Just need to vent a little (dumb doctors)

[nitascool]

I'm just so frustrated with Doctors. Those pompous so n' so's. I don't know how much I've shared here about my ds 10. So please excuse any repeats.

 

When he was born he had the cord wrapped around his neck twice. His little body was a bright shade of purple and he needed oxygen to breath. He was 4 weeks early. Wen we took him home and seemed fine. I nursed him and he was an eager eater. He seemed quite a happy content baby though he wanted to be held a lot more then his brother who hated to be held.

 

At his 6 months checkup Dr. said he needed to start baby food. I hadn't started quite so early with his brother but trusted the Dr. So I gave him rice and oatmeal cereal. His bm changed immediately as did his behavior. My happy baby started crying all the time and he started losing weight. The Dr. said it was because he was hungry and needed more baby food. She also said my breast milk was probably drying up. At 7 months we added veggies then fruit and meat. He was eating more then his older brother by this time but hungry always.

 

At 8 months the Dr. decided that ds had Failure to Thrive. We were investigated for neglect. grr. We were sent to a gastro. dr. who did not test at all for allergies even after I asked several times. They did test for Cystic Fibrosis and felt his bowls. They eventually did a blood test for Ceilac but no biopsy which is a more accurate determiner for Ceilac. They just assumed it was because I was nursing and not feeding him enough.

 

They put him on formula that made him even more sick; his skin turned ashen and he vomited after every bottle, sometimes vomiting up more then he drank. His body was limp and all the things he'd learned before were gone. I had a newborn in an 8 month old's body. He would scoot around on the floor without lifting his head because it was too heavy.

 

At 9 months I decided that the advice of the specialists were not working... they kept rescheduling our appointments and not really giving my son any care. He'd gone from 23lbs down to 13lbs in 3 months. So I took him off all food. I stopped giving him formula and just nursed him. He got better. On his 1st birthday he had a piece of cake but other then that he only nursed until 16 months. He started getting better but his progress was a bit behind the scales.

 

By 2 he seemed better physically. But he was all over the place. He potty trained himself in 2 days; he hated urine or bm on his skin. But he was climbing on the roof of the house (not normal boy behavior). Running into walls every 5 minutes and playing with lots of little non-toy things like paper clips and screws. And he chewed holes in his clothes.The new Doctors again said, "Oh, he's just all boy." What the... grrr. I was told that being a "young mom" (in my 20s not that young) I was over analyzing everything. She did suggest a harness for our public outings.

 

At 3 those behaviors were getting worse. He still could only parallel play. And the obsessions with things began. Still the doctors knew that he was just being "all boy". Can I just slap the person who made up that ridiculous statement.

 

Ds began reading at 4 and refused all the fun books I offered in favor of the encyclopedia and the dictionary, anything on space or animals but noting to do with fantasy or people. We were homeschooling my older hg ds so it seemed appropriate to start ds as well. But he had no interest in learning from "boring books" as he called them. He taught himself how to add, subtract, multiply and divide. He refused any writing instruction no matter how fun I made it. But anything hands on was fair game. Still he cried if I picked him up too fast. Taking him out places was horrid, he had no sense of danger and would run headlong into traffic... something the doctor assured us he'd outgrow before "school".

 

At 5 I knew he was beginning to develop lopsided. We thought maybe he needed school for some social skills. He knew so many things yet couldn't play well with others. He was always happy at home, but seemed miserable out in public. Often crying for people to be quiet in the restaurant and saying that the lights are to loud in the grocery store.

 

Just after his 6th birthday (Nov.) we finally insisted that this was not normal "all boy" behaviors. She refereed him for an Autism evaluation. By then I was sure there was some sort of sensory issues going on.

 

The psychiatrist denied that ds could have SPD as it was not a real disorder. She gave him a dx of ADHD-combined and also said he did not have Autism. And that he would not be admitted into Kindergarten in the fall as he was not well enough behaved. Which could be eliminated quite easily by a swat on the bottom. She actually suggested that we spank him! We did not offer that we had used swats on a regular basis and that he didn't really seem to feel swats (another of his many sensory issues).

 

She had given him a K Readiness Eval. which placed him at age 7.5 months. He was reading on a 5th grade level but he wasn't ready for kindergarten. This really confused me?

 

He cried at the noise of the vacuum, spun around wildly for hours, covered his ears at the sound of a dog barking two blocks away, was a fool in the grocery store acting as though he were drunk, was very hyper running all over the place, ran into walls 20-30 times a day, had no impulse control, was dangerous in public, cried at the scratchiness of his cotton clothing, could not hold a fork or pencil properly and so many other issues.

 

We insisted on a referral for SPD. I am so glad we did. He had the most sever case of SPD that the evaluator had ever seen. He was both seeking and avoiding depending on which sense was involved. He was hyper because he was under stimulated in his proprioceptive and vestibular senses. He had to stay moving just to stay awake.

 

He was in OT for over a year before we saw any improvements. We could only afford 30 min. a week of therapy while he needed 30 hours a week.

 

Again we looked at the Schools for help. We were told that he was "fine" and that if he were placed in PS they would not give him an IEP because ADHD was not something that merited an IEP. So we we homeschool him.

 

We did most of the therapy at home on our own. By the end of the first year he could walk on a balance beam and he stopped running into walls. Brushing seemed to help his proprioceptive and vestibular issues some.

 

We stopped for 6 mo. and saw no improvement. When we resumed his therapy we shelled out $250 for a compression vest. By the end of that year almost all of his major behavior issues were gone.

 

We started seeing black circles under ds's eyes and he seemed even more pail then he had been. We asked for allergy tests. The doctor saw no "need" for such testing. This was now my sons 3rd doctor. It feels like we've been fighting tooth and nail for doctors to believe us that something isn't quite right. I have had to fight for every blood test, every evaluation, every therapy. It shouldn't be so hard.

 

He is doing so much better now, but he is far from "normal" or "all boy". He seldom complains about loud noises anymore. He has good balance and seems to enjoy his world. He is only a year behind in penmanship compared to his peers.

 

He accomplished our original OT goals way back when he was 6 and then some. He is now going to OT and Social Thinking groups. He is focusing on more traditional OT therapies now. His sensory issues aren't "gone" but he has learned to deal with them and the world around him.

 

I still often wonder if he really has ADHD or if it is all due to the sensory issues. It's hard to know when you ask,"Why are you not paying attention to me?" and you hear, "The refrigerator is too loud." if what is happening is an attention issue or a sensory issue.

 

In April of last year ds was dxed with PDD-NOS and ADHD-combined. In Nov. he saw a neurologist who said the SPD seemed to be gone. I still see it, but I think it's because I can tell when he's just a bit squirmy at a noise or smell. He's learned to be polite about bad BO and crying babies, but that doesn't mean they don't bother him. I can see how exhausted he is after an outing with so much stimulation.

 

I am a bit angry at the 1st doctor who missed the PDD-NOS. But I'm really sick of these doctors acting like they know everything and then dropping the ball with my ds.

 

I have no doubt that if ds hadn't gotten all those hours of professional OT and all those sudo mommy OT hours he'd be a bundle of nerves now. He'd likely have a dx of OCD and some sort of anxiety disorder now.

 

We've had very little "help" from doctors, his ped. now his 4th doctor is clueless, his psychiatrist was baffled and sent us to an autism neurologist who said his only advice was to give him a very small dose of some drug to help the ADHD during school hours. School is the least of our worries. And I'm not going to drug my son just because this guy thinks it is a good idea.

 

Saturday we went to my oldest son's psychologist (a specialist in gifted children) at a loss of what else to do. In an hour and a half he gave us more help then we've gotten in 5 years of those doctors.

 

But now I have to decide. Do I listen to his pediatrician who things that the GFCF diet is going to make ds sick and bring back the FtT or the psychologist who says that ds is having an opiate reaction to gluten and casein. We tried the GFCF diet on our own several months ago... for three months and saw no difference, except in our wallet.

 

Well if you've read this so far... thanks. Sincerely frustrated.

[frugalmama]

:grouphug::grouphug::grouphug:

 

I could have written much of your most in describing my 5yo dd. She covers her ears all the time, runs into walls, and at nearly 6 still parallel plays 90% of the time. I have a couple of questions if you don't mind - yours is the first kid I've seen so similar to my dd. What formula did they put him on? Was it an elemental formula?

 

And my dd's ped is about the same - we suspect something sensory and ASD combo, but can't get a referral to evaluate for either one.

 

Not much help here, we're in this boat too.

[nitascool]

:grouphug::grouphug::grouphug:

 

What formula did they put him on? Was it an elemental formula?

 

I'd tell you Ped. either give a referral or we'll find a Ped. who will. I'm so sick of these idiots who think they know it all. I mean doctors. :lol:

 

I don't know what an elemental formula is but he was on Similac, Similac Expert Care for diarrhea and finally Enfamil ProSobee (a soy based formula). The doctor was very smug when he started getting better until I told her that we went back to only breast milk.

[Guest]

:grouphug: I don't post often about my kids behaviors but a lot of what you said describes things I have experienced with Malcolm, Adrian, or both. I am so sorry for what you have been going through! We have not even found a doctor to take our kids on, much less send them for any kind of evaluations, but that's a whole other story.

 

I would look into what the psych (the specialist in gifted children) said and try to get your hands on Misdiagnosis and Dual Diagnoses. The book explains a lot about giftedness masking as ADHD, Bipolar, OCD, Asperger's, Depression etc. or if they co-exist, and the differences between giftedness and all these disorders. I highly recommend it. It has helped me understand so many of these disorders better, that giftedness or not, it is worth the read. Hope you find the answers you are looking for, somehow :grouphug:!

[NovelMama]

You might want to check out the GAPS diet; I just posted about it in another thread about non-pharmaceutical treatments. Another idea would be to check out the ALCAT food sensitivity/allergy test and see if there are other foods that could be contributing to the issue.

 

Also, having worked with a nutritionist and learned a LOT about our food sources, how food is processed, etc., I'm pretty convinced that no one loses anything their body needs by cutting out wheat/gluten, so I seriously doubt your son would get sick from not having gluten. I feel pretty much the same about dairy.

 

When you went gluten free before, how careful were you about trace amounts, etc.? It can take a whole month for gluten to clear from the system, and depending on how sensitive a person's system is, even the slightest bit can foil the whole thing, so if you're not checking ingredient lists for hidden sources you may not have any success.

[LillyMama]

I don't have anything for you on the SPD, Autism, etc. issues. But the first year or two you described sounds like my friend's son to a T. He was diagnosed with Eosinophilic esophagitis. It's basically a food allergy thing that impacts his esophagus. He was FTT for a long, long time. He's just about 3 years old now and has JUST shown up on the "charts" for height and weight.

 

Not that you really want to deal with more docs, but, as scary as that disorder is, she is happy they finally got a diagnosis and some direction.

 

Other than that, all I can offer is sympathy and :grouphug::grouphug::grouphug:.

[Guest]

Ooops, I should have explained a bit better! I was referring to relating to some of the sensory issues. We have not had any growth/ food issues here, but I did go gluten and casein free with the boys, for various reasons.

Edited May 29, 2012 by Guest

[LittleIzumi]

Can you just make an appt with a gastroenterologist or a pediatric allergist yourself? I didn't need a referral with any of my three different insurances over various children.

[nitascool]

Can you just make an appt with a gastroenterologist or a pediatric allergist yourself?

The gastroenterologist that my son saw when he was a baby was woefully ill-equipped to deal with my son. He hasn't had any noticeable gastro problems since then so we never took him back. The doctor never did any testing aside from a single blood draw, bowl palpitation and a visual assessment of his feces. He decided before he even saw my son that his weight loss was due to either my neglect or my "lack" of breast milk. The "solution" of formula made matters worse, but they insisted we continue doing the same. My mom-sense decided against that course of action so they wrote us off.

 

As far as allergies goes, our ins. requires a referral which my ds's Ped. seems to think isn't necessary. The Psychologist has said ds may have allergies. He wants ds to do the gfcf diet for a while to see if the allergies symptoms go away. He seems to think it may be a preservative in something he's eating or it could be gluten or casein.

[LittleIzumi]

The gastroenterologist that my son saw when he was a baby was woefully ill-equipped to deal with my son. He hasn't had any noticeable gastro problems since then so we never took him back. The doctor never did any testing aside from a single blood draw, bowl palpitation and a visual assessment of his feces. He decided before he even saw my son that his weight loss was due to either my neglect or my "lack" of breast milk. The "solution" of formula made matters worse, but they insisted we continue doing the same. My mom-sense decided against that course of action so they wrote us off.

 

As far as allergies goes, our ins. requires a referral which my ds's Ped. seems to think isn't necessary. The Psychologist has said ds may have allergies. He wants ds to do the gfcf diet for a while to see if the allergies symptoms go away. He seems to think it may be a preservative in something he's eating or it could be gluten or casein.

 

Can the psych write a referral, or a note to your ped requesting a referral? That stinks about your docs. We've switched peds multiple times and seem to have finally found a good one (fourth try, lol), but got lucky with a fab gastroenterologist and a good allergist (I miss him--our insurance only covers the blech allergist nearby. I might make the drive to a better one next time...).

[nitascool]

We've started the GFCF diet with ds. I really don't want 4 little bears and 1 big bear. So we are starting with him and working toward getting the rest of the gluten out of the house. We had to change ds's vitamins because 1 had gluten in it and the other had dairy. I wonder if that was part of the problem before... we didn't even think to look at his vitamins for gluten or casein.

[Dobela]

:grouphug::grouphug::grouphug: My dd was born 14 weeks premature and had a terrible time gaining weight. Everytime I would go to the clinic for preemies the doctors would get after me for her slow weight gain. At one point I was told that I simply did not know how to hold a bottle and that I needed to use fast flow nipples. Shortly after that dd began refusing to take a bottle and I switched back to something else. When we started solid foods, she would cry and refuse them and I was accused of being a nervous mother. While she is adopted I have had her since she was 7 weeks old and being released from NICU. Some doctors would look at me and say things like, "Oh, you are just the foster parent." Like I didn't know anything. Never mind the fact that I have a masters in early childhood special ed and had spent many years working with medically fragile kids...

 

Finally, when she was about 1, a new resident came in after keeping me waiting for over 2 hours and made a comment about how skinny she was. I exploded all over him and again demanded a swallow study. He agreed once I stopped chewing him out. When the study was finished I wrote letters of complaint to the hospital because they showed she had been suffering with silent aspiration. She could have died! Once we began thickening her drink and foods, and she began receiving therapy for low oral motor tone, she began eating and gaining weight.

 

She still struggles with oral motor issues and is still fairly sensitive about food textures and consistencies. She still has difficulty controlling fluids with a straw and her tongue.

 

I say all of this to ask if a swallow study has ever been done or if you have ever worked with a feeding specialist.

[Guest]

Reading stories like this makes me really sad :(. I am so sorry you had to go through that! Not being heard is one thing, being accused of not looking after your child is quite another :glare:!

[nitascool]

We never had any feeding study or therapy. He eats almost every thing now at 10 but he never had any problems chewing or swallowing once we began him on solids... he never spit out his food, though he did vomit a lot up after swallowing for the first year and a half.

[ktgrok]

Hugs. My almost 13 year old had so many of the same symptoms. He was also dismissed as just adhd, and meds were offered for school. Um, school work isn't the issue!!! When you said he seemed "drunk" I can totally relate. I remember being at a flag football practice when he was about 4 or 5 and he just started wandering around the field in the middle of a play. It was totally bizarre. (that was when the ped said it was ADHD). He was finally diagnosed with Asperger's and SPD AND ADHD at age 11. I already knew about the sensory, as I have it too, so we were already working on that, But the Asperger's was a huge help to know about and understand,a nd I have SO many regrets looking back. All the times I thought he was being "rude" or naughty and he was just trying the best he could.

 

I'm glad you have more info now. no idea on the diet issue.

[Tiramisu]

But the Asperger's was a huge help to know about and understand,a nd I have SO many regrets looking back. All the times I thought he was being "rude" or naughty and he was just trying the best he could.

 

:grouphug: :grouphug: :grouphug:

 

No Aspergers, but I've BTDT. :(