Infantreflux.org | What would you do?

This topic has 12 replies, 1 voice, and was last updated 19 years, 1 month ago by Anonymous.

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September 19, 2007 at 2:53 pm #42921

Anonymous
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Taylor is now 17 months old and does not seem allergic to milk, corn, or corn syrup anymore, no GI upset or hives etc. My question is, she is definitely speech delayed, just babbling no words, we just had EI speech come in for a re-evaulation, her last eval was when she was 12 months and she was hitting all the targets. Well today’s eval showed that she has regressed and what she was babbling at 12 months she is not doing. Of course as a mother worried about autism, but the therapist states she does mimic behavior which early autistic kids do not do and she loves hugs and kisses. She does not make good eye contact unless you are making a big fool out of yourself such as singing songs etc. She response to her name once in awhile but not all the time. She had tubes place when she was 1 y/o but has not had a hearing test since, so we have to get one done to see if she has any hearing problems. My question is when she was evaluated at 12 months she was strictly on soy formula but I have switched her over to whole milk since then, do you think that could have anything to do with things-because I know they say that some diet factors can have big affects on speech and development. Anyways, she is going to qualify for speech therapy for 1 hour a week.

But what would you do-

1. nothing, I’m just over reacting?

2. Switch her to soy milk to see if there is a difference?

3. Wait for the hearing test to see what the results are? a. if normal switch her to soy milk and work with the speech therapist

b. if normal just keep her on whole milk and just work with the speech therapist?

c. if abnormal then we go from there?

Any suggestions? I just don’t know what to do, if I should just wait or try a soy switch? HELP!!!! Most likely a over reacting mother!

September 19, 2007 at 3:13 pm #42923

Anonymous
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i pmed you.

September 19, 2007 at 3:24 pm #42924

Anonymous
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sue, i think getting the hearing test done first before you make any decisions is a good idea. hopefully, she is just working on other areas of developement and letting speech take a back seat. two of my boys did not talk until they were 3. one of them was perfectly fine and made up his own sign language—-he is as sharp as a tack at almost 10 years old. the other one definitely seemed to have something wrong. we thought he was autistic. he had a few other autistic behaviors. we worked with him and he went to a developemental pre-school for two years—he qualified because of his speech delay. he is 18 years old now and relatively normal—-i say relatively because he is a TEEN!!

September 19, 2007 at 4:04 pm #42925

Anonymous
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Sue,
I agree with Christine. I think I would get the hearing test done first and then work with the speech therapist. I do think some kids just take longer with speech. Bryce really didn’t start even making many sounds until he was around 20 months old. He’s just now starting to say a few small words, and I know many kids who take even longer than that. Good luck with the hearing test and speech therapy. I hope you can get some answers soon.

September 19, 2007 at 8:18 pm #42934

Anonymous
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I think that I would wait for the hearing test. If it’s normal then you can go from there. Plus, I would talk to the speech therapist about it. They might be able to tell you if they know of any cases of food causing speech issues.

September 19, 2007 at 8:40 pm #42936

Anonymous
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I agree with what everyone else is saying, do the hearing test and work with speech and then take it from there. Good Luck.

September 19, 2007 at 9:21 pm #42942

Anonymous
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Hey Sue.. just wanted to add that i agree as well. I wouldnt switch too much just yet. I would wait and talk with a speech therapist and get their opinion..

I would def. check out the hearing test as well.. Hopefully there is nothing serious going on…and she will develope the skills for speech in her own time. Albert Einstien didnt talk until he was THREE! So don’t worry. I know as a mom we would all worry about it, but I dont think its autism.. and if it is something, I am sure it could be worked on w/a specialist!

Let us know what the speech therapist thinks and how the hearing test goes!

September 19, 2007 at 9:38 pm #42943

Anonymous
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Thanks everyone! It is so nice to have second opinions from everyone whom I truly trust, it really means a lot to me. I was thinking the same, but I just did not want to overlook anything and wanted others input. Now is the waiting game for the hearing test, Easter Seals is typically very quick with calling for appointments but it just never seems quick enough when it come to your own child! I guess it is waiting for the pot to boil type of deal. Thank you all once again, it really settle me down reading all post, my nerves were really all in a bunch! I’ll keep you posted on how the hearing test went once we actually have it scheduled and completed! BIG HUGS to you all! I love it that you guys are always so understanding and always there in a time of much needed advice!

September 19, 2007 at 10:01 pm #42946

Anonymous
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Sue,

I just wanted to let you know that my son is 2 1/2 and he doesn’t say any words yet. It seems like he will say words and then all of a sudden he quits. But we have wonderful doctors and he has been checked out and there is nothing wrong with him. My two older boys talked early so this has been very nerve racking for me. I can tell you I feel your fear but I will bet that everything will turn out fine.

September 20, 2007 at 7:01 am #42949

Anonymous
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Sue,

I’m sorry to hear that Taylor is having trouble with her speech development. After being on several boards, it seems that this is not uncommon for a lot of our refluxers- especially if they had feeding problems. Our SLP told us that it can take up to a year after tube placement to regain the speech from hearing loss, and then after that they don’t consider the hearing loss to be the cause. I really wouldn’t worry at this point though- I’d go for the hearing test, and wait and see what the speech path says from EI. In fact, I’m all for second opinions because I think that having a good therapist is really key, so I like to look around for a really reputable therapist to also do an initial assessment and see if they correspond. (BUT, I’m really strange, so that’s just me.) The SLP we had also told us that a lot of kids with reflux and feeding problems also have underlying jaw weakness and that their speech doesn’t always develop as quickly, and they may need speech therapy. Hailey is also speech delayed- she talks TONS now, but it’s VERY unclear and hard to understand a lot of what she says. Her speech also has a strange sing-song tone to it that’s kind of wierd. We’re going to get her evaluated soon if it doesn’t start to improve. Try not to worry yourself before you have all the information. I know it’s really stressful. HUGS.

September 20, 2007 at 4:37 pm #42984

Anonymous
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Sorry you are worrying about this… it is so hard to be in that position… so i can tell you what i would do and what our experience has been and see if that helps. Unfortunately, i know that nothign eases the worry, but it really helped me, when i was going through the same with Matthew, to draw a game plan… you have a lot of valid questions in your posts… anyway

What I would do (and this is from me, the big believer in intervention, kind of like Lori LOL)…

1. get the hearing test — does not hurt. If it comes back that she is not hearing well, you may have your answer.. STILL our SLP told us not to trust those tests too much at that age (Our experience — went for hearing test and he scored 100%, i still pushed for the tubes and a couple of days after getting the tubes he said papa and a week later mama… then nothing…. so who knows if he could hear/not hear before?)

2. get any speech therapy that the county is offering. It cannot hurt hopefully it is free, like in NY? (our experience is that depending on who you get, you get different answers… we have had so many speech therapists tells us so many different things about Matthew… I could prob write a book about it)… but most of them work on the same things regardless… (and if you have the right diagnosis, they should be able to help out)

3. Try to speak to the evaluator who did the last evaluation. What did she test? How did she score receptively vs expressively. How are her oral motor skills. Did she test for copying faces/tongue movement in a mirror? did she test with bubbles/other toys… did she do the full eval (ie including full feeding eval?) ie just try to understand how much she really tested… (My experience: our first feeding eval was a JOKE. The guy did not tell me that Matthew was weak and insisted on playing with foods for 4months… then the second evaluation was great, but the speech therapist they sent was inexperienced etc etc)

4. Like Lori said — if you can afford it, do a private eval with someone who is really knowledgeable about speech… not your EI therapists. Get someone who is experienced in Apraxia, Dysarthria and Auditory Processing…. that is what i would look for. That person should be able to tell you if she is just speech delayed (which some kids are — nothing more than that), your kid is not talking because of muscle/neurological issues (the dysarthria matthew has, which is really weakness) or motor planning issues… my experience is that a lot of people will not give you a diagnosis at that age.. especially EI people but the private therapists we have seen will give them to you quickly or at least tell you what they think it is or at least WHAT IT IS NOT… most people will tell you for example they cannot give you an apraxia diagnosis until the kids are older etc… well the 2 people who are very well known in speech world that i have spoken to told me they would be able to tell straight away… so PUSH the therapists to give you explanations…

See where you are after this… we got a diagnosis for Matthew from 2 private therapists and they both agreed on most of the things going on and we got a treatment plan that seems to be working pretty well. (Oh and even when the 2 agreed on diagnosis, they could nto agree on prognosis… so… we just got on with the therapy). Funny thing is that when the private therapist did the eval at 21months, she said Matthew was more delayed than what the EI therapist had said in his eval at 16months old… and i can tell you that i did not agree with this… although you realise that some kids do not acquire speech the same way as others…

On the diet question… we have been there too, believe it or not. When we were getting a diagnosis for Matthew… my suggestion — do not even go there yet… try to find out what a good speech therapist has to say about the type of delay/disorder, if any… having said that, there is a big push to consider diet changes (eliminating casein ie dairy mainly) from the APRAXIA community and to push for some supplements. I can give you info if you want.., but it is another world… for children diagnosed with APRAXIA…

Anyway — hope it is nothing and she comes along… PM me if you want more info or to share experiences. For what it is worth, Matthew did not babble until he was 22months or so and is now doing really well…

matthewmama2007-09-20 16:57:41

September 20, 2007 at 5:41 pm #42990

Anonymous
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Thanks for all the responses, I really appreciate it. Taylor does have tubes but the ENT we took her to never did a hearing test on her before or after GRRR!! Needless to say we switched to a PEDS ENT as suggested by many of you. Sometimes I think her hearing is just fine since she will be laying in bed with the door shut but the moment she hears Alexis laughing in the living she darts right up and starts bouncing on the bed, other times she doesn’t even react to a loud noise or when I’m calling for her. I truly hope she has the same syndrome as her Father/Men selective hearing! I am definitely going to have the hearing test done whenever they call me to make the appointment! In regards to the speech therapist that the evaluation, it was the same one we had for her previously that helped with her eating/sucking or I should say lack of sucking abilities, she also was Alexis’s therapist so I requested for her again. Expressive she was 37% delayed and Receptively she was 32% delayed, I guess not horrible but something I would like to get addressed , the earlier the better! I think I am going to wait on the hearing test, if she passes hopefully she cooperates and she does, I think I will give the EI therapist a few weeks to see if it makes a difference, if it doesn’t I am definitely going to seek out a private speech therapist for another evaluation! With the suggestions from all of you, I think I am going to wait on changing her diet, since she is doing well on what she is eating now, if I make too many changes I will never know what is actually working! BIG HUGS to you all!!!!

September 20, 2007 at 8:11 pm #42998

Anonymous
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Everyone else offered wonderful advice so I just want to say good luck! We had a hearing test done on Sarah before her tubes and I was SHOCKED to learn she did have hearing loss in her left ear. I never would have guessed. After her tube placement we had a follow up hearing test and now everything is fine. You just never know. Please keep us updated and good luck with the speech therapy! (I worked in EI for a year…so did DH…so we’re also big supporters of intervention!!!)
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