Melissa in Australia Posted February 8, 2019 Share Posted February 8, 2019 twins 2 was sitting beside me while doing his schoolwork today when suddenly he keeled over, hit the floor head first and had a seizure. it was awful to behold. It lasted about a minute. I rang the GP and they saw us straight away. they spoke to the on-call peadiatrician 200 km away ( because we live rural). His regular Peadiatrician is on leave. Amazingly they have fitted him in to see this regular peadiatrician as soon as he comes back from holidays, in 10 days. ( which is amazing it usually takes weeks or months to see him) Twin 2 told me afterwards that he fell asleep and woke up because I was yelling so loud for dad.He has no recollection of what happened. He was very tearey and upset for a while afterwards, but that might be because of how I reacted. On-call peadiatrician alluded that seizures are something that often occurs with FASD. While we haven't got a FASD diagnosis yet all indicators are pointing in that direction. 35 Quote Link to comment Share on other sites More sharing options...
Tap Posted February 8, 2019 Share Posted February 8, 2019 (((((Hugggsss)))) Seizures are so scary. I am glad you were there and were able to help him right away. It astounds me that the office is waiting so long to get him in. Is that normal where you live? I live just outside a major US city and would expect to be seen within a day or so. Our GP would likely order tests ordered/completed and have a referral to a neurologist in place within 10 days. If our GP wasn't avail, then another in the practice would see the child to get the referrals started. 1 Quote Link to comment Share on other sites More sharing options...
Junie Posted February 8, 2019 Share Posted February 8, 2019 Hugs to you and your little one. 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2019 Author Share Posted February 8, 2019 mostly the delay in seeing someone is due to my remote location. It was amazing that I was able to see a GP straight away. there is typically a wait of up to a week unless it is an emergency due to the limited number of Doctors in remote rural areas. the GP said that for a normal child they would not do any testing unless the child has 2 seizures. but because of twin 2's very complex medical conditions he sought immediate pediatrician advice. Here in Aus only children with medical conditions see pediatricians - they are considered specialists. the twins see their peadiatrician every six months normally . they only saw him in late November. He is on his annual leave at the moment and will see twin 2 within days of him being back to work. I am guessing that if the peadiatrician wants us to see an neurologist we will have to travel to Melbourne. Quote Link to comment Share on other sites More sharing options...
klmama Posted February 8, 2019 Share Posted February 8, 2019 What a relief that he'll be seen so quickly! Praying all will go will and that this was just a fluke incident, with no recurrence. I'm sorry to learn that the twins might have FAS. 😞 I'd like to share a bit of hope, in case you weren't aware that sometimes a change of diet can lead to improvement in symptoms. A friend adopted a girl with FAS who came with all of the behavioral baggage and learning issues, but after going on a gluten-free diet with no artificial colors, flavors, or preservatives, plus some supplements (I'm not sure what kind), she calmed and started learning better. She still had some challenging behaviors, but much, much less than before; over time, increasing maturity helped smooth a lot of the remaining rough edges. She's an adult now, in college, and doing well. Here's hoping for a similar positive outcome for your dc.... 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2019 Author Share Posted February 8, 2019 1 hour ago, happysmileylady said: Wow. I am kinda finding that all hard to imagine. In truth, if my kid hit the floor head first and immediately had a seizure, I would at minimum drive my kid to the ER....I might call 911 even. I would be so afraid that the blow to the head caused the seizure. Is he feeling better now? Did they give advice on letting him sleep tonight? ETA: I am kinda feeling a bit spoiled regarding medical access. He hit the floor head first because he had loss conciseness. he was having the first part of the seizure when he fell. We saw a Doctor straight away. faster than if I had gone to ER there is nor really sure what you mean by poor medical access Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2019 Author Share Posted February 8, 2019 1 hour ago, klmama said: What a relief that he'll be seen so quickly! Praying all will go will and that this was just a fluke incident, with no recurrence. I'm sorry to learn that the twins might have FAS. 😞 I'd like to share a bit of hope, in case you weren't aware that sometimes a change of diet can lead to improvement in symptoms. A friend adopted a girl with FAS who came with all of the behavioral baggage and learning issues, but after going on a gluten-free diet with no artificial colors, flavors, or preservatives, plus some supplements (I'm not sure what kind), she calmed and started learning better. She still had some challenging behaviors, but much, much less than before; over time, increasing maturity helped smooth a lot of the remaining rough edges. She's an adult now, in college, and doing well. Here's hoping for a similar positive outcome for your dc.... I know that you are trying to be encouraging but do you realize that FASD is actually physical brain damage. diet isn't going to fix it. it is like saying that someone who has a deformed limb will be cured if they eat differently We always have a natural diet,with no artificial colours flavors or preservatives. 5 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2019 Author Share Posted February 8, 2019 1 minute ago, happysmileylady said: I apologies if I misunderstood. You said "rang the GP" and I thought that meant a phone consultation rather than in person. It could certainly be a misunderstanding of cultural terminology. sorry, my mistake in typing. I rang the GP and they saw us straight away. the GP then rang a Peadiatrician for advice while we were there. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2019 Author Share Posted February 8, 2019 it was very scary. it is amazing how long a minute can be 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted February 8, 2019 Share Posted February 8, 2019 Wow, that is scary. My 17 year old recently passed out during an eye exam. I ran across the room and managed to keep him from falling out on his head. It was terrifying though. It is just 'not normal' that I think our brains just totally freak out when we see our kid pass out. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 8, 2019 Share Posted February 8, 2019 I am sorry to hear this. Do try to leave this appointment with the dual emergency pack (usually diazepam—rectal application) to stop the seizures even if there is some question now as to type/impetus. This is true especially because you live so rurally (as we once did). Seizure damage is cumulative and you want a way to stop it if it goes on for more than x minutes. 1 Quote Link to comment Share on other sites More sharing options...
Tap Posted February 8, 2019 Share Posted February 8, 2019 11 hours ago, Melissa in Australia said: mostly the delay in seeing someone is due to my remote location. It was amazing that I was able to see a GP straight away. there is typically a wait of up to a week unless it is an emergency due to the limited number of Doctors in remote rural areas. the GP said that for a normal child they would not do any testing unless the child has 2 seizures. but because of twin 2's very complex medical conditions he sought immediate pediatrician advice. Here in Aus only children with medical conditions see pediatricians - they are considered specialists. the twins see their pediatrician every six months normally . they only saw him in late November. He is on his annual leave at the moment and will see twin 2 within days of him being back to work. I am guessing that if the pediatrician wants us to see an neurologist we will have to travel to Melbourne. I misunderstood. I am glad he was seen right away and will see the pediatrician soon. I hope it was a one time thing and the doctors can clear him from anything bad going on. My kids don't have seizures, but I used to work in a group home who had poorly controlled seizures. It was heartbreaking to see what his body went through in any given week. There are so many new medications on the market, and some old ones that have really proven themselves over time. It seems like so many more people get control over their seizures than in the past. (I work in pharmacy). I know several children personally who had a couple of seizures as young children, were on meds for a few years, and since they were seizure free for a period of time, they went off meds and have done great. Many hugs to all of you! 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted February 8, 2019 Share Posted February 8, 2019 (((hugs))) Melissa 1 Quote Link to comment Share on other sites More sharing options...
Selkie Posted February 8, 2019 Share Posted February 8, 2019 I'm so sorry, Melissa. That must have been so scary. 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted February 9, 2019 Share Posted February 9, 2019 19 hours ago, Melissa in Australia said: I know that you are trying to be encouraging but do you realize that FASD is actually physical brain damage. diet isn't going to fix it. it is like saying that someone who has a deformed limb will be cured if they eat differently We always have a natural diet,with no artificial colours flavors or preservatives. Yes, I do understand that the brain is physically damaged. And I also know that there have been improvements for some FASD kids in going gluten-free and in some cases casein-free, along with certain supplements - more people than just my one friend's dd. It's similar to the kids with autism who respond to the GFCF Diet, Feingold Diet, Specific Carbohydrate Diet, GAPS Diet, and/or nutritional supplements. For some kids the special diets/supplements help provide the nutrients and neurotransmitters needed to make the brain function better so that the therapies and education are more effective, giving those kids a brighter future. Unfortunately, everyone won't respond, but the only way to know is to try. It might be worth researching. There's not a lot of info available about how these things specifically relate to FASD, but I found a couple of articles and pulled up info by a researcher I respect greatly. Here are links, if you are interested in reading: Article from North American Council on Adoptable Children: https://www.nacac.org/resource/the-gfcf-diet/ Article by the author referenced in the one above: http://come-over.to/FAS/FASDnutrition.htm William Walsh, PhD, is a respected researcher who has developed successful nutritional protocols (specific combos of vitamins, minerals, amino acids, diets) to help people with depression, anxiety, schizophrenia, autism, ADHD, and other disorders improve. I know several people who have benefited immensely from his protocols. Here are comments he made in 2003 regarding Pfeiffer Treatment Center patients with FASD: https://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders/#FA "We have seen dozens of patients with a diagnosis of fetal alcohol syndrome. Most of them had an associated diagnosis of ADHD or a behavior disorder. We’ve never done a formal outcome study on this group, so I have no treatment efficacy statistics. However, I remember years ago being surprised that so many of these children were responsive to our treatments and turned out so well. An even bigger surprise to me was learning that many cocaine babies become highly-functioning, well-adjusted children.” That treatment center closed a few years back; Walsh has his own research center now. Here's his website: https://www.walshinstitute.org/ He provides training on his nutritional protocols to medical personnel, including in Australia. He also has a book, but I have no idea if it mentions FASD. It may still have useful info, as treatment is based on individual biochemistry, not just diagnosis: https://www.amazon.com/Nutrient-Power-Heal-Biochemistry-Brain/dp/1620872587/ref=sr_1_1?keywords=william+walsh&qid=1549671624&sr=8-1 There is a lot more useful info related to the GFCF diet and nutrient supplementation on some autism websites, such as at https://tacanow.org/ under Family Resources. You might also want to read about the GAPS diet and others I mentioned above. Every individuals needs are different. Regardless of what you choose to try or not try, I do wish you the best with your little ones. Quote Link to comment Share on other sites More sharing options...
JustEm Posted February 9, 2019 Share Posted February 9, 2019 that sounds really scary. I'm glad he was able to get seen right away and he'll be seen by the pediatrician soon. Hug to you and him. 1 Quote Link to comment Share on other sites More sharing options...
Garga Posted February 9, 2019 Share Posted February 9, 2019 I know nothing of your son’s history so I’ll probably sound horribly naive, but are you sure it was a seizure on top of falling unconsious? My husband passed out a few hours after having a stent put into his heart and proceeded to make gutteral noises and flop around. I 100% thought I was watching him die in front of my eyes. But it wasn’t a seizure. I found out afterwards, that some people do look like they’re having seizures when they fall unconscious, but they’re not seizures. It’s just how they fall unconscious—they flop around. It’s still serious that your son fell unconsious, but maybe it’s not a seizure on top of it? But I suppose the doctor would have known that, right? Oh, I’m just hoping it’s not as bad as it could be. 😞. I’m sorry if this isn’t helpful. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted February 9, 2019 Share Posted February 9, 2019 I'm so sorry. How scary... I'm sorry that indications point to FASD. Hope you can get some solid answers and help 1 Quote Link to comment Share on other sites More sharing options...
stephanier.1765 Posted February 9, 2019 Share Posted February 9, 2019 Hugs. It's all I got but I wish it was more. 😞 My heart goes out to your whole family during this stressful and scary time. Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted February 9, 2019 Share Posted February 9, 2019 If you're wondering what you can do to try to avoid seizures between now and when he sees the doctor, a major trigger for my dd and many others with seizures is messed up sleep. If possible, keep him on a regular sleep schedule. Waking up too early is worse than staying up too late (though either can bring on seizures in dd). For eeg's when they try to make you have a seizure, they sleep deprive you by having you get up at like 3:00 or 4:00am. Speaking of sleep deprivation, I guess I should go get dd to bed now... 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 9, 2019 Author Share Posted February 9, 2019 3 hours ago, Garga said: I know nothing of your son’s history so I’ll probably sound horribly naive, but are you sure it was a seizure on top of falling unconsious? My husband passed out a few hours after having a stent put into his heart and proceeded to make gutteral noises and flop around. I 100% thought I was watching him die in front of my eyes. But it wasn’t a seizure. I found out afterwards, that some people do look like they’re having seizures when they fall unconscious, but they’re not seizures. It’s just how they fall unconscious—they flop around. It’s still serious that your son fell unconsious, but maybe it’s not a seizure on top of it? But I suppose the doctor would have known that, right? Oh, I’m just hoping it’s not as bad as it could be. 😞. I’m sorry if this isn’t helpful. I really don't know. Only what I saw and what Twin 2 told me. He said he was asleep and doesn't know at all what happened. What I saw was jerking movements of limbs and head with fully dilated eyes. Hopefully the Peadiatrician will be able to help and will hopefully refer us for neuro assessments. Both twins have very complex medical problems :- IDs, PTSD, RAD, Severe language problems, indicators of Autism, ADD, Sensory Issues, Severe neglect in first few years of life, poor maternal health, exposed to numerous bad things in-ureto, self regulation problems, significant developmental delays etc. all this points to FASD but they haven't been specifically tested for this . both twins have a very natural wholesome diet, sleep really well and are not ill. the episode with twin 2 was completely out of the blue- hence why I was so startled. 1 Quote Link to comment Share on other sites More sharing options...
kiwik Posted February 9, 2019 Share Posted February 9, 2019 On 2/8/2019 at 6:40 PM, Melissa in Australia said: it was very scary. it is amazing how long a minute can be The longest few minutes of my life were when ds9 was having his first seizure. He had two and they would have investigated if he had a third. Good luck. 10 days is pretty quick especially when the paediatrician in on leave. 1 Quote Link to comment Share on other sites More sharing options...
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