tag:blogger.com,1999:blog-655962722302095847.post6836270077183954398..comments2024-03-28T22:33:35.806+01:00Comments on Epiphany: Agenesis of the Corpus CallosumPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-655962722302095847.post-90797114254084067852020-07-07T08:33:11.225+02:002020-07-07T08:33:11.225+02:00ACC is not treated anywhere I know of, but here...ACC is not treated anywhere I know of, but here's a case report from Iraq. It doesn't tell however if there was any effect on CC:<br />https://www.researchgate.net/publication/338176229_The_Use_of_Piracetam_and_Cerebrolysin_in_the_Treatment_of_Agenesis_of_Corpus_Callosum_with_ColpocephalyEC_CLINICAL_AND_MEDICAL_CASE_REPORTS<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-2107579698303208652018-01-04T08:42:18.349+01:002018-01-04T08:42:18.349+01:00Ling, Monty has used Flixotide, an inhaled steroid...Ling, Monty has used Flixotide, an inhaled steroid, for several years. It is now seen as the best treatment for children. It takes a week to show effect and very little is absorbed in the blood stream, so you do not get the side effects of oral steroids. It is easy to use with small children by attaching a spacer, which is like a face mask. Ask your doctor.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-44261207062622543812018-01-03T22:51:45.134+01:002018-01-03T22:51:45.134+01:00Thanks for asking. :)
The reason is that until I d...Thanks for asking. :)<br />The reason is that until I definitely know what is going on I feel I can't risk an anaphylaxis event in my daughter. I have been looking for the cause for this "asthma" or "wet breathing" or whatever it is for many months now, waiting a painfully long time for help from paediatric allergist. My daughter seems to get a milder but similar effect from other things as well. There just isn't any obvious pattern, though one theory is that it has to do with digested histamines/poor DAO. But it could also be something totally unrelated, like an effect on the swallowing reflex.<br /><br />We tried Montelukast for a week or so, but stopped it for two reasons: First, it didn't prevent the strange breathing from happening, second she got irritated from it (a known side effect).<br />I am seriously thinking of starting up Ponstan again soon, but will at least wait for some answers from allergy screening and WGS. Maybe it is possible to do a provocation test.<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-18911712925014733232018-01-02T09:50:29.782+01:002018-01-02T09:50:29.782+01:00Ling, why did you stop using Ponstan? Given you ar...Ling, why did you stop using Ponstan? Given you are not dealing with "mild" autism and your daughter is very young, so her brain is still developing, this idea of Knut would seem to be very relevant. <br /><br />The asthma-like side effects can be treated by your local doctor with well used and safe treatments like Flixotide or Singulair. Since you did see an effect from Ponstan, the benefits may greatly outweigh any side effects. Knut was never suggesting Ponstan for life, just during early development.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-18437765266132229172018-01-02T01:03:23.377+01:002018-01-02T01:03:23.377+01:00It's late after midnight, and I should be slee...It's late after midnight, and I should be sleeping...<br /><br />Anyway, looking for information om my daughters condition I found a paper that might interest more people than myself. It is technical, from 2012 and the abstract doesn't look much. But, it shows how genes such as TBR1, Auts2, SATB2, FEZF2, CTIP2, SOX5 and perhaps also CACNA1C (Timothy syndrome) and the Ski protein (associated with Retts syndrome) participate and relate to each other in the same processes where neurons either form corpus callosum or go elsewhere.<br />The article doesn't give any treatment hints per se, but shows what conditions might have similar treatments and why.<br /><br />http://europepmc.org/articles/pmc3511157<br /><br />"This role for Tbr1 in callosal development is also intriguing in the context of autism. Autistic patients seem to have callosal abnormalities, and in this context it is relevant that Auts2, a gene associated with autism, is regulated by Tbr1, which in turn is regulated by Satb2, a callosal fate specification gene. Recent studies suggest that a mutation in CAv1/2 (an L-type calcium channel) that is associated with Timothy syndrome, a form of autism, results in lower numbers of Satb2-expressing cells and an increase in Ctip2-expressing cells "<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-31771489775963855362016-12-06T12:43:31.833+01:002016-12-06T12:43:31.833+01:00RG,
I got your joke but thought since you are dis...RG,<br /><br />I got your joke but thought since you are discussing magnesium and taurine I might as well grab this opportunity to ask for your view..see I have a pretty good memory probably because my brain is still not fully occupied with the knowledge most of you seem to be brimming with. So I remember what most of you mention in your passing comments and you had mentioned that mg citrate was good for calming in your daughter but for the laxative effect.<br /><br />So the economist in you is avoiding a 'moral hazard', the one based in information Asymmetry by pushing me away. My attempt at a feeble joke! <br /><br />Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-74837728627407043392016-12-06T09:35:52.185+01:002016-12-06T09:35:52.185+01:00Hi Kritika,
When I cued you in on the comment, i...Hi Kritika, <br /><br />When I cued you in on the comment, it was my attempt at a feeble joke regarding PEE. I did not mean to advise you on magnesium or taurine. I am actually rather weak on the science, I am an economist by training, and everything I write is merely our experience and should be read like a case report. For analysis and advise, the best people are Peter, Agnieszka, Maja, Alli, Nat, Tyler et al. <br /><br />With regards to the magnesium citrate, I like it quite a bit, and would have continued to use it but for its laxative properties. If anything, it seems even more effective than the magnesium taurate. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-12139236933384802002016-12-06T09:24:59.731+01:002016-12-06T09:24:59.731+01:00The interesting thing is that my daughter's vi...The interesting thing is that my daughter's vitamin E on labs is always high even though she is not being supplemented. I wonder if its her body's reaction, keeping vitamin D low and E high. <br /><br />Thanks for the information about oregano, I'll read up on it. Thankfully, she likes it and we use it quite regularly. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-62908558348170026542016-12-03T16:09:56.295+01:002016-12-03T16:09:56.295+01:00Hi RG,
I am so sorry that your daughter is in cons...Hi RG,<br />I am so sorry that your daughter is in constant pain.<br /><br />There are many papers claiming that vitamin e protects against iron overload and also oregano is considered to inhibit iron absorption. You could check to see if they are relevant and safe for your daughter's high serum ferritin.<br />My son seems the type with high ferritin, too, but he sometimes, maybe due to low vitamin d, his complexion is so white that one could believe he has some kind of anemia.<br /><br />Perhaps magnesium taurate is a better form, I just used the free form taurine and as I read it can cause nitrogen imbalance to some people.<br /><br />Yes, this blog is an excellent means of knowing things better and finding effective solutions to help our children.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-86106077048114023062016-12-03T15:43:27.541+01:002016-12-03T15:43:27.541+01:00Hi RG,
Visceral hypersensitivity..I did not know ...Hi RG,<br /><br />Visceral hypersensitivity..I did not know this word but kind of sums up what I am sure my son and probably most autistics are lashed with, day in and day out. Your daughter probable subjection to chronic pain .. just to think about is hard.<br /><br /> <br />And it might not really be painful which the word actually means but just a strong can't be missed kind of sensation. I suspect that a lot of autistic kids might be registering changes in internal body mileu like blood pressure or routine digestive processes and responding behaviourally. I just had a nightmarish thought about what if for my son even the sensation of the heart beating becomes so amplified that it becomes a diversion. Thank God, it was just a passing thought. <br /><br />RG, between half an hour to one hour after being given the diuretic, my son would start displaying this hypersensitivity. Real odd behaviour, peripheral vision and internal focus..the kind he displays when just about to go potty. And this went on the entire day. Now whether it was sensitivity to the physical component of diuresis or something more sinister like falling blood pressure or electrolyte imbalance, I cannot say. <br /><br />RG, could you please suggest if mg citrate could work reasonably well as a source of magnesium and I might add taurine separately. The reason you avoid the citrate form and I prefer it happens to be same. I like the mild laxative effect of citrate might have as in my son, a slightly looser stool equals to 'full evacuaton, mission accomplished'. The same holds true for me so I know, although I am aware most would love to have the well formed kinds my son has sometimes which makes me go 'time for another orange'.<br /><br />I did trial magnesium earlier as a mineral combination as well as Epsom salt baths with no effect whatsoever but willing to go for another attempt. If magnesium hepls tolerate potassium better, I could once again repeat a diuretic regime. Again, the stool loosening properties of mg citrate might help as my son stools hardened up a little when on burinex, probably indicative of potassium deficiency as water intake was more than adequate.<br /><br />Please suggest. Citrate or the chelated version?<br />Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-64580537163483092972016-12-02T15:14:50.290+01:002016-12-02T15:14:50.290+01:00Hi Petra,
Any relief our children can get is won...Hi Petra, <br /><br />Any relief our children can get is wonderful. Today, my daughter's exercise therapist wanted to work her hard and asked me if she would tell me if she was in pain tomorrow. I said that I am not sure she is ever pain free, so what would be new to report? If suddenly she had no pain at all, then I'm sure she will have something to say! <br /><br />My daughter is not HFA or Asperger's, so I haven't tried Baclofen. <br /><br />I am going to wax eloquent here, potassium is our little miracle, spreading sunshine and joy...Kritika, this is also for you, I may be capable of some PEE after all. Our standard dose is 400mg once a day with 400mg magnesium taurate. Recently, I have been trying an additional 400mg with Bumetanide and 100mg of magnesium taurate. It has only been a couple of days with the additional dose, but it might be making the mirtazapine more effective for sleep. It also seems to make her calm and deliberate. I will update as I observe more. I remember Peter mentioning in one of his Potassium posts that the supplements are more effective than what is taken in through food. <br /><br />I don't do anything for the vitamin D because her serum ferritin is very high and I read that vitamin d can increase it further by its action on hepcidin. It seems to be recommended for anemia. A couple of times when I tried to supplement she reacted negatively, once with a seizure. I am not sure if it was a coincidence or not, I didn't test it long enough. What was very good was Vitamin A per Maja, I saw some very nice things the first day itself. Unfortunately, I made the mistake of adding in the vitamin D on the third day as I was worried about running the D even lower with the addition of the A. With the seizure I stopped both. I really need to try the Vitamin A again. <br /><br />Uric acid continues to be high. Prolactin is high, I think because of the verapamil, but the endocrinologist says its ok. <br /><br />Please don't apologize Petra, I am so glad for this blog and everybody here, where we are able to learn and share and help our children. <br />RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-21356147738158877262016-12-02T14:14:33.875+01:002016-12-02T14:14:33.875+01:00Nat, that's a word, visceral hypersensitivity....Nat, that's a word, visceral hypersensitivity. <br /><br />Its very interesting about mirtazapine and GERD. The withdrawal reports are a bit scary, I hope we never have to face them. It kept me off trying it for quite a while, including the epilepsy connection. <br /><br />Its so frustrating that there isn't a benchmark of labs that are used in autism trials, a loss of so much good information and understanding. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-38212051755875927872016-11-30T20:27:16.378+01:002016-11-30T20:27:16.378+01:00Peter, have a look at the following, relavant to G...Peter, have a look at the following, relavant to GERD and mGluR5 discussion.<br /><br /> " Transient lower esophageal sphincter relaxations (TLESRs) are the predominant mechanisms underlying gastro-esophageal reflux. TLESRs are mediated by a vago-vagal reflex, which can be blocked by interaction with metabotropic Glutamate Receptor 5 (mGluR5), γ-aminobutyric acid type B (GABA(B)), γ-aminobutyric acid type A (GABA(A)), and cannabinoid (CB) receptors"<br /><br />'Alpha-Tocopheral is considered the main ingredient of vitamin E, and is well known for its anti-oxidant properties and mood elevating abilities. Low levels of alpha-tocopheral in the brain are associated with health issues such as depression and neuronal degradation.<br /><br />The authors demonstrated that the actions of vitamin E can be blocked, if the cannabinoid type 1 receptor is blocked by a drug AM251. AM251 can block cannabinoid receptors and prevent them from being activated.<br /><br />The authors report that the vitamin E and cannabinoid receptor interactions are occurring in a region of the brain known as the hippocampus, which may help explain the benefits of vitamin E other than its anti-oxidant properties.<br /><br />Vitamin E can have profound effects on brain function, and it is widely used as a food additive. Without vitamin E in the diet a number a symptoms can start to appear, such as anxiety or ataxia.<br /><br />However, vitamin E does not directly activate cannabinoid receptors, like for example THC, instead alpha-tocopheral modulates the receptor. The receptor modulation from alpha-tocopheral may be an important part of normal cannabinoid receptor function. More research is need to fully understand exactly how alpha-tocopheral obtained from the diet can influence the cannabinoid system."<br /><br />This might explain why my son responds to vitamin e supplements.<br /> <br />Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35454028857717764802016-11-30T17:27:20.968+01:002016-11-30T17:27:20.968+01:00RG, I also think Nat is really onto something here...RG, I also think Nat is really onto something here as our following a loose gerd protocol has been proved promising so far.<br /><br />For a start, after fasting, and I can't possibly know how much of a coincidence this would have been, rhinitis subsided.<br />In addition, a little while after his last dinner, he said "I have got a pain here" pointing at exactly the spot that gets stressed during gerd. What seemed remarkable was that no tremors, confusion, extreme fear accompanied the pain.<br /><br />Peter connects gerd with mGlu5 and says there may be available solutions. I think we should investigate further; how far this could go in one's case?<br />Is fasting a quick solution for excessive glutamate? Probably yes-I am not sure if I have got it right here, we are talking about excessive glutamate, aren't we?<br /><br />I added Baclofen for LES in specific, not generally for anxiety, and this state of mind might help me to evaluate it.<br />Do you have any experience with Baclofen?<br /><br />Potassium seems to affect things and trialling different doses and times, before/after meal. I quitted the orange juice and lost almost 750 of dietary potassium which I have to add back and on top of that he was found marginally low.<br />How much/how do you administer potassium?<br /><br />You said that your daughter is vitamin D marginally low. We are also low, what supplements/foods do you have for this issue?<br />How is your daughter's prolactin and uric acid levels?<br />For us prolactin now seems ok and uric acid from years stable to 0,8 above normal means dropped to 0,4.<br /><br />RG, I apologize for asking you so many things all together, and really would like to thank you for your insightful comments.<br />Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35993841324003848912016-11-30T11:33:11.375+01:002016-11-30T11:33:11.375+01:00RG have a look at this on mitrazipine and GERD:
h...RG have a look at this on mitrazipine and GERD:<br /><br />http://www.healingwell.com/community/default.aspx?f=45&m=1401961<br /><br />(interesting term 'visceral hypersensitivity')<br /><br />Also this report: http://patient.info/forums/discuss/remeron-withdrawal-hell--34786<br /><br />Not to say that things are that simple and straightforward, as there are opposite types of reports - of people developing GERD after being on mirtazipine for a while.<br /><br />We need to go back and re-read that paper on the treatment trial of mirtazipine for autism with this in mind! <br /><br /><br /><br />Natnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-32027784478535178922016-11-30T03:36:57.300+01:002016-11-30T03:36:57.300+01:00Petra, it is very interesting about your son fasti...Petra, it is very interesting about your son fasting as soon as you read or wrote about it. The same thing happened to us when in 2015 my daughter took up Intermittent Fasting (IF) in 2015. This is where there is a gap of 18 hours between the last meal of the day and the first meal of the following day. There is a range from 14 to 18 hours that is considered acceptable. My daughter did the 18 hours. She kept it up for over a year and lost 75lbs. This was in spite of being both hypothyroid and having PCOS. She had no weakness or loss of energy. Her insulin levels seemed more stable, with no visible signs of hypoglycemia. IF is talked about as being as effective as whole day fasting. <br /><br />She gave it up on her own, when she decided to eat a late night supper of eggs every day. <br /><br />I have personally tried IF. It worked well when I was eating low carb, high fat. I felt great on it, my labs were excellent, better than they had been in ages. I recently tried IF again, this time around eating a regular diet, not low carb, and from about 14 hours it made me weak. So, I gave it up after a week. It was great for my GERD, which went away during the week and reappeared in a milder way a week after stopping. <br /><br /><br />RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-72760900068480601362016-11-30T02:44:46.859+01:002016-11-30T02:44:46.859+01:00Nat, I think you are really on to something here. ...Nat, I think you are really on to something here. I have noticed that my daughter's appetite and interest in foods improved after adding the potassium citrate. I assumed that it was because the potassium addressed some sensory issues, but your theory seems more plausible. The mirtazapine took this to a much higher level by widening her interest in foods and flavors. The other day she ate a vietnamese beef dish cooked with mushrooms and onions, along with a big salad of mixed greens and a side of green beans. This was the first time she's voluntarily eaten a salad with a vinaigrette dressing. The best part is also that she is eating around the plate rather than in sequence where she used to finish one dish off before starting on another. <br /><br />I have never known if she has GERD or not, and am happy that I have something that could be prophylactic as well. Many thanks. RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-52391181421453163572016-11-28T18:41:13.850+01:002016-11-28T18:41:13.850+01:00Nat, as soon as you told me about GERD and I was l...Nat, as soon as you told me about GERD and I was looking for interventions, my son declared 24h fasting again.<br />I googled fasting and GERD and found out it helps, so I would have had the chance to observe. During fasting rhinitis symptoms almost disappeared and his mood improved, he was quite weak, though.<br />I also goggled Gerd and baclofen, to which was a responder, and saw that it strengthens muscle relaxation.<br />Some people use calcium channel blockers for Gerd, you can have a look at the mechanism.<br />The following morning I substituted the big fresh orange juice with herbal tea with a little honey and lemon. I was very careful with dinner and also raised the head part of the bed 15cm. I think we have had a considerable improvement.<br />I added back the melatonin, which was left aside for a while, and supplemented vitamin e 200IU and liquid potassium. For some reason(s) he doesn't seem to react badly on the third day of vitamin e anymore.<br />I am also ready to go back to Baclofen. I remember a paper, I had found then, about Baclofen and its GI efficacy.<br />Just hope this works.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-75292410327240375422016-11-28T16:58:53.432+01:002016-11-28T16:58:53.432+01:00Peter,
I was wondering about differentiating betw...Peter,<br /><br />I was wondering about differentiating between digestive issues arising related to physiology in autism versus those arising out of behavioural or sensory problems. For instance, selective diet or holding back motions, observed in many autistic kids, can cause GI dusturbsnces. It's very difficult to isolate causes from effects in autism and I feel hyper sensitivity to stimulus is a big piece if the puzzle. Sensitivities and behaviour might feed off abnormal gi processes and reverse is also true..in autism.<br /><br /> My brother, husband and nephew, all very restrictive in their diet choices have digestive issues sans behavioural effects..at least overt ones..who knows about subtle ones?<br /><br />In my son, who can be described as having reasonably healthy digestion and diet, even a very minor disturbance creates behavioural and sensory issues. If a flickering light can trigger behaviour what can we say about internal body processes.<br /><br />As far as physical GI symptoms are concerned, it would be sensible to assess what percentage of NT population with selective diet has those problems. Then probably we will get a better idea about what is causing what. <br /><br /><br /><br /><br /> <br /><br />Kritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-38147778742197601352016-11-28T15:52:00.054+01:002016-11-28T15:52:00.054+01:00Nat, one known connection between GERD and autism ...Nat, one known connection between GERD and autism is mGluR5.<br /><br />Here is a paper connecting GABAb, mGluR5 and GERD.<br /><br />Treating GERD should also treat autism in some cases, with<br />GABAb receptor agonists or an mGluR5 antagonist.<br /><br /><br />http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2982.2011.01868.x/pdfPeter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-46464059724275643072016-11-28T13:20:23.721+01:002016-11-28T13:20:23.721+01:00Peter,
I wasn’t aware that baclofen is an effect...Peter, <br /><br />I wasn’t aware that baclofen is an effective treatment for reflux, and that GABAb receptors are involved in mechanisms of some types of reflux.<br /><br />Is it possible, I wonder, that:<br /><br />1. because of this GABAb dysfunction people with autism are more prone to reflux, and are suffering not only more ‘heartburn’ and pains but also symptoms and consequences of silent reflux. Silent as in not-involving-heartburn. I am not ignoring things like gut dysbiosis, SIBO, allergies and deficiencies in digestive enzymes, pancreatic juices etc as triggers of GERD, but rather adding GABAb dysfunction to this list. Btw rates of diagnosed GERD are known to be high in autism, and “in people with ID, the incidence of GERD may be as high as 48%” (this percentage comes up when someone bothers to carry out a systemic investigation!)<br /><br />2. that the effects of some of the supplements and medications for reducing symptoms and behaviours in autism are at least partially linked to them reducing GERD and its ‘silent’ consequences. Especially since these silent consequences - i.e. Not immediately associated with gerd and so possibly overlooked, can include things like ear infections, sinusitis (brain fog!), headaches/head pressure, ringing in ears, feeding difficulties or food refusal, self-harm/pain/aggression, hypersalivation… Not to mention that reducing reflux would have immediate positive effects on quality of sleep. Internet GERD patient help forums are full of people describing how reflux triggers their brain fog, difficulty concentrating etc. And this is not always linked to length or quality of sleep, the effects seem to be direct ('aspiration of gastric juices' springs to mind!!). <br /><br /><br />Apart from PPI’s there is evidence that the following things successfully reduce GERD symptoms:<br /><br />— H2 blockers (remember famotidine trial for autism)<br /><br />— melatonin<br /><br />— low carb diet <br /><br />— quercertin, turmeric, ALA (antiinflammatories and antioxidant in general)<br /><br />— "… Baclofen offers an option to inhibit both acid and non-acid reflux, and thus an option for treatment of refractory GERD… it has not only been used traditionally as a muscle relaxant for many years, but has also been shown to reduce transient lower oesophageal sphincter relaxations (TLESRs) in both animals and in humans. Clinical studies of its short term or single dose use have demonstrated its effectiveness in reducing the number of TLESRs, and likewise reducing the number of reflux events.<br /><br />— gluten free diet, where either celiac or NCGS is the trigger of GERD (https://www.verywell.com/can-gluten-cause-acid-reflex-gerd-563107)<br /><br /><br />I have a feeling this is part of the puzzle that has been staring us in the face, one of autism ‘mysteries’ hidden in plain sight. <br />Natnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-43521528275976190252016-11-28T11:32:54.089+01:002016-11-28T11:32:54.089+01:00Petra, was that you who reported good effects of f...Petra, was that you who reported good effects of fasting in your son? Could that be related to this, ie fasting simply reducing GERD?Natnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-83260151087266848182016-11-27T17:01:08.979+01:002016-11-27T17:01:08.979+01:00Thank you very much RG. This account helps me enor...Thank you very much RG. This account helps me enormously in how to approach things related to epilepsy. Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-8290761492894382932016-11-27T12:18:46.380+01:002016-11-27T12:18:46.380+01:00Hi Petra,
My daughter does have an official diag...Hi Petra, <br /><br />My daughter does have an official diagnosis of epilepsy because the first non febrile one was at the school playground and the paramedics were called in who then took her to the ER where they did a full work up. <br /><br />I was like you and used to wonder if the meltdowns, staring off into space etc were seizures. During the 5 day video EEG we found that they weren't. At the hospital stay they did a lot of things such as exposing to flickering lights, disco lights, hot temperatures, slight starvation, keeping her awake late into the night when admitting and then attaching all those electrodes, quite painful since they use a glue that has to stay on for the entire stay, past midnight. <br /><br />Even two days may not be enough as my daughter did not have any seizures over five days. There was one non epileptic 6 second spike that the neurologist classified as normal. There are very few neurologists who are able to interpret EEGs well, I know none of the ones at Stanford or UCSF can. I have a friend who suspected seizures in her son because of his behaviors and near psychotic outbursts and took him to Dr. Mike Smith in Chicago who was able to interpret the EEGs done by a Stanford neurologist much more accurately and treated him with steroids and Depakote and the boy had a clear EEG in six months. <br /><br />Its also a fact that a regular EEG may not catch subclinical seizures. There was a special one called Deep EEG used by Dr. Frank Duffy and Dr. Aditi Shankardas, but three years ago when I was trying to contact them it was impossible. Harvard and Massachusetts General said he was not working there anymore, but recently I see that he is publishing papers again. He seems to be among the best at reading EEGs. Here is one on using EEG to differentiate between Aspergers and HFA:<br /><br />http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-175RGhttps://www.blogger.com/profile/07458829468580940361noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85392770753400398112016-11-26T17:00:56.238+01:002016-11-26T17:00:56.238+01:00Hi RG, thanks for your reply. It's always inte...Hi RG, thanks for your reply. It's always interesting to read your comments.<br />My nephew, from my first cousin, is not diagnosed on the spectrum but epilepsy overlaps with Asperger's.<br />His mother (my first cousin) was diagnosed with celiac and Hashimoto disease and his uncle, also my first cousin, was diagnosed with Asperger's later in life. Both conditions could indicate predisposition to ASD.<br />I see that your daughter, although she shows visible signs of epilepsy, isn't officially diagnosed with it. This is what I am trying to investigate seriously this time. My son is not supposed to have seizures according to a simple EEG and MRI and these are not enough to have a proper conclusion. A top neurologist, specializing in epilepsy told me that he should be kept in clinic at least two days for testing if we are to investigate this possibility. Then we might have a conclusion.<br />In other words, I am saying that if all those autistic meltdowns ans shutdowns are not epilepsy then what are they? We need reasonable explanations.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.com