Ok. What sense would you make of this?

MrsT0514 · September 2014

This is getting ridiculous. As I explained in my last post, we've been concentrating on getting to the bottom of DS's balance issues (he's 20mo) and what type of therapy would work the best to get him steady on his feet.

We've been to 2 ENTs, which concluded no ear fluid issues. They werent overly concerned with his balance issues..they suggested we get him in therapy and see how he does. We've also had a full neurological eval done (thru local children's hospital), she was not very concerned either, considering everything neurologically looked good. She didnt suggest any further testing at this time, but we follow up with her next week.

We've been working with EI thus far, and my frustration level with them is at an all time high (explained in my last post about requesting a new EI therapist). I'm not a fan of our current PT, but our Service coordinator has been less than receptive to my concerns. I dont feel that DS is getting much out of therapy, although we havent been working with her all that long. But something in my gut just doesnt quite mesh well with her approach. We just had an OT eval yesterday (thru EI) and they added OT to our IFSP bc they're seeing some propioceptive/vestibular sensory stuff (falling/tripping/coordination/balance issues) that OT could help.

Well we just had an OT eval done today through the local children's hospital and believe it or not, they dont see a need for OT at all. The OT stated that although she does see some possible decreased propioceptive awareness, there's nothing else concerning enough to convince her that he needs OT. Although, the PT there took a look at him and immediately suggested that we see an ortho. He's still really bowlegged and seems to walk on the outer sides on his feet bc of it (hence could be contributing to him losing balance and falling a lot). His tone is a little low, but nothing concerning enough to be the cause of his balance issues. All in all she set up an appt for us to come in next week to meet with her and get him started with a therapy regimen. She also thinks he needs ankle braces to help him build strength and gain steadiness. She also said once we get him set up with a therapy program in the clinic there, she'd have an ortho come take a look at him. But other than that, she didnt seem all that concerned either.

At this point I'm just really friggin frustrated. I feel like we're getting the run around, and I just want to get to the bottomofit. At this point, I have more faith that we'll see results in the children's hospital therapy clinic than through EI. It just amazes me that we have such different answers from the 2 entities. Im so fed up with the crap and dismissive attitude I've been dealing with from our EI service coordinator that I've been contemplating suspending EI services altogether and just seeing how things go with the therapy clinic for a bit, but I feel like thats a little crazy to do, considering free services are free services. But EI has been just making me plain crazy lately, more so than helping. Im just confused and fed up. Im tired and I just want to let my kid be a kid instead of having to cart him around to all the dr appts, evals, etc.

Thanks for listening.

lvisser · September 2014

After Ezra's diagnosis I put speech on hold for a while... His speech therapist didn't "agree" with the dx, in fact he didn't even know what pdd-nos was.... Anyway... Shortly after that we moved on to someone else... If I were you, I'd put the ei on hold... But that's just me...

MrsT0514 · September 2014

@lvisser‌ Yeah, its just been incredibly confusing and frustrating bc EI will come out and tells me how "concerning" his balance is, but every dr (and private therapist) we've seen barely bats an eyelash. So idk. The discrepancy between the children's hospital OT eval and EI OT eval just astounds me.

lvisser · September 2014

MrsT0514 said:

@lvisser‌ Yeah, its just been incredibly confusing and frustrating bc EI will come out and tells me how "concerning" his balance is, but every dr (and private therapist) we've seen barely bats an eyelash. So idk. The discrepancy between the children's hospital OT eval and EI OT eval just astounds me.

yep... Welcome to special needs.. Ezra was eval by his speech therapist and about 5 other ot/pt as well... All said I was basically crazy for suspecting autism... A month later, we got a dx... I, however, chose to side/agree with the neuropsych...

MrsT0514 · September 2014

Ugh. I just feel like this whole process is getting ridiculous and I just want to see some progress. It kind of leaves us between a rock and a hard place when opinions differ like this. It only makes things more confusing...and yet another dr to see and more stuff to rule out. Its exhausting. I feel incredibly bad about having to drag my kid to all these appts/evals too. Although I really think a clinic setting (having access to more props/equipment/etc) will be really beneficial to him. So that's a plus.

MrsT0514 · September 2014

@ClaryPax‌ I definitely see him as a naturally clumsy kid, thats for sure! I mean, the neuro did mention the possibility Developmental Coordination Disorder aka "clumsy child syndrome", especially since he isnt exhibiting any other neurological signs (besides the coordination issue) of anything, but that typically isnt diagnosed until kids are at least 3 or 4 at the very youngest (also reiterated by the OT we saw today).

I mean, he's definitely having some coordination troubles, that he could use some extra help with, so I want to make sure he gets that. On a positive note, I'm definitely grateful that none of the specialists we've seen are overly concerned. As the ENT put it,"if your kid's not ringing any alarm bells for the doctors you're seeing, thats definitely a good thing!" So yeah.

I cant help but feel like it's foolish to let go of free services, but like DH and I discussed, maybe we'll get him into therapy at the clinic; start that, and then suspend EI for a bit to see how it goes. Bc I'm just plain frustrated with our EI team at the moment. They've been more a source of frustration than help lately, which is a total bummer.

dunnmommy · September 2014

@MrsT0514‌ My 19 month old (15 months adjusted) DS had the same issues you are talking about with your DS. We had an EI eval for OT, PT, and ST. he qualified for OT and PT at 6 months. It just was not working... We go to the ENT ALL the time. He has had tubes put in. We have also been to the neurologist and had 2 sedated MRIs bc they were thinking possibly CP. I went to our EI coordinator several times and she pretty much kept saying there is only 1 OT and 1 PT for your area so you are stuck with who you have currently. So, I said screw it. I went to the Childrens Hospital and had him evaluated there and he qualified for ST, PT, and OT. The equipment was better, the training and accountability of the therapist was better, the techniques they used and taught me to use at home were better. Our insurance fought me on having "private" therapy but I went to every doctor DS had seen and had them right a referral. Most of it is covered now but what we pay out of pocket is worth it. Long story short, my advice is go with your gut. My guy said leave the EI program and my DS is so much better off now! Good Luck!

MrsT0514 · September 2014

@dunnmommy‌ Thanks for sharing! Sorry you had to deal with so much frustration as well. If you dont mind me asking, where are you guys at with therapy/diagnosis now? Did they end up ruling out CP? Did you ever find the cause of his issues or do they think its just a delay of some sort?

So glad to hear private therapy has worked out for you! I have a lot of faith in our local children's hospital's therapy clinic. They're pretty much the go to in our state for anything like this and the therapists we met today were awesome. The clinic itself is a great space and the therapists were so attentive and receptive to him/us.

dunnmommy · September 2014

@MrsT0514‌ The neurologist at our Children's Hospital said he thought it was Ataxic CP ( which has a lot to do with muscle movements, tone, and balance is legs, trunk, and arms). After 2 MRIs he has said he is not willing to rule that diagnosis out yet but does not want to say with 100% certainty that it is Ataxic CP. DS MRI scan did show a big discrepancy in white brain matter versus grey brain matter. So, right now diagnosis wise we don't have an answer. They definitely have said he has a delay and sensory issues that his OT works on. We have another MRI at 24 months (maybe we will et some answers as to a diagnosis then). It took DS 10 months just to learn how to sit. It has been a slow process but he is walking now. His balance is getting better but there has been some discussion about a helmet. He falls quite a bit. He still has a lot of sensory issues and he is not talking yet. The PT does a lot of stretching and muscle massages on his legs, thighs, and hips and I feel like DS has seen a lot of improvement since that has been implemented. Like you said, the clinic therapist here seem like they care more and are receptive to what I have to say. I feel like even without a diagnosis DS is making much bigger strides with private therapy.

ppants · September 2014

I'm sorry you're getting the run around. I would focus on seeing an orthopedic dr to rule out any physical issues causing him to fall/be uncoordinated. DS had metatarsus adductus as an infant. He wore a cast for 2 weeks and then special orthopedic shoes while he slept. Treatment lasted a few months. ((hugs))

MrsT0514 · September 2014

@fredalina‌ I tend to agree with you and its so frustrating. (Lol autocorrect tried to change your name to freaking)

@dunnmommy‌ sorry you guys are still in limbo with diagnosis, but thats great that your son is making great strides in private therapy. What makes my son's case so perplexing is that all his gross motor milestones were on the later side, but still within "normal range" according to the neuro (rolled over at 6 months, sat at 7-8mo, pulled to stand at 10-11mo, cruising at 11-12mo, finally walked unassisted at 16mo). His fine motor skills are age appropriate.

The only thing remaining that we're dealing with is the coordination/balance issues (which weirdly enough can vary a bit from day to day), which our neuro (thru our children's hospital) did not think any type of brain injury (ie mild CP) was the cause. I guess thats why she mentioned the possibility of Devlopmental Coordination Disorder, which usually isn't diagnose until kids are a little older.

So Idk. At our follow up next week, I may ask her to run some bloodwork to rule out any metabolic stuff or infections, and see what she think we should do next.

Unknown · September 2014

This content has been removed.

MrsT0514 · September 2014

@mcrib Its possible. Our ENT did say that he cant yet rule out inner ear stuff that may be causing a type of vertigo (like Benign Paroxsymal Vertigo of childhood), bc at my son's age (20mo) the balance testing can be quite rigorous and probably wouldnt be beneficial at this point in time. So thats still on the table.

At our Neuro appt next week I think I'll definitely have them do some blood tests to rule out infection or metabolic disorders. Thats a simple enough step to take.

MrsT0514 · September 2014

@Usm123‌ I also feel like part of theproblem with our therapy sessions thru EI is that he's getting bored being at home, so he is focused enough. i really liked the clinic we were at yesterday and am excited to get him started there. I feel like he'll benefit from it so much more. Plus I liked the therapists better. They seemed so much more receptive to our needs as a family instead solely focusing on working together amongst themselves.

Now hopefully, our insurance will pick upmmost of the cost so we dont go into the poor house! Money is already tight, but I'm sure we'll make it work somehow. IMO, the cost is well worth it.

Unknown · September 2014

This content has been removed.

Want a personalized experience?

Ok. What sense would you make of this?

Re: Ok. What sense would you make of this?

Choose Another Board

Search Boards