Skip to content
Welcome to our new forum! All existing NW Cryobank forum users will need to reset their passwords. Click forgot password and enter your email address to receive the link. Email us at info@nwcryobank.com with any questions.
NW Cryobank community boards and sibling connect groups will no longer be available after December 20th, 2023.

Such a puzzle

sara291sara291 Posts: 1,042
edited November -1 in Parenting and Life
Figuring out what's up with Riley is such a puzzle :( He is in counseling, saw a child psychiatrist today and is an occupational therapy. We do know that he is very unaware of his body in space, that he is 0 or 100% (he has a hard time being in betetween) and that he has poor impulse control and self-regulation skills. Both main dr and OT thinks it is going to be a complex situation and that he has a mix of things. He is I guess testing high in random areas that don't typically go together on lots of their random test. They think he has a sensory processing disorder in the touch processing area but he also marked high for possible ADHD at the OT office tests I filled out. The psychiatrist who is fairly new in the field said it looks like ADHD or possibly a mild case of Autism (because I think of certain flags like his delayed speech. He is still in speech therapy) and I assume others. Dr also thinks perhaps his first 18-months of life could have effected all of this. I'm sure of of you long timers here remember how difficult he was and how sick he was. Plus in that time frame we live in a house and the wall that his crib was up against had black mold inside. I did not know this. He was pretty sick but with in a week of moving he was a whole new kid. Anyways his answer his Adderall of course. He is talking it over with his supervisor and calling me back tomorrow. We got in on a last minute appt today so I don't think he had any time to look at Riley's medical charts which highly annoyed me. This is all in the same office as his regular dr. I knew he has all the records and I went into sign release for all the rest but he seriously didn't know at all why we were there at first. Given it was a last minute it still bugged me. I asked that they read over his occupational therapy notes since that has a lot of important info. So frustrating. So many SPD, ADHD or mild Autism according to them :( what a confusing mess.

Comments

  • TheOtherLovingMomsTheOtherLovingMoms Posts: 1,481 ✭✭
    edited November -1
    I would be Leary of giving a stimulant such as adder all to such a young child as Riley. If the adhd is so bad that he needs medication for it I would as to try something else that doesn't contain a stimulant. Adderall contains 2.
    IGXwm4.png
    I just turned 50 and fabulous!!! Enjoying life with my amazing family!!
    Mom to Rachel 33, Bethany 30, Rebekah 30, Zachrey 20 and several angel babies
    Grandma to Larissa 11, Brittney 11, Trevor 11, Destiny 7, Jayvin 6, Jackxon 3, Kaleb Joshua Rian 1. Grandbaby #8, Sariah Grace born 11-17-16
  • sara291sara291 Posts: 1,042
    edited November -1
    Right now the adderal suggestion is just the Drs and not even been okayed by the main psychiatrist since I think the person I saw today is still a resident. I'm curious what their final decision will be though. I do know we've tried a lot and he is having a very hard time :( I'm not putting him on any meds until I explore further with the OT but just hate how quickly they give meds. I do know something is not quite right with Riley but I seriously think anyone can say they have a difficult child and be given Adderal. So frustrating. I will admit though that Z (not releated to R) is on Adderal and Tenex but he has helped him sooooo much. Such a happier kid, making friendships and no longer struggling daily in school. We tried a few meds before the current combo.

    Trust me meds are not my first go too by any means. I could go on and on and on about the things I've tried :( and I'm not done trying
  • K&HK&H Posts: 3,368 ✭✭
    edited November -1
    How is his sleep? A lot of that stuff sounds like sleep deprivation. Does he get quality sleep, and enough of it?
    GOzIm4.png
    hAO7m4.png
    CmQMm4.png
  • sara291sara291 Posts: 1,042
    edited November -1
    He sleeps well. 7:30 ish to 7 is his general schedule. I for a while was having him take an afternoon nap and it wouldn't phase him or his mood. He is active in his sleep but he doesn't wake up sleepy or apear sleepy. We also have done the full elimination diet about two years ago and didn't seem any improvement. We are still exteremly strict on their diets though.
  • old mamaold mama Posts: 4,682
    edited November -1
    I can't give you any advice but to hang in there. My son is 10 adopted, drug/alcohol prenatally. I have been dealing with mental health, anxiety, fear since he was born. After numerous trips to drs. for chest pain, shortness of breath, blackouts they finally determined anxiety and stress. I pulled him out of school. I know how tough it is with these kids. There are no easy answers and drugs can help or hinder. I know what it like to try and try different things. I also have two adult adopted sons who were also had fetal alcohol syndrome and ADHD. The problems don't end in childhood. All we can do is try our best and see what works and what doesn't. Unfortunately, what works for a while may need adjusted or changed over time. There are respite care programs out that that aren't based on income just on his needs. I hope if you aren't now you look into them to give you a break once in a while. Good Luck.
  • blkbrd3blkbrd3 Posts: 1,221 ✭✭
    edited November -1
    Does he snore? I know it's an odd question but sleep apnea can present in ways that look totally obvious in hindsight but don't make a hell of a lot of sense in the moment.
  • sara291sara291 Posts: 1,042
    edited November -1
    blkbrd3 wrote:
    Does he snore? I know it's an odd question but sleep apnea can present in ways that look totally obvious in hindsight but don't make a hell of a lot of sense in the moment.

    Yes he does snore a little but it's not all the time and it's not loud
  • blkbrd3blkbrd3 Posts: 1,221 ✭✭
    edited November -1
    Both my son and I have obstructive sleep apnea. I'm so anxious about that sometimes I think I see it as a culprit for just about everything from ingrown toe nails to the common cold. I'm just trying to be completely honest and acknowledge my next suggestion is likely waaaay off base.

    That said, you might give the subject of obstructive sleep apnea a 20 minute read. Sleep disordered breathing including OSA is rare in children. Their symptoms may present differently than in adults. Symptoms can include but are not limited to; snoring, long pauses in breathing while sleeping, heavy breathing while sleeping, restless sleep and sleeping in unusual positions, bed wetting or frequent nighttime urination, excessive sweat at night, day time sleepiness or behavioral problems.

    Those behavioral problems can include ADHD like behavior and development problems or delays. Older children report daytime irritability, hyperactivity, and difficulty concentrating (too much or too little).

    I'm likely suggesting you go on a wild goose chase, but here is my experience...

    My son is 18 months old. He has been diagnosed with moderate OSA. On a good night he has an average of 2.5 AHIs per hour and deoxygenates to 88%. This is as good as his nocturnal breathing gets. During cold and congestion season it gets much worse.

    My son has severe communication and social delays for which he's receiving early intervention services. His test results also suggest a cognitive delay that is mild enough not to qualify for early intervention services. He has moderate hearing in his best ear. His hearing loss is likely due to fluid buildup in his ears which may be related to the .

    I've observed enough changes in my son's behavior and abilities on days when he has a good night sleep vs. a bad night's sleep due to OSA that it is clear to me OSA has a huge impact on his delays and challenges.
  • tinydancertinydancer Posts: 1,210
    edited November -1
    look into food allergies and vaccine damage. both can cause alteration in mood and behavior. both can be fixed somewhat with taking out the toxins and rebuilding the body.

    I too would not be for aderall. even as an adult I tried it and it made my heart race and I was very shakey. exercise is my cure to ADHD.

    Im really sorry to hear of all the issues. such a sad situation, especially when you want help and you dont even know where to begin or get a plan of action.
  • sara291sara291 Posts: 1,042
    edited October 2015
    I'm not set on trying Adderall or fully against it yet. I'm not planning it but keeping it as an option. I know some kids and adults who have responded well and say it helps but it's not what I want my child on. I will look into the sleep test. I have a referral already. I'll look into allergies and other issues. I know he was around black mold for 1 year from 3 months to 16 months and I believe that did effect him

    I just hate how quickly drs say ADHD :(
  • sara291sara291 Posts: 1,042
    edited November -1
    So after the evaluation they want to try Adderall and refer him to a pediatric neurological specialist :( I have not decided on the meds but but am checking out the specialist and am having him check out for any sleeping issues. I have the referral already. They said between his speech delay and that he still wets the bed they are a little concerned. He is not nor has ever been behind academically and they said the little things are okay like it's common to bed wet at age 5 but mix them all together and its cause for concern. I'm a bit thrown off by all of this. I thought it would be more simple. Z was tested after months and found to have ADHD. With R they told me adderal would help with the impulse control to go along with whatever else may be there. I'm not sure what to think :(
  • TheOtherLovingMomsTheOtherLovingMoms Posts: 1,481 ✭✭
    edited November -1
    Adderall MIGHT help with the impulse control. The reason I say that is bc my grandson was put on it and he was worse on the adderall than he was with no medication. I know it works for some but in some cases it can do more harm than good.
    IGXwm4.png
    I just turned 50 and fabulous!!! Enjoying life with my amazing family!!
    Mom to Rachel 33, Bethany 30, Rebekah 30, Zachrey 20 and several angel babies
    Grandma to Larissa 11, Brittney 11, Trevor 11, Destiny 7, Jayvin 6, Jackxon 3, Kaleb Joshua Rian 1. Grandbaby #8, Sariah Grace born 11-17-16
  • sara291sara291 Posts: 1,042
    edited November -1
    I do not think Riley has ADHD. I think he has some similar features but that's all. His teachers say they wouldn't suspect ADHD. When I was filling out a huge questionnaire for the OT he did have many high markers suggesting ADHD and then I saw the psychiatrist who only sat down and asked me a bunch of questions from a list. I don't know for certain but it's just my feeling. I called on the sleep testing and didn't hear back but will call Monday again. Have a referral to the top of the line for neurological pediatric specialist just for his imput. R has a few all other the place flags. He isn't behind academically but his speech delay reasons one. He's doing great and you can hardly tell that his articulation still behind.

    So just to have some more info I did go ahead and try the Adderall prescription today and well we won't do that again :(

    I wanted to see if it by chance did help him and how but it didn't at all.
Sign In or Register to comment.