longish, but I'm desperate for answers

mouseketeer_mom

DIS Veteran
Joined
Sep 20, 2006
Let me start by saying that I rarely visit the disabilities thread so some questions I ask may have already been answered in other threads. I've posted a few times in threads involving ADD/ADHD as both of my sons have been diagnosed with the disorder (one ADD and the other ADHD). But, lately I've been becoming more concerned.

My oldest son will turn 10 in December. Chase was diagnosed as ADHD at a very young age. (4yrs I think) He had a miserable year in a three year old preschool class with a teacher that was soooooo not interested in having Chase in her class. About 1 month into school that year, she basically told me, in pretty much these words, that Chase was most definitely ADHD, he was not going to have ANY good days at school and that he should be medicated ASAP. We did have Chase evaluated by a child psychologist that specialized in ADD/ADHD and he also concluded that Chase may likely be ADHD but he was too young to be certain and he recommended that we not medicate Chase in preschool.

The following year we switched preschools and Chase had a great and successful year sans medication. Fast forward to Kindergarten, Chase's teacher happens to be the mother of an ADHD son. She is wonderfully supportive of our decision not to medicate Chase but has some tough realities for us about school for an ADHD child. After MUCH thought, consults with teachers and our doctor. Chase is placed on meds about half way through the school year. HUGE SUCCESS! Chase is doing well and rapidly making up lost ground. In the last three months of kindergarten, he comes off the summer school list, comes out of 2 to 1 reading intervention, and comes from the lowest reading group to on grade!

Chase is now in 4th grade and doing fairly well. On grade in some things and slightly ahead in others. Chase has never been a "behavior problem" with regards to acting out. Even in preschool and kindergarten it was more of a "sitting still" issue than being deliberately disruptive. He is always well mannered and respectful, even off of his medication.

So, things are pretty much status quo!

But, and it's a huge "but", It feels wrong. I have always felt like the ADHD is part of something more. There are things that just don't add up with Chase. Chase has always been in the 90th percentile in height and weight. Now, all of the sudden he seems to be gaining weight. Chase is very active. He plays football, so in addition to just being an active kid, he's getting 2plus hours of rigorous exercise 4 times a week. His eating habits haven't changed. Our family is all average sized. But, Chase just seems to piling on the weight. I know, I know, all kids grow differently. But, it just feels wrong. I just can't shake the feeling.

Chase has also never ever ever been a sleeper. He's my oldest so as an infant, I simply didn't know any better. He was a snoring a good bit as a toddler, so they removed his tonsils and adenoids. No more snoring but no additional sleep either. People comment all the time about the dark circles under his eyes. And, the more sleep deprived he becomes, the more noticeable his ADHD symptoms seem to be. Let me give an example. This past summer, Chase spent the day at the lake with my sister. Swimming, picnicking, hiking and then biking. He came home at about 4pm. A friend then invited him to swimming that evening and he went. Home again about 9pm. I put him in the shower while I fixed him a snack. He went to bed about 10pm. My husband was up for work the following morning at 5:15. Where was Chase? Outside jumping on the trampoline, in the dark! with no adult! His response? "I just couldn't sleep". Now, we are BIG on bedtime at our house. My kids have had a bedtime routine since about 6 weeks old. Bedtime is strictly observed. But, Chase has difficulty falling asleep and staying asleep. It's so significant that about once every 3 or 4 months, Chase will sleep until about 7:30. That's an extra two hours for him. Everyone will be late for school and I'll be late for work in order to allow him to sleep. Attendance and punctuality are also BIG in our family but I feel like Chase's sleep is so precious I don't dare wake him. Again, I know, every kid is different but it just doesn't feel right.

Chase also has what I call "spells". These have just started in the last year. Chase will be perfectly fine one minute and the next, he's pale, sweating and nauseous. It will pass in about 5 mins. Twice he actually threw up. This has happened maybe 20 times since last Christmas. There doesn't seem to be any rhyme or reason. Sometimes he's out playing, other times he's getting ready for school. Once, when he actually threw up, it was in school and I went to pick him up. By the time I got there he was fine. I still brought him home as it's a school rule. He played outside the rest of the day.

Lastly, and this is a weird one, I know. Chase's teeth. Chase's dental health literally keeps me up at night. I have three children. They all have the same "brushing and flossing" routine. Live in the same house. See the same dentist. Use the same toothpaste. Eat the same things. The other two kids are 7.5 years old. One has had a single cavity and the other has none. Chase? Three teeth pulled, 2 root canals, and somewhere around 18 cavities. We were at the dentist in April. He had a cleaning, x rays and then later a cavity filled. In late May, he woke with toothache. Sure enough, a significant cavity under another filling. Now, I've done some reading about ADHD meds, they can cause "dry mouth", a reduction in saliva, which in turn can lead to more dental caries. But this? It just doesn't feel right.

I know this has been really long. Thanks for taking the time to read it. I have an appt with the Dr. in about two weeks. I've mentioned each of these things in the past but never really pushed the issue. This time I'm going to. I know it sound ridiculous, but I just have this feeling that something is just a little "off" and not working the way it's supposed to. But, I have no idea what to ask the Dr. for. I have no clue where to start to look for answers. My mother's an RN. She has had concerns about Chase for some time. We currently see a family doctor and she thinks Chase needs to see a pediatric specialist. But a specialist in what? Neurotic Mothers that just have an uneasy feeling?

Any insight or suggestions would be appreciated. I'm worried the doctor isn't going to take my "gut feeling" seriously. Maybe I am crazy :confused3
 
Tell your doctor that you want a referral to a pediatric endocrinologist. Don't take no for an answer. The endo can do all sorts of tests for the weight gain. As far as not sleeping, the doctor that prescribes the ADD/ADHD meds should be made aware of this and will probably put him on melatonin.
Poor sleep habits correlate with growth hormone production and sleep is very necessary for everything to work correctly. This is something the endocrinologist can help with. They can check cortisol levels, will probably monitor growth over a period of time before checking growth hormone levels. They can get an initial base line but it is very expensive to do the stimulation tests so they like to "see" if they need to do it. My child was monitored for about 8 mo's before they did the stimulation test and they found he produces very minimal gh and did not increase production at all on stimulation. Good luck!
 
I agree with the endo, but if there were a wait, thyroid tests would be in order ASAP. If you are looking for a ped better versed in ADHD I would recommend finding a developmental pediatrician (especially if it is you intend to at some point reduce or eliminate the medication).

Has your dentist been giving him surface hardeners or treatments. As a lark get some PH paper (or meter) and check the ph of his saliva at various times (use someone in your family with less dental problems as a control). See if there is a significant differential.

bookwormde
 
I agree with the endo, but if there were a wait, thyroid tests would be in order ASAP. If you are looking for a ped better versed in ADHD I would recommend finding a developmental pediatrician (especially if it is you intend to at some point reduce or eliminate the medication).

Has your dentist been giving him surface hardeners or treatments. As a lark get some PH paper (or meter) and check the ph of his saliva at various times (use someone in your family with less dental problems as a control). See if there is a significant differential.

bookwormde

The thyroid could be an issue. Not sure if it could be hereditary but my husbands family has a history of thyroid problems. The dentist does give him a flouride treatment with UV light. I think the phsychologist we took him to when he was younger was an educational physchologist. Although I'd love to see an end of ADHD meds in sight, I'm okay with him being on them for now. I'd just like to be sure that ADHD is really the issue or rather the "whole" issue.

Thanks for the advice. I'm actually making a list of requests for the doctor. Thyroid tests and a pediatric endochronologist will be on it. I don't even care if the doctor does think I'm crazy as long as he humors me and we can try to get somewhere.
 
I can relate to the dry mouth thing. I am on meds that make my mouth dry. When I told my dentist, he was very worried, as he had another patient who's mouth rotted away with cavities after having the same dry mouth from meds.

I have been on my meds for two years, and after one year on them, I had a cavity. Haven't had one for 20 yrs.

Hope you get somewhere and get this figured out for your son. :goodvibes
 
I agree that an endo is probably a good idea.; there could be a potential metabolic, hormonal, or blood glucose (sugar) issue; at the very least, it's probably worth looking into.

Does you DS have sealers on his teeth? DD is doing a lot better since we had those done; the funny thing is that for most kids, it's a one time deal, but her's need to get "topped up" so I understand having a kiddo w/ a "weird" mouth.

At the end of the day, when something feels "off" to you, it's worth checking out. And if the answer doesn't feel right, keep looking elsewhere. You are the best advocate your child has.
 
No expertise in this area, we have ADHD here but none of the issues you're having.

However. Trust your instinct. That's all I'm gonna say. And if you need to turn into a witch at the doctor's, then do it. How many bazillion stories are there of kids whose mom's... lots of things... "I thought something was wrong but the doctor said not to worry"... Trust your instinct.
 


I can relate myself to dental problems. Dry mouth does increase the risk of dental problems and dry mouth could be a side effect of medications. If the dry mouth becomes too bothersome, you can check with your doctor about switching to another medication. However, I think all medications have potential side effects, and you have to weigh the benefits of the medication against the side effects that you may experience. I haven't figured out a way to keep the dry mouth away. I'm trying to keep myself hydrated enough, plenty of water through the day. Sugar free gum and dry mouth products with natural ingredients… This helps keep my mouth from getting too dry. It also helps reduce the tongue sores.
 

GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!











facebook twitter
Top