New to ASD....Need advice from experts (Fatherof2 please help us)

Discuss autism diets and biomedical treatments of autism.

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Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Oct 21, 2017 4:24 pm

Hello,
I am a mother of 3yr old boy who recently diagnosed with with autism.I read a lot of your experience on this forum but first time I am posting, my son is 3 yrs old and he is on the spectrum he is mostly speech delayed(Regressed at 18 months of Age)and understands minimal direction.We started treatment from rossignol medical center(Doctor : Salma Ahsan in Florida) they ran Tests:OAT (results : Abnormal)
CDSA( results : Mildly abnormal)
MTHFR : Tested positive for A1298c
FRAA: Negative

Right now we are on Antifungal and antibiotics (Nystatin and Flagyl)to treat the gut issues.The problem we are seeing is his speech is not improving and his behavior is getting worse each passing day we are not seeing any positive improvements in him instead we are noticing the regression behavior,he even stopped using the words which he was using earlier.He shows improvement one day but again he regress back to normal where he was before this is what happening with him from 18 months of his age.We are really worried and confused at this point don't really understand what we are missing here.we would like start HBOT treatment for him but we have no idea where and how to start this procedure
We live in northcarolina (charlotte) don't have any hbot centeR near by to start the HBOT treatment but we are ready to rental the HBOT chamber but we have no idea where to rent and what model is the best,we are really confused and worried about him,if someone could guide us on this that would be really helpful

Worried Mom
Maggy

williams_dad
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Joined: Sun Feb 12, 2006 6:47 am

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby williams_dad » Sat Oct 21, 2017 11:27 pm

personally I recommend against using antifungals like Nystatin
I've been on this forum way too long and usually people who go down this road
end up in a worse position than when started, usually with resistant yeast
http://spectrumsleuth.fr.yuku.com/forums/11/General/General

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Oct 21, 2017 11:46 pm

Thanks for your reply, we are totally new to this and we are just following what doctor suggested,do you think his speech is regressing because of nystatin we still have one more week left to complete the course,really confused and helpless at this point.We are hoping his speech will improve if we resolve his gut issues but instead he is regressing very badly

Maggy

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sun Oct 22, 2017 12:17 am

Maggy, your son sounds very similar to my son when he was 3. Could you tell me if MTHFR A1298C is homozygous (+/+) or heterozygous (+/-)? It is very important and may guide you in the right direction. If it is heterozygous, I wouldn't worry. But the homozygous A1298C one day may become a widely accepted cause of autism of its own, like fragile-X. In short, very simply, this mutation causes low dopamine and serotonin levels. So, you have a child with poor learning performance, limited interests, lack of motivation, and social anxiety on top of all that. Since you go to Rossignol medical center, and he is OK prescribing novel drugs, ask for a prescription of BH4 (Kuvan). This is an orphan drug and is very expensive, but covered by insurance. It will give the body BH4, whose production is affected by the MTHFR A1298C mutation. That in turn will raise dopamine and serotonin levels. I never tried Kuvan, but it is on my list to try next because it addresses the problem at its core. The other things that may help with this mutation are SSRI's (my son takes Lexapro and it helped to reduce anxiety) and dopamine raising substances (I am afraid to say ADHD drugs, but it is the simplest and FDA-approved way to increase dopamine). My son is currently taking Rhodiola and I am seeing a transformation to a more curious and playful boy. So, those 2 treatments (raise serotonin and dopamine) are your best bets. HBOT can help a lot, but it is a hit or miss type of thing. For us it was a big hit, because in addition to that MTHFR mutation, my son had low RBC and iron in his blood, and that may affect oxygen supply to the brain. In old ages, the smartness was always correlated with a good brain circulation. You also need to check EEG to make sure there are no abnormalities, which in my son clearly were causing mini-regressions in terms of forgetting words and their meanings.

I don't quite agree on most MAPS doctors treatment plans. It is almost like they know that what they prescribing at the beginning is just not going to work so that you keep coming back, until 5 years later and thousands of dollars wasted, they finally start addressing the core problem. They will start you on OAT test, which will be abnormal for probably 99% of population. They would use these imaginary yeast and bacteria markers in child's urine to start useless antifungals and antibiotics. They wouldn't even bother to check your child's stool culture to identify the strain of yeast and bacteria (not all drugs are effective against all strains). Then they will guide you towards chelation by testing your child hair. And here the results can be interpreted in many ways. If mercury in hair is too low, they would say "that is because you child's body doesn't excretes mercury and stores it in the brain and other internal organs - he/she has a broken detox system". If mercury in hair is too high, they would say "that is because your child has too much mercury". In either of these two scenarios, they will be telling you to do chelation. They will be prescribing a lot of blood tests, which frankly even they don't know what to do with. In the end, it will be all trial and error until you discover what really works. For some, GFCF or other diet help. For others, correcting abnormal EEG. And yet others benefit from chelation or HBOT or ADHD drugs. I am taking a bit simplistic approach: the problem is in the brain, and I am focusing on improving its function through
- improving blood circulation (give oxygen/energy and nutrients, HBOT and physical exercise help here)
- increasing brain activity (dopamine activates pre-frontal cortex and increases cognition/motivation/focus, some supplements like Creatine increase energy/ATP production, some herbs like Rhodiola do both)
- creating 'happy' neurons and increasing brain connectivity and synchronization (increase BDNF through SSRI like Lexapro, strengthen alpha-rhythm, which is like a computer clock)
- reduce abnormal neuronal firing, which leads to wrong connections and developmental regressions and behaviors (anti-seizure drugs like Trileptal and Lamictal are the best in this respect)

Why MAPS doctors are looking at urine if the problem in the brain is beyond me.

Nikkie111
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Joined: Thu Sep 24, 2015 6:26 am

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Nikkie111 » Sun Oct 22, 2017 10:00 am

The impact is definitely on the brain, not sure it always starts from there though
How else would you explain bloated tummies and constipation?
Anyway Maggy probably worth looking at allergies and, histamine issues . And for me no1 brain inflammation which only God knows what is the result of (possibly the result of viruses or gut issues leaking through!) it's worth having a look at what Buhner says for viruses - cordyceps is his number one for brain inflammation!

Other than that absolutely love Fo2's interpretation of a MAPS consultation! It is so true isn't it? Especially the metals testing! Its literally a comic show! I'd love to meet a doc that talks about a different solution/treatment!

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sun Oct 22, 2017 5:37 pm

Thanks Fatherof2 & Nikkie for your response, My son is heterozygous for MTHFR A1298C and his iron stores are low.
Currently he is under following medications/supplements for past 2 months.
1. MB12 - 3 times per week
2. Folinic Acid - Every Day
3. Sulforaphane - Every Day
4. Cod Liver Oil - Every Day
5. Vitamin D- Every Day
6. Iron supplements - Every Day
His speech has not improved by using any of the above medication.We are planning to start on leucovorin from next week.
Please advice on the best treatment plan, we are considering HBOT(Soft Chamber vs Hard Chamber) and Chelation therapy for speech treatment.
Is there a supplement or medication that helps specifically help with speech improvement.
Appreciate your help!!

Thanks
Maggy

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Mon Oct 23, 2017 2:39 am

1. Start with 1000mg Antarctic Krill oil 'Superba 2' + 'SPEAK' fish oil. At the same time start Inulin fiber gummies (any brand), 2 to 4 gummies/day.
2. Have you tested EEG? If not, I would recommend it right away. If EEG is abnormal, I would request Lamictal or Trileptal prescription.
3. Try Lexapro 5mg pm and 'Perfect' Rhodiola 200mg am. Both work in synergy.
4. Try CDP Choline and Galantamine (start with 1mg)
5. Try Quercetin 500mg am and Kre-Alkalyn Creatine 700mg am
6. Try MCT oil.
7. Try Piracetam, 400-600mg in am
8. Try HBOT hard chamber, 1.5atm, 100% oxygen inside, 40 dives

Do 1 and 2 in parallel. Stagger 3-7 by 1 month. If you don't see results from 1-7, do hard chamber HBOT. I put it the last on the list because it is a big investment of time and money, and there are much easier options to try first.

Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Oct 23, 2017 3:00 pm

Thanks Fatherof2 for your response
1 Antarctic krill oil superba 2 + speak fish oil( where do we get this? Do we have to give them at a time and how many times per day,what is the measurement)

2.We have our first appointment with neurologist in December, but I am not sure will they provide 24 EEG on my son or not if they are not ready to do EEG is there a way we can get the EEG done and how come we explain them about our situation?

3.Lexapro,Rhodiola,Quercetin,CDP Choline Galantamine ,Creatine,Piracetam (Do we need prescription from DAN doctor for these drugs)

4.HBOT hard chamber (we live in charlotte and we don't have any near by centers to do the HBOT do you recommend any near by places (we are ready to travel) to do this


I know I am asking too many questions hope you understand my situation
Thanks a lot for your detailed responses

Worried mom
Maggy

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Mon Oct 23, 2017 4:48 pm

1. 1 softgel of Krill oil 1000mg and teaspoon of 'SPEAK' oil in tge morning. You can poke a hole in krill oil with a fork and squize it into spoon. Buy krill oil in amazon, sports research brand. Buy 'SPEAK' OIL from lifetrients, in a bottle.

2. You can use in home EEG testing. There are companies that specialize in that and they will charge insurance. I am not sure about NC though. Rossignol can order it it for you. You can probably find a private neurologist. But you need a neurologist for long term.

3. Lexapro and galantamin require prescription. Ask Rossignol. The rest not. You can also get prescription on Lexapro from a child psychatrist. It is a good idea to find one and maintain long term relationship.

4. I wouldnt do soft chamber HBOT. I live in San Diego. We have a center where there are hard chambers. If you are willing to travel that far, I can give you the address. But I would recommend focusing on the above drugs and supplements first. Not everyone sees improvements from HBOT. Besides, language may get worse because HBOT will cause an oxidative stress, which is the cause of language delays. HBOT can also trigger a seizure because of the stress. So, you need to normalize EEG first.

Dont do everything at once because it will be confusing what works and what makes things worse. There are a bunch of other things to try. I am just giving you suggestions based on the personal experience. But everyone is different.

Aspie1983
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Joined: Mon Oct 16, 2017 8:56 am

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Aspie1983 » Tue Oct 24, 2017 9:12 am

Galantamine is easily available on amazon as a supplement aswell.

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Tue Oct 24, 2017 10:39 pm

Thank you guys for your response,the major issue we are seeing with our son is eye contact and name calling response,any suggestions to improve this and what is "MCT oil"

father of2,could you please send the address of the HBOT center which you use, how much they charge for each dive will it be covered by insurance by any chance and how many dives you took it for your son and after how many dives his speech Improved,my son is totally nonverbal at this time and about the abnormal EEG (he never had seizures but I am not sure about the absent seizures) are there any symptoms which indicates he is having absent seizures

Thanks
Maggy

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Tue Oct 24, 2017 11:23 pm

24hr EEG is critical. Even if a child doesn't have seizures, he/she can have abnormal EEG which affects speech and development. Some kids have Landau Klefner syndrome but diagnosed by mistake as autistic. LKS is very similar to autism, but is caused by certain type of abnormal EEG activity during sleep, which doesn't manifest itself as seizures. LKS as opposed to autism can be successfully treated by corticosteroids and valproic acid. You must do EEG to rule out LKS. You need to tell your neurologist that you noticed some shaking at night, screaming, whatever makes them prescribe EEG testing. I would NOT do HBOT until EEG is tested. You can make things worse.

Marya
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Marya » Tue Oct 24, 2017 11:38 pm

Fatherof2, do you prefer Krill oil to Fish oil? if so, why?

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Wed Oct 25, 2017 12:08 am

Marya wrote:Fatherof2, do you prefer Krill oil to Fish oil? if so, why?

It has phosphatidylcholine, which at one point got too much hype. So, you get your omega's and choline in one. PC is chemically bonded with EPA, which improves its absorption. Plus it has anti-oxidant Astaxanthin. I don't think it matters much which fish oil to take. I didn't notice much difference in one vs the other.

Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Wed Oct 25, 2017 12:17 pm

Thank you, will try to get the EEG done at first

Thanks

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Oct 28, 2017 6:46 pm

Hello Father of2,

Our pediatrician scheduled 45min EEG test on my son, I know that's not good enough to check any abnormalities but initially it's OK to test I guess my question is will we be able to find out anything in the 45 min EEG test

Thanks
MAGGY

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sat Oct 28, 2017 7:16 pm

45 min can show something if it is done during sleep. My son's 30min EEG showed abnormalities. Then we did 24hr EEG and it showef abnormal spiking every 5 minutes especially at night.

Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Oct 28, 2017 9:46 pm

Abnormalities in the sense brain Inflammation?I am reading brain inflammation caused by MMR vaccine?
We gave MMR vaccine twice (regular +booster)to my son before 12 months of his age since he has hetero A1298C mutation all these are caused by vaccine?

Thanks
Maggy

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

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sat Oct 28, 2017 10:36 pm

There are many possible causes for abnormal EEG activity. Brain inflammation is just one of possible causes, a most likely one. But what causes brain inflammation is the real question (vaccines, brain injury, allergy, virus or toxin).

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 06, 2017 12:09 pm

Hello Fof2,
We have our son's EEG appointment scheduled tomorrow morning ,how long will it take to know the EEG test results or it is instant ?
one more thing our MAPs doctor agreed to start on medication soon(right now we are only on supplements) she mentioned about Namenda or Creatine which one is good at improving speech or can we try both at the same time ?

Thanks
Maggy


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