Autism, Anyone?

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  #51  
Old 04-07-2012, 09:43 PM

RE: Autism, anyone?

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Quote:
Originally Posted by Goddessoflubbock View Post
It sounds like a great program for the kids and the cops. I just wish adults weren't so left out. My son is nearly 18, he is out alone frequently (walking to and from work, out with friends, etc) and I am just really concerned if the police ever felt the need to question him. If he doesn't know you he is anxious and to a cop would look both guilty and high (he stims). I want him to carry a card in his wallet explaining he's autistic but he wants no part of it.

A mother's worries never end!
I wished you lived here, Goddess, because your son would qualify for our program! He may not get the same gift basket though! Our main focus is to alert law enforcement of kids (and younger adults) who have autism and how to handle the situation if they encounter one of them. For example, local law enforcement offices get a list of every family who registers with us in their district that includes info about the autistic family member and how things should be handled if the police ever have to go to their house or neighborhood. The cops also get a chance to introduce themselves to the families and the kids to try to build a rapport with them to make it easier on the kids if there ever is an emergency situation.

You may want to try to call your local, county, or state law enforcement agencies and ask them if they have anything like that available in your area. It prevents a lot of problems for the cops and the kids and families if everyone is on the same page.
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  #52  
Old 04-08-2012, 12:50 PM

RE: Autism, anyone?

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Unfortunately I've tried to open lines of communication and they aren't interested. My son had his bike stolen a few years ago, he was maybe 13 but easily looked 16+. The cop asked DS what happened, DS said "he told me I had to give him my bike, so I did". I had already told dispatch to please let the cops know my son has autism. The cop says "so it's not stolen, you gave it away?". I sent my son (now crying) back in the house, cop tells my DH to get his son to man up a little. So yeah, that didn't go well and I gave the cop what for. We ended up "stealing" his bike back when we saw it leaning against the kids house.

I went downtown and tried to talk to somebody, public information officer, anybody. No one wanted to hear it. .
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  #53  
Old 04-08-2012, 09:26 PM

RE: Autism, anyone?

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Quote:
Originally Posted by Goddessoflubbock View Post
Unfortunately I've tried to open lines of communication and they aren't interested. My son had his bike stolen a few years ago, he was maybe 13 but easily looked 16+. The cop asked DS what happened, DS said "he told me I had to give him my bike, so I did". I had already told dispatch to please let the cops know my son has autism. The cop says "so it's not stolen, you gave it away?". I sent my son (now crying) back in the house, cop tells my DH to get his son to man up a little. So yeah, that didn't go well and I gave the cop what for. We ended up "stealing" his bike back when we saw it leaning against the kids house.

I went downtown and tried to talk to somebody, public information officer, anybody. No one wanted to hear it. .
Aw, I'm so sorry that happened. It's ridiculous for a cop to act that way toward any child let alone a child with a disability! Any time you experience something like that please call the state attorney general and file a formal complaint against the police department. If you complain enough to the AG that office will do something about it. Unlike police, the AG is an elected position and must answer to voters. I know from experience that the state AG does not like to hear about problems with police departments because it makes them look bad. You could be like me and tell them that you have the time to call them at least once every day until the problem is solved. It took about a week of that until they called the PD I had a problem with and ripped the chief a new one.

If you need any help or info let me know and I will see what I can find out. Some cops are NOT going to like me as a prosecutor!
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  #54  
Old 04-09-2012, 03:18 AM

RE: Autism, anyone?

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Yeah, I WORKED for the OAG at the time :/.

Just tonight DS and I had another heart to heart, and he agreed to carry the little business card notice inside his wallet . He always carries his wallet since he got his state ID. Makes him feel grown up!

He does really really well (works at a pizza joint) but I think all our hearts skip a beat when a cop stops us. For him that anxiety could just shut him down.
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  #55  
Old 04-09-2012, 07:43 AM

RE: Autism, anyone?

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Quote:
Originally Posted by Goddessoflubbock View Post
Yeah, I WORKED for the OAG at the time :/.

Just tonight DS and I had another heart to heart, and he agreed to carry the little business card notice inside his wallet . He always carries his wallet since he got his state ID. Makes him feel grown up!

He does really really well (works at a pizza joint) but I think all our hearts skip a beat when a cop stops us. For him that anxiety could just shut him down.
Oh my goodness! It's awful that you worked for them and didn't get any help. I would have been livid! I'm glad your DS has agreed to carry a notification card. It's a very grown up thing to do! A lot of adults carry information cards about conditions they have and he should be proud of himself for making such an adult decision.
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  #56  
Old 04-09-2012, 10:55 AM

RE: Autism, anyone?

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Anyone see the new story about autism being linked to obese mothers? Just great, something else I need to feel guilty about.
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  #57  
Old 04-09-2012, 11:00 AM

RE: Autism, anyone?

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my husbands cousin's kid has autism and mother is far from obese. i wouldn't feel quilty just yet.
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Old 04-09-2012, 01:31 PM

RE: Autism, anyone?

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Quote:
Originally Posted by Sunbear View Post
Anyone see the new story about autism being linked to obese mothers? Just great, something else I need to feel guilty about.
I heard it on NPR this morning--the way I understood the story, the study looked not just at the expectant Mother's weight, but was focused on whether she had complications such as diabetes, gestational diabetes, or high blood pressure (as potentially threatening to fetal brain development). I guess the reasoning was that obesity puts moms more at risk for those complications, but I didn't get that it was just about weight by itself.

No matter what, I try not to get worked up about causation (I look at my family history as well as Dad's and can see that we have family members with conditions that are possibly related), because no one has flawless DNA and because there isn't anything that I can do about that now. I rather stay focused on what we can do to help DS today, than get caught up figuring out whose 'fault' it is.
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Old 04-14-2012, 10:02 PM

RE: Autism, anyone?

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Update...ds finished his autism eval and they said not in spectrum because of the microdeletion diagnosis as an alternate diagnosis however he has all of the classic autism signs except for lack of socialization. I have to say that I feel left out now wondering where we fit in...because trying to explain his wacko behavior to people is difficult enough as it is. DS can't talk, he is very adhd, runs into traffic/street....label or no label, it doesn't change anything. What he has is pretty much the same thing. I have to say the years of testing have been exhausting. We've now had 2 confirmed speech apraxia diagnoses. Apraxia doesn't explain why he runs into the street and has no fear though. The genetic doctors I met with earlier said that his speech disorder is directly related to his chromosomal deletion and nothing else but it's the same thing really. He is currently in OT for sensory processing disorder. He screams and covers his ears at the slightest noise. He melts down at a firework show. I am exhausted.
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Old 04-14-2012, 10:09 PM

RE: Autism, anyone?

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Quote:
Originally Posted by mommyslh View Post
here is a link to apraxia speaks that has a pic of my brooke and her story.

Apraxia, Dyspraxia and soon to be ADD or AHDH

btw hotmama11 a cord around the neck could cause apraxia even though it doesn't cause every one to have apraxia. it would depend on how long was baby without oxgen. brooke was without long enough for the eyes to roll, i will never get that picture out of my mind, i remember as if if were yesterday. her sensory issues were caused by damage to the central nervous system due to lack of oxgen so there is no doubt it caused her apraxia.
Brooke is precious! Yeah the genetic doctors said that ds recovered too quickly for it to have caused apraxia but I will never forget how blue and non-crying he was at birth.
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  #61  
Old 04-15-2012, 01:28 AM

RE: Autism, anyone?

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Over the past couple of years there have been a lot of guesses at causation - most of which lacked any solid science behind them. My cousin was 55 when he married, his wife was a pleasantly plump 38. In a couple years they had two boys, both extremely typical. So much for old dads and fat moms!

I stopped beating myself up about causation a long time ago. One look at DH gene pool and it's clear that it was destiny . His dad is 70 and to this day drives the same bus route going past 40 years now. He has $30k worth of trains in his basement and good luck talking to him about anything but trains or WWE! His brother is 50 and has lived in the exact same apartment his entire life! He had one real gf, she almost stabbed him to death in the apt, he insisted on returning to the same one when released from the hospital! He's has the same job for 30 years and is on his 3rd Dodge pickup, blue. LOL

A good friend of mine works with Dr Manuel Casanova in KY. He's a leading autism researcher and is testing new techniques all the time. If something real comes along I'll hear
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Old 04-15-2012, 05:19 AM

RE: Autism, anyone?

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hotmama111 i went to office depot when she was about 3 yrs old and parked right next to oak st which is a very busy street and when leaving i put my oldest in the car and was putting the seat belt on and brooke went behind my car i assumed to go to the other door to get in but after a second when the other door didn't open, i looked up and she was standing right at the curb of the street i looked her right in the eye and said NO she giggled and ran right into the street, i went running in the street w/o even looking for cars, lucky for us there wasn't any cars, cars that couldn't stop anyways. i knew from that day on something wasn't quite right with her. the developmental doc said that was the ADD being impulsive. thats great the doc said your ds doesn't have autism. apraxia would be completely non verbal and would not even babble as infant. they have to be taught to make letter sounds they will not learn it on their own. it's actually kinda rare during 3.5 yrs speech therapy i never ran into another kid with it unless austism was also present. i have met others on the babycenter delayed darlings forum.
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Old 04-15-2012, 06:10 AM

RE: Autism, anyone?

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Quote:
Originally Posted by hotmama111 View Post
Update...ds finished his autism eval and they said not in spectrum. I have to say that I feel a little left out now wondering where exactly we fit in...because trying to explain his wacko behavior to people is hard enough as it is. It has also left me slightly confused about what autism really is b/c he displays some of the a characteristics--he can't talk, he is very adhd, runs into traffic/street.... Label or no label, it doesn't change anything. Have to say the year of testing has been exhausting. The last doc that did the non-diagnosis did say that she thinks it's apraxia. Thing is that apraxia doesn't explain why he runs into the street and is a complete goof. The genetic doctors I met with earlier said that his speech disorder is directly related to his chromosomal deletion and nothing else.
I want to preface my comments with the obvious, that I don't know your son and that I am NOT a diagnostician...BUT what I want to share is that I had a similar experience with the first eval that my son had.

My son was speech and motor delayed. By his 24 month appt the Ped referred him for an eval at an early intervention center--which does not diagnose, but identifies, delays and whether they are profound enough to qualify for therapy services. By the time he'd been evaluated and found eligible he was almost 2 1/2. Because they found him to be delayed in multiple developmental areas, they recommended that he see a developmental pediatrician and/or neurologist.

When I took that back to my Ped, she gave me a short list of docs in the area that she recommended to do his eval (we were in Seattle at that time, blessed with LOTS of Docs, a great Children's Hospital and the UW Autism Center--but still she only gave me about six names). EVERY one of those docs had a HUGE waiting list (9 months or more)--as I made each call I was hanging up almost in tears thinking that DS was going to have to wait so long for help. Then I came to the last name on the list--it was a developmental neurologist, associated with the largest hospital in the area. His receptionist told me they could see DS in only a little over a month! I was overjoyed and feeling relieved.

We went for the eval, I was nervous--not wanting DS to be diagnosed on the spectrum, but wanting answers. Of course the ADOS (autism diagnostic test) for such a young child includes an observation component (where the doc interacts with the child, sees how they respond to directions/use of language/eye contact etc.) but there is also a component where they interview the parent to find out how the child copes in certain situations, whether they have certain behaviours common for ASD. As I answered the questions, what really started to come into focus for me was how different his development was from his older sister (he wasn't doing many of the things she picked up easily by the same age).

We left the eval expecting to wait a couple of weeks for the eval results and report to come back. When it did I was shocked to find that the Dr. was NOT diagnosing him on the spectrum. (During my wait I had done quite a bit of research myself and believed that DS met the DSM criteria--language delay, social deficits, perserverative behaviours). At the next appointment with his Ped I was cautiously optimistic that he wasn't on the spectrum, although deep down I just knew otherwise. I gave the Ped the dev. Neurologist's report and we agreed we would continue with the speech and OT services that he was eligible for through the early intervention center.

Within a couple of weeks, the Ped called me at home. She told me that she wanted us to seek an additional eval. She'd reviewed her notes regarding DS, as well as the first eval and thought we needed a second opinion. (Later she shared with me that she felt that the dev. Neurologist was 'underdiagnosing' ASD cases, between my DS and a few other patients that she referred and he found no ASD in any of them, despite two receiving Evals elsewhere and being found on the spectrum).

Fortunately, I had never canceled our names from the other docs waitlists, so we received a call for an eval opening about two months later. By that point, I really felt like DS was on the spectrum, and felt like we needed a diagnosis (to get speech and OT covered by insurance, as well as for more services from the school district--although they can't require a Dx, once you have one, it smooths the way for eligibility, more therapy minutes in the IEP, etc.) So after the eval was finished, the psychologist spoke with me. She told me that DS definitely met some of the criteria for ASD (in two areas, but only questionably met the third), however she would give him a diagnosis of PDD-NOS (basically a catch-all that encompasses kids who have most of the ASD criteria, but not quite all).

With the diagnosis, we were able to do so much more for DS--he got additional speech and OT, when he turned three he was found eligible for SPED services, we started ABA therapy. This year he showed up at kindergarten reading ahead of his classmates, but still needing OT/speech therapy and other supports.

I understand that your DS having a known chromosomal deletion complicates the question (actually, our geneticist believes DS has a genetic disorder that is not yet identified), but the encouragement I hope to give you is that if you look at the DSM criteria and feel your DS meets them, to seek additional professional advice--some docs are reluctant to diagnose ASD (for a variety of reasons). I agree with you that the other behaviours (especially the running away--very common for ASD, my DS does this in parking lots too and it is scary/dangerous) are not explained by the apraxia.

Sadly, many children are being overlooked and underdiagnosed. Especially so in some areas of the country--we live in the Southeast now and I cannot tell you how many Moms I have met with kids that have ASD behaviours (kids that are in no way 'under the radar' or close calls) and the docs are saying 'wait another year and retest' or they just have ADHD/SPD/speech delay (add all that up and you have ASD!). The denial or delay of diagnosing ASD means that these parents can't get speech therapy, OT, or ABA for their kids because insurance won't cover it without a Dx (and can be difficult sometimes even with one!) and the schools give kids without a diagnosis the minimum services (the kids with a diagnosis are ahead of them in line receiving the resources). With the early years being such an important time to make those neurological pathways, any lost time means that the child has to work that much harder to acquire skills later on.

That ended up being REALLY long, but I just want to encourage you to follow your gut, and if you feel DS' current Dx doesn't address all his issues, to keep going. I wish you and your DS well, whatever his diagnosis ends up being

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Old 04-15-2012, 11:43 AM

RE: Autism, anyone?

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I have a 5 YO with Moderate Autism........We are from MI
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Old 04-16-2012, 12:56 PM

RE: Autism, anyone?

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Oh my goodness I've missed so much. I hope all of you and your families are doing well. AChiodini, please give us an update when you find time and if you are reading this, know that we are all thinking of you. I did see your post and thought I'd responded, but I have been praying for your sweet boy. Thank you for sharing your sentiments with the group and reminding us of a very important fact about our kiddos.

We are doing well here in rainy Houston...my darling son refused to participate in his soccer game this weekend, but we are going to keep supporting him and his team of course. I think it is confusing that they practice drills with their own balls on Friday and that 6 children are competing for the ball on Saturday. He doesn't seem to understand or appreciate it at all. He probably thinks everyone else has an issue! LOL So...we let him and his brother run around on empty fields while we support the team and he gets his snack and drink and rolls out, all too unconcerned. I love that kid.
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Old 04-28-2012, 07:08 PM

RE: Autism, anyone?

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My son disappeared today out of the crowded zoo play area today in the blink of an eye (he runs very fast even with that stupid monkey backpack leash thing) and after desperately searching I found him riding the merry-go-round (he didn't have a ticket and doesn't meet the height requirement wth?!?!?!) There was nobody there to help me search for him and I was afraid he would get run over by the zoo train or jump into an animal exhibit b/c he has no fear. He turns 4 tomorrow.
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Old 04-28-2012, 07:20 PM

RE: Autism, anyone?

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ugh i'm glad he's safe and sound!!!
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Old 04-29-2012, 04:49 AM

RE: Autism, anyone?

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Originally Posted by hotmama111 View Post
My son disappeared today out of the crowded zoo play area today in the blink of an eye (he runs very fast even with that stupid monkey backpack leash thing) and after desperately searching I found him riding the merry-go-round (he didn't have a ticket and doesn't meet the height requirement wth?!?!?!) There was nobody there to help me search for him and I was afraid he would get run over by the zoo train or jump into an animal exhibit b/c he has no fear. He turns 4 tomorrow.
Oh, I know how scary those moments are!! I am so sorry you had to go through it, and I am grateful he was found OK. Whenever I turn around and see that DS is not right next to me my heart just drops into my stomach, and to be in such a crowded, large place too! I am so grateful that you found him and that he is OK. IKWYM about the 'monkey backpack' too--I tried it with DS, but the problem I had with it was that while I could keep ahold of the 'leash' that it gives the parent no ability to steer what direction your child goes in (basically he was 'walking/dragging' me behind him, when I needed to be directing him where to go). Now whenever we are out I hold him by the wrist, or he sits in an umbrella stroller for really busy/crowded places so I can steer LOL.
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Old 04-30-2012, 06:04 AM

RE: Autism, anyone?

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Thank u for the prayers. Well today makes 4 weeks in the hospital he is so ready to come home. His therapy is Going well he's walking a little now and his left arm getting stronger. Still has double vision for distances which Can go away or be permanent. Just don't know yet. He starts chemo and radiation tomorrow. We are hoping he will be home by end of week. My husband found the time to redo his bedroom in St Louis blues theme so he's gonna be shocked and love love love it.
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Old 04-30-2012, 09:34 AM

RE: Autism, anyone?

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I lost my autistic son at the Hershey Zoo and the staff was awesome in finding him quickly! It was one of those "I thought you had him" times.
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Old 04-30-2012, 03:48 PM

RE: Autism, anyone?

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AChiodini, great news! So glad he gets to come home soon, to a rockin' new room, no less!! Thanks for the update and please keep us posted.

Hotmama, I know you were frightened. Jackson was a notorious eloper. He'll be 5 in September and I have to say that he has improved greatly. I'm sure your son will with age also. I'm so glad they found him safe! He must've snuck in with a family. I do have to say that I giggled at the thought of him riding on the carousel, unconcerned about anything or anyone! LOL! It is an enviable trait in a way, I sometimes wish I could tune everything out and be self serving like our kiddos do!
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Old 04-30-2012, 09:02 PM

RE: Autism, anyone?

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Originally Posted by AChiodini View Post
Thank u for the prayers. Well today makes 4 weeks in the hospital he is so ready to come home. His therapy is Going well he's walking a little now and his left arm getting stronger. Still has double vision for distances which Can go away or be permanent. Just don't know yet. He starts chemo and radiation tomorrow. We are hoping he will be home by end of week. My husband found the time to redo his bedroom in St Louis blues theme so he's gonna be shocked and love love love it.
So glad you found the time to check in and give us an update--Sounds like he is working hard and improving every day

Definitely sending prayers that he tolerates the chemo/radiation and that the treatments will work quickly for him

I have no idea how your DH found time/energy to sneak in the room redo, but what a wonderful surprise for your DS' homecoming!! I bet he will be absolutely thrilled
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Old 05-10-2012, 04:29 PM

RE: Autism, anyone?

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Just an update. So far my son is tolerating the chemo and radiation. No hair loss yet. Radiation doc thinks in next weeks he'll be losing it. All in all doing better then expected. They also put him on risperadone. Think misspelled that but its working beautifully!!!!! He's even expressing himself great and gas become an angel. I couldn't be happier with his progress
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Old 05-10-2012, 05:55 PM

RE: Autism, anyone?

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AChiodini,

Thanks so much for checking in with another update, so glad to hear all your good news and praying that your DS continues to improve I am still amazed at what a close call he had and am so relieved to hear that he is doing well!
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Old 05-21-2012, 07:13 PM

RE: Autism, anyone?

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AChiodini,

Thanks so much for checking in with another update, so glad to hear all your good news and praying that your DS continues to improve I am still amazed at what a close call he had and am so relieved to hear that he is doing well!
Thank u for the prayers. I'm amazed at how close a call it was too. Someone was watching upstairs and made us find it. He's been getting very weak. Has lost 6 lbs. He's almost 6 ft and down to 128 lbs. He was always thin can't afford to.lose more. He's had throat pain from radiation but They got that under control with some excellent mouthwash with lidocaine in it That he can hold in the back of his throat to numb and then swallow. He started losing his hair Over the weekend. I never realized it just comes out in chunks doesn't just thin out evenly until bald. He has no appetite so doc has us trying pediasure. He's dehydrated so everyday of the week we go to chemo and he gets fluids too before radiation. I'm thankful that its not worse. Mostly just the weakness and fatigue. Please keep praying for us. We really appreciate it. Hope everyone has a great week
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