https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Wed, 22 Apr 2026 11:17:46 +0000 https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833469 Wed, 11 Jul 2018 20:47:59 +0000 Chuckles 2833469@https://boards.hellobee.com/ <p>So glad that your DD's surgery went well. She's very lucky to have you as her advocate. I hope her recovery continues to go well! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833375 Wed, 11 Jul 2018 12:25:25 +0000 reverie 2833375@https://boards.hellobee.com/ <p>@RKitty: That is tough. I work in hospice and feared those type of issues the entire time we were waiting for the MRI. I've seen a quote that we are the "luckiest unlucky people" which is how I feel. Her tumor diagnosis was devastating and I'm still scared but so much better than what other outcomes could be. </p> <p>@luckygirl: I'll check out those facebook links, thanks! I found one group in there and it's been a bit discouraging as most of the people are still having issues from their tumors. I think recovery varies so differently I admittedly I guess want to hear some "feel good" tumor stories.</p> <p>@psw27: it definitely didn't need to be said I was totally thinking it myself but once enough people tell you it's probably a virus you start to believe it! I think she wound up surprising a lot of people when it really was a tumor just b/c her other motor skills and neuro exams were so normal.</p> <p>@yellowbeach: JPA is her diagnosis per cytology (genetics isn't back yet but I can't imagine it changing). The hope is that surgery is curative but there can be microscopic particles left behind and there is a 15% chance of recurrence unfortunately. I've spent the past two weeks becoming a google scholar on JPA and the number 1 predictor of outcomes for patient's like my daughter is skill of the surgeon! We are very lucky that we live near CHOP and the head of neurosurgery took her case. I'm hoping that means good things but she will have MRIs every 3 months for the next year and then slowly taper down. She isn't considered cured until she has 5 years of clean MRIs. Highest chance of recurrence is in the first 3. I truly had a feeling we were dealing with a tumor and now I have a feeling we're over the hump and won't need repeat surgery but it is still so terrifying to think about.</p> <p>@oskarsmommy: it is so hard. I work in healthcare and must have shared her symptoms with a dozen of healthcare professionals on a social level. NO ONE would say tumor to me. Her symptoms were so mild and transient that everyone leaned toward viral or inner ear. Her neurologist had her on a monitoring plan and I had to call back for the MRI b/c it just didn't sit right. I'm so glad we got in when and where we did. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833342 Wed, 11 Jul 2018 11:24:11 +0000 oskarsmommy 2833342@https://boards.hellobee.com/ <p>I am so sorry you had to go through this. This proves over and over that trusting your gut and being the “crazy mom” is always the right move. This makes me think of something else. A mom in a small FB mom group I am in posted a video of her daughter doing an odd stiffening movement. My son had done somewhat similar things and an infant so I jumped on the thread and posted videos. Several other moms posted a lot of responses saying it may be reflux. In hindsight, the video she posted immediately rang a bell for me (infantile spasms). ONE mom had the nerve to mention it. She took her daughter to the ER and sure enough that’s what it was - IS. It taught me that so often we WANT things to be nothing, for ourselves and for others. But sometimes in order to be truly helpful we HAVE to step up and say the scary thing we may be thinking. </p> <p>I am so glad you caught it early, and good for you rkitty for sharing what you knew - even though it was hard. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833330 Wed, 11 Jul 2018 10:40:17 +0000 yellowbeach 2833330@https://boards.hellobee.com/ <p>@reverie: Sorry to hear about all of this stress. CHiming in as a mommy of a LO with hydrocephalus and VP shunt, so we spend a lot of time with Neuro and Neurosurgery. </p> <p>I think I may have missed something though - what diagnosis did they give her ultimately? Was it JPA? What's the follow-up plan? Any worry for recurrence, or does surgery usually do the trick? </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833304 Wed, 11 Jul 2018 09:33:23 +0000 psw27 2833304@https://boards.hellobee.com/ <p>I'm glad your LO is doing okay! My first thought reading this was a brain tumor but I didn't want to scare you. My cousin had brain tumor when she was 12 and it was similar to your description - vomiting, balance issues, etc. She was also old enough to say she had a headache. She's 51 now! I hope you find the support you need. xoxo. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833283 Wed, 11 Jul 2018 08:53:19 +0000 luckygirl 2833283@https://boards.hellobee.com/ <p>@reverie: I'm glad that they caught and have been able to remove the tumor. I'm sorry that she and your family have had to go through all of this. </p> <p>If you're looking to connect with other people with a similar rare medical diagnosis/experience, Facebook can be a good place to look. I did a quick search and found these ones, that seem to be similar: <a href="https://www.facebook.com/PilocyticAstrocytomaSupport/" rel="nofollow">https://www.facebook.com/PilocyticAstrocytomaSupport/</a></p> <p><a href="https://www.facebook.com/groups/1402635350045407/about/" rel="nofollow">https://www.facebook.com/groups/1402635350045407/about/</a> </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833264 Wed, 11 Jul 2018 00:16:53 +0000 Corduroy 2833264@https://boards.hellobee.com/ <p>@reverie: I’m glad your daughter is doing better. Good instincts. </p> <p>Just this week my next door neighbor told me her son (now 9) was diagnosed with two brain tumors when he was almost 3. One was removed which solved the motor issues. The other was inoperable. We moved in when this boy was five and I never had any idea he faced something like this. He is very careful about helmet use and can't play contact sports but doesn't stand apart from the other kids. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833263 Wed, 11 Jul 2018 00:10:03 +0000 RKitty 2833263@https://boards.hellobee.com/ <p>@reverie: I'm glad you got her in and I hope her recovery is smooth! I'm sorry it was a tumor they found I really thought it be something else too. </p> <p>Unfortantly the local mama's story didn't end well. I didnt post that originally because I try to keep posts happy. They found out it was a stage 4 rare cancer. He was undergoing chemotherapy when he caught RSV and passed away. :crying:<br /> Very sad story. He has a fb group that you might be able to reach the mom through. <a href="https://www.facebook.com/Kainethewarrior/" rel="nofollow">https://www.facebook.com/Kainethewarrior/</a> </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833262 Tue, 10 Jul 2018 22:48:39 +0000 ALV91711 2833262@https://boards.hellobee.com/ <p>Glad to hear she is doing ok and hope the post op goes well. Good that you followed your gut and got in sooner. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833260 Tue, 10 Jul 2018 21:43:00 +0000 agold 2833260@https://boards.hellobee.com/ <p>@reverie: I am so glad your girl is okay. I hope your post op appointment goes well. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833259 Tue, 10 Jul 2018 21:33:00 +0000 Raspberry 2833259@https://boards.hellobee.com/ <p>Wow! I can’t begin to imagine how scary that was. So glad your little girl is ok. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833256 Tue, 10 Jul 2018 21:10:03 +0000 reverie 2833256@https://boards.hellobee.com/ <p>@RKitty: also do you know your local mom's child's diagnosis? I'm interested in hearing more first hand accounts. I've had trouble connecting with people b/c it is so rare. My daughter had/has JPA in her cerebellum and it was hopefully completely resected with surgery. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833255 Tue, 10 Jul 2018 21:08:44 +0000 reverie 2833255@https://boards.hellobee.com/ <p>@RKitty: looks like you hit the nail on the head. brain tumors were always on my radar but I didn't think we'd ever actually have one. also just for completeness sake she had several neuro tests and did very well minus the gait issues. </p> <p>It turns out the vomiting issues were from a spinal fluid back up and not viral. It's been two weeks and I'm still in shock she is going through all this. Only 1200 people under 19 in the US a year get this diagnosis. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833251 Tue, 10 Jul 2018 20:56:11 +0000 Mama Bird 2833251@https://boards.hellobee.com/ <p>@reverie: that's so scary. It's a good thing you followed your gut and got her a scan sooner. I hope she's all better soon! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2833250 Tue, 10 Jul 2018 20:36:47 +0000 reverie 2833250@https://boards.hellobee.com/ <p>Just finishing the story in case google brings someone here but it was a brain tumor. We got an expedited neuro appointment after several teary phone calls and had the MRI end of June. Every health care professional I dealt with from first appointment to MRI thought it was a virus causing swelling of her cerebellum. Brain tumors were on my mind the whole time but are so rare it was still quite shocking to hear. She is recovering well and in general is much better two weeks post surgery than she was before in terms of gait. Trust your gut -- her first neuro appointment was supposed to be thursday and instead we're having our post op! I can't imagine if I had sat on this longer! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823654 Sun, 20 May 2018 18:40:57 +0000 Iced Tea 2823654@https://boards.hellobee.com/ <p>This would stress me out a great deal. I’d see if there’s another neurologist office where you could also get on the list, maybe improve your chances of getting in earlier. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823499 Fri, 18 May 2018 20:00:44 +0000 reverie 2823499@https://boards.hellobee.com/ <p>@Shantuck: the doctor actually put that our request is expedited (which makes me wonder if they do that for everyone....) which means I'm automatically on the cancelation roster. Hopefully we can make whatever time we land on work with schedules! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823398 Fri, 18 May 2018 08:24:15 +0000 Shantuck 2823398@https://boards.hellobee.com/ <p>This is not at all what you asked but would it be worth calling the neurologist’s office and ask if you can be put on their “cancellation list” so that they call you if they have any cancellations/openings in their calendar earlier? I’ve successfully done this multiple times. I once was supposed to have a 3-4 month wait for an appointment and got in 3 weeks later. Just a thought as how to get answers sooner. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823393 Fri, 18 May 2018 08:09:28 +0000 tlynne 2823393@https://boards.hellobee.com/ <p>Hang in there momma! I would almost always err of the side of getting things checked out. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823376 Fri, 18 May 2018 07:29:05 +0000 Mama Bird 2823376@https://boards.hellobee.com/ <p>I hope it's nothing! Is it possible she's clumsier because she's more confident? DD also started walking late (16 months). She was very cautious at first and didn't trip or fall at all. Then she went through a phase when she got more confident, but didn't quite have the skills for it. So many bumps and skinned knees. I was worried for a while, but she got better at walking and stopped falling so much. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823352 Thu, 17 May 2018 22:41:04 +0000 reverie 2823352@https://boards.hellobee.com/ <p>@RKitty: I’ve never been one to have seasonal allergies but I’d really love if that / growth spurt were in general the answer! I work in hospice so my brain goes immediately to the worst case scenario which certainly doesn’t help my mommy anxiety. I’ll be on the lookout for clothing fit that could definitely be related! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823350 Thu, 17 May 2018 22:37:25 +0000 RKitty 2823350@https://boards.hellobee.com/ <p>The fluid in her ears could come and go. It's the main reason I take allergery pills. When I get bad seasonal allergies I can feel and hear the fluid behind my ears it then messes with my balance. So she could have some sort of infection or allergies that cause it come and go. </p> <p>Also my son had a period of a couple weeks where I started to get worried he was tripping and falling alot and like a day later his pants didn't fit any more. After he adjusted to his growth spurt he was fine.</p> <p>I think it's good your getting the ball rolling and keep that appointment in July. And just monitor her closely the next few weeks. If you notice anything else you feel starts to decline then start pushing for answers sooner but right now i think your fine. </p> <p>I tell this not to scare you but to share experience. We have a local mom who over several months noticed her son declining in neurological skills. (Walking, grabbing things, swollowing) Local doctors kept telling her it was normal and he was sick or something. She finally took him to a childrens hospital out of town where they found a brain tumor that had probably been there since birth! You daughter doesn't sound this severe but I think it's good to listen your momma gut and get her checked out. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823336 Thu, 17 May 2018 20:54:50 +0000 wrkbrk 2823336@https://boards.hellobee.com/ <p>@reverie: Oh hmm. Well it may be Fever then that’s related to her stomach bugs? Just throwing out the ear isssue bc my son had a ton of problems from ear infections. I hope you get some answers! </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823332 Thu, 17 May 2018 20:51:59 +0000 reverie 2823332@https://boards.hellobee.com/ <p>@wrkbrk: sorry just to clarify she *had* a lot of fluid in March but as of yesterday it was sadly clear (I so wish it was just an ear infection) </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823331 Thu, 17 May 2018 20:50:42 +0000 wrkbrk 2823331@https://boards.hellobee.com/ <p>Hmm. Ok I’m no doctor but ears seem related to me. Fluid can really throw them off balance. I wouldn’t be surprised if that cleared up and then she got more steady. Good luck mama. </p> https://boards.hellobee.com/topic/26-month-old-unbalanced-neurologist#post-2823327 Thu, 17 May 2018 20:36:13 +0000 reverie 2823327@https://boards.hellobee.com/ <p>So firstly I have an appointment with a neurologist so I'm not asking for the internet to diagnose things but the earliest they can get us in for now is July and I want to crowd source to see if anyone has been here before / something comes to mind to research. </p> <p>My daughter is 26 months old. She's been "slower" to hit milestones but generally gets everything right before the cut off (ie I called EI for her speech and before they could come and assess her she decided to start stringing together two word combos and added quite a few new words). She's never been the epitome of grace but she was pretty "normal" for her age -- she started walking at 15 months.</p> <p>A few weeks ago my husband pointed out that she was less balanced than before. She kind of wobbles and loses her footing and falls more. On Saturday 5/5 it was very obvious and I was upset enough that I decided I was going to call our pediatrician to get the ball rolling on things but then she woke up with a stomach bug on Sunday and her walking was also improved. I decided to monitor more b/c it appeared she was sick and that seemed like a bad time to try and diagnose her. Her walking improved vastly from that Saturday but she still has missteps and baubles. She got a second stomach bug (grr) a week after the first. This time there was some dark green vomit / bile so we called the MD. They brought her in b/c of a lot of random symptoms vs. one solitary complaint. Her suggestion was that her gait was not ideal for a child of my daughter's age but that it wasn't awful and it would be more concerning if there was a decline vs. my daughter just being ungraceful. We watched some earlier videos we have of her and she seems much more confident in february-april videos than she is now.</p> <p>Neurology can't see us until July. Her ears are clear. Just throwing out any relevant information-- we've had an awful winter. She has had 4 GI bugs (we are confident the first two were viral things since they affected multiple people in the house but the last two she is the only one), at her 2 year old well visit the MD said she had so much fluid in her ears that he would have given me an antibiotic if I said she had a fever or was fussy, and lastly she is getting at least two of her back molars now and seems rather bothered by them. I asked the MD about the molars just grabbing at straws and she says it is unlikely to be related but just due to the sudden onset of symptoms and the fact that multiple are coming in around the time things started I have to wonder if they are creating some kind of pressure / affecting her ears.</p> <p>Anyway, that is a novel. I'm stressed there is something wrong with her and I don't have much to lean on now. I appreciate any anecdotes or things to look into! </p>