Well, we're on day 6 (or is it 7?) of the diflucan. It hasn't been TOO bad. Holden is definitely displaying some behaviors we haven't seen before. Strange things. He's taken to "scooting" himself across the tile floor. Not all the time, but enough that I've noticed. He's also had a lot of stimming lately with paper towels. The kid cannot see a paper towel without crying for it. He rips it up in little pieces and rips up the little pieces into even smaller pieces. We took away a paper towel yesterday and he freaked. He doesnt normally "tantrum", aside from the typical 2 yr. stuff. But, taking the paper towel away yesterday ... hooo boy did that cause a bigtime tantrum. He started hitting his chest like king kong, and walked over to me and started hitting me on the thigh. Hard. And he's so NOT an aggressive kid. So it was a shock for me. But, then I remembered that Dr. Berger told us that he may do that, he may become overly aggressive, and display behaviors we've never seen before. So, that's my saving grace. It's not normal for him, so hopefully it's only being caused from the die-off effect of the yeast releasing toxins into his blood stream.
He's also doing some not-so-bad things. He's more verbal. No words really, but attempting to communicate. He's definitely saying "dada", "bibi", "mama" now. I thought he was saying these things before, but now, it's a definite. And MOST of the time, he's using them in the correct context. He's also doing well with the signing. If he wants something, he almost immediately signs "please". Or, "drink". He also seems to be more here, playing with his toys and wanting to interact with us. Following his sister around enough that she had to throw him out of her room yesterday. He's also responding a lot more to me when I say "come here", or "stop". That's a good thing.
He found Zoe's perfection game. The one where you put in all the little tiny pieces (shapes) in a certain amount of time. So, he's now learning all of those abnormal shapes and where to put them. He's been working on that a lot this morning. The kid loves shapes.
Totally unrelated - it's hot as hell here. We just went to the park and I couldn't stand more than 30-40 minutes of the heat and humidity. So, so hot. And, I'll be 32 weeks pregnant tomorrow. So much to do in so little time. It's creeping up on me, this August 10th c-section date. I have to call the new pediatrician we're going to be using and pray that she's accepting new patients. I have to draw up the document saying we don't want the new baby receiving the Hep B vaccine at birth. I have to take Zoe school clothes shopping before I'm down and out for a few weeks (her school starts August 21st). And, on top of that, our weekly therapy schedule is now as follows:
Monday - 2-3pm - ABA therapy (home)
Tuesday - 10:30-11am - Speech therapy (home)
Wednesday - 2-3pm - ABA therapy (home)
Thursday - 10:00-10:30am - OT (clinic)
Friday - 11:30 - 12noon - Speech therapy (home) AND 2-3pm - ABA therapy (home)
Oh, and on top of that, I start twice weekly NST's for this pregnancy this week. Starting on Thrusday @ 7am. Fun.
But, we're hanging in there!
6.25.2007
6.20.2007
DAN! Doctor Appt - 6/18/07
On Monday, we took Holden back to Tampa to see Dr. Berger. It was his second appointment. He explained Holden's urine and stool sample results. The way he explained things to us is that there are kids he sees on the spectrum who's test results are a "slam dunk". Meaning that the results are "clear" and he knows exactly how to treat them. Then, there are kids who's results are absolutely normal. Holden falls within the 20-30% of kids he sees where the results aren't necessarily BAD; but there are enough abnormalities that require tweaking in order to get his system ready for any kind of heavy metal detox.
Updated treatment plan:
-continue epsom salt baths (night sweats are completely gone now; and this will help continue to replinish his sulfate levels that will help with natural detox).
-continue fish oil daily
-begin 30 day course of diflucan for overgrowth of yeast.
-4-5 days after beginning diflucan, we will start Factor-4 daily to help replace bifidobacter (a "good" bacteria that he's lacking according to his stool sample).
-4-5 days after starting Factor-4, start buffered vitamin C (lacking according to urine results).
Holden also had blood work drawn. They drew 6-7 vials. It was hell, yes it was. They will test for basically everything known to man. Routine stuff - CBC, kidney function, etc. They will also be testing for testosterone levels. Seems that recent studies show that kids on the spectrum have higher levels of testosterone (explains why more boys than girls are on the spectrum in the first place). They will test for zinc levels, copper levels, amonia levels. They will also test for Holden's natural ability to detox his own system.
With these results, we'll have a better idea of what we also need to correct before beginning any type of chelation treatment.
Dr. Berger explained something called the "die-off effect" while on the diflucan. He said that he sees maybe 2-3 kids a year who go through this. It's an extreme reaction to the yeast dying off while on the medication. The yeast will release toxins into the blood stream and cause an adverse reaction. He said that a few things could happen and we may notice them in the next wek or so after starting the diflucan. 1.) we may see him doing things he hasn't done before - new "symptoms" of autism. He may not sleep well. He may be cranky and upset. 2.) we may see him slip into his own shell. Not verbalize at all, and sleep pretty much constantly. or 3.) he may have the adverse reaction mentioned above as the "die-off" effect. He said that if he does have this, he will become VERY aggressive and out of control. If this happens, we're to call his office and they will give us the dosing of liquid charcoal that will help bind the toxins together and will reverse the symptoms within 24 hours.
I'm hoping and praying #3 doesn't happen.
Updated treatment plan:
-continue epsom salt baths (night sweats are completely gone now; and this will help continue to replinish his sulfate levels that will help with natural detox).
-continue fish oil daily
-begin 30 day course of diflucan for overgrowth of yeast.
-4-5 days after beginning diflucan, we will start Factor-4 daily to help replace bifidobacter (a "good" bacteria that he's lacking according to his stool sample).
-4-5 days after starting Factor-4, start buffered vitamin C (lacking according to urine results).
Holden also had blood work drawn. They drew 6-7 vials. It was hell, yes it was. They will test for basically everything known to man. Routine stuff - CBC, kidney function, etc. They will also be testing for testosterone levels. Seems that recent studies show that kids on the spectrum have higher levels of testosterone (explains why more boys than girls are on the spectrum in the first place). They will test for zinc levels, copper levels, amonia levels. They will also test for Holden's natural ability to detox his own system.
With these results, we'll have a better idea of what we also need to correct before beginning any type of chelation treatment.
Dr. Berger explained something called the "die-off effect" while on the diflucan. He said that he sees maybe 2-3 kids a year who go through this. It's an extreme reaction to the yeast dying off while on the medication. The yeast will release toxins into the blood stream and cause an adverse reaction. He said that a few things could happen and we may notice them in the next wek or so after starting the diflucan. 1.) we may see him doing things he hasn't done before - new "symptoms" of autism. He may not sleep well. He may be cranky and upset. 2.) we may see him slip into his own shell. Not verbalize at all, and sleep pretty much constantly. or 3.) he may have the adverse reaction mentioned above as the "die-off" effect. He said that if he does have this, he will become VERY aggressive and out of control. If this happens, we're to call his office and they will give us the dosing of liquid charcoal that will help bind the toxins together and will reverse the symptoms within 24 hours.
I'm hoping and praying #3 doesn't happen.
6.14.2007
more withdrawls? ... and moving
We've made it to day 5 of the FULL gf/cf diet - both dairy and gluten-free. Yesterday, Holden woke up with really red cheeks for some reason. No fever. Just red cheeks and looking exhausted. The best word I can think of to describe him was ... "weepy" looking. When he woke up today, the cheeks were back to normal, but by 2:30 this afternoon - they're red again. Not as red as yesterday, but red. I don't know if this is a symptom of the withdrawls from the dairy and wheat? Who knows. I'm watching to see what happens. And we have an appointment with his doctor on Monday @ 9am.
We're moving tomorrow. I'm so not excited about this. I hate moving, with a passion. I just want to own a home. Really. That's what I really want. But, that's not going to happen, at least not for a few years. We're signing a 12 month lease. And once that's up, we'll probably move. Yet again. And this time, we're thinking about Dallas. Dietrich's twin brother and his wife are there. We went last Thanksgiving and I actually like the area. So, maybe. Either way, I hope we only have 1 or 2 more moves for the rest of our lives. Cause I hate this shit.
Good thing is, Zoe's friend asked her to come stay at the beach with her for a few days. Her friend's family rented a condo in Port Orange / Ponce Inlet. I took her this morning and dropped her off. And yes, I already miss her. She won't be here for the move, so I tried explaining to her that when she comes back, she'll come back to a different house and neighborhood. It will be interesting to see how she responds.
Anyway, back to packing. Ugggg.
We're moving tomorrow. I'm so not excited about this. I hate moving, with a passion. I just want to own a home. Really. That's what I really want. But, that's not going to happen, at least not for a few years. We're signing a 12 month lease. And once that's up, we'll probably move. Yet again. And this time, we're thinking about Dallas. Dietrich's twin brother and his wife are there. We went last Thanksgiving and I actually like the area. So, maybe. Either way, I hope we only have 1 or 2 more moves for the rest of our lives. Cause I hate this shit.
Good thing is, Zoe's friend asked her to come stay at the beach with her for a few days. Her friend's family rented a condo in Port Orange / Ponce Inlet. I took her this morning and dropped her off. And yes, I already miss her. She won't be here for the move, so I tried explaining to her that when she comes back, she'll come back to a different house and neighborhood. It will be interesting to see how she responds.
Anyway, back to packing. Ugggg.
6.12.2007
GF/CF Diet
The doctor recommended we try the GF/CF diet for 3 months. I was hesitant because Holden doesn't have a lot of the "digestive problems" that I hear other kids on the spectrum have. But, after talking to some of the other moms who have children either on the spectrum, or that have fully recovered, I realized that it's not a matter of allergies or just sensitivities. Because of the higher level of toxins in our kids, they're unable to breakdown or digest dairy and wheat products. These leak through their intestines and cause peptides, which turn into opiates and affect their brains. Thus, the reason they're not able to learn as quickly as other kids. And, it can cause the "high" feeling for them.
So, we're trying it. Last Tuesday, I took Holden off of dairy. Cold turkey. Tuesday night, he went to bed at 11pm, and got up at 5am (and many times in between). He took a FOUR hour nap on Wednesday and then went down Wednesday night at 8pm. He was up every hour that night. Whining. I would try and give him his sippy cup (which normally would quiet him back to sleep) with juice and water mixed - didn't want anything to do with this. He would take a sip, throw it across the room, and then cry. We were up at 5am Thursday morning for good. Both nights (Wed & Thurs), he had massive night sweats. The bed was soaked. Thursday, his eye contact was horrible. He wasn't responding to me as much as he normally does. He was in his own little world. I called Dr. Berger's nurse, who called me back on Friday and assured me that this is all par for the course. He was going through withdrawls, and that is actually a GOOD sign because it means that the dairy was affecting him, and affecting him in a negative way. It's like a druggie detoxing off of drugs.
His eye contact improved by Friday and his sleep did, too. He was pretty much back to "normal" and became more vocal. Still no "real" words, but it's still as if he was trying to communicate with us more. Coincidence? Dunno.
I planned on taking him off of the gluten next week - after we move. But, we went to Chamberlains and Whole Foods on Saturday and I decided to go ahead with the gluten-free portion of the diet. They actually have some good stuff! So, today is Tuesday and we're on day 3 of no gluten. Not sleeping well, and the eye contact is back to minimal. The night sweats aren't as bad as with the dairy, but the responding to his name is awful. Yesterday, his ABA therapist mentioned how much different he seemed - in his own little world again. Kind of "out of it".
It's hard. I'm trying to stay positive and I keep telling myself a million times a day that this is just part of it. That his body is trying to regulate itself. Get used to being without it's drugs. His brain is adjusting. Now I understand why parents give up on the diet so quickly - it's hard to watch your child going through this. It's almost as if they seem "worse" and their symptoms definitely seem worse, but I'm told to stick it out because once you get through this part of it - you'll see the improvements.
I'm hoping and praying it happens soon.
So, we're trying it. Last Tuesday, I took Holden off of dairy. Cold turkey. Tuesday night, he went to bed at 11pm, and got up at 5am (and many times in between). He took a FOUR hour nap on Wednesday and then went down Wednesday night at 8pm. He was up every hour that night. Whining. I would try and give him his sippy cup (which normally would quiet him back to sleep) with juice and water mixed - didn't want anything to do with this. He would take a sip, throw it across the room, and then cry. We were up at 5am Thursday morning for good. Both nights (Wed & Thurs), he had massive night sweats. The bed was soaked. Thursday, his eye contact was horrible. He wasn't responding to me as much as he normally does. He was in his own little world. I called Dr. Berger's nurse, who called me back on Friday and assured me that this is all par for the course. He was going through withdrawls, and that is actually a GOOD sign because it means that the dairy was affecting him, and affecting him in a negative way. It's like a druggie detoxing off of drugs.
His eye contact improved by Friday and his sleep did, too. He was pretty much back to "normal" and became more vocal. Still no "real" words, but it's still as if he was trying to communicate with us more. Coincidence? Dunno.
I planned on taking him off of the gluten next week - after we move. But, we went to Chamberlains and Whole Foods on Saturday and I decided to go ahead with the gluten-free portion of the diet. They actually have some good stuff! So, today is Tuesday and we're on day 3 of no gluten. Not sleeping well, and the eye contact is back to minimal. The night sweats aren't as bad as with the dairy, but the responding to his name is awful. Yesterday, his ABA therapist mentioned how much different he seemed - in his own little world again. Kind of "out of it".
It's hard. I'm trying to stay positive and I keep telling myself a million times a day that this is just part of it. That his body is trying to regulate itself. Get used to being without it's drugs. His brain is adjusting. Now I understand why parents give up on the diet so quickly - it's hard to watch your child going through this. It's almost as if they seem "worse" and their symptoms definitely seem worse, but I'm told to stick it out because once you get through this part of it - you'll see the improvements.
I'm hoping and praying it happens soon.
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