New to Asd

Discuss autism diets and biomedical treatments of autism.

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Hopeful3
Posts: 4
Joined: Sat Dec 10, 2016 11:00 pm

New to Asd

Postby Hopeful3 » Sun Dec 18, 2016 6:37 pm

Hi
We shifted to FLORIDA from India 3 months back. I have a 4 year old son who might be on the spectrum. He was under going OT and ST in india .

There were some issues which were observed in school in India and daycare here too . And no focus and attention at all .He doesn't interact with peers at all and has a lot of scripting too. And keeps talking to himself

I want to check how to proceed here in US. Do we need any official assessment here or services from school district be enough at this point?

How will the diagnosis help otherwise ? how will ABA HELP ?

Where to start ? Totally lost with the kind of waitlists here. Can someone guide us ?

Thanks a lot.

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Mon Dec 19, 2016 12:53 am

1. You need to select a good pediatrician
2. Tell the pediatrician that you would like your son to be evaluated for autism. The pediatrician would refer you to a local children's hospital, which would conduct the evaluation. Most likely, you will get the diagnosis of autism.
3. Having the diagnosis, you talk to school about special education. They will most likely conduct their own evaluation to determine the level of severity and the needs for ST, OT and APE.
4. If you don't have insurance that pays for ABA, you need to contact a regional center in your city and get them to pay for in-home ABA. If you have insurance that pays for ABA, ask your insurance for a list of in-network ABA providers, talk to other parents about who is the best, contact the selected ABA company and get the ball rolling. Good ABA companies have a long (6-9 months) waiting list, at least in our town. To get ABA going will take a couple of months even if there is no waiting list.
5. Ask the pediatrician a referral to a developmental neurologist. Typically, pediatricians don't refer autistic or any other patients to neurologists unless they suspect a possible seizure. So, you can tell your pediatrician that your son often stares in space for several seconds and you are concerned that it might be absence seizures. You can also tell that your son wakes up at night and you are afraid that he has nocturnal seizures.
6. Once you get to a developmental neurologist, tell him/her the same story about staring in space and night wakings and ask for 24HR EEG test. This is the most important part of everything that you have done so far (found a pediatrician, got the autism diagnosis, got a referral to a neurologist). Many autistic kids have abnormal EEG, which affects their learning. Many old-school neurologists will not do anything about abnormal EEG. If you happen to find a forward-thinking neurologist, he/she will prescribe an anti-seizure med to remove abnormalities in EEG. The best med is Lamictal, followed by Trileptal and Keppra. These meds can make a huge difference. If I could dial 5 years back, when my son was 2.5 and just diagnosed with autism with abnormal EEG, the first thing I would have done is to put him on Lamictal instead of taking countless blood and urine tests, trialing dozens of useless supplements and wasting 5 years of my son's life.
7. You should also find a good DAN doctor and get a prescription for HBOT, which is not covered by insurance but is worth doing. HBOT increases blood flow to the brain and mobilizes stem cells to repair possible brain injuries. If your son has abnormal EEG, I would recommend delaying HBOT until you got to the target dose of the anti-seizure med just as a precaution. My son did HBOT before anti-seizure meds and had no issues (no seizures induced by HBOT).
8. While you are doing all the above, you can try typical treatments for autism like MB12 injections, gluten/casein-free diet, antifungals. These may bring some improvements too. Check for allergies to food and environment.

My son "took off" after we started HBOT at 5 years of age. Then he "took off" again when we started Trileptal and then Lamictal. Lamictal at the beginning was a rocky ride, but once we got closer to the target dose, we saw great improvements in language, awareness, playing with things properly, better eye contact, interest to peers. No therapy or treatment will have a lasting effect unless abnormalities in EEG are treated. These abnormalities act as "reboot" signals, causing the brain to lose information and the child to regress.

Hopeful3
Posts: 4
Joined: Sat Dec 10, 2016 11:00 pm

Re: New to Asd

Postby Hopeful3 » Thu Dec 22, 2016 8:21 am

Thanks a lot ! I have a few more questions and as I talked with the pediatrician.

Hopeful3
Posts: 4
Joined: Sat Dec 10, 2016 11:00 pm

Re: New to Asd

Postby Hopeful3 » Thu Dec 22, 2016 5:59 pm

I am just checking to start with supplements, is there any specific one to work on attention or they are a combination of various supplements?

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: New to Asd

Postby makingitpossible » Fri Dec 23, 2016 11:40 am

For supplements typically a MAPS doctor will start on methyl B12, some type of folate, a B complex and a mineral complex. This has been my experience. They are very focused on B vitamins particularly and zinc.
There are different people you can follow and get an idea. Ben Lynch is pretty big. He uses SNP testing and has developed his own database that looks at these SNPs but he also talks about how you shouldn't treat based on SNPs.
Morley Robbins is another one I am following that focuses more on minerals, particularly magnesium and raising ceruloplasmin which is important in copper metabolism.
But I would first focus on diet and toxins in the home. Do you have air filters, whole house water carbon filter, reverse osmosis, or did you get well water tested, switch to natural cleaning products, switch to organic diet, etc.
The supplements help many and make many worse depending on what is going on with them.
We do mainly whole food supplements now. The synthetic stuff just made things worse. But I would research a lot of the different doctors and protocols as every kid is different.
Get basic labs done before you start. Morley Robbins has a good list of labs, many of which you can do through your primary.

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Fri Dec 23, 2016 2:06 pm

The reasons for autism are many, some genetic, some related to brain injury, but most common ones are related to brain inflammation from immune response to vaccines, viruses, allergies, toxins. Abnormal EEG or seizures are signs of brain injuries or inflammation. So, fighting brain inflammation is the key. That is why corticosteroids are so powerful: they reduce brain inflammation and seizures, resulting in great language gains but only temporarily, while on medication. You have to supplement with anti oxidants and anything that fights inflammation. You have to fight allergies because they also result in brain inflammation. You have to eliminate all chemicals that cause improper immune response. For example, according to Dr. Naviaux, fire retardants that they add to all mattresses, furniture and baby pajamas cause developmental disorders like autism. You will need to buy an organic mattress and buy only clothing that doesn't contain fire retardants.

As far as the attention, I am still searching for a solution myself. I don't think there is a single one drug or supplement that would help with that. You have to treat the whole body. I would avoid drugs like Ritalin or Concerta or other stimulates based on meth because they can lead to an early onset of schizophrenia according to an FDA warning. Autism in old days was called a childhood schizophrenia.

ArvadaMom
Posts: 10
Joined: Thu Jan 05, 2017 11:39 am

Re: New to Asd

Postby ArvadaMom » Fri Jan 13, 2017 4:18 pm

Fatherof2 I have a follow up question on item 6 above. I have heard of the 24hour unmedicated EEG (as key to determine non-obvious seizures)- was wondering what type of EEG you had for your son and your input on importance of type of EEG.

Have been trying to get details on that from other parents but for some reason have had a hard time getting details on the EEG process. Thanks.

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Sat Jan 14, 2017 12:38 pm

We did 4 EEG tests. The first one was just 30 minutes under sleep inducing inhaled gas. This test still showed abnormalities, but I wouldn't recommend it because 30 minutes is too narrow window to catch abnormalities. The second test was a 24hr in-home test without video monitoring using DigiTrace system. It showed few abnormalities. The problem with in-home test is that, while the technician at the hospital makes sure that all electrodes are recording, there is no way to tell if theycontinue recording while the patient is moving around at home. But the convenience is a big plus. The 3rd test was 24hrs at the hospital with video monitoring. This test showed extreme number of abnormalities. I consider this test the most accurate. Nurses continuously monitored my son by regularly coming into the room and remotely from their computers. The recorded EEG was visible in real time with a software marking abnormalities so that I could tell if my son had abnormalities and what he was doing during them. There are several problem with in-hospital EEG tests. 1st, in our hospital the EEG testing is done in the same wing where they keep highly infectious pediatric patients. Presumably, they are not supposed to give EEG rooms to infectious patients, but in reality they do if there are too many of them. This is what happened to us. We did this hospital-based EEG test in winter, during a flu season, and our room was occupied by an infectious child before us, and was cleaned in 30 minutes or so before my son took residence of it. 2nd problem is that a child spends 24hrs in bed, hardly moving, peeing in a plastic bag. This may affect the results. 3rd problem is inconvenience for parents (no place to lay down, etc). Our 4th test was 24hrs done at home again. This time it had video recording. I liked the most. In all tests but first (under anesthesia), we were specifically instructed by the hospital to give exactly the same meds and supplements that we were regularly giving to our son. I think that is the right way to do it. If your child takes an allergy med for example, and it affects his/her EEG in any way, the doctors want to know. If your child takes anti-seizure meds, they want to know if they help. Testing EEG at home is beneficial because your child is where he/she spends most of the time. However, one may argue that a hospital is an unfamiliar place for a child, which may cause anxiety (like school or other social situation), which may trigger an abnormal neuron firing, which you don't see at home. Perhaps that is why our hospital-based testing showed so many spikes.

I do strongly recommend to test EEG for at least 24hrs. Even one spike in 24hrs, even though not classified a seizure, can cause a 'reboot' and loss of learned skills. These spikes are often responsible for regressions in autistic children (depends on where they originate). Our DAN doctor will not stop until the last spike is gone. The anti-seizure med is very important too. I really like Lamictal. We had a bumpy beginning at low doses, but now everything is settled, and we are seeing great gains. I am kicking myself for not starting Lamictal 5 years ago when we first observed abnormal EEG. Now I understand the meaning of the name of one of the parents here - fiveyearswasted.

mommy4ev
Posts: 31
Joined: Tue Jan 10, 2017 6:58 pm

Re: New to Asd

Postby mommy4ev » Tue Jan 17, 2017 5:49 pm

FatherOf2 wrote:We did 4 EEG tests. The first one was just 30 minutes under sleep inducing inhaled gas. This test still showed abnormalities, but I wouldn't recommend it because 30 minutes is too narrow window to catch abnormalities. The second test was a 24hr in-home test without video monitoring using DigiTrace system. It showed few abnormalities. The problem with in-home test is that, while the technician at the hospital makes sure that all electrodes are recording, there is no way to tell if theycontinue recording while the patient is moving around at home. But the convenience is a big plus. The 3rd test was 24hrs at the hospital with video monitoring. This test showed extreme number of abnormalities. I consider this test the most accurate. Nurses continuously monitored my son by regularly coming into the room and remotely from their computers. The recorded EEG was visible in real time with a software marking abnormalities so that I could tell if my son had abnormalities and what he was doing during them. There are several problem with in-hospital EEG tests. 1st, in our hospital the EEG testing is done in the same wing where they keep highly infectious pediatric patients. Presumably, they are not supposed to give EEG rooms to infectious patients, but in reality they do if there are too many of them. This is what happened to us. We did this hospital-based EEG test in winter, during a flu season, and our room was occupied by an infectious child before us, and was cleaned in 30 minutes or so before my son took residence of it. 2nd problem is that a child spends 24hrs in bed, hardly moving, peeing in a plastic bag. This may affect the results. 3rd problem is inconvenience for parents (no place to lay down, etc). Our 4th test was 24hrs done at home again. This time it had video recording. I liked the most. In all tests but first (under anesthesia), we were specifically instructed by the hospital to give exactly the same meds and supplements that we were regularly giving to our son. I think that is the right way to do it. If your child takes an allergy med for example, and it affects his/her EEG in any way, the doctors want to know. If your child takes anti-seizure meds, they want to know if they help. Testing EEG at home is beneficial because your child is where he/she spends most of the time. However, one may argue that a hospital is an unfamiliar place for a child, which may cause anxiety (like school or other social situation), which may trigger an abnormal neuron firing, which you don't see at home. Perhaps that is why our hospital-based testing showed so many spikes.

I do strongly recommend to test EEG for at least 24hrs. Even one spike in 24hrs, even though not classified a seizure, can cause a 'reboot' and loss of learned skills. These spikes are often responsible for regressions in autistic children (depends on where they originate). Our DAN doctor will not stop until the last spike is gone. The anti-seizure med is very important too. I really like Lamictal. We had a bumpy beginning at low doses, but now everything is settled, and we are seeing great gains. I am kicking myself for not starting Lamictal 5 years ago when we first observed abnormal EEG. Now I understand the meaning of the name of one of the parents here - fiveyearswasted.


That is awesome and I am so glad your child is doing better! What age did your child begin with EEG testing? I have a three year old and I can hardly get him to sit still for 2 minutes let alone 30 (or 24 hours) in a strange place with stickers/wires on his head. Any pointers? Also I heard DMG/TMG has anti-seizure properties. I am not sure if this is accurate but did that work with your child? (assuming you tried it). Thank you and I look forward to gaining more knowledge from your overflowing well!

mommy4ev
Posts: 31
Joined: Tue Jan 10, 2017 6:58 pm

Re: New to Asd

Postby mommy4ev » Tue Jan 17, 2017 5:54 pm

FatherOf2 wrote:We did 4 EEG tests. The first one was just 30 minutes under sleep inducing inhaled gas. This test still showed abnormalities, but I wouldn't recommend it because 30 minutes is too narrow window to catch abnormalities. The second test was a 24hr in-home test without video monitoring using DigiTrace system. It showed few abnormalities. The problem with in-home test is that, while the technician at the hospital makes sure that all electrodes are recording, there is no way to tell if theycontinue recording while the patient is moving around at home. But the convenience is a big plus. The 3rd test was 24hrs at the hospital with video monitoring. This test showed extreme number of abnormalities. I consider this test the most accurate. Nurses continuously monitored my son by regularly coming into the room and remotely from their computers. The recorded EEG was visible in real time with a software marking abnormalities so that I could tell if my son had abnormalities and what he was doing during them. There are several problem with in-hospital EEG tests. 1st, in our hospital the EEG testing is done in the same wing where they keep highly infectious pediatric patients. Presumably, they are not supposed to give EEG rooms to infectious patients, but in reality they do if there are too many of them. This is what happened to us. We did this hospital-based EEG test in winter, during a flu season, and our room was occupied by an infectious child before us, and was cleaned in 30 minutes or so before my son took residence of it. 2nd problem is that a child spends 24hrs in bed, hardly moving, peeing in a plastic bag. This may affect the results. 3rd problem is inconvenience for parents (no place to lay down, etc). Our 4th test was 24hrs done at home again. This time it had video recording. I liked the most. In all tests but first (under anesthesia), we were specifically instructed by the hospital to give exactly the same meds and supplements that we were regularly giving to our son. I think that is the right way to do it. If your child takes an allergy med for example, and it affects his/her EEG in any way, the doctors want to know. If your child takes anti-seizure meds, they want to know if they help. Testing EEG at home is beneficial because your child is where he/she spends most of the time. However, one may argue that a hospital is an unfamiliar place for a child, which may cause anxiety (like school or other social situation), which may trigger an abnormal neuron firing, which you don't see at home. Perhaps that is why our hospital-based testing showed so many spikes.

I do strongly recommend to test EEG for at least 24hrs. Even one spike in 24hrs, even though not classified a seizure, can cause a 'reboot' and loss of learned skills. These spikes are often responsible for regressions in autistic children (depends on where they originate). Our DAN doctor will not stop until the last spike is gone. The anti-seizure med is very important too. I really like Lamictal. We had a bumpy beginning at low doses, but now everything is settled, and we are seeing great gains. I am kicking myself for not starting Lamictal 5 years ago when we first observed abnormal EEG. Now I understand the meaning of the name of one of the parents here - fiveyearswasted.


That is awesome and I am so glad your child is doing better! What age did your child begin with EEG testing? I have a three year old and I can hardly get him to sit still for 2 minutes let alone 30 (or 24 hours) in a strange place with stickers/wires on his head. Any pointers? Also I heard DMG/TMG has anti-seizure properties. I am not sure if this is accurate but did that work with your child? (assuming you tried it). Thank you and I look forward to gaining more knowledge from your overflowing well!

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Wed Jan 18, 2017 1:35 am

mommy4ev wrote:That is awesome and I am so glad your child is doing better! What age did your child begin with EEG testing? I have a three year old and I can hardly get him to sit still for 2 minutes let alone 30 (or 24 hours) in a strange place with stickers/wires on his head. Any pointers? Also I heard DMG/TMG has anti-seizure properties. I am not sure if this is accurate but did that work with your child? (assuming you tried it). Thank you and I look forward to gaining more knowledge from your overflowing well!

First EEG was at 2.5 years, but sedated for 30 minutes. Second was at home at age 4. 3rd was at hospital at age 6. 4th was at home at age 7.7, which was last October. The pressure from the head band tends to calm down. iPad and TV help too. DMG made my son to communicate with us when he was 2.5yo, but also caused him to start head banging, and it stuck for several years even though we stopped DMG after a couple of days trying it. Scary stuff! You don't want to trigger self-injurious behaviors because once they are out, God help you. If you decide to try DMG, start with 60mg or even less. I would recommend to stay away from it completely. TMG was OK, but hard to say if it did anything. I don't know how effective DMG and TMG are at reducing seizures. I would recommend Taurine before bed at 500mg: it helps my son to sleep and supposedly reduces seizures. Magnesium should help too, but we never saw any effect from it. There are so many forms of Mg and not all of them are good. Ionic Mg is supposed to have a good absorption, but it comes with a lot of chloride, which is really bad for your brain. I think Epsom Salt baths is probably the only safe way to get Mg into the body and we did a lot of them.

If you want a good base of your supplement plan, you should start with Fish Oil (Nordic Naturals Children's DHA) and B-complex (I like Doctor's Best Fully Active B-Complex). These two are used in brain injuries and are safe. You can't go wrong with them. Give them in the morning. In the evening, you give Taurine for sleep and seizures. The rest is optional. You can try different things, but keep that trio. A good multivitamin can't hurt either. We made it simple: we use Smarty Pants gummies. We use it on a go and as a reward (cut it in halves and spread throughout a day). So, little sugar in those gummies doesn't get wasted.

ArvadaMom
Posts: 10
Joined: Thu Jan 05, 2017 11:39 am

Re: New to Asd

Postby ArvadaMom » Wed Jan 18, 2017 12:23 pm

What brand and how did you give the Taurine?

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Wed Jan 18, 2017 6:05 pm

ArvadaMom wrote:What brand and how did you give the Taurine?

It changes all the time depending which store I go to.

mommy4ev
Posts: 31
Joined: Tue Jan 10, 2017 6:58 pm

Re: New to Asd

Postby mommy4ev » Fri Jan 20, 2017 9:47 pm

FatherOf2 wrote:
mommy4ev wrote:That is awesome and I am so glad your child is doing better! What age did your child begin with EEG testing? I have a three year old and I can hardly get him to sit still for 2 minutes let alone 30 (or 24 hours) in a strange place with stickers/wires on his head. Any pointers? Also I heard DMG/TMG has anti-seizure properties. I am not sure if this is accurate but did that work with your child? (assuming you tried it). Thank you and I look forward to gaining more knowledge from your overflowing well!

First EEG was at 2.5 years, but sedated for 30 minutes. Second was at home at age 4. 3rd was at hospital at age 6. 4th was at home at age 7.7, which was last October. The pressure from the head band tends to calm down. iPad and TV help too. DMG made my son to communicate with us when he was 2.5yo, but also caused him to start head banging, and it stuck for several years even though we stopped DMG after a couple of days trying it. Scary stuff! You don't want to trigger self-injurious behaviors because once they are out, God help you. If you decide to try DMG, start with 60mg or even less. I would recommend to stay away from it completely. TMG was OK, but hard to say if it did anything. I don't know how effective DMG and TMG are at reducing seizures. I would recommend Taurine before bed at 500mg: it helps my son to sleep and supposedly reduces seizures. Magnesium should help too, but we never saw any effect from it. There are so many forms of Mg and not all of them are good. Ionic Mg is supposed to have a good absorption, but it comes with a lot of chloride, which is really bad for your brain. I think Epsom Salt baths is probably the only safe way to get Mg into the body and we did a lot of them.

If you want a good base of your supplement plan, you should start with Fish Oil (Nordic Naturals Children's DHA) and B-complex (I like Doctor's Best Fully Active B-Complex). These two are used in brain injuries and are safe. You can't go wrong with them. Give them in the morning. In the evening, you give Taurine for sleep and seizures. The rest is optional. You can try different things, but keep that trio. A good multivitamin can't hurt either. We made it simple: we use Smarty Pants gummies. We use it on a go and as a reward (cut it in halves and spread throughout a day). So, little sugar in those gummies doesn't get wasted.


Thanks again! Also, when you began Lamictal did it help with aggression, SIB, giggly behavior and stimming?

FatherOf2
Posts: 1594
Joined: Mon Mar 11, 2013 1:37 am

Re: New to Asd

Postby FatherOf2 » Fri Jan 20, 2017 10:43 pm

No to the whole list. Irritability slightly increased at the beginning at doses 50mg and below. But then it settled to the level before Lamictal, which was very low due to Trileptal. Right now we have no issues with irritability or SIB. It is hard to say if the irritability and SIB would have been as low as they are now if we didn't start Trileptal before Lamictal. Trileptal definitely reduced both.

Stimming became slightly worse and continues to be our biggest issue. Giggly behavior probably became worse because he became happier and goofier. But, the advances in socialization and language are so pronounced, that the listed drawbacks are worth tolerating. We have been commented by his speech therapist and ABA therapist how much he advanced, asking us to give a full list of things we are doing. Lamictal so far turned out to be the best thing we tried, even better than HBOT, which we will still do the 4th and last time this summer. I think in the future, Lamictal may become a standard ASD treatment in the presence of EEG abnormalities.


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