Okay, I went last Friday to the DAN! doctor to talk with her about what tests she recommended and to get the supplements that she recommended and had ordered for me oh and to talk about Coop's diet also. So, we talked about the diet first and she said again to stick with the gluten/casein/soy free diet since we are seeing improvement in him. She also gave me the supplements and gave me all the instructions for them, then we talked testing.... oh testing.... We had to get a first morning urine sample, sounds easy enough right? Well, he is three and not potty trained so not easy. We finally got it on the third try! We also have to get a stool sample I am happy (believe me I am the one that has to collect it! I am happy!!) to report that we have two of three. Now for the blood test. Oh man! It has to be a fasting test and the children's place does not open until 11! AGH! The pediatricians office is completely not helpful which seriously ticks me off! So I will have to let you know later how that went but I am going to go with not well!
I went to the meeting on Wednesday with the county to see what Cooper qualifies for if anything. I was kind of confused after my last meeting so this was nice because it clarified! He qualifies for school based therapy which means that he will either be in the county special ed preschool (3 miles from my house) or he will be in a special ed preschool class at a local elementary school. It will most likely be the preschool because it is so close to our house and our elementary school does not have a class because they are so close to the preschool. This is SUCH an answer to prayer because this is what we really think it going to help Cooper!
We will not know until August which school he is in and we will also find out at that time if he is in a total special ed class or a governor's pre-k class with some special ed kids in it. I am going to guess it depends on how things shake out for them with kids they get in between now and then. Either way the teacher is a special ed teacher so it will be great for him! It is a 5 day program and the day is from 8-2 he will also get to ride a bus to school so he will love that! They have a gluten and casein free menu so he will even be able to buy lunch from time to time! We only let our kids buy once a week because the food all schools serve is straight up junk!!!!
We also had a staycation last weekend and we had fun. We went to the aquarium and a local science museum that has dinosaurs. The kids LOVED it!!! The other days we just hung out at home while Kevin and I got some things done. No garden planting though:( We think we don't get enough light in our backyard for it it is not direct sunlight. We also think we are too late for the year so we are going to look into the lighting thing for next year.
This week I am working on potty training Cooper ugh! SO not fun!!! We are going to add Hunter to the mix after his birthday next week so this ought to get interesting really fast!!
Thursday, May 28, 2009
Tuesday, May 19, 2009
Mini DAN! Update
The DAN! doctor called me about 30 minutes before I was going to leave on Friday to let me know that she needed to reschedule! She said "I am sitting here in my office in the dark, they are doing mega construction next door and they must have hit a power line or something." She offered to just mail me the kits for the tests and talk over the phone but I would rather talk in person. She did talk with me though for about 40 minutes just letting me know some of her thoughts. She said since we seem to be getting results with GF/CF/SF that we should stick with that for the time being. She is going to run a stool test and if it shows a carb imbalance then we can revisit the topic of SCD.
She also recommended some supplements: zinc, probiotics, enzymes and melatonin. Now let me just say melatonin seems like a gift from God! I mean that too I am not saying that flip at all! Cooper does not sleep he gets put to bed at about 7:00 and he does not go to sleep until, on average, 9:00! He is three!!! So the melatonin will help him go to sleep better. We give it to him about an hour before we want him to sleep and it will just help him drift off, kind of like a natural sleep aid. It will also be time released so if he wakes up in the middle of the night it will, well first stop that from happening, then help him go back to sleep. I have high hopes of this helping immensely! I know that when I am tired I am a lot more cranky and snippy and I am sure he is too so maybe if he is getting better sleep we will see some behavior improvement.
The probiotics and enzymes along with the diet change will help heal the gut. There is a school of thought that ASD and like minded disorders are actually often partially caused by a gut problem and if you can fix the gut issue you can help the symptoms. So far I have seen changes in my son so I am a believer! Plus as anyone who knows me well knows I am a bit of a crunchy girl so I am all for natural ways of healing.
Exciting things coming up here are that we are taking a "staycation!!" So exciting! We were going to go visit Kevin's family but they are going to be really busy so instead we are going to stay here and visit some places that we have not gone to near our home. We are also hoping to get together with some friends and just have a nice vaca at home:) We have also been really wanting to plan an organic garden so we may work on that. With six people in the house we go through veggies and fruit like crazy! We think it is a good learning experience for the kids but also a big money saver for us!
Oh and poor Cooper fell at school today. He was washing his hands and he slipped off the back of a stool and banged his chin on the counter. I thought his teacher was going to have a heart attack because I popped in when I heard him screaming. She looked horrified! Not a big deal I was just worried about him.
She also recommended some supplements: zinc, probiotics, enzymes and melatonin. Now let me just say melatonin seems like a gift from God! I mean that too I am not saying that flip at all! Cooper does not sleep he gets put to bed at about 7:00 and he does not go to sleep until, on average, 9:00! He is three!!! So the melatonin will help him go to sleep better. We give it to him about an hour before we want him to sleep and it will just help him drift off, kind of like a natural sleep aid. It will also be time released so if he wakes up in the middle of the night it will, well first stop that from happening, then help him go back to sleep. I have high hopes of this helping immensely! I know that when I am tired I am a lot more cranky and snippy and I am sure he is too so maybe if he is getting better sleep we will see some behavior improvement.
The probiotics and enzymes along with the diet change will help heal the gut. There is a school of thought that ASD and like minded disorders are actually often partially caused by a gut problem and if you can fix the gut issue you can help the symptoms. So far I have seen changes in my son so I am a believer! Plus as anyone who knows me well knows I am a bit of a crunchy girl so I am all for natural ways of healing.
Exciting things coming up here are that we are taking a "staycation!!" So exciting! We were going to go visit Kevin's family but they are going to be really busy so instead we are going to stay here and visit some places that we have not gone to near our home. We are also hoping to get together with some friends and just have a nice vaca at home:) We have also been really wanting to plan an organic garden so we may work on that. With six people in the house we go through veggies and fruit like crazy! We think it is a good learning experience for the kids but also a big money saver for us!
Oh and poor Cooper fell at school today. He was washing his hands and he slipped off the back of a stool and banged his chin on the counter. I thought his teacher was going to have a heart attack because I popped in when I heard him screaming. She looked horrified! Not a big deal I was just worried about him.
Saturday, May 16, 2009
County Evaluation and Red Socks!!
Wednesday was the county evaluation. This was the eval to see if Cooper would qualify for county services. Every county in the state offers therapy services to children who qualify, this is past the early intervention (Babies Can't Wait) that ages out at three. Okay, so we went to the eval and there were tons of people there! It was Cooper, me, a social worker, a diagnostician, an OT, a ST, a PT and I think someone else. I worked mostly with the social worker while everyone else watched Cooper play and asked him to do things. I answered 9,000 questions again in fact they used the same form that I have already filled out twice. I need to just get a copy of it and bring it with me next time!
I thought this meeting was just to see if he would qualify for therapy and then if we wanted to send him to the preschool that would be something else but I don't think it was. When I got there they were asking me about Cooper's allergies and if he carries an Epi Pen or anything so when I said that he does they went to get the nurse. Well, the nurse brought me a bunch of paperwork and said that it has to be filled out before he can come to school and then asked the social worker if we were talking about this year or next year amd the SW said next year (there is only a week left this year). So I started off the meeting like "huh??"
Well, then we go over the 9,000 questions from the SW and then the OT came over to ask me some more. After they had asked their questions they went into another room to talk for a little bit while Cooper and I waited. Oh and in the middle of all the question asking someone came and asked me if they could take Cooper downstairs to one of the classes to see how he acted with the other children. Cooper has problems with social interaction that is one of our largest concerns and part of the whole reason we were there so I said sure! Well, they walked out into the hallway and the dang fire alarm goes off!!! AAACCCCKKKK!!!! Cooper is terrified of loud noises!!!! Well, the SW keeps talking to me telling me that we do need to go outside blah blah blah I just tried to politely say "yes, that is fine but I have to go I am worried about Cooper." Sure enough he had scaled the lady who brought him downstairs and when he saw me he just lunged at me! I just held him tight and he buried his ear into my shoulder and I used my hand to cover his other ear. I was glad that they saw that though! The alarm went off pretty quickly so he was fine after a minute. I figured it a school of lots of kids like Cooper so they turn it off pretty fast.
When they got back they said that Cooper was not upset but he kept saying "I don't want to share" and he was backing up into a corner when the other kids were getting in his space trying to check out the new kid. Again, I am glad they saw that. I have found that children can often be like when you take your car to the mechanic and it stops making they noise. They don't do the behavior you are talking about when they are at the pediatrician or the evaluations!
They had told me that I would not get the results until the 27th but that they would give me an idea of what they were thinking before I left. They told me that they already knew he met the requirements of "significant developmental delay" and he would qualify for school based therapy. Now, I am a little fuzzy on what that means exactly. They were talking about him going to school either there or an elementary school with a special needs class, they said it would be most likely there though since it is less then 3 miles from our house. They were asking if he would take the bus, then they said something about if he qualifies. So I am a little unsure about all that. We are really praying that he will get into the school because that is what he really needs! He does not need speech therapy because he talks fine until he is frustrated but if he is frustrated he would really benefit from having someone there to talk him through it.
Also, we had to reschedule the DAN! doctor follow up. I made the appointment and then I realized that Jonathan had his Kindergarten musical performance that morning. There was no way to do both so I moved the apt to Monday. If you know our family picture site check out the video from the performance SO cute! If you don't e-mail me and I will give it to you if I know you;)
Okay and the red socks! Cooper wore red socks! Yahoo! Okay now to be fair I tricked him into it by putting them on when he was distracted doing something but once he realized it he kept them on!!!
I thought this meeting was just to see if he would qualify for therapy and then if we wanted to send him to the preschool that would be something else but I don't think it was. When I got there they were asking me about Cooper's allergies and if he carries an Epi Pen or anything so when I said that he does they went to get the nurse. Well, the nurse brought me a bunch of paperwork and said that it has to be filled out before he can come to school and then asked the social worker if we were talking about this year or next year amd the SW said next year (there is only a week left this year). So I started off the meeting like "huh??"
Well, then we go over the 9,000 questions from the SW and then the OT came over to ask me some more. After they had asked their questions they went into another room to talk for a little bit while Cooper and I waited. Oh and in the middle of all the question asking someone came and asked me if they could take Cooper downstairs to one of the classes to see how he acted with the other children. Cooper has problems with social interaction that is one of our largest concerns and part of the whole reason we were there so I said sure! Well, they walked out into the hallway and the dang fire alarm goes off!!! AAACCCCKKKK!!!! Cooper is terrified of loud noises!!!! Well, the SW keeps talking to me telling me that we do need to go outside blah blah blah I just tried to politely say "yes, that is fine but I have to go I am worried about Cooper." Sure enough he had scaled the lady who brought him downstairs and when he saw me he just lunged at me! I just held him tight and he buried his ear into my shoulder and I used my hand to cover his other ear. I was glad that they saw that though! The alarm went off pretty quickly so he was fine after a minute. I figured it a school of lots of kids like Cooper so they turn it off pretty fast.
When they got back they said that Cooper was not upset but he kept saying "I don't want to share" and he was backing up into a corner when the other kids were getting in his space trying to check out the new kid. Again, I am glad they saw that. I have found that children can often be like when you take your car to the mechanic and it stops making they noise. They don't do the behavior you are talking about when they are at the pediatrician or the evaluations!
They had told me that I would not get the results until the 27th but that they would give me an idea of what they were thinking before I left. They told me that they already knew he met the requirements of "significant developmental delay" and he would qualify for school based therapy. Now, I am a little fuzzy on what that means exactly. They were talking about him going to school either there or an elementary school with a special needs class, they said it would be most likely there though since it is less then 3 miles from our house. They were asking if he would take the bus, then they said something about if he qualifies. So I am a little unsure about all that. We are really praying that he will get into the school because that is what he really needs! He does not need speech therapy because he talks fine until he is frustrated but if he is frustrated he would really benefit from having someone there to talk him through it.
Also, we had to reschedule the DAN! doctor follow up. I made the appointment and then I realized that Jonathan had his Kindergarten musical performance that morning. There was no way to do both so I moved the apt to Monday. If you know our family picture site check out the video from the performance SO cute! If you don't e-mail me and I will give it to you if I know you;)
Okay and the red socks! Cooper wore red socks! Yahoo! Okay now to be fair I tricked him into it by putting them on when he was distracted doing something but once he realized it he kept them on!!!
Monday, May 11, 2009
DAN! Doctor
Last Thursday we went to see the DAN! doctor. I ended up having to bring all four kids with me! ACK! Jonathan was having an asthma flare so he could not go to school. We went to the doctor as soon as preschool was over for the day. The kids actually did really well! The doctor has a playroom that is right next door to her office, there is a big opening between the rooms so I could see them the whole time. The doctor was also really great with all the kids:)
So, the doctor talked with me at length about Cooper and all the paperwork I brought. She also asked me a number of questions in addition to the paperwork I had already filled out for her. She was so great and so very very helpful!! I have an appointment later this week to go over her report. She will give me a report about what diet she thinks Cooper should be on (Feingold, SCD or Gluten/Casein/Soy Free) , what blood/urine/stool testing she thinks is good for him and what supplements she recommends. She may up the supplements after we get the testing back also.
So for his diet I really think she is going to recommend the SCD and man I am nervous about that! Cooper is so picky that he will let himself starve to not have to eat something new or something he does not want to eat. This diet will get rid of most things that he will readily eat.
In the mean time we have had him on a Gluten/Casein/Soy free diet. Now, he was already casein free because that is a milk protein and he has a dairy allergy. We also took him off soy a month or so ago after reading some things about soy that we were uncomfortable with. So gluten free was really the only change. Now, it was really not a problem for me we have a Whole Foods Market nearby and I just went to the gluten free section and got a bunch of stuff I thought Cooper would at least try. It can take a long time in some kids to see even a small change with the GF but I will say that I see a change in Cooper and it has only been a week and a half! Gluten can take months to get out of the system but I am hopeful that if I have already seen some small changes in Cooper the long term would be even better. Since changing the gluten thing he has not tantrumed as much and he is just more even keeled. We will see what the doctor says though when I see her again.
Lastly I just want to say Cooper is so stinkin cute! He has been walking around the house all day in a Power Ranger costume:)
So, the doctor talked with me at length about Cooper and all the paperwork I brought. She also asked me a number of questions in addition to the paperwork I had already filled out for her. She was so great and so very very helpful!! I have an appointment later this week to go over her report. She will give me a report about what diet she thinks Cooper should be on (Feingold, SCD or Gluten/Casein/Soy Free) , what blood/urine/stool testing she thinks is good for him and what supplements she recommends. She may up the supplements after we get the testing back also.
So for his diet I really think she is going to recommend the SCD and man I am nervous about that! Cooper is so picky that he will let himself starve to not have to eat something new or something he does not want to eat. This diet will get rid of most things that he will readily eat.
In the mean time we have had him on a Gluten/Casein/Soy free diet. Now, he was already casein free because that is a milk protein and he has a dairy allergy. We also took him off soy a month or so ago after reading some things about soy that we were uncomfortable with. So gluten free was really the only change. Now, it was really not a problem for me we have a Whole Foods Market nearby and I just went to the gluten free section and got a bunch of stuff I thought Cooper would at least try. It can take a long time in some kids to see even a small change with the GF but I will say that I see a change in Cooper and it has only been a week and a half! Gluten can take months to get out of the system but I am hopeful that if I have already seen some small changes in Cooper the long term would be even better. Since changing the gluten thing he has not tantrumed as much and he is just more even keeled. We will see what the doctor says though when I see her again.
Lastly I just want to say Cooper is so stinkin cute! He has been walking around the house all day in a Power Ranger costume:)
Monday, May 4, 2009
Brushing Program
At Cooper's OT appointment today his OT gave us the brush to start a brushing program for Cooper. We do this every two hours and no less then 1.5 hours before bed. We have done it a few times today so far and it is going well. Cooper doe snot mind it like I thought he would and I did it right before nap and he went right to sleep! He does nap quiker, longer and harder on the days he has OT though so we will see how it works tonight! Like a lot of SPD kids Cooper has a really hard time going to sleep so I am all for anything to make that easier!
We had a good weekend for the most part. He and his older brother have been picking on each other a lot this weekend so I am ready for them to get over that! Othen than that there is not a whole lot going on at the moment. I am still looking into diet information and am waiting on some books that are on their way to me. We took Cooper off all gluten and it was not as much of a pain as I thought it would be, well so far. I am going to talk to the DAN! doctor on Thursday though to see what she thinks the best diet is for Cooper.
We had a good weekend for the most part. He and his older brother have been picking on each other a lot this weekend so I am ready for them to get over that! Othen than that there is not a whole lot going on at the moment. I am still looking into diet information and am waiting on some books that are on their way to me. We took Cooper off all gluten and it was not as much of a pain as I thought it would be, well so far. I am going to talk to the DAN! doctor on Thursday though to see what she thinks the best diet is for Cooper.
Saturday, May 2, 2009
Tantrums
Cooper MEGA tantrums! I mean like screaming at the top of his lungs like you are killing him tantrums. It is so upsetting when he does this because usually he just starts over something small and then nothing can please him. He will start screaming because he wants to ride in the shopping cart (for example) and then you let him ride in the cart then he is screaming over something else. It ends up that he is just screaming and I don't think HE even knows why. I have been a number of places and just ended up walking through the store with a screaming kid. I HATE it! I hate it for him, I hate it for me and I hate it for everyone else that has to hear him BUT I am not going to live like a hermit either!
One good thing I have realized though is that Cooper is sensitive to artificial coloring. If he eats something with artificial coloring in it he will pitch a holy fit within 30 minutes! Man since I have realized that it has helped!
It is funny because when we go anywhere I bring gummy snacks for the kids because they love them and they help keep them under control. Well that was a trigger for Cooper! Yesterday when we went to Target I gave them all natural fruit bars (mashed fruit held thinned a little with juice) and no tantrum! WONDERFUL!
One good thing I have realized though is that Cooper is sensitive to artificial coloring. If he eats something with artificial coloring in it he will pitch a holy fit within 30 minutes! Man since I have realized that it has helped!
It is funny because when we go anywhere I bring gummy snacks for the kids because they love them and they help keep them under control. Well that was a trigger for Cooper! Yesterday when we went to Target I gave them all natural fruit bars (mashed fruit held thinned a little with juice) and no tantrum! WONDERFUL!
Thursday, April 30, 2009
Report Results
So the doctor gave us the results in the feedback session and he said that Cooper does not have Autism. Now, that sounds good right? Well I don't know if he is right so now I feel like we are back to square one:( I am just SO frustrated!!! I have heard from a number of people that they ended up having to go to 2 or 3 different doctors to finally get a diagnosis so I know that this is not unusual but it is a pain!
The doctor told me that I scored him as having mild to moderate Autism based on the questionnaire I filled out but that their testing showed that he is fine. He told me "he does not have a problem with speech and he is in the range he should be for IQ so he can't have Autism." Huh??? Ever hear of Einstein???? He did admit to me that they test in a room that is lit well for Cooper, it is quiet and he is working with someone who knows how to work with him so the results are not entirely accurate. What???
I am just SO frustrated because I don't see how an hour and a half of testing can overrule his LIFE! AAGHHH!! The doctor told me that Cooper just has "very severe SPD," again I disagree. He does have SPD (duh) but it is not severe more moderate I think.
So, what we are doing now is going to a DAN! (Defeat Autism Now!) doctor and we are getting a second opinion from a Developmental Pediatrician that has come recommended from the DAN! doctor. I will say I don't know if Cooper does have Autism but I do know that it is not just the SPD. Some of the things he does are common Autism symptoms that have nothing to do with SPD.
The DAN! doctor I think is a good idea even if Cooper does not test from the other doctor as having Autism. This doctor is going to do blood work to see if there are vitamins and minerals that Cooper is deficient in. He is very likely to be deficient because he has such a strong self limiting diet. this doctor will work with us to test Cooper and then see what kind of supplements he needs to be on to regulate.
I talked with the DAN! doctor on Tuesday and she was SO helpful! She was so great I just can't say enough about it (I hope I still really like her when I meet her!). I talked with her on the phone for 45 minutes! Like I told my husband any doctor that is willing to talk me on the phone without Cooper being her patient or any guarantee that he will be her patient is a doctor that we need to bring him to! She also was at home! She forwards her business calls to her cell when she is not in the office. I have a meeting with her next Thursday to go over Cooper's history and then I will make an appointment to meet with her with Cooper.
I also am about to call and make the appointments for the developmental ped -it is a series of three appointments. The fact that this doctor is actually going to meet with Cooper and more than once makes me think this may go a little better already! The other doctor never even met Cooper!
The doctor told me that I scored him as having mild to moderate Autism based on the questionnaire I filled out but that their testing showed that he is fine. He told me "he does not have a problem with speech and he is in the range he should be for IQ so he can't have Autism." Huh??? Ever hear of Einstein???? He did admit to me that they test in a room that is lit well for Cooper, it is quiet and he is working with someone who knows how to work with him so the results are not entirely accurate. What???
I am just SO frustrated because I don't see how an hour and a half of testing can overrule his LIFE! AAGHHH!! The doctor told me that Cooper just has "very severe SPD," again I disagree. He does have SPD (duh) but it is not severe more moderate I think.
So, what we are doing now is going to a DAN! (Defeat Autism Now!) doctor and we are getting a second opinion from a Developmental Pediatrician that has come recommended from the DAN! doctor. I will say I don't know if Cooper does have Autism but I do know that it is not just the SPD. Some of the things he does are common Autism symptoms that have nothing to do with SPD.
The DAN! doctor I think is a good idea even if Cooper does not test from the other doctor as having Autism. This doctor is going to do blood work to see if there are vitamins and minerals that Cooper is deficient in. He is very likely to be deficient because he has such a strong self limiting diet. this doctor will work with us to test Cooper and then see what kind of supplements he needs to be on to regulate.
I talked with the DAN! doctor on Tuesday and she was SO helpful! She was so great I just can't say enough about it (I hope I still really like her when I meet her!). I talked with her on the phone for 45 minutes! Like I told my husband any doctor that is willing to talk me on the phone without Cooper being her patient or any guarantee that he will be her patient is a doctor that we need to bring him to! She also was at home! She forwards her business calls to her cell when she is not in the office. I have a meeting with her next Thursday to go over Cooper's history and then I will make an appointment to meet with her with Cooper.
I also am about to call and make the appointments for the developmental ped -it is a series of three appointments. The fact that this doctor is actually going to meet with Cooper and more than once makes me think this may go a little better already! The other doctor never even met Cooper!
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