RE: Parents with Children of special/high needs children support thread
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RE: Parents with Children of special/high needs childre... - 8/27/2008 9:36:49 PM
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nicole6598
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Thanks Myka, and thanks for joining in on the conversation.
What were some of DD's symptoms that made you suspect dairy? How is ds doing now?
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RE: Parents with Children of special/high needs childre... - 8/27/2008 10:05:28 PM
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Auben
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quote:
Tamara- has there been much success with the diet? Would he have seizures etc often? Does he talk now?
Sorry I haven't replied. I didn't really know what to reply to some of your questions and just got busy.
The diet is generally successful, but not for every child. Luke is doing well on it. He was having multiple seizures every day (but still not as bad as most kids with LGS) and hasn't had any since Saturday. They've spaced out quite a bit.
He does talk and his development has been normal. The only thing we've noticed is his speech became less clear (difficult to understand) and his running regressed to a 2 year old level since the seizures started in January. Since starting the diet his speech is clear again (most of the time--he is 3). The running is the same but he feels more confident in his movements which is nice to see.
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RE: Parents with Children of special/high needs childre... - 8/28/2008 6:19:10 PM
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nicole6598
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Wow, thats strange isn't it how the diet has helped his speech to get better, or do you think that part is coincidence? I have never heard of it before. Yay for no seizures since Saturday! what's the longest time period he has had between them?
ETA I just looked up the diet, its pretty full on. Is the whole family on it or just your son? It would be tricky if there was dairy intolerance. What about consitpation, seeing as you cut down the carbs which do provide alot of fibre (I know you can get it from other foods). I found that when I cut wheat out of our diet for just a week there was constipation.
< Message edited by nicole6598 -- 8/29/2008 1:41:56 AM >
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RE: Parents with Children of special/high needs childre... - 8/28/2008 6:59:08 PM
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Homegrownkids
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quote:
I was wondering what helps or helped you through those days, times when you were worn out, tired, scared etc? Maybe we can share that to encourage one another?
I can tell you my experience. After Noah was born, I felt immediately thrown into a whirlwind. I remember thinking that I just wanted to stay home and hold, cuddle, and enjoy him. Two things that helped me... and they were minor things.... is 1.) someone told me to watch myself. With just having a baby, and then all the appointments, sleepless nights, etc.. it could be enough to throw me into a post pardum depression. 2.) Buy Paper Plates. No one needs to be doing dishes after they have just had a baby. I also remember crying and praying a lot, mostly because of fear of the unknown and not wanting it for your baby. Praise God though, we have not had to face a whole lot with him!!! I also remember, and still do, share with people about his syndrome and what could be involved with it. Another thing I did, was started a scrapbook full of prayers. I had relatives and friends email, or mail me prayers for him and I can still read them to this day and someday I will share them with him.
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RE: Parents with Children of special/high needs childre... - 8/28/2008 8:29:05 PM
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barbhuff
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I thought I posted here, but I guess I was thinking of another thread.
I'm mom to five, four adopted special needs according to the state, but only two of them have major concerns. Our 5 yo has been diagnosed reactive attachment disorder, ADHD, and fetal alcohol disorder. One of our 4 yos has fetal alcohol effects, ADHD, and possible Aspergers. We'll know more after more tests. That possibility threw me. I never thought of that possibility until they brought it up last week.
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RE: Parents with Children of special/high needs childre... - 8/28/2008 10:27:01 PM
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nicole6598
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Homegrown- I have a dishwasher, its a life saver for those days when baby needs you or you are so exhausted that the thought of washing a spoon makes you cry  That's a nice idea about the prayers you have kept for him, I am sure he will appreciate that alot! I have trouble with the watching myself one. My hubby to date hasn't been very supportive or helpful, with either kids really, and having no family around makes it harder to get that bit of time out.
Barbuff- welcome! How long have you had your kids for? Since they were babies? How did you feel when they told you that 4 yo may have Aspergers? Do you have alot of support?
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RE: Parents with Children of special/high needs childre... - 8/28/2008 10:47:44 PM
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Homegrownkids
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quote:
My hubby to date hasn't been very supportive or helpful, with either kids really, and having no family around makes it harder to get that bit of time out.
I don't want to go into details on a public forum about my own family..... but I can tell you that I've been there, and I know it gets exhausting! Try and soak in all those good moments with your kids, it helps get through the harder ones.
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RE: Parents with Children of special/high needs childre... - 8/28/2008 11:28:49 PM
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Mrs.Wifey
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quote:
ORIGINAL: Auben
quote:
Tamara- has there been much success with the diet? Would he have seizures etc often? Does he talk now?
Sorry I haven't replied. I didn't really know what to reply to some of your questions and just got busy.
The diet is generally successful, but not for every child. Luke is doing well on it. He was having multiple seizures every day (but still not as bad as most kids with LGS) and hasn't had any since Saturday. They've spaced out quite a bit.
He does talk and his development has been normal. The only thing we've noticed is his speech became less clear (difficult to understand) and his running regressed to a 2 year old level since the seizures started in January. Since starting the diet his speech is clear again (most of the time--he is 3). The running is the same but he feels more confident in his movements which is nice to see.
You are doing such a great thing for him! I know it's hard to alter the diet of the entire family(although you seemed pretty crunchy and healthy to begin with), and I have a lot of respect for you, that you were willing to do so and without complaining.
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RE: Parents with Children of special/high needs childre... - 8/29/2008 6:06:27 PM
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myka
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quote:
ORIGINAL: nicole6598
Thanks Myka, and thanks for joining in on the conversation.
What were some of DD's symptoms that made you suspect dairy? How is ds doing now?
DS is doing wonderfully -- he is in high school and really enjoying the classes that he is choosing.
DD's symptoms were not necessarily typical; she had eczema, eye watering/mucus (due to a small tear duct), weird bm's (not mucousy, but not typical -- that still hasn't been worked out) oh, and low weight gain. I also have a niece who is/was allergic to dairy (as well as other allergies), and her main symptom is constipation -- at least with the dairy ingredients. She had spent the first 2 years of her life with a lot of problems until her allergies were diagnosed.
With dd, I started by eliminating dairy, and I noticed the eye problem improved quickly.
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RE: Parents with Children of special/high needs childre... - 8/29/2008 6:59:38 PM
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nicole6598
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Myka- is DD still off dairy?
Glad to hear your son is doing well!!
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RE: Parents with Children of special/high needs childre... - 8/29/2008 9:09:55 PM
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myka
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Nicole,
We have relaxed her restrictions a bit; she is doing better with dairy, just not a lot of it.
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RE: Parents with Children of special/high needs childre... - 8/30/2008 10:45:02 PM
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nicole6598
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I have a question for those whose children have had allergies or suspected allergies. My mother told me about a friend of hers whose child had the same symptoms as Nathaniel and was taking to an osteopath to have adjustments on her spine, once she went she had no problems whatsoever with her wind etc. Did any of you try that before you thought it was an allergy? If not, why didn't you try?
I have looked into it before but hubby is against it. We are going down the "he has an allergy" route first however.
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RE: Parents with Children of special/high needs childre... - 8/31/2008 2:17:02 AM
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Godsgirrl
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Hi everyone. My name is Stacy and I am a 31 year old married woman who has Asperger's Syndrome. My son who is 8 also has AS and we are pretty sure that my 6 year old daughter has it as well. I am going to take her to get an assesment in a couple of weeks. Finding out that I have lived my entire life with AS was quite the shock but the answer to most of my life questions. My life has always been difficult although I grew up in a good family, I am intelligent but can't focus my energy on any one thing good enough to get ahead. Finding out that my son had AS was the biggest revelation of my life as I finally listened to God and what he was trying to tell me for so long. His diagnosis led to mine, but only after a very painfull incident that happened with me and a man who basically "preyed" upon me for 4 months. Its amazing how God wakes us up.
Right now I am home-schooling because we live up at a ski resort in Idaho and I run my own business with my husband, but due to the unfortunate incident that I mentioned above, we are in the process of hopefully selling our business to get out of our horrible debt and simplify our lives. Anyhow, I can relate to most of you with special needs children, and I am trying my best with my own, although having AS myself makes it very difficult. I hope to get to know you all through this forum as I have realized that the "women with Asperger's board" isn't fulfilling the spiritual side of the situation that I find myself in.
Stacy
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RE: Parents with Children of special/high needs childre... - 8/31/2008 4:00:00 AM
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nicole6598
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Hi Stacy! How old were you when you were finally diagnosed? Is Aspergers hereditary then? Anyone else in your family with it?
It would be hard for you. Is your husband a good support? Do you have good support through a church family?
Nice to meet you anyway! Welcome!
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RE: Parents with Children of special/high needs childre... - 8/31/2008 2:37:21 PM
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Mrs.X
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quote:
ORIGINAL: nicole6598
I have a question for those whose children have had allergies or suspected allergies. My mother told me about a friend of hers whose child had the same symptoms as Nathaniel and was taking to an osteopath to have adjustments on her spine, once she went she had no problems whatsoever with her wind etc. Did any of you try that before you thought it was an allergy? If not, why didn't you try?
I have looked into it before but hubby is against it. We are going down the "he has an allergy" route first however.
Nicole, I think maybe it was Tammy or Clag4Christ who saw a chiropractor and had their kiddo adjusted for something similar. Also, Yolanda's sister I think.
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A soft answer turneth away wrath: but grievous words stir up anger. -Proverbs 15:1
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RE: Parents with Children of special/high needs childre... - 8/31/2008 7:07:46 PM
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Auben
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From: Where pines tower and cranberries float
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While it's not nice that there are so many kids with special needs, it is nice to have some company. I appreciate everyone in this thread and their work and prayer for their children.. I read each post and while it feels like too many to answer personally, I am thinking about all of you and praying for your little ones.
The Ketogenic Diet is kind of hard-core but it's worth the effort. It's one of the few options we have that work and the only natural option.
quote:
Wow, thats strange isn't it how the diet has helped his speech to get better, or do you think that part is coincidence? I have never heard of it before. Yay for no seizures since Saturday! what's the longest time period he has had between them?
ETA I just looked up the diet, its pretty full on. Is the whole family on it or just your son? It would be tricky if there was dairy intolerance. What about consitpation, seeing as you cut down the carbs which do provide alot of fibre (I know you can get it from other foods). I found that when I cut wheat out of our diet for just a week there was constipation.
I'm pretty sure the speech return is related to the diet. This kind of epilepsy can have mini-seizures on a sub-conscious level (we wouldn't know it but he can be seizing almost continuously). All that brain activity slows down any kind of development and can even make development go backward so that he looses skills.
While he is still having seizures at least once a week (longest time without is 3 weeks after they added his second seizure drug..but his body has gotten used to that drug so it doesn't work as effectively), his general attitude, his sparkle, his personality are back to what they were 3-4 months ago before the seizures were hitting him consistently. It's definitely like we have spunky Luke back instead of reserved Luke.
Just Luke is on the diet but we've all modified to help him. We don't consume sugar much. I don't bake. We don't buy bread or juice or make pizza. We don't stop at McDonalds, etc. Honestly, I have IBS and so it's hard for me to even taste some of his food because the fat content is so high. The ratio is 3 parts fat to 1 part protein and carbohydrate (and that's a low ratio..it could go higher).
Constipation is a big thing on the diet. At least a third of the kids are on constipation drugs. We have some in the cupboard but I notice that he seems to go fine on his own...just not every day. I think the almond flour helps a bit. A dairy intolerance would make the diet more difficult but you could fill in with oils and the nondairy drink/powder Ketocal (kind of like formula for Keto kids which can be mixed into a drink, pudding, or baked goods).
I just want to say most people with Epilepsy do not have the problems we do. An epilepsy diagnosis is not that scary. The diet probably wouldn't be necessary and 1 medication usually control it. Most kids even outgrow seizures they have in early childhood. Luke just has a very rare type.
We've been having breakthrough seizures this week so dh and I are trying to be positive and do some trial and error to see if one product or food is causing it. Luke is also insisting he wants Cheerios for every meal so I'm a little worn out.
On to a new week! How are school things going for everyone doing school? Any special challenges?
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Parents with Children of special/high needs childre... - 8/31/2008 8:43:12 PM
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nicole6598
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Thanks Christina, I might ask them about it!
Tamara- does Luke ever ask for McDonalds etc? That's what I am finding alot of parents have trouble with when their kids are on a diet, the child misses out a little when it comes to birthday parties etc. I know that I would make it ok for my child, but some would find it hard.
I am glad to hear he is getting better though. It must be a relief to know that things are working.
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RE: Parents with Children of special/high needs childre... - 9/1/2008 10:18:22 AM
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Melodyes_Song
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hi i am Mel, i used to post at crosswalk alot...anyway in Jan 07 we brought home our sons who at that time were 4 and 6 in a foster to adopt situation. Our adoption was final 11/20/07. Our sons who are now 5 (almost 6) and 7 both have special needs. Our 7 year old N, is high functioning autistic, SID (sensory integration dysfunction) and PTSD and our 5 year old has Reactive Attachment Disorder and PTSD. It has been incredibly challenging to parent them, but in general Thank You Lord they are now joys...
i am so glad i found this thread as parenting our boys has been many times very isolating and discouraging...
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A Conservative Voice for Moms
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RE: Parents with Children of special/high needs childre... - 9/1/2008 1:59:00 PM
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Melodyes_Song
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thanks peculiar, i lost this website for awhile, and i was just thinking yesterday what was the name of that site i used to go too...it finally dawned on me it was Crosswalk and then i had to remember my log in and password LOL...then i saw i only had 6 posts weird but ok...
glad to be back the last 19 months have been quite a ride both physically, emotionally and spiritually!!!!
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RE: Parents with Children of special/high needs childre... - 9/1/2008 2:14:40 PM
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NotDoneYet
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Not sure if I qualify yet...we go thursday to start allergy testing for my 3 yo. She has some GI issues that may or may not be allergy related. She has environmental allergies (mold, pollen, etc) that we're getting her tested for.
I HOPE we don't have to do an elimination diet...I'd rather have her tested and find out quickly. The GI issues are really hard on her and me...
NDY
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Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/1/2008 4:53:05 PM
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Homegrownkids
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My 6 yr dd will be starting speech thereapy tomorrow. I also have a doc. appt. for her in October to try a different prescription medication for her. She is very impulsive, hyper, hard for people to understand her..etc...
Noah has 4 appointments this month. He has a laser treatment, opthalmology, a pre-op for anesthesia and he will be getting his front teeth fixed due to decay:( I was told that breastfeeding caused it... but I was trying to see if having a lot of general anesthesia could do it? He has had a lot of "drugs", maybe it dries his mouth too much?
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RE: Parents with Children of special/high needs childre... - 9/1/2008 8:12:36 PM
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Homegrownkids
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She was taking medication for ADHD. I have stopped it because she acts "different" on it. I'd like her to get on a different kind that worked wonders with my older Dd. We never gave her the medication consistently, only when I felt it would really benefit her. Lately, we thought it would benefit, but she still acts weird on it. Sometimes she is such a handful that I am beside myself. I love her to death, but she is a challenge!! I have received compliments on how nice my children are... then my little, throw a temper in the middle of a shopping center floor child came along...lol.
Thanks for the "PM" peculiar, I appreciate that!!! Too bad I can't convince the medical field (or this particular dentist) that breast feeding most likely isn't the culprit. He had some good points on the food we eat... but how do ya change a whole diet?? That is really challenging here in America!!
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God heals!
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HI Stacy!!!! Welcome!!!! (We have a HSing folder too if you want to get involved over there also with lots of very smart ladies and a few very smart men who have great ideas and keep me on track very well with our schooling and issues because of autism....
