Special needs, doctors, some questions, and just some venting.

[graygables]

my 7yo DD has been diagnosed ADHD and a plethora of other "ABCs". She behaves EXACTLY like my bipolar teen did at that age and BP has not been ruled out. When she was 2, she had a bad immunization that caused a cyst to grow in her thigh. It got to the point where they had to remove it surgically and her leg has bothered her ever since,cramping, aching, etc, which makes me think there was something done to the muscle during surgery (she has a good-sized scar/puckering). She had her tonsils/adenoids out at 5 and had a VERY bad recovery from that. The surgeon never got my messages and when we did finally get back to see him, he told me she should have been readmitted.

Ever since then, she tires very easily, frequently falls asleep in the middle of the day (sometimes even on the floor where she is playing), she has difficulty *staying* asleep at night. She can't walk the mall/park without becoming very tired and falls asleep in the car on the way home. She had a dance recital this weekend and did wind up sleeping 14 hours afterward, she was so exhausted. I have used a stroller with her and we currently have a Dreamer Design jogger, but she is really outgrowing it. She also has sensory/breakdown issues and I have noticed that she can get in the stroller when it starts, pull the sunshade over her and the pressure against her back seems to calm her down, as well as the shade minimizing the input.

I'm looking at the Maclaren special needs stroller, but we have no insurance for med equip (or routine visits ). Also, our current doctor says she is "just lazy", (yes, says this to me in front of her), but our current doctor isn't the one who has had to carry the sleeping 65 lb child halfway across the mall. She says it's sleep-related and behavioral and DD "just needs to get over it". As such, she won't write a prescription for the stroller (that I can at least deduct it from my taxes). We have no other peds in our immediate area. I honestly believe the child has an overwhelming combination of chronic fatigue, sensory integration, and bipolar and it's up to me to try to help her cope as much as possible and if the stroller does that, so be it. I'm meeting resistance from DH who is in major denial (our 10yo is Asperger's) about either DDs problems and he just thinks they are "brats", but he's never around them long enough to see the extent of the difficulties.

Am I crazy? if not, is the Maclaren a good solution? Since it's coming out of my (very shallow ) pocket, I need to make the best choice possible. Also, has anyone had any luck dealing with an idiot doctor, or do you just have to move on?

 

[hentob]

If I were in your shoes, I would drive (or fly if I had to) my child to the best doctor I could find!!!! Start calling around tomorrow.

Fire the one you are currently seeing and please get your child help. She is NOT lazy. She needs help and a proper dx.

Buy the stroller in the meantime. Spending $65 right now is the least of your worries. You could always claim it next year.

Good luck!

 

[cymomtx]

Have you had her throyd tested? Is it possible that her pitutary(sp?) gland was damaged with her tonsil surgery? I would investigate these issues. Have a complete endocrine panel run on her.

 

[Mickey'snewestfan]

Is your child seeing an O.T. for sensory issues? If so, perhaps the O.T. could write the prescription for the stroller?

Having said that I do think you need to look further into the sleep issue. If she's having that much trouble with sleep patterns and staying awake during the day, it's almost definitely going to be playing a role in her difficulties with regulation, mood and attention. If at all possible I'd have her seen by someone who specializes in sleep issues. Maybe a sleep study will help you get to the bottom of this. The suggestion above about getting her thyroid checked is another good idea.

As far as whether the Maclaren's a solution -- it certainly sounds like she's found a strategy that works for her. I think that's great! The one concern I'd have about the Maclaren is that the canopy is much smaller and doesn't provide that same "snug" feeling of shutting out sensory input that the jogger does. They do make special needs joggers but I think their wheel base is really long to be maneuvering around a mall.

Also, a note to hentob -- the 65 refers to the weight of the child. A special needs stroller is generally about a $500 + item.

 

[hentob]

Also, a note to hentob -- the 65 refers to the weight of the child. A special needs stroller is generally about a $500 + item.

I was wondering how a Maclaren would be so cheap (ie $60ish) I totally read it wrong

 

[rhiannonwales]

Honestly, IMHO it sounds to me like your DD has developed a problem from the vaccine.
I know its very inconvienient but id really try to find a better Dr. - any medical professional who says a child is lazy right to her face is a very bad Dr.

I'm one of those crazy moms who dont vaccinate my kids.My oldest DS has a bad reaction to a rotashield vaccine that was later recalled.Today he has many sensory issues and an official ADHD diagnosis.After reading some of the things about vaccines, im convinced that its related.
If youre interested hers a liknk to a board that i'm part of that discusses these very issues and you can ask questions and get good answers complete with corresponding data-
non vaccination forum

Not to scare you but a lot of vaccines contain heavy metals, and preservatives that are toxic to humans.I wont even tell you what other gross things go in there
Let me know if you have any ?'s and id be happy to answer.
And i think that you should get a new Dr. and have him write the script for the stroller.
Sherrie

 

[mlwear]

Have you consulted neurologist, preferrably a pediatric neurologist? If you need a a referral from your ped. either because insurance or the specialist requires it, I would be friendly with ped. when asking; mention "just in case.." I think given the "just in case" and the unusual symptoms should be enough for a referral, the ped should realize that IF there is something more than what he has dx (really seems like there is from what I have read) he wouldn't want to take that chance on being wrong and facing malpractice. But, always start out being nice when asking for anything.
Good luck.
You very may need to travel a bit to visit a neurologist. But, what choice do your really have? Once you have made an appt. you may be lucky and the neurologist will review the case and talk with you on the phone if he/she thinks you should be directed elsewhere. There are doctors who do this! A highly regarded, well-known dev. pediatrician specializing in autism/aspergers would not tgive my oldest DS an appt. after looking at his file. I was upset and didn't know what else to do . He called and talked to me for quite a while and gave me some good advice. But, if you aren't that fortunate, I would make the drive. It could possibly make a huge difference.

 

[tacomaranch]

We truly understand your problems with only having a limited choice for a doctor. See my post regarding waiting for a dr.

I hope you can find a solution. Find a Dr. in a big city that is within a few hours or even incoporate a dr. visit into a travel in the future. I know your frustration and just want to say that we are all hoping the best for you and your child.

Try ebay for a stroller or maybe someone has one for sale online here. Please do let us know how things go and a big hug.

As for the vaccines. We didn't immunize for the all the reasons stated and Hunter still has autism so I just don't know. At the time when we should have started I was too worried about autism and yet we didn't and he has it, so....I don't think we are going to immunize even after the fact.

Good luck, April

 

[mlwear]

As for the vaccines. We didn't immunize for the all the reasons stated and Hunter still has autism so I just don't know. At the time when we should have started I was too worried about autism and yet we didn't and he has it, so....I don't think we are going to immunize even after the fact.

Good luck, April

This is totally OT, but I share this story of irony often.
First, I must preface by saying that I have no strong opinion about vaccines and the link to autism, but think eveyone is entitled to one.
When DS was two (and showed NO signs of autism whatsoever) we were in the military immunization clinic waiting for him to get 4 shots all at once (I know, how stupid was that), there was a mom raising heck about not wanting immunizations because of all she had heard and the rest was blah, blah, blah autism, blah, blah, blah to me. At the time, I just thought, this lady is crazy. They had the chief of immunizations (whatever it is called) come and talk to her and explain the risks of not. Eveyone was giving her a terrible time and we were all annoyed because she was holding us up. I was thinking "this is ridiculous, get the shots and move on. I need to get out of here". Wow...if I had known then what I do now...I would have given it more thought too. But, who knows. It may not made a difference. It's just one of those things. I just think that it is weird that I had that experience and I remember it so vividly.

 

[graygables]

Thank you, everyone, for your replies and for letting me know I'm not crazy. She had thyroid testing and it was all normal. We did go to a ped neurologist (sent by the school for the IEP process) who was the one who dxed her ADHD and gave me a "sleep plan" that involved me sleeping on her floor (I'm 41, I don't *think* so). All she wanted to do was slap DD on Ritalin which we have chosen not to medicate (it's OK that people do, we just don't want to) and basically blew me off when I declined the prescription. They make me feel like I'm a horrible mom and their hands are tied b/c I don't want to drug my kid. We think coping strategies are more important for DD than drugs. I honestly don't think doctors really listen anymore and they certainly don't want to believe that immunizations/surgeries have caused any problems.

We were authorized 4 OT visits with her IEP and the first 2 were used up for evaluation (the initial eval was at a different OT, so this one had to get to know her) She needed some equipment and we had to wait and wait for the school to get the supplies, but they wouldn't extend the OT (she'd like 4 more visits). We're transferring schools (we e-school, btw) so I'm hopeful that they will add the necessary OT visits to her IEP.

 

[lewdyan1]

You are not crazy!!! Go with your gut and keep fighting until you get what you need!

 

[michelle9343]

I wanted to suggest the baby jogger company. My DD has the special needs jogger and it will hold up 100 LB .They were a wonderful company to work with, but it was very expensive. Good luck.

 

[spotdog]

I agree that you should follow your own knowledge of your child and get a more in depth evaluation. Is there a major Children's hospital within several hours drive? You may need to talk with a social worker there if you need to make overnight and/or financial accomodations.

 

[rhiannonwales]

As for the vaccines. We didn't immunize for the all the reasons stated and Hunter still has autism so I just don't know. At the time when we should have started I was too worried about autism and yet we didn't and he has it, so....I don't think we are going to immunize even after the fact.

I dont blame you at all.I dont know for sure that vaccines cause autism, and i think that there is more than one factor for sure.But i wouldnt chance it either!

To the OP, i totally understand your frustration with the ADHD.I dont medicate my son either anymore.We tried Strattera in the beginning because i was adamant that he should not be taking an addictive substance.It didnt really seem to help so we stopped it.Now we try to find ways to cope with it that dont involve medicine.I'd really like to homeschool him, but i am smart enough to realize that i dont have the paitience for it, so hes in public school. :/ Thats been hit or miss really.Not all neurologists demand meds though.
I dont normally reccomend things like this, but i do know of an organization that MAY be able to help.They help people with unexpected yet important needs. here's the link:
Modest needs

It's no guarantee but its better than nothing.
Good Luck!
Sherrie

 

[Lives4Disney]

OP, I just wanted to offer my support. I totally believe moms KNOW when something is not right with our own kids. Go with your gut as another poster said. Keep looking until you get some answers.

I have found that the teaching university doctors are awesome. We see one at UIC and out of 4 other specialists we have seen (that are not univ drs.) he is the best all around. He is a researcher and very interested and does not just blow us off as I know some other drs can tend to do if they don't have a quick fix. My daughter sees him and he has 3 or 4 fellows that also join in the exam. They each examine her and then they consult together and with us. They are just super with my daughter. She does not have any of the same symptoms that your DD has - totally different issues- but just a suggestion to try a university.

Good luck. Keep trying. If my kids had the symptoms you describe I would be concerned, too. I hope it works out.

Lives4Disney

 

[Jerdoctor]

Yep, some doctors suck. We had an eye doctor in particular that wouldn't tell us everything that we needed to know. My son has 5 different doctors and we can't be happier at this point. But it took awhile to get to that point. Living in San Diego, a lot of people said we would have to drive to LA to see certain specialists, but we found the "best" right here in our own backyard.

But what I really wanted to point out is if your gut says something is wrong, go with that instinct. My wife was really troubled after my 6 year old was born. She just kept saying something wasn't right. All the pre birth tests were normal. I was the biggest offender in saying, "relax, we have a beautiful baby boy!!!"

Well, he was having some severe respiratory probs and he was admitted to the hospital. The first pediatrician who saw him looked at some of his features and wanted to run some tests. To make a long story short, my son was diagnosed with 22q11 deletion syndrome. All because of a hunch of this great doctor...

I have heard many stories about things like this happening. Docs saying, "your child is fine", and then they are in the ER three hours after being signed off and released with some crazy symptoms...

Anyways, I feel for ya... And hope it all turns out well in the end!