My prayers go out to you. J.

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S.E.

answers from Dallas on

Dear P.,

I am sorry to hear about Logan. Please check out www.generationrescue.org for information on how to help him. If you want to speak to a dad whose daughter was diagnosed with autism and now has made a 180 degree turn for the better, please contact:

Jeff D. Cunningham DC
121 Hall Professional Circle Ste A
Kyle, TX 78640
ph: ###-###-####
fax: ###-###-####

You should look into Logan's vaccination schedule and seriously consider whether or not to continue with vaccinating him. There are too many coincidences with vaccines and autism spectrum disorders. Vaccines are not mandatory in Texas. If you would like, please feel free to call me. My cell is ###-###-####.

Sincerely,

S. Elsner

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T.C.

answers from Dallas on

Please check into Herbal medicaine and speak with someone. They are very knowledgeable. If you are in the Denton area my aunt owns Natures Remedy. She can help you. I agree about not vaccinating you child anymore. I have read that the vaccines are leading causes to autism. I can understand your frustration, hang in there.

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R.C.

answers from Dallas on

Hi P.,
I read your post and have been contacting a non-Mamasource friend to get resources about Autism and Aspergers. I have an email from a workshop she attended I would like to forward to you. It lists many resources you can look into. Please respond to me if you would like the email. Thanks.

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J.B.

answers from Dallas on

I might be able to help your son. I am doing Nutrition Reponse Testing and I am specializing in Autism/ADHD/Siezures etc. I am very excited about it. The way to heal them is to remove the metals from the body. The metals is what is causing everything. Let me know if you want to try it out. I'm a chiropractor in Irving. Our number is ###-###-####.
J.

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E.P.

answers from Dallas on

Of course, deal with your son's health first. I agree with some of the other moms - - you should definitely investigate mercury poisoning and do a detox program. Mercury preservatives in some vaccines have been suspected to cause slight brain-swelling - - enough to cause seizures and even SIDS in infants.

After the health crisis has been addressed, then you need to address his education. You really should consider homeschooling. Regular teachers who are in charge of 25 other kids are expected to be able to meet the special needs of one or two children. However, take it from me, an ex-teacher, it is next to impossible to fully meet the learning needs of every child, especially those with special needs. We were literally told by our administrators, "Teach to the middle," meaning don't aim your lessons at the top students, nor the students with special needs, but aim for the middle.

FREE PUBLIC EDUCATION is a great thing and it made America what it is today. But it is woefully inadequate to handle EVERY CHILD. Many children just fall through the cracks. Take charge of your own child's education. Investigate HOME-SCHOOLING. It would just take so much pressure off your family. Go online and find a home-schooling community in your area. They will get together for field trips, park play-days, etc., and give your child social interactions that you could be in control of - - how much and when.

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L.M.

answers from Dallas on

Hi! I sent you a private message, but wanted to just put this out there too.

I want to warn any parent out there whose child is having seizures, to treat the seizures with proper medicines, as advised by a neurologist. Seizures can cause major brain damage, even death, if not treated properly. They are not something to take lightly. There are diets (ketogenic) that are sometimes helpful, that are used in conjunction with seizure medication. The use of supplements or any other alternative methods will not prevent seizures, and puts your child at severe risk.

To change diet or add supplements solely for autism, that is one thing. But for seizures, do not go there! Jenny McCarthy's son has had some very serious seizures. Even with him being on GFCF diet & DAN! protocol, he still requires seizure medication (he was hospitalized and put into a coma not too long ago because of his seizures). So, those alternative methods are fine if that's what you believe in, BUT NOT for seizures!

Thanks. I just had to get that out.

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J.M.

answers from Dallas on

You need to research or suggest to a neurologist that you suspect Landau-Kleffner's Syndrome. It's a rare form of epilepsy that results in acquired aphasia that regresses language and learning skills. Early intervention is very important. In the last few months, Discover magazine profiled the disorder (the article is accessible online). My brother had it at a young age--the drop seizures, the regression in language and learning. But the good new is that the earlier it is diagnosed and treated (and the later it sets in), the better chances you have at working through it. They can do an EKG that shows a certain kind of activity to confirm the diagnosis. Don't get discouraged about the magazine article if it doesn't seem very positive. there are some support groups out there and more recent research. Let us know! By the way, my brother has good verbal skills, but has difficulty with social skills but is ridiculously smart. Let us know!!! Write me if you have any questions.

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T.F.

answers from Dallas on

I am soo sorry you are going through this!

My sister worked with Autistic children in College Station area for years (she is now in Austin Area working for CPS) and my cousin has Asberger's and is in Houston! My sister has said that the area from College Station (research) to Houston (treatment) is by far known as one of the best areas in the USA for Autism-related work with children. I know you are in the DFW area, but would you be willing to travel to that area or Houston for the best help around? If so, you can personal message me and I will get some information from my sister for you that may help you find some good therapists/drs. in the COllege Station/Houston area!

I know the last thing you prob. want to do is see yet another dr. but just maybe someone my sis can recomend would be the answer you are looking for!

Let me know if you are interested!

Best of luck and God Bless!
T.

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L.D.

answers from Dallas on

First question, if he was able to be IQ tested, why is there problems with standardized testing. Just because he has been IQ tested has nothing to do with standardized testing. Surely at this juncture, he is under an IEP?ARD or at the minimum a 504 Plan for accomadations. These plans make sure that the proper accomodations are in place when your child has to take test. You as a parent are a big part of the IEP/ARD meeting and your desires for your child should be taken into account..

I ask these questions because I have worked with children with autism/Aspergers. Some of the children I worked with were as young as 2 and as old as 12. I have been in homes and helped implement ABT programs so I find your case interesting.

You need your child seen by a developmental pediatrician. There are assessments that they can do to help you determine which path to take. They can refer you to a neurologist to find out about the seizures. The welfare of your child is such that taking "no" is not acceptable. You are at this point your child's advocate. Yes there are times that you will be pulling your hair out but you must remember that each child is unique and there is not cookie cutter method to helping them. The school would explain "why" they are keeping your child back. If you have been talking to teachers and administrators throughout the school term than they have failed your child. From the first moment of problems or trouble in different academic areas, you as a parent should have been notified and a plan of action should have been put in place.

You as parent know your child. You as parent know and believe that your child has potentials that others don't see. You as parent need to take a step back, exhale and walk forward ready to fight for your child and what he needs educationally. You have been blessed with a special blessing. Cherish and nuture, patience and love....Remember that autism is still a mystery to many. People still feel that different things are to blame such as toxins, foods, immunizations etc...NO one has the clear answer but until they do, do all that can be done to help your child. Getting a handle now will make it easier down the line.

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